Being Prepared for Surgery

Before we go any further, you should know that this blog post does not contain any medical advice. There are no exercises, no medications (or alternative remedies), no recommendations for tests or monitoring, and no diet guidelines.

So, if this isn't a medical guide, what is it?

This is a list of things that I do in the days or weeks before planned surgery to make my life easier in the days and weeks after the surgery. Of course, the nature of the surgery will change some things, but I'll try to be as general as possible.

Here in the UK, most people will know their surgery date at least a month in advance (for routine, non-urgent procedures). I like to use that time to think about the effects the surgery may have on my life while I'm recovering, and try to come up with as many solutions as possible before the problems have a chance to rear their ugly heads!

In my opinion, there is almost nothing worse than feeling weak and feeble, in pain, limited by wounds/dressings/plaster casts. Add to that the feeling of unwashed hair and skin, unwanted body hair, and flaking nails, and it's almost a recipe for disaster! Here are a few of the things that I do to prepare my body for surgery and to keep myself looking as normal as possible afterwards.

Hair:

Book a haircut as close to the date of your surgery as humanly possible - this will ensure that your hair looks as good as possible, even if you're not able to give it much attention. If you have very long, thick or curly hair, consider a change of style to one that needs minimal maintenance. This doesn't always mean short! My hair is wavy/curly and prone to frizz. Short styles, for me, mean endless conditioning and styling products and hours of blowdrying or using straightening irons or tongs. With a blunt cut just above shoulder length, I can get away with scrunching a little mousse through my hair and leaving it to dry naturally.

If your hair is coloured, make sure you get your roots done, preferably just before surgery, so that it will look fresh for as long as possible while you recover and build up enough energy to get to the salon for the next colour!

Styling your hair may be another hurdle, especially if the surgery affects your hands/arms/shoulders, or is likely to leave you feeling very weak. I recommend investing in the following basic kit:
1. Dry shampoo: Having hair that looks bouncy and freshly-washed without getting out of bed is like a miracle! If possible, try a couple of brands and stock up on cans of your favourite in various sizes. You may still need help to apply it, massage it in and brush it out again, but it still takes considerably less effort for both you and your helper than a full shampoo and conditioner, plus it doesn't leave your hair wet, so no risk of getting chilled (or getting wet bedclothes)
2. Alice bands and 'crocodile' clips: These are enough to hold your hair back from your face, even if you have one hand out of action. Some people find the fabric bands easier than solid ones, but I'm a fan of the solid ones. The wider the better, in order to cover as much hair as possible! Having the crocodile clips as well means that you can try out a variety of styles with minimal effort or assistance
3. A wide-toothed comb is great for gentle hair-styling (or just detangling); if you can get one with a long handle, so much the better!

If your surgery means that blowdrying your hair is not an option, there are two things you can do. The first is to resign yourself to having a different style for a few weeks, working with your natural hair texture. As you'll be giving your hair a break from heated styling tools, it's a good opportunity to use intensive deep conditioners. Put a soft towel over your pillow and apply the conditioner. Massage your scalp well, and then comb the conditioner through to the ends of your hair. It can stay there until you next wash your hair. Not particularly glamourous or attractive, but your hair will be in better condition afterwards! The other option is to book a course of regular blow-dry treatments at your hairdressing salon. It's a lovely thing to do to pamper yourself, and may be the only way to get your hair washed and styled properly if you have an arm in a cast, but consider how you're going to get to and from the salon if you're not up to walking and not allowed to drive.

Skin:

After surgery, you may not feel like keeping up with your usual skincare regime. I like to cleanse, tone and moisturise, and have various favourite products to exfoliate and moisturise my skin. This all goes out of the window after any surgery, but especially if I have an arm in plaster. Simple cleansing wipes are my saving grace - they remove everything (even betadine, chlorhexidine and EEG glue - all of which you may encounter during your hospital stay!), and leave my skin feeling lovely. At a pinch, you could use them to wash your body, but I wouldn't recommend doing this more than once! My top five tips for skin have to be:
1. If you wax, book a wax prior to your surgery: If you don't wax, think about whether you're going to keep up with whatever method you normally use, and whether it would bother you if you didn't keep up with it. Waxing lasts for 4-6 weeks for most people, and there's nothing quite like feeling smooth and polished when you're a bit weak.
2. Simple cleansing wipes
3. A pleasantly fragranced deodorant (I find spray easier than any other method of application)
4. A real sponge and a mild liquid soap: it's hard to rinse properly if you're washing in bed or in a chair, but it's not the end of the world if a mild soap stays on your skin - aqueous cream can be used instead of liquid soap - it doesn't feel particularly 'cleansing' but it does work, and it'll leave your skin lovely and soft
5. A luxurious moisturiser: it may be more difficult to apply, but having the luxury of my favourite scent as well as soft skin is worth the time it takes to apply it! There are lots of different types of moisturiser, depending on your needs - it may be easier to use a body butter that's almost solid and won't run everywhere, a pump dispenser, or a spray.

Cosmetic:

More than any other part of me, my face gives me away after surgery. It takes almost nothing to make me look pale and drawn, with dark circles around my eyes, and it is guaranteed to make me feel worse if I see myself in the mirror looking like that. Of course, there's always the option to just avoid the mirror, but let's assume that we generally like mirrors.

Before surgery:
1. Shape your eyebrows and wax/thread/pluck any stray hairs
2. Get your eyelashes tinted: this is cheap and readily available at salons, and will mean that you don't need to wear mascara for up to six weeks. I have no arguments for the pedants who say that you don't need to wear mascara anyway. I like to have dark lashes, and drawing attention to my lashes and big green/blue eyes is better than drawing attention to the dark circles around my eyes!
3. Invest in a cream blush, or even better, a cream product for cheeks and lips: I love the Benefit Benetint lip and cheek balm and Bobbi Brown's Pot Rouge in Powder Pink. Give me 30 seconds with either of these, and I'll magically transform into a healthy-looking creature before your very eyes.
4. Get a really good brightening concealer for under-eye bags and any other dark shadows that may emerge post-surgery: My intention is not really to promote lots of beauty products, but I use Clinique's Airbrush Concealer. I've used it for many years, and love it. It is also very easy to apply. Even with one hand. Even if that hand is your non-dominant hand.
5. Stock up on moisturiser and lip balm: Hospitals are dry places, and my skin is dry and flaky for days or even weeks afterwards, so I use a much heavier moisturiser than usual.
6. Choose some low-profile jewellery to wear while you're recovering: You'll probably have to remove all your jewellery for the surgery (you may be allowed to tape over a wedding band) but you'll need something simple to wear afterwards, if only to maintain piercings (don't forget about belly buttons, tongues, lips, etc. and make sure you have someone ready to put them back in for you after surgery if you can't do it yourself). I usually wear plain pearl or diamond stud earrings, a simple, light necklace, and my wedding and engagement rings, but no other jewellery. It's enough to keep me looking polished, and to keep the holes in my earlobes open, and that's all I need.

After surgery:
Get a manicure and pedicure: Don't make the mistake of doing this prior to surgery, as you'll just have to take it off, which is a bit of a nightmare if you have a gel or shellac manicure. Once you're safely out of the hospital, book yourself in for a mani-pedi, preferably with gel or shellac polish, which lasts for a couple of weeks without chipping or flaking. I like to get a bright colour on my feet and a neutral colour on my hands - it does have to go with everything for two weeks, after all! If you're not well enough to go out for your manicure, you may be able to find a mobile technician who will come to your home, or even to the hospital.

After all this preparation, I'm sure you're just about ready to just get to the hospital so that you can have a break, but three last things:
1. Order some pretty seasonal flowers to be delivered a couple of days after you get home from hospital (unless you're likely to be inundated with floral gifts from friends), or buy yourself an orchid in bud, so that it'll flower when you get home and are there to see it.
2. Put fresh sheets on your bed ready for when you get back. If you're anything like me, this thought will sustain you through the hard first night in the hospital after surgery. I tell myself that I just have to get through this night (and maybe a couple of others) and then I can go home and snuggle into my lovely soft bed with the clean, fresh sheets, and that means that Everything Will Be Alright.

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.