Being Prepared for Emergencies

I'm sure that all of you reading this will have seen the news reports about Hurricane Sandy, preparing to batter the east coast of the US.

Being in the UK, this doesn't affect me directly, but it does affect many of those that I love, and it reminds me that emergencies are different for those of us with chronic illnesses or disabilities.

Emergencies, when they're not actually happening to me, seem a long way off. Improbable, even. It's that age-old mentality of 'it won't happen to me'. But it might happen to me. Or to you. Really, it might, and there are a few things that you can do to make it less frightening.

If you've been reading my blog for a while, you may know that I have a Big Red Folder (blog post about that here), where I keep my important medical information. At the very least, make sure that you have an 'executive summary' for each member of your family:

Name (including what you prefer to be called - I'm much more likely to respond to Jo than to Joanna)
Address
Next of kin: Name and contact details - try to include someone who doesn't live with you as well, so that they can be contacted if your borough is flattened by aliens, for example.
Current medical issues: Include ALLERGIES and all diagnosed medical conditions, even if they are usually well-controlled. Emergencies have a nasty habit of causing things to flare up.
Medications: A list of all medications that you take - regularly and 'as required' or in emergencies (this could be a repeat prescription form from your GP)
Previous medical history: Significant illnesses, procedures, surgery, injuries
Family history: Keep this brief - just the relationship and names of significant conditions

If your medical conditions are atypical, complex or rare (or all three!), I would recommend getting a letter from the doctor who knows you best, giving information about your conditions and treatment, and including their contact details. Alternatively, you could print off some general information about your condition (try the website for the national association for your condition), and include copies of any helpful medical reports or discharge summaries that you have from your own doctors.

Put all this information safely into a folder, envelope or plastic wallet, including a soft copy on USB stick if you can.

There are lots of different types of emergency, and lots of different types of chronic illness, and I'm certainly not going to pretend to be prepared for every possible incident, but there are things that can be done with relatively little inconvenience.

Things to do before any emergency:

1. Register with your local gas, electricity and water suppliers if you have anyone in your family with medical requirements or limited mobility. They may be able to warn you of any planned outages, provide you with bottled water or power from a generator, or arrange other support in an emergency.
2. If you're in the UK, I would recommend signing up for emergency 999 text messages (emergencysms.org.uk), especially if you have speech or hearing problems, or breathing problems that can make it hard to talk. On this topic (dealing with the ambulance service), you can ask your GP to request a 'flag' for your address, so that first responders have vital details (e.g. allergies to common emergency medications). I would also recommend getting yourself a MedicAlert bracelet, or similar.
3. Keep ice packs in the freezer. Not only are they useful for treating some injuries, they will help to keep the things in your freezer cool in a power cut, or you can use them to keep medications cool. You can also buy 'instant' cool packs.
4. If you rely on any electrical equipment (e.g. nebuliser, feeding pump, IV pump, motorised wheelchair), keep them charged if possible. Either have spare equipment (portable) or spare batteries for an emergency.
5. Try to keep at least half a tank of petrol in the car at all times, along with a basic repair kit, jump leads, a small first aid kit, a torch, a spade, and an up-to-date map.

 In the event of an emergency, you may find that you need to get out of the house in a hurry, or that you have to stay in the house for several days. It's always difficult to remember everything, and this is worse if you (and the people around you) are anxious or hurried.

Things to pack:
Pick a strong bag that is large enough to hold what you need, but small and light enough to carry.  Put your most important items into waterproof containers or ziploc bags, and into a lightweight cooler if necessary.

1. Important medical information folder
2. Basic first aid: Sticking plasters, triangular bandage, elasticated bandage(s), gauze, medicines to treat headaches, sore throats, allergic reactions, bites/stings; tweezers, scissors, sanitary products, nappies (if you have babies), sunscreen. If anyone in your family has sensory issues or migraines, include sunglasses or an eye mask, and ear plugs
3. Medications: I try to pack enough medication to last me for 48 hours. A week would be better, but for me, that brings up a whole other set of problems with being able to carry this kit!
4. Durable medical equipment: If you don't use the equipment regularly, make sure that you know where it's kept and that it's kept in good condition. Make sure everything is charged, and that you have spare batteries. A torch, emergency phone charger, and battery-powered radio should go in this kit too.
5. Disposable medical equipment: Pack enough to keep you going through as many doses of medication as you are taking with you, plus a few spares. Include tubing, syringes, catheters, needles, medication 'pens', dressings. Take everything you would need in the event of pulling out a tube, falling into a (dirty) swimming pool, getting a blocked tube, or getting a hole in any tubing (including wheelchair punctures).
6. Getting rid of waste: Small plastic bags, larger plastic bags (for waterproofing), ziploc bags (for keeping things clean and dry), a sharps bin (if you use sharps)
7. Cleansing wipes, tissues, alcohol wipes, anti-bacterial surface wipes, alcohol hand gel, disposable gloves (and sterile gloves if necessary, e.g. if you have a central line)
8. Monitoring: This includes blood sugar testing if you have diabetes, blood pressure, pulse, oxygen saturations, temperature, peak flow
9. Nutrition: Tube feed, TPN, individually-wrapped snacks, boiled sweets, small containers of UHT milk, bottled water (plus baby formula for babies, and/or food for any pets you plan to take with you), drinking straws (for sharing bottles/cups) and cutlery (a spoon at the very least)
10. ID, bank cards, cash, driving licence
11. Change of clothes for everyone. This can be as minimal as clean underwear, socks and a hat (for warmth or sun protection), depending on what you can carry, and what weather conditions you expect. Include a toothbrush, toothpaste, deodorant.

Emergencies are always stressful and frightening, but if you know that you don't have to run around the house packing, things will be easier. Keeping clean is a major problem, so having plenty of plastic bags and wipes can be useful. They don't weigh much or take up much space, but can make such a big difference in keeping clean and dry, and separating clean things from dirty.

Thinking of all those in the path of Hurricane Sandy.

An Apology, Some Regrets and a New Baseline

Firstly, of course, I have to apologise for having neglected the blog and my readers. There isn't one single, simple reason for this, but be patient with me and I'll try to explain.

The end of August saw the first anniversary of my wedding. As I reflected on the last year, and answered questions from friends about the first year of 'wedded bliss', I found myself overwhelmed by all the things that have happened in that time; all the medical and emotional changes that we've faced.

It has become increasingly clear that my husband and I are unlikely to have a family of our own.

I have a genetic disorder that has an autosomal dominant inheritance pattern. Any 'natural' child of mine would have a 50% chance of inheriting the same disorder. While I don't feel that life isn't worth living, or wish that I hadn't been born in the first place, and while I certainly wouldn't consider this disorder a reason to terminate a pregnancy, it would be irresponsible to plan a family without taking it into account. If a child of mine were to be affected by this disorder to the same extent that I am, I would feel extremely guilty. I have been told by my doctors that it's likely that I would spend much of any pregnancy bedbound, that the baby would possibly (or even probably) be born prematurely, with the risk of uterine rupture, further stroke-like episodes, further damage to my joints and internal organs (including my heart and lungs), and with potential problems for the baby associated with prematurity or rapid labour. Even if I were to 'get through' a pregnancy by sheer grit, determination and obstinacy, it's probable that I wouldn't be well enough to look after a child without a LOT of help.

I do know that other people have managed this, and my doctors have said to me that if it's something that is really, really important to me, they are prepared to work with me to make it happen, but they have all emphasised the risks and potential complications. I know that if, in my heart of hearts, I could not live without being a mother, we could make it happen. I don't feel that way, and though I feel sadness and guilt that I won't have children, won't ever hear the word 'mother' applied to me, won't give my own mother and my husband's parents the opportunity to be grandparents (though thankfully my husband and I both have siblings). My husband won't have the opportunity to be a father unless I die soon enough for him to remarry and have children. Obviously, that's not my preferred option.

Things recently have been bad enough that even the thought of starting a family has been pushed out of my mind. I can barely lift the kettle three times daily, let alone a child. At first, I assumed that I'd overdone it, causing extra symptoms, but it's now clear that this is probably my new 'normal'. Not only is my baseline considerably lower, causing more symptoms and requiring higher doses of medication, but my ability to handle any activity has dropped significantly. I went to a beautiful wedding ten days ago. I was thrilled to be able to celebrate with a close friend, and rested carefully in the run-up to the ceremony and reception. I timed my medications and rest periods so as to be as well as possible. I 'survived' (and loved) the day, but it knocked me far, far harder than I could have anticipated. I was totally bedbound for a couple of days, and was unable to walk even tiny distances within the house, having to lie flat on the sofa or in bed. My symptoms were completely uncontrollable, even with maximum doses of breakthrough medications, and this has only improved a little bit after a full ten days. I'm used to having to pace myself, and used to having to pay for any fun that I have, but this change is frightening for me.

There is still time to recover, given lots of rest, extra medications and IV fluids, but I'm scared that this might not happen.

There are so many things that I want to do. There are so many people that I love and I want them to be able to share my life. But I have so little to give. So little energy. I wish that I could give more, but everything I have is taken up with just surviving. The little that I can give to my friends - an occasional visit, postcard or telephone call - seems so inadequate. I am so grateful to my friends and family. They have kept me going, kept my spirits up through all manner of difficulties, and remained loyal and loving despite the hospitalisations, cancelling plans, and all sorts of other difficulties. I wish that I had some way to let them know of my gratitude, or to uphold my side of the relationship; to give back even just a portion of what I am given.

It would be fair to say that I am struggling at the moment, both emotionally and physically.

Naturally, I am a pragmatist. Things are the way that they are, and if I can't change things, I may as well get used to them and see if I can enjoy things as they are, rather than as I would prefer them to be. I know that things will be ok, but change is hard. Physical deterioration is hard. My failure to be a good wife, daughter, sister or friend is hard. But life is worthwhile. I love the world in which I live, and am grateful to have the opportunity to experience things and spend time with those I love.

This is all a part of my journey. Thank you for travelling with me!

Inspirational Poetry and the Ugly Side of Chronic Illness

I can't help but cringe when I see poetry designed to inspire and uplift. I often feel as though this belittles (in twee, and often tenuous, rhyming couplets) the strength that it takes to go through difficult situations.

Living with a chronic illness is not pretty. Things that are normally taboo can become a part of everyday life. Diarrhoea, constipation, incontinence, loss of libido, hirsutism (excessive body hair), mental health problems. I find myself concealing the ugly side of my illness from those around me - protecting them from the smells, the mess, the oozing, the unpleasant procedures, the intrusive, bitter, angry and desperate thoughts.

I don't want people to know about the ugly side of my illness. I don't want pity, and I don't want them to feel disgusted by me, or by my illness and its effects. So I present an airbrushed picture of myself to the world. I gloss over the parts of my life that might cause people to feel discomfort, censoring the scenes in which I scream with pain, those in which I sit hunched over a pile of cushions, sick bowl clutched in hand.

I don't want these things to become the focus of my life. I want to fix my thoughts on the things that make life worth living, despite the ugly bits.

But however much I may want to think only about sunshine, lollipops and rainbows, cake, shoes and lipstick, there is urine output to measure, pus to wipe, dislocated and deformed joints to reduce.

These unpleasant things tend not to make nice poetry.

So we write and quote nice poetry that talks about strength and overcoming adversity, and use words like 'battle' and 'trials' to convey, in a rather abstract way, the unmentionable things.

I'm sure this works to inspire some people, but I would really rather not think of my life as a constant battle. I don't believe that I'm being tried or tested. I'm not going to overcome anything. All I can do is live life as well as possible, enjoying the good bits and surviving the bad. There isn't going to be any glory at the end of it all; there are no medals in this game.

Of course, my cynicism about inspirational poetry may also come from the fact that I grew up with an amended version of 'Don't Quit':

When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile but have to cry.
When cares are pressing you down a bit
Don't complain to me - I don't give a sh*t

Killing Season (Patient Survival Guide)

August is often jokily known as Killing Season.

Newly-qualified doctors almost all hit the wards on the first Wednesday of August. Most of the other grades of junior doctors also start new jobs at this time. While this makes the logistics of medical staffing simpler, it can be a scary time for patients, especially those with rare/complex conditions.

I'm absolutely not trying to knock junior doctors. They have all made it through medical school, through written finals and clinical finals. They are generally bright, interesting, personable and sensible. They work long hours in a demanding job, often with little support or appreciation.

Medical textbooks are often very thick - there are an awful lot of different conditions out there, and there is no way that even the best junior doctor can know everything about every condition. I'm surprised if my condition gets more than a fleeting mention (if that!) in most textbooks. I certainly don't expect very junior doctors to know about my condition, understand how it affects me day-to-day, or make long-term treatment plant. That's why I have specialists (lots and lots of them)!

Even if your new doctor has memorised the textbook from cover to cover, chances are that they've never actually met someone with your rare condition. They probably don't know many of their colleagues (or how to get favours to jump the queue for scans, other tests, or specialist review), may not be familiar with the computer system, prescribing system, or test-ordering system. They may not even know their way around the hospital.

Last year, during Killing Season, I met a newly-qualified doctor at my local hospital (a large London teaching hospital and major trauma centre). He had been called to see me because my peripheral IV line had blown (again). My veins are notoriously rubbish, but I really needed the access to be able get a medication that was only just keeping me out of Intensive Care. This doctor looked carefully for a vein, and couldn't find one. I told him that I was happy for him to have three attempts, but after that I would like him to ask someone else to try. He said to me, "There isn't even anywhere to try". Fair enough. He's not the only person to have said that. But what he did next scared me. He packed up his cannulating supplies, and walked off, telling me over his shoulder that he didn't think I needed IV access after all. Needless to say, I deteriorated, and ended up in Intensive Care.

It's entirely possible that I would have ended up in ICU anyway, but the experience frightened me.

So, a few tips for people like me on surviving the Killing Season:


1. Do everything possible to avoid an emergency admission at this time of year
Avoidance is the best possible technique - give the new doctors a chance to settle in and get confident. Even if these techniques only delay the inevitable, buying time in this situation is a Good Thing.
- Talk to your specialists in advance, and ensure that you have an emergency treatment plan
- Check your medications and make sure you have supplies of emergency medications (check the expiry date!)
- Make an appointment with your GP for the start of August. If you don't need it when the time comes, you can cancel it, but it will save you having to go to A&E if you have a flare-up and can't get an appointment to see your own doctor

2. Be prepared
- Make a list of all your medications, including generic name, dose, frequency, route, and the reason you take each medication
- Make a list of all your specialists and their contact details
- Write an executive summary of your medical history. This is a quick 'basic guide' to your conditions. Include your diagnoses (with a short explanation of how you're affected), any major hospitalisations, procedures or surgeries, and any relevant family or social history
- Get a printout of blood test results from when you're stable. If there are particular things that change when you're unwell, also get a printout from a time when you were unwell

3. Be kind to the new doctors
- Don't be sarcastic or aggressive if they ask questions that you think are silly - be grateful that they're asking questions, and use this as an opportunity to educate them about your condition
- Don't be upset or angry if the new doctor is patronising. They don't know your background, and will often aim for the lowest common denominator. Yes, it can be frustrating to have doctors talk about 'a little tube' or 'the tablet for your waterworks', but be patient - they'll learn as they get to know you
- If you want direct answers, ask direct questions - if you like to know specific blood results, ask
- This doctor could be your best advocate while you're inpatient - they're on the wards most of the time, are the ones that see all your blood results (and other test results), will write your discharge paperwork, and will perform most basic procedures (and request the more specialised ones). If they're on your side, you'll have a much easier time
- Don't expect the new doctor to spot it when things are deteriorating or improving. This is not a test, and there are no points for detecting 'hidden' symptoms and signs. If you notice something, tell your doctors. If you know how it's been treated in the past, or what it means, discuss this openly with the doctors
- Make a plan and agree it with the team (including your specialist) so that the most junior new doctors are not expected to make decisions about long-term care or discharge. Agree specifics, e.g. a peak flow of 75% before discharge and nebulisers not used more frequently than four-hourly, being on 'home medications' for 24 hours before being allowed home, or being able to walk a certain distance without severe pain

4. Don't panic
- If the new doctors are not picking up the hints that you are a well-informed patient with a complex condition and long medical history, and don't seem prepared to treat you as a member of the team, don't give up - talk to other members of the team, or other medical professionals (e.g. dieticians, nurse practitioners), and see if they can lead by example, by involving you in decisions and talking to you on a level
- If the new doctor is unwilling to prescribe strong painkillers or other potentially addictive medications, be understanding - not everyone takes these medications legitimately. Ask for a review by one of their seniors, or by the pain team (especially if they know you and your medical history)
- If all else fails, bite your tongue and grit your teeth when the new doctor is around. Not all doctors are cut-out for dealing with complex patients. Make only as much fuss as you need to be safe while you're in hospital, remembering that the problem doctor will probably move on to the next job in 3-4 months

Above all, be understanding. Your doctor may not have had a lunchbreak or toilet break; they might have been due to go home over an hour ago; they might have just been to an unsuccessful and upsetting crash call. They may be exhausted, overwhelmed, in a new city, far from friends and family, and under pressure from all sides.

Be prepared for things to take a little longer than usual, don't expect the newly-qualified doctor to make big decisions (like allowing you to go home, unless already agreed with the consultant), don't embarrass the new doctor in front of the consultant (no matter how tempting), and don't be rude or uncooperative. If you can educate the new doctor about your condition and treatment plan, they may turn out to be a valuable member of your team.

Good luck!

Hospitals are for the Healthy

As I write this, I am an inpatient on an Acute Medical Admissions Ward. This is a ward designed to take people straight from the Accident & Emergency department and care for them until they are well enough to go home, or until they move on to another, more specialised, ward. There are several teams of doctors that care for the patients on this ward, all led by Consultants who specialise in Acute Medicine.

I can't help feeling that this set-up isn't a very good 'fit' for me.

Depending on how specific you want to be, I have at least six conditions listed in the 'diagnosis' section of my patient record, none of which are 'acute'. Sometimes I have an acute flare-up of, say, asthma, for which I could legitimately be admitted to this ward. However, the acute flare will always be on a background of chronic 'difficult' asthma, which is a poorly understood condition, even among respiratory specialists.

Unfortunately, admitting me for an acute flare-up of asthma is not as simple as admitting someone who is otherwise well. My other conditions still have to be treated and monitored, and sometimes the treatment for the asthma must be modified because of my other conditions and vice versa. This is not always as straightforward as it sounds, and often requires input from multiple specialists.

Usually I am transferred quickly from this admissions ward to a more specialist (respiratory or gastro) ward, where I am much more at ease, but for some reason that hasn't happened this time. Which may be because I have an infection, and that was seen (in isolation from my other complex conditions) as a simple, acute problem.

Which it isn't.

Anyway, I digress. My point was really just that so much of medicine is geared towards admitting people with acute conditions, restoring them quickly to their previously healthy state, and allowing them to go home. Those who don't fit this simplistic mould must be elderly, and therefore can be transferred to the Elderly Care service.

The paediatricians are used to seeing children with complex medical needs, and paediatric units are often shining beacons of multidisciplinary care, but somehow this fizzles out as the patients get older. I know that there are other young-ish adults out there with chronic/rare/complex conditions. I read their blogs and follow them on Twitter, but I don't see them in hospitals, and I don't see a system that is designed to care for them.


I see a system designed for people who can walk down long corridors for miles and miles, don't require a special or complex diet (vegetarian is probably manageable, but low-FODMAPs or a ketogenic diet - you must be joking!), don't need snacks outside set mealtimes, need minimal help to dress, feed themselves or transfer, can wash independently (in a shower cubicle without a seat), don't have severe allergies to air-fresheners/cleaning products, can hear their name called from behind a screen in a busy clinic, can remember the names and dosages of their medications... I'm sure you can think of so many more examples.

Hospitals are designed for healthy people, and I say we need a rethink.

Each Day at a Time

I feel embarrassed when people say that they find me inspirational, or that they admire my courage. I don't feel as though I deserve this sort of praise, and I certainly don't feel brave, or even anything out of the ordinary.

Having said that, I'm thrilled to be able to reach out to people in a similar situation (or not), and have made some great friends through this interweb malarky.

When I see my own story in print, reading back through this blog, through my medical folder, or speaking to friends and family about some of the events of the past, it does seem almost too much to bear. Certainly, taken all at once, it sounds impossible that anyone could go through these things and come out the other side, relatively unscathed.

What this doesn't include is the many good days that I have that make the difficult stuff fade into the background. I have been out of hospital for over four weeks now (not including the three A&E visits when we were trying to work out if my line was infected, or if I was allergic to one of my IV medications). It's not that I forget the bad things - after all, I have scars, tubes and a house full of medical kit to remind me, but there are so many things that balance out the bad things.

Each of us assigns 'weight' to the things that happen in our lives. I try to assign as little weight as possible to hospital admissions, procedures, surgery, and other things that are Not Fun, and assign much greater weight to the Good Things in life.

Of course there are times when I am absolutely overwhelmed by the things that are Not Fun. So much so that life can feel a bit miserable. But these days pass. They may feel long and impossibly hard, but they pass.

And the Good Things? These may be things that many of you wouldn't notice, and that certainly wouldn't brighten your day, but I need these things - to notice them and register them as important in my memory so that the balance of events in my life tilts towards the positive.

I wouldn't describe myself as a natural optimist (Optimists live longer than pessimists - "Serves them right" say the pessimists), but I don't want to waste this life by focusing on the negatives. There are enough bad things without making them worse by dwelling on them!

If someone read back all the difficult things that I have been through in the last couple of years, I would agree that I would need a huge amount of courage to get through such ordeals. The reality is that I don't go through it all in one go. I have time to catch my breath, gather my thoughts, and have some fun before heading back unto the breach (dear friends). I suppose it's a form of denial or dissociation. I push the difficult things to the back of my mind, focus on the happy times and good people, and get on with life - one moment at a time.

Remember this when life seems too much to bear. Each of us has our own burdens to carry, but focus on the happy moments: strawberries warm from the sun, the weight of a sleeping cat and the warmth of her contented dribble, a favourite song on the radio, the smell of cake fresh from the oven. Individually they may seem small in comparison to everything that's wrong with the world, but as I practise more and more, I find that they matter more and life seems better as a result.

The Pain Olympics

I've written about this before, so forgive me if you're bored of reading about it, but it's been on my mind. And hey, it's topical (35 days to go until the real olympics). Apologies if you're heartily sick of the olympics. Obviously, this isn't really about sport, so read on.

What I mean by the 'pain olympics' is the competitiveness that I've occasionally witnessed from other people with chronic illnesses or disabilities, as though there's a gold medal for the 'most disabled'. The conversation might go something like this:

Person 1: I am paraplegic (paralysed from the waist down). This is the worst thing that has ever happened to me.
Person 2: I am tetraplegic (paralysed from the shoulders down). You're hardly paralysed. Call that an injury? It's just a slap on the arse. Get yourself a band-aid and a cup of tea and you'll be fine.

With some paraphrasing, this is a conversation that I have heard many times in real life.

I have to admit that it's tempting to squash the complainers. The people who have a cold and whine for a week. A broken toe? A cut that needed *gasp* two stitches? There are times when I want to tell them to look around and try to gain some perspective; to tell them that they have no idea what 'serious' pain is like.

 But I don't.

Why?

Because where do you draw the line?

What counts as serious and 'worthy' of sympathy? There will always be someone in a worse position - more paralysed, in more pain, more limited by their disability, in hospital for longer, requiring more care or more surgical intervention. There will always be someone younger, more courageous, more inspirational; achieving more against the odds.

Complainers, we love you and want to be supportive, but think carefully about what you're saying, and who's on the receiving end of your whining. Telling someone with digestive tract paralysis who is totally unable to eat about the awful morning sickness that is putting you off your organic muesli may not earn you much sympathy.

Sick people, try not to be too judgemental. Imagine how much we could achieve if we supported each other instead of thinking up new and original cutting remarks to put people in their place if they dare to complain about something as minor as, say, childbirth.

For me, the progression of this illness is the worst thing (or one of the worst things) I've ever experienced. I know that there are people in a worse position than me, and I can't imagine how strong they must have to be to get through each day. I rely on these people to inspire me to find the inner strength that I need to seek out the joy in life when it seems impossibly hard. I am so grateful that they don't belittle my experience, though it's nothing in comparison to what some of them are living through on a daily basis.

There is no gold medal for having the most serious illness. The only achievements in life are those we earn, despite our circumstances, not because of them.

Life-Limiting Illness

One of the things that has really hit home over the last few months, as I've spent so much time in hospital, is that my illness is progressing. I have known for a long time that I probably wouldn't live to be 100 to receive a telegram from the Queen (or perhaps King, by then!), but with each new problem, it seems increasingly likely that I may be lucky to make it to 50.

I've lived with severe 'brittle' asthma for almost all my life. I also have severe allergies. Either of those could kill me. While thatt makes it a bit scary when I have an asthma attack or anaphylactic reaction, most of the time I can forget about those and put the thoughts of death to the back of my mind.

More recently, as my GI tract has shut down, my autonomic dysfunction has become more pronounced and my blood sugars have become more difficult to control, I have needed more day-to-day medical support.just to remain stable. I have a jejunostomy tube for medications and low-volume feeding, and a Hickman line (permanent IV line) for medications and IV fluids. My team are gearing up to start me on parenteral (IV) nutrition, which carries with it many risks. Risks of bloodstream infection (septicaemia), liver damage and blood clots, to name just a few. I know that these risks are small in comparison to the guaranteed complications of starvation and malnutrition, but they are still significant.

I can accept the restrictions that my illness has placed on my life. I am still so grateful to be alive, and to have the opportunity to experience this wonderful world. But I don't feel ready to die. Not now, and not in five or ten years. Probably not even in 20 years. There are still so many things that I want to experience. I want to grow old with my husband. I want to see our friends' children grow up, and to have nieces, nephews and godchildren, and to be there for them. I don't want to miss the conversations, the celebrations; even the bad times. I want to be there to comfort my husband, friends and family; to grieve with them in the sad times and rejoice with them in the good.

I am not afraid of death. I just don't feel ready to stop living.

My husband and I are very open with each other about this. We both know that I have a life-limiting illness, and we live accordingly. We seize our opportunities when they arise - who knows what might be impossible for me by next year or the year after? We talk about funeral plans and end-of-life decisions for both of us. We discuss the things that are important to us about medical care, our thoughts on remarriage, what we want to happen to our bodies after death, and how we want to be remembered.

During one of these conversations, I asked my husband how he copes with the thought that I will die before I'm old. His response?

"I will love you for as long as I have you. And then a bit longer."

Milestones

In some paediatric cancer units, the children are allowed to choose a bead for every medical intervention - each blood draw, chemotherapy dose, x-ray, etc. is recorded onto a long string of beads: their entire cancer journey mapped out in bright colours.

I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!

I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.

This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.

I think now is the time to add the next bead to my bracelet.


These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.


For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!


This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.

My lifelines - my hope for the future.

Life's Too Short

On days like this I feel very glad that I'm not a health professional.

I strongly believe that people are entitled to the same quality of care, regardless of politics, social status or the cause of their condition. And yet I can't help feeling anger and frustration when I see people in hospital with me, apparently hell-bent on self destruction.

I can't help but think of the people I know who live so fully despite failing bodies - friends who have fought with everything to achieve their dreams in the face of unbelievable adversity. I think about the joy that these friends wring from every last little drop of life, despite knowing that life will be considerably shortened by illness, and the generosity with which they share their zest for living with those around them.

I can't help but think of the things that these people would do if they were given the opportunity to inhabit healthy bodies, like the ones that the people around me are destroying. It would be unfair of me to suggest that everyone should seek to change the world in big ways just because they have a strong and healthy body, but I wish that I could show these people how lucky they are.

I wish that I could make them appreciate the pleasures of eating good food in moderation, of having limbs that support their weight without pain; the satisfaction of a deep breath, and of the feeling of sun against bare skin. I wish that I could encourage them to make the most of every conversation; every sight and sound and touch and smell. I wish that I could give them some of the enthusiasm and love of life that so often comes to those of us that are constantly reminded of how short and precious life can be.

I resent the casual way in which some of my fellow patients treat their bodies, hardly seeming to care whether they live or die, and I feel angry that they've brought suffering on themselves by smoking and drinking and taking drugs and eating excessively, but most of all I feel sadness for them and all the things that they're missing.

Ferris Bueller got it just right when he said, "Life moves pretty fast. If you don't stop and look around once in a while you could miss it."

Visible Reminders of Illness

Every so often the question arises about whether it's 'better' to have a visible illness or an invisible one.

Outward signs of illness can be really helpful to remind others of our limitations - my joints may be screaming in pain, I may be nauseous, dizzy and on the verge of fainting, but these things are all easily overlooked if people aren't suspicious and/or don't know me. Because I tend to smile a lot, even the doctors treating me can get quite a shock when my test results start to come back showing me as much sicker than they expected.

I don't like to tell people when I'm not feeling well. In fact, some of the time I don't even admit to myself that I'm not feeling well. Sometimes this backfires on me, meaning that I try to adjust and adjust and adjust my perception of 'my normal' until it's completely unavoidable.

Over the last couple of months I have spent more time in hospital than out of it. All of a sudden I have quite a lot of very visible signs that all is not right with my body. I have a permanent IV line sticking out of my chest, which is used to provide constant fluids, and through which I will shortly be receiving most of my nutrition. I'm waiting for a feeding tube into my small intestine, which will be used for small amounts of nutrition and some medications. My doctors have started to talk about the need to replace my manual wheelchair (which I only use part-time) with an electric wheelchair.

It would be very easy to think of this as reflecting a serious decline in my physical health. What I'm trying to do instead is be grateful that my body is now receiving the support it needs in order to function. I have been mostly housebound and constantly symptomatic for longer than I like to admit. I hope that these new interventions will improve my quality of life and allow me to get (and stay!) out of hospital.

Of course I'm still a bit scared of looking after the new tubes and handling new medications and processes. It will take time to adjust to the way my body now looks, and to having a constant companion in the form of a feeding pump to carry around with me. I still need to learn how to explain the changes to the people around me, and of course I'm still grieving for the loss of my ability to eat normally, and all the social changes that brings with it.

But essentially I'm still me! I might even be a more energetic and rosy-cheeked version of me once I get some decent nutrition. I'll certainly still be wearing lipstick, nail varnish and beautiful shoes. Most of all, though, I will be grateful for the continued opportunity to live this wonderful and precious life.

Is it ok to be scared?

Of course it's ok to be scared.

Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.

The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.

 I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.

One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.

Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living despite the condition.

Fear is one of those things that can seriously get in the way of living a productive life despite illness.

For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.

I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!

Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!

Am I still scared?

Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.

Courage

A favourite quote of mine states that, "Courage doesn't always roar; sometimes courage is the small voice at the end of the day saying 'I will try again tomorrow'." (Mary Ann Radmacher).

This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.

My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.

Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.

Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?

Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.

Being kind to myself

I have been feeling sad since I got home from hospital at the end of last week.

Instead of feeling grateful for the delicious soups, smoothies and ice lollies I can eat, I have grieved for the things that I can't eat. I stood in front of the sandwich counter at my local shop yesterday and sobbed about not being able to eat the cheese and pickle that I craved.

Instead of feeling grateful for my big, comfortable bed and fluffy pillows (and the wonderful husband and cat that share the bed with me) I resent my 'snuggly prison' and dwell on the places I would rather be. I think of the exhibitions I'm not visiting, the full-time job I'm not doing, the friends I'm not seeing.

My hair is falling out in clumps and the little that I have left is dry and frizzy. My nails are cracked and brittle, flaking and ridged. None of my clothes fit because I have lost so much weight in the last couple of months. Even the beautiful lingerie that I wear to feel secretly sexy under my comfortable, disability-friendly clothes no longer fits properly. I feel sad to be losing the curves that have defined my body shape for so many years. 

Deep down, I know that this isn't a helpful attitude, but how to change things for the better?

First of all, I have decided to take some time to look after myself. I don't know why I am so much harder on myself than I would be if it were one of my friends in this situation, but I am. That has to change - charity begins at home, right?

Where do I start?

1. Take a long, hot bath
2. Paint my nails
3. Smother myself in my favourite body lotion
4. Put on my prettiest pyjamas
5. Play some feelgood music

That done, I'm ready to adjust my attitude.

I feel sad because I can't eat the things that I want to eat. I can't change that, but I can decide to appreciate the liquid diet that I have. So many people with the same condition as me are not able to eat at all.

I feel sad because I am stuck at home and isolated. So, I need to invite some friends round! A friend who lives nearby dropped in today just on the offchance that I was home and free. It made my day. It wasn't an issue that I couldn't eat, or that I couldn't do much more than sit. We chatted and laughed, talked about books and politics and husbands, listened to music and planted seeds. My friend went home after a couple of hours, leaving me feeling more uplifted than I have felt in weeks.

It's very easy to become isolated when even getting dressed is a chore, but I'm beginning to realise that my soul craves company.

So, my first new resolution is to make sure than I see someone other than my husband at least once a week. I'm not going to beat myself up if I don't look perfect with freshly-washed hair and a well put-together outfit, or if we don't do anything more than watch a film together or even just sit in the garden with the cat and the newspapers.

My second resolution is to wear lipstick At All Times. I love lipstick. It makes me feel confident. I talk a lot about my Brave Face. This is the face that I present to the world, that can deal with the medical world and all its pessimism. Of course it slips occasionally, and I'm not saying that it's not ok to cry sometimes, but lipstick helps the Brave Face to stay in place when I need it.

Thirdly, and finally, I am going to ask for help when I need it. I love having the opportunity to help others, so why do I find it so hard to admit that I can't get through this alone? 

1. Spend time with friends
2. Wear lipstick
3. Ask for help

Simples!

Health Update (and soup recipe)

I am currently in the middle of a big flare-up of gastroparesis, which started about two months ago. Prior to this flare, I could eat small amounts of most things, and though I often felt nauseous, bloated and uncomfortable, these symptoms were controllable with medication and other techniques. Currently, I'm not able to eat anything solid, and have just spent a week in hospital, where I had some injections of Botox into the lower opening (pylorus) of my stomach. Normally the pylorus holds the stomach closed until the food has been churned and mixed enough for it to be allowed to continue on its journey through the digestive system. The Botox relaxes this muscle, meaning that the food doesn't get stuck in my stomach, but can just drain through by gravity.

I have been advised to stick to a liquid diet, at least for the next few weeks, until we know how effective the Botox has been.

I've lost quite a lot of weight since the start of this most recent flare, so my Gastro team (especially my wonderful dietician) are keeping a close eye on me.  It doesn't help that I was already deficient in iron, vitamin D and vitamin B12 - that means I don't have the luxury of a 'nutrient store' to keep me going while I'm not able to eat much. My dietician is watching over me like a hawk with the intention of starting tube feeding as soon as it becomes medically necessary. What we don't want is for me to get to a dangerously low weight (with associated nutritional and electrolyte deficiencies) before anything is done. Having said that, I don't really want to be tube fed at all, either through a temporary NJ tube (from my nose, through my broken stomach and into my small intestine) or through a more permanent tube (PEG-J or PEJ) that would go into my small intestine directly through the skin on my abdomen.

I'm not saying that I can't see the advantages of tube feeding - of course I can. It would take away the pressure of constantly pushing myself to eat and drink despite symptoms; it would give me a way of getting enough calories and other nutrients relatively easily; would stop the weight loss. But it also means a surgical procedure (for the PEG or PEG-J), a tube going into my body 24/7, having to carry a pump and feed around with me (at least initially, if I need to run the feeds during the day as well as overnight). And, of course, it means another visible reminder of what this illness is doing to my body.

So, for now, I will continue to eat and drink as much as I possibly can, and will see what happens.

While in hospital, I couldn't help noticing that almost everything offered to me was sweet. Fortisip milkshakes come in a range of sweet flavours (mocha, chocolate, strawberry, forest fruits, vanilla), and the vitamin/protein-enriched juices are much the same. When my blood sugar was low, I was offered Lucozade and glucose tablets. I have found myself desperately craving other flavours - bitter, sour, salty.

The obvious answer to this (apart from drinking gherkin juice and licking salt and vinegar crisps) is soup. Now that I'm home, I have access to real ingredients, and I am looking forward to eating a range of delicious and varied soups. Last night I had roast butternut squash, carrot and coriander soup. Today is hot and sunny, and just screams 'Gazpacho'! I'm not going to argue with that. I love gazpacho anyway, but the thought of it now, after a week of simple, repetetive flavours makes me want to dance with excitement.

People have been kind enough to share their favourite soup recipes with me via Twitter and email, so I'm building up quite a list. From initially feeling a little bit overwhelmed at the thought of eating nothing but soup, I'm now starting to see the possibilities. From silky-smooth leek and potato to the sharp, cold gazpacho, elegant French onion soup, with its dark, caramel undertones and spicy Thai soups, rich with coconut milk and chilli. This doesn't have to be a limited diet!

The recipe that I'm using for my gazpacho is from Sarah Raven's Garden Cookbook. It serves 6-8 people at normal size portions. Obviously, I will be freezing most of mine!

Ingredients:
3-4 thick slices of slightly stale white bread, crusts removed
2 cloves of garlic
Generous drizzle of olive oil
1 1/2 tbsp red wine vinegar
675 g tomatoes
2 sweet red peppers (from a jar, or roasted and skinned)
1 large mild onion
1 small cucumber
425 ml tomato juice
Salt and black pepper
A few fresh chives

Method:
Tear the bread into small pieces and put them into a large bowl.

Crush the garlic and add it to the bread. Add just enough oil for the bread to absorb, and then stir in the vinegar. Skin, deseed and chop the tomatoes.

Chop the peppers and roughly chop or grate the onion. Deseed and chop the cucumber. Add these to the bowl and mix well. Add the tomato juice and season with salt and pepper.

Blitz the whole thing with a stick blender, or put the mixture into a food processor and process until smooth.

Check the seasoning and add iced water to get the consistency you want. Chill and serve very cold, with a few fresh chives chopped over the top to garnish. 

Acute and Chronic

After writing the last entry (about action plans - here if you missed it), I continued to think about what happens when chronic illnesses flare up enough for me to need help. How to identify the acute exacerbations of my chronic conditions and separate them out from the normal fluctuations of the conditions.

Actually, with asthma, it's relatively easy because there's something to measure. I can stagger into my local A&E and tell them (in between gasps) that my peak flow is 100, and everyone will agree that I need to be in hospital.

With other conditions, though, trying to determine when I need emergency help can be like trying to pin a tail on a moving target. For the record, I definitely do not try to pin anything onto my cat, when she is moving, or otherwise.

Soon after my most recent gastroparesis flare started, almost six weeks ago, my GP recommended that I needed to go to hospital for IV fluids and IV antiemetics (anti-sickness medication) because I had only been managing to keep down about 200 ml per day, was feeling dizzy, and was vomiting. About a week later, we had the same again - I was still vomiting, still struggling to keep fluids down, still feeling dizzy, and was only passing water about once in every 24 hour period.

Almost six weeks on, little has changed. I spent all day yesterday lying absolutely flat in bed because I was so dizzy and nauseous, only getting out of bed to vomit. Today is much the same, though I'm horizontal on the sofa for a bit of variety.

My gut feeling is that I need to go to A&E for a top-up of IV fluids and some antiemetics, but there's no objective measure to which I can point to say why today; why now.

I feel constant, severe nausea, but I felt that yesterday and the day before. I have been nauseous, to some degree, for several years. Why is today different?

I have struggled to take in more than a few hundred calories (most of which I vomit back up) and feel very dehydrated. But I've averaged 500 kcals per day for almost six weeks now. What's so special about today?

My blood pressure is low and my heart rate is high, making me weak, shaky and dizzy - that delicious combination of autonomic dysfunction and dehydration. But I was dehydrated yesterday. There is no measure of dehydration that can tell me why today is the day that I think I need help.

I could wait until tomorrow, but even tomorrow there will still be no standard; no bar below which I might fall, telling me that I must go to hospital. My symptoms tomorrow will probably be the same as my symptoms today, and my uncertainties will be the same.

I picture myself on arrival at the hospital:

Nurse: And how long have you been feeling like this?
Me: About six weeks
Nurse: And why have you come to us today?

That's the question I can't answer. Yes, things are bad; they're worse than yesterday and the day before, but could I continue at home? Yes, I probably could. Would I feel better after some fluids and medication? Yes, but I managed without them yesterday and the day before. It's like playing a giant game of chicken with my health.

I wish that there could be a measurement that would indicate exactly what my body needs. Like a petrol gauge on a car. I feel as though I'm currently running on vapour, but I have no way to check. At a better, calmer time, I need to discuss with my GP and dietician and come up with an action plan, similar to the one that I have for asthma, so that I know, without doubt, when I am safe to continue to cope at home, and when I need help from the professionals. Oh, and we need to come up with a better long-term management plan so that my gastroparesis is better controlled and I don't keep returning to this situation of 'firefighting' the acute problems.

Presently, in the absence of better measurements, I turn to social factors. Do I have important hospital appointments that I need to attend? Do we have plans to see friends or family? Is there anything really important that I need to do in the next 24-48 hours? Can I get to the hospital? Is it raining? Would it be easier to wait until tomorrow?

Applying this to today, I'm supposed to be celebrating my birthday tonight (with Richard) and tomorrow (with my family). As unwell as I am feeling now, I would rather be in an uncomfortable bed in hospital receiving IV fluids and IV antiemetics, surrounded by noisy, drunk and disruptive patients than struggling to stay upright and awake, and not vomit while 'celebrating' with friends and family. That a hospital visit sounds more appealing than birthday cake is enough to tell me that it's probably time for that trip to the hospital.

Taxi!

Action Plans

Simple definitions:


Acute illness:

• Rapid onset
• Severe symptoms
• Short course

Chronic illness:

• Of long duration
• (often developing slowly or insidiously)
• Variable severity

Seeing acute and chronic illness separated and delineated makes them seem clearly distinct from one another.

However, in real life, things are often not so simple. Let's take asthma as an example:

I have been diagnosed with asthma since 1988. That is a long time. I would feel comfortable saying that I have chronic asthma. I take lots of different medications to treat my asthma, including daily high-dose oral steroids (Prednisolone). I nebulise medications every day and get daily symptoms of asthma. Again, this is easy. I have severe chronic asthma.

So what about when I have a flare-up of asthma. Sometimes this comes on subtly, making each breath shorter and more difficult over a period of hours or days; sometimes it happens in minutes. This is clearly an acute reaction (especially the rapid reaction, which is often a response to some allergen or other). The acute reaction is easy: I am having an acute flare on a background of chronic asthma. It's less easy to spot the acute exacerbation when it happens less quickly, and it can be very difficult to know where to draw the line between these situations:

1. I can manage this situation at home by increasing my normal medications
2. I need to speak to my GP or asthma nurse about extra treatment to keep me at home (e.g. extra steroids or antibiotics)
3. I need treatment in hospital

The time to decide which situations fit into each of the above treatment plans is NOT when you are having an acute flare. Hypoxia does not help good decision making. For me personally, the desire to stay at home becomes overwhelmingly strong when I'm not well. Hospital, with the undignified gown, endless questions, needle-sticks and bright lights, is not nearly as appealing as my big, soft bed at home.

The best solution to this is to get together with your GP (or consultant, or specialist nurse) and agree a plan. For asthma, you might use peak flow measurement as a guide; for diabetes it might be blood sugar measurements; for gastroparesis, it might be body weight in combination with certain symptoms.

My asthma plan:

• Peak flow more than 80% of normal: Carry on as normal
• Peak flow between 50% and 80%: Increase oral and inhaled steroids, use nebuliser as often as four-hourly if necessary; contact GP
• Peak flow less than 50%: Go to hospital. Go straight to hospital. Do not pass Go. Do not collect £200.

There are other signs that fit into this, that indicate clear deterioration: waking at night more often than usual with coughing/wheezing, inability to talk in complete sentences without needing to take a breath, pulse rate more than 120 per minute (this is a bit iffy, because I have autonomic dysfunction, which messes with my heart rate), shortness of breath at rest, needing to use the nebuliser more often than every three hours. 

Having these signs and symptoms written down in black and white means that the pressure of making a decision is lighter. Without such a plan, I would tend to continue to try all the drugs available to me at home, and wait, and wait, and wait.

I don't want to make a fuss. I don't want them to think that I'm overreacting. I have stuff to do. I don't want to be admitted to the hospital. I'll just try one more nebuliser...

And wait...

Until it's nearly too late, and I end up in the Intensive Care Unit on a ventilator.

Because I didn't want to make a fuss.

I have a chronic illness, which means that I live with daily, constant symptoms, and it can be very easy to become blase about them, even when they become quite severe, as in the case of an acute asthma attack. Having cut-off points agreed in advance with your specialists (GP, consultant, specialist nurses), written down and reviewed regularly, mean that you don't have to make a decision. I'm not making a fuss, I'm just following my action plan.

Action plans save lives.

Celebrating Getting Older

It's a week until my birthday, and I've been thinking a lot about getting older.

I can't say that I'm looking forward to the day itself. I'm currently stuck in a bit of a gastroparesis flare, so there will be no cake, no Champagne, and certainly no 7-course dinner at Le Gavroche for me! None of my clothes fit me, I have even less energy than usual, and forcing myself to take in at least some nutrients is causing pain, nausea and vomiting.

Despite that, I like birthdays, even this one. Every year I feel pride at surviving another year. Yes, every year I survive things that I might not have survived. More than that, I celebrate having survived the pain, nausea, boredom, frustration, breathlessness. I have survived everything that my failing body has thrown at me and everything the medical world has thrown at my failing body.

I'm so grateful to have the opportunity to have lived long enough to get into my 30s; so grateful to have had the opportunity to marry my very best friend, who loves me more than I've ever been loved before; to have travelled the world, met amazing people, and spent time with those who mean the most to me.

I look forward to celebrating this next birthday, regardless of whether I'm healthy enough to celebrate in the way that I would like. It's enough for me to be here - everything else is a bonus!

Rebellion

Chronic illness doesn't allow much room for rebellion. It takes people from all backgrounds and walks of life and forms them into a homogeneous group - patients.

The life of a patient with chronic illness is filled with constant reminders of illness: not just symptoms, but regular (and as required) medications, special diets and regular monitoring, both at home and in hospitals/clinics. There's not much wiggle room in this sort of lifestyle.

I have medications that are taken every 4, every 6, every 8, every 12 and every 72 hours. 21 different ones, in fact. Some of them have to be taken with food; others on an empty stomach. Some medications are fine when taken in combination with other medications; some have to be taken at least a couple of hours apart.

These medications, in addition to their desired effects on my tumbledown body, have so many side effects. I'm sure I'm not alone in having medications to treat the effects of other medications. Less serious considerations include drowsiness (Promethazine works beautifully for me, but knocks me out completely for approximately 12-15 hours), nausea, abdominal pain, dizziness and tachycardia. It's not always possible, but as far as I can, I try to take these medications when I don't need to drive, be alert (and/or awake), or alone. Just for fun, our stairs are entirely open on one side, so tackling the stairs is not something to be done when drowsy or dizzy!

I am supposed to monitor my weight, calorie and fluid intake, blood sugar, peak flow (a measure of how restricted my airways are), oxygen saturations, blood pressure, pulse and temperature every day. I also have a special (and very restrictive) diet that I have to follow.

I have braces for my shoulders (including slings), wrists, elbows, knees, ankles and feet. I have a selection of crutches, sticks and wheelchairs.

This is my reality. Every single day.

There are days when this feels far, far too much, and I get an overwhelming desire to escape from all of it - from the symptoms and from all the medications, the testing, and the medicalness of it all.

I owe my life to many of the medications that I take, and know that not taking these would win me at least a week or so in hospital. I don't want to take medications, but my desire to stay out of hospital is even greater. So I divide my medications into two categories: essential and optional. The latter category is mainly made up of painkillers and supplements. Missing a dose or two of these is bad, but not bad enough to land me up in hospital. So, when I'm feeling rebellious and as though I can't stand to take any more medication, I don't take these meds.

Yes, this causes pain, but I can convince myself that it's worth it just for that moment of freedom from medications. This is what normality feels like, right?

Setting Realistic Goals

Before you start, if you haven't read Flo's response to my post on Pacing (over at disabledmedic.blogspot.com) do it now - it's great!

Now, back to the point...

One of the things that I've been learning recently is how to set goals for myself.

This is how it used to go:
Jo: I don't do enough exercise. I'm going to go and spend an hour working out at the gym.
Jo goes to the gym, gets dizzy after 5 minutes, goes home and spends the rest of the day in pain and dizzy, trying to sleep.

This, clearly, was not a good way to go about achieving my goal.

It's very easy, when living with a chronic illness, to get discouraged because there are so many things that we can't do. I find myself obsessing about each deterioration and each perceived failure, while overlooking achievements as being too minor to 'count' for anything.

With this in mind, it's even more important to set good goals - realistic goals that lead to success. We might not succeed every time, but the more we do, the more positive we feel about our ability to achieve things.

I use the SMART system when I set goals for myself. This is an acronym that stands for:
- Specific
- Measurable
- Achievable
- Realistic
- Timely

It's important that goals should be specific and measurable - how else can you know if you've succeeded? It's not enough to say "I want to lose weight" - you need to set a measurable figure on your weight loss. This has to be a realistic number. If you're on high-dose steroids, for example, which have weight gain and increased appetite as a common side-effect, you may need to allow yourself more time to achieve your goal, or to set a smaller initial target.

Give yourself a time limit so that you know when to stop and check how much progress you've made. You may need to have more than one target - a long-term target and a short-term target. Aiming to lose 2 lb (1 kg) in a month sounds more manageable than aiming to lose 22 lb (10 kg).

Once I've set my goal, I think about the changes that I need to make in order to achieve my goal. Sticking with the example of losing weight, I might decide to drink water instead of fruit juice, and to eat fresh fruit instead of chocolate. I try not to make changes that I know will make me miserable. If you need chocolate or a glass of wine to get through the week, cutting those out will make you miserable and less likely to succeed. Don't forget to be realistic and honest with yourself. Cutting out chocolate or alcohol on one day a week is a good start!

There might be more than one way to get to your goal, e.g. doing more exercise and eating fewer calories are both ways to lose weight. People get very hung up on exercise (those who genuinely love going to the gym are the exception in my experience), but you don't have to spend an hour on the treadmill. Getting off the bus a couple of stops earlier, taking the stairs instead of the lift, or signing up to a dance class are all ways of fitting more exercise into your everyday routine. A pedometer is a good way of keeping track of how much walking you're doing.

Having set your goal and decided on the changes that you're going to make, decide on a reward for yourself once you've achieved this goal. This could be a small reward (e.g. a magazine, book, flowers or a bubble bath) for short-term achievements and a big reward (e.g. a massage, a new haircut, a new bottle of scent) for bigger achievements.

If you don't achieve your goal in the time you allowed yourself, don't beat yourself up about it. Consider why you didn't succeed and modify your next goal to be more realistic. You may need to make different changes.

Above all, be proud of yourself. Celebrate every success, no matter how small.

As L'Oreal would say, "You're worth it".

Pacing

Spot the mistake in this scenario:

I have a rare good day and take the opportunity to do all the jobs that I have been wanting to do while I've been stuck in bed or on the sofa. This causes pain and fatigue, along with other unwanted symptoms, and I end up back in bed, or even in hospital. While I'm laid-up, I spend my time thinking of all the things that I want to do when I'm 'better' and then push myself past my limits at the first opportunity.

Sound familiar?

I think that many of us with chronic illnesses push our bodies to the limit. This may be a result of frustration at spending so much time unable to do ordinary (or fun!) things, guilt that we can't keep up with friends, the children, the housework, or our jobs, or excitement that we feel well enough to do things. It seems utterly counterintuitive to me to restrict my activities when I feel good as well as when I'm physically unable to do anything.

This is where the theory of pacing comes in. The idea is to break the cycle described above by carefully restricting activities on good days to avoid the 'crash' days. It's hard, but the incentive is there - imagine not having those crash days, or having them only rarely. It wouldn't matter that I didn't get everything done in a single day (or single afternoon) if I knew that there was a reasonable chance that I would be able to function the next day or even the day after.

One way to start is to think about what you can manage on a moderately bad day. Keeping a symptom diary can be helpful for this. If you know how much you can lift, walk, drive or eat on an average/bad day then you can use this as your baseline. Try to restrict yourself to this initially, gradually building up the level of activity according to how much you can tolerate. Remember that mental activity can also be draining - it's not just the physical tasks that take their toll.

Things that can help:

• Taking regular breaks
• Taking regular painkillers or other medications
• Short periods of activity
• Switching between activities (this avoids strain from repeating one thing for too long)
• Prioritising your tasks
• Delegating to others
• Planning to do things at 'good' times of day

It may seem painful to have to give up tasks that you feel you 'should' do, but paying for a cleaner for a couple of hours a week, for example, may free your energy for other, more important, things. If it's a simple choice between having the energy to spend quality time with friends or spending every good day chipping away at a house that never seems clean and then crashing for several days, surely the answer seems obvious?

I have to confess that I'm bad at this. I'm stubborn and I'm proud. I don't like to admit that my body is failing me, but I know that my husband would rather we were able to go out to see a film or to hang out with friends than know that I had done all the housework by myself.

Hiring a cleaner isn't the only way to delegate tasks. Ordering groceries online and getting them delivered has given me back two or even three days each week. Good things to delegate are things that you don't particularly enjoy, that don't benefit from your personal input, or that cause you more symptoms. I'm not suggesting that you absolve yourself of all responsibility and spend your time watching Jeremy Kyle; far from it. People with chronic illness need activity to avoid deconditioning - doing a lot of nothing will reduce your exercise tolerance and may adversely affect conditions such as autonomic dysfunction.

So what do you do?

• Try to keep yourself looking nice: wash your hair if you can (if not, dry shampoo is pretty good) and use scent and a little bit of make-up if they make you feel good. Get your hair cut into a more manageable style if necessary
• Find a wardrobe that works for you. Suits and high heels are great, but loose tops and trousers may be more appropriate if you're not working. Please don't sit around all day in the same pyjamas that you slept in. If nothing else, freshen up and change the PJs
• Try to have at least one thing every day that you feel pleased to have done. It might be a yoga class, craft, writing, speaking to a friend on the telephone or doing the washing up
• Stay in touch with friends and family. They probably won't understand the extent of your illness - few people do, but they're still part of your life story, and they probably care about you more than you realise
• Try to make contact with people who do understand
• Stay as active as you can, working from your baseline
• Eat good food at mealtimes. Try to make meals an event, even if you're alone or struggle with eating. Eating straight out of the packet while lying on the sofa is depressing for anyone.
• Get outside as often as possible, even if it's just for a cup of tea in the garden (perhaps not in this weather) or a walk to a local bookshop
• Don't give up entirely on work - if you can continue your job (even if you need help with rest breaks or flexible hours) that's great. Otherwise, see if there's anything else you can do - part-time, voluntary, self-motivated. 

I'm certainly not an expert, but I'm learning and I'm trying!

Grief

Denial
Anger
Bargaining
Depression
Acceptance

Elizabeth Kubler-Ross' five stages of grieving, from her book 'On Death and Dying'. Originally, these five stages were applied to those with terminal illness, or those grieving the loss of a loved one. I think that they can also be applied to those of us with chronic illnesses, whether life-limiting or not.

I am 30 years old, soon to be 31. I have been ill for longer than I can remember. Over the years, I have suffered losses as a result of my illness: my hearing; my ability to run, and then to walk; the career that I always thought was my destiny; friends; independence. I could go on, but I'm sure you get the idea.

These little losses can build up until life seems utterly hopeless. Grieving for these losses can cause losses too. I mourned my joie de vivre as much as the loss of my long-awaited career. Thankfully, my love for life returned, and I found other interests to occupy my time. This, I suppose, is acceptance.

If I were to reshape the stages of grief, I would make them into the shape of a spider web. Not only because there's a large spider on the other side of the room, but because I have so often bounced from one to the other in no apparent order. Having reached the glorious state of acceptance, I sometimes find myself ricocheting into anger, denial, depression, bargaining and back, all within the space of a few days. Sometimes even within the space of a few hours.

Acceptance for me has been about valuing the things that I can still do. When that has seemed next to nothing, I have tried to take up new hobbies. I re-learnt to knit when I was housebound for six months, and this has proved immensely satisfying. Not only does it occupy many lonely hours, but I have something beautiful to show at the end of it. Something that I have made, without walking, without lifting, despite pain. I am reaching a point where I can't knit for long without dislocating my fingers and wrists, but feel peaceful about this. I have been here before, and I will still be me, despite everything that my body throws at me.

Acceptance has also been about defining myself according to who I am, rather than what I do. I am no longer a medic, a scientist or an investment banker; no longer a GB waterskier, a swimmer or a wheelchair-skills tutor. On good days I can still be sociable, bake, read and knit. On bad days I sleep, vomit, nebulise and take medications. Despite all of this, I am still me. I am kind, enthusiastic, deeply interested in the world around me, hopeful, optimistic, grateful, generous, and sarcastic.This 'me' may live in a decrepit and failing body, but it is little different for that. I look after this body as best I can and hope that it will continue to support me for many years to come.

Despite the state of my body, I am glad to be alive.

Creating Your 'Dream Team'

I've just read a book called Living Well With Gastroparesis, by Crystal Saltrelli (who has a wonderful blog). It's full of great information and advice about gastroparesis, and the general tone of the book is really positive. I didn't want to put it down!

One chapter that stood out for me was about creating a Dream Team of healthcare professionals. This is something that I've been working on with my GP - finding and bringing together a team of people who can help me with all my various medical conditions and can work together to help me to live as well as I can with the conditions that I have and the symptoms that I experience on a daily basis.

I absolutely love Crystal's term, 'Dream Team'. I want to have a Dream Team looking after me, and I want to be a member of this Dream Team. This is not just about healthcare professionals making decisions about me; this is my life, and I have to make the most of it.

I don't really want to talk about the whole Dream Team. After all, people with different conditions may have totally different needs. Today I want to talk about three members of the Dream Team, relevant to anyone with a chronic illness.

The first and most important person in the Dream Team is you. You are the reason that this team exists, so you need to be motivated. I've written before, and will write again about getting organised and about treating your healthcare as seriously as you would treat a full-time job, so I'm not going to go into details of that here, apart from a few key points:

1. Plan: Get information about your condition(s), your medications, possible treatments, and good doctors/nurses/therapists in your area. Don't be afraid to ask for recommendations from friends, or online from other people with your condition. 
2. Keep good records: This is really worth a whole post on its own, but keeping track of the reports that you get from the people that treat you, test results, as well as your own records of symptoms, anything that you measure (e.g. blood sugars, peak flow, weight), is invaluable. You are the only person that has all of this information!
3. Have clear goals: 'Getting better' is not specific enough. Creating goals is a particular skill, and one that I'm still learning! The more specific you can be with your team about what you want to achieve, the easier they will find it to help you, and the more motivated you will be because you are working towards something.

Every Dream Team needs a good primary care physician - someone who is able to coordinate things for you. This person might be a GP or they might be a specialist, depending on your situation. For me, it's my GP, as I have at least two 'main' conditions that cause all the other problems. Having a respiratory physician as my primary, for example, would be totally unsuitable for the orthopaedic problems, and vice versa.

GPs, as the name suggests, are generalists. This is their biggest strength, in my opinion. However, even generalists have special interests, and it may be worth asking at your local GP surgery to find out if any of the doctors have special interests in diabetes or asthma or chronic illness in general. At my local surgery, there is one doctor with a special interest in chronic illness. Unfortunately, she only works part-time during the week and not at all during school holidays. I started to work through the other doctors in the surgery, never specifying which doctor I wanted to see, with some funny and some disastrous results. Eventually, I found a fabulous doctor after a recommendation from a local friend. She works five days a week, and the standard two-week wait for a routine appointment is worth it to me!

So, what is this person's role within your Dream Team?

Firstly, a word of warning: even the most wonderful GP won't be able to do all the hard work for you. You still need to take responsibility for lifestyle changes, keeping good records, taking your medications, and contacting your doctor if you need advice or if you notice a deterioration in symptoms.

What your GP can do (with your help and co-operation, of course):

• Arrange regular screening checks appropriate to your condition and the medications you take, e.g. regular DEXA (bone density) scans for those with significantly reduced mobility or long-term use of corticosteroids (e.g. Prednisolone)
• Review your condition and regular medications routinely and after emergency treatment or acute exacerbations
• Prescribe medications to protect against known side effects: if you take NSAIDs (e.g. Ibuprofen, Naproxen, Diclofenac) for a short-term problem and this is changed to a long-term regular treatment, your GP might consider prescribing a medication to protect your stomach
• Refer you to appropriate specialists: this may be if you develop a new symptom that isn't controlled by standard treatments, if your usual medications stop controlling your symptoms, if you need surgical intervention (or just a surgical opinion) for a problem, or for various other reasons
• Liaise with your specialists, following up on recommended treatment or review. It would be lovely if your specialists could all write to each other after every appointment so that they're all in the loop, but in practice this rarely happens. A good compromise is to ensure that you and your GP get copies of all letters and test results so that the responsibility doesn't rest on your memory and medical knowledge to pass information between your specialists

In practice, especially for those of us with complex conditions, it can be very easy to fall through the gaps in the system. Specialist hospitals often consider their role to be that of advisors, leaving the routine follow-up to those more local to the patient. Unfortunately, local hospitals are often scared of complex patients, preferring to assume that specialist overview is all that is required. There isn't really an easy solution to this, apart from taking personal responsibility and asking your GP to do the same.

The final person that I think has a crucial part to play in any chronic illness Dream Team is a psychologist. If you can find one with an interest in chronic illness (or pain, breathing disorders, etc.) that's even better. Living with a chronic illness can be hard. Maintaining healthy relationships with friends and family can seem next-to-impossible if you're unable to cook, eat, walk, or even sit up. Chronic pain, nausea, breathlessness and other symptoms can make one tend to feel antisocial. Psychologists can provide a healthy outlet for feelings of grief and frustration, and can often teach techniques to manage symptoms as well as ways to explain symptoms and prognosis to family and friends.

Psychologists often get a bad rep in this country. I have frequently encountered nurses and doctors who drop their voices when mentioning psychology or psychiatry. I do understand that there's stigma associated with psychiatric illness, but this isn't going to go away if we just pretend it doesn't happen, and even those of us who would consider ourselves to be mentally 'healthy' can benefit from psychological support. If you're offered the opportunity to talk to a psychologist, I would recommend that you jump at the chance, and if you're not offered, don't be afraid to ask.

Remember, you need to be the driving force behind your Dream Team!

When Even Liquids are a Struggle: Some Advice

Gastroparesis is a condition in which the muscles or nerves of the stomach don't work correctly so the stomach isn't able to empty effectively. Food stays in the stomach for hours longer than it should, causing nausea, bloating, fullness and pain, as well as vomiting.

Because the stomach doesn't empty properly, eating and drinking can be a battle to fight through all the symptoms. Failure to eat or drink enough can cause severe malnutrition and/or dehydration.

One of the easiest things to do when gastroparesis symptoms are severe is to stick to a liquid diet. Liquids empty from the stomach by gravity, so in theory they should cause fewer symptoms than solids. However, even liquids can cause symptoms, so here are a few tips as to how you can maximise nutrition when even liquids are a struggle.

• Maximise your nutrition and hydration - make every morsel count. Now is not the time for diet drinks.
• Take care of your teeth - chew sugar-free gum to hydrate your mouth and don't brush your teeth within 20 minutes of vomiting. Yes, this feels disgusting, but the acid in vomit softens the tooth enamel, and if you brush too soon, you'll remove precious enamel from your teeth. Rinse your mouth with water immediately, and then brush later.
• Take your anti-emetics (anti-sickness drinks) on a regular schedule. If you can keep the nausea and vomiting at bay, you have a better chance of staying hydrated
• If swallowing is a problem, or if you don't absorb tablets/capsules well, speak to your GP or pharmacist about alternative preparations. Many anti-sickness medications are available as tablets that dissolve in the mouth, or even as a patch that can be stuck on the skin. Other medications may be available as liquids or soluble tablets (or other forms), and capsules can sometimes be opened and the tiny beads inside can be swallowed with a spoon of yoghurt or apple sauce.
• Get help for pain, whether it is in your mouth, throat, stomach, or somewhere else. Bonjela (a gel for teething pain or mouth ulcers) is available over the counter. Don't be afraid to speak to your GP or pharmacist about pain, especially if it's stopping you from eating or drinking. 
• Painkillers are better at keeping pain at bay than they are at getting pain under control once it's really established itself. If you've been prescribed painkillers to take regularly, do take them regularly.
• If you've been prescribed NSAIDs (e.g. Aspirin, Ibuprofen, Naproxen, Diclofenac) and find that they are upsetting your stomach, ask your GP or pharmacist if they can recommend an alternative, or if they really are the best medications for you, to prescribe other medication to protect your stomach while you're taking the NSAIDs.
• Be careful of low blood sugars (hypoglycaemia). Symptoms of hypoglycaemia include anxiety, nausea, sweating, hunger, shakiness and weakness. If you find it difficult to spot the symptoms of low blood sugars before they get so low that you collapse in a heap, ask your GP about monitoring your own blood sugars at home, and make sure you get instructions about when you should check your sugars, how low is too low, and what you should do in this situation.
• Taking a supplement of multivitamins/minerals can minimise some of the anxiety associated with not being able to eat. If you know that your micronutrient needs are being met, you can focus on getting hydration and calories. I recommend trying to find supplements in liquid or chewable form, as these are often better tolerated than capsules or tablets. Those designed for children can be more palatable. If you can't tolerate the whole dose, or can't tolerate it every day, don't give up. A little is better than nothing!

So what can you eat/drink?

• Water is great, but if you're barely managing liquids, your body may need more than just water - try clear liquids, e.g. apple juice, cranberry juice, bouillon, sugary cordials. It's also possible to buy fortified juices, such as Fortijuice, which are clear liquids, but are fortified with extra nutrients and calories.
• Dioralyte (or another rehydration solution) is brilliant if you can tolerate it, as it contains electrolytes and sugars to help replenish what you're losing, especially if you're vomiting or if you have diarrhoea.
• Try setting a timer - every 15 minutes drink a teaspoon full of liquid. This seems like a tiny amount, but if you can tolerate it, you'll be getting 20 ml per hour, or 100 ml every five hours. It all adds up. If you can manage that, try increasing the frequency to every 10 minutes, or the volume to 2 tsp (10 ml).
• Carry a bottle of juice around with you and take a sip every time you remember. 
• Using a straw can make it easier to drink quantities, especially if you have a sore mouth.
• Very plain salty crackers, e.g. saltines or water biscuits can help settle the stomach
• Ice lollies (popsicles) are a great way to get those valuable liquids. They are available in minature forms for children, but if even these are too large, try making ice cubes from fruit juice or cordials.
• Ginger is renowned for its anti-nausea properties. A delicious tea can be made from grated ginger, honey and hot water. Strain before drinking.
• Boiled sweets (hard candy) are a good source of sugar. If you can suck these in addition to your liquid diet, they provide calories, flavour and a bit of variety from an entirely liquid diet. 
• Get yourself some dextrose tablets to have on hand in case of low blood sugars - you can suck them or rub them against your gums. If you prefer, you can get sugary gel from your pharmacist that has the same effect (try Hypofit or Dextrogel).

If your fluid intake falls below about 200 ml per day for more than a few days, or you find that you're only able to wee once in every 24 hours (or even less), it's time to stop struggling at home, and get some medical help. Being very dehydrated is bad in lots of ways, but in particular can cause damage to your kidneys. It can also make nausea and vomiting worse. It might be time to get some IV fluids in hospital to top you up until the flare is over. If the flare goes on for a long time, it might be time to consider more long term options, which you can discuss with your doctor.

Because gastroparesis is not very well recognised, there's not a lot of literature available. One author that I can wholeheartedly recommend is Crystal Saltrelli, who is a certified health counsellor in the US. She has gastroparesis, so is writing from personal, as well as professional, experience.

Website: livingwithgastroparesis.com
Books: Living (well!) with Gastroparesis
            Eating for Gastroparesis: Guidelines, Tips & Recipes

I'd love to hear from you about any other websites or books that you recommend, or any tips that you find helpful when eating and drinking are a struggle.

Dehydration: The Narrative

The day after my last post, I spoke to my GP, who was concerned that I might be dehydrated. I honestly didn't feel too bad, and explained to her that I wasn't feeling more dizzy than usual on standing, and that I was still managing some oral fluids. Dr B was very persuasive, and as she's a new doctor, I thought I'd give her the benefit of the doubt. Better to have a doctor who is overcautious than one who really doesn't care at all. So Dr B faxed a letter to the A&E department at my local hospital, and I gathered a few bits and pieces and then made my way there.

As usual, the waiting room was heaving. There was barely a place to sit, especially as I was trying to avoid people who were eating things, so as not to aggravate my nausea. Of course, I ended up sitting in front of the vending machines. And then someone came and sat in the seat behind mine, chewed in my ear, wanted to talk to everyone in the vicinity (including me) and then, horror of horrors, pulled out a cigarette and lit up. Yes, it's illegal to smoke in public buildings, but did she care? Really not. Thankfully, that was enough to get her kicked out by security to wait outside until her name was called.

Despite the busyness of the department, I was so impressed by the attitude of all the staff. They were all so kind, going out of their way to look after all the patients who were waiting, and even kept a sense of humour. So I was feeling quite calm by the time I was eventually called back to be seen. My nurse got IV access (first time!) and checked my blood sugar, which was low. She got me started on the dextrogel, which is an oral gel to bring my blood sugar back up to normal, and then the doctor came in to see me.

Dr C, who has met me a few times before, and has an idea of my complex history, but walked into the cubicle, took one look at me, and stated "You're not dehydrated - you look fine!" He went on to say that I could have some IV fluids, and that I should let them know when I felt ready to go home. He ordered a venous gas, in addition to the bloods already requested, so that they could get an instant idea of my fluid status.

30 seconds later, I heard running, and Dr C burst through the curtain into my cubicle, to tell me that I was, in fact 'crispy dry' and acidotic (my blood was more acidic than usual - this is generally considered Not A Good Thing). There was quite a lot of running around while people organised lots of IV fluids and dextrose, which improved my mood and made me feel a lot better. I was able to talk myself out of an admission, on the condition that I would keep a close eye on my blood sugars and continue to try to push fluids.

I'm totally ready for this gastroparesis flare to be over. Pushing fluids at home is possible, but spending the weekend with family who don't know me very well was difficult. Having to turn down generous American hospitality, which included bowls and bowls of candy, chips, olives, etc. as well as HUGE meals. I maxed out on my antiemetics and forced down as much food as possible so as not to appear rude, but still had to field such comments as 'you really do eat very little' and 'you're like my Mum (my grandmother) - she always ate like a bird' and the more hurtful 'you're very big for someone who eats so little'.

Glad to be home!