Wednesday, 30 November 2011

That Fine Line

Those of us with chronic illnesses live with symptoms day in and day out. The severity of those symptoms may vary, and some of them may go away from time to time, but we never feel 'well' in the way that we would like.

In order to manage these daily symptoms, many of us have medications and treatments available to us that would usually require hospital admission: home oxygen, intravenous medications, nebulisers, strong medications. These are not cures, just ways of maintaining the status quo and allow us to stay at home with a reasonable quality of life.

Difficulties arise, however, when things deteriorate despite all the medications that we have in our 'chronic illness toolkit'.

How far should we allow things to deteriorate before we 'give in' and accept that we need extra help and support? How long do we wait for the 'rescue' medications that we have to kick in? It may be that the deterioration is gradual, and insidious, and it can seem hard to know the point in the downward trend at which we should seek advice. Worse still, we can get so caught up in just dealing with each moment as it comes that we stop looking at the bigger picture and asking how we are going to improve things.

These are difficult questions for anyone reluctant to 'bother' their doctor (or other health professional), but even more so for people with chronic illnesses. Often, our illnesses are rare, and may be complex. While the necessary treatment may be simple, getting it may be another matter.

Flare-ups often seem to happen at night or at the weekend, especially if it is a holiday weekend. This poses yet another question of whether we try to wait until we can get in touch with our own specialists, or whether we need help sooner than that. I feel as though I am treading a fine line whenever I am in the position of needing to make this decision.

Emergency Departments are not really set up to treat those of us with complex medical conditions. They are very good at what they do, which is to treat accidents and acute illness. It is unfair to expect them to be able to handle rare medical conditions.

Of course, the ideal is to be able to contact one's own specialist for advice and treatment. They are far better placed to be able to tweak routine treatment and instigate new therapies than any healthcare professional meeting you for the first time.

But what happens when you really can't get in touch with your own doctors?

Alternative communication methods:
Telephone and email can be excellent ways to get in touch with your doctors. Email, in particular, allows you to give all the relevant details, taking time to write carefully and accurately, without the panic of an emergency conversation. It also allows you and your doctor to have a written record of the enquiry and any advice given.

Having a written protocol in place for emergencies:
If your illness is of the type that might require emergency treatment, you could ask your doctor or nurse specialist to write a protocol for you to take to the Emergency Department with you. For example, if you are known to have a certain type of seizure that responds well to particular medications, this could all be put in writing, with a copy given to your local ED and another copy for you to carry around with you. In the UK, it's possible for patients to be 'flagged' with the local ambulance service, so that any paramedics called out are prepared with relevant information. MedicAlert tags and cards (and equivalent) also provide valuable information if you're not able to give details to those treating you.

Be prepared:
If you can, try to predict things that might go wrong. It's not unrealistic to think that someone with gastroparesis might have a bad flare in which they can't eat or drink, and so need IV hydration and anti-sickness medications (and possibly also gastric decompression and artificial nutrition).

The more difficult cases arise when those unpredictable flare-ups occur. Either unrelated illnesses that worsen the underlying condition, or new symptoms.

In this case, it is important to act as sensibly as possible. Get advice, either from your own healthcare providers or from someone who knows you well, rather than from an overworked out-of-hours or emergency physician, in the first instance.

If the answer is that you need medical intervention (or at least assessment), the next question is when? Can you wait until you are able to see your own doctor? Is there anything more that you can do at home to keep things as stable as possible while you wait?

If the answer to 'when?' is 'now', then you have to ask 'where?' -
1. Out of hours GP service
2. Walk-in (or minor injuries) unit
3. Emergency Department (perhaps by ambulance, if necessary)

So, what are you waiting for:
Do you need help?
When do you need help?
Where are you going to get this help?

And with that, I am going to take another dose of my rescue medications now in the hope that I can delay needing help from my own doctor until tomorrow, when she is next in clinic.

Wish me luck!

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Tuesday, 29 November 2011

Countdown to Christmas: Part 3

December is so nearly upon us!

While I'm sad about the end of National Health Blog Post Month (NHBPM) and the daily blog prompts (which I have mostly enjoyed reading, but ignored), I am excited about the start of my favourite month and the last run-up to Christmas.

I'm still working my way through the Christmas cards, and have wrapped all the presents that have arrived so far. There are a few still to order, but I definitely feel as though I've done the bulk of the shopping and wrapping.

This coming week is more about planning than doing:

  1. Planning the decorations for the house (Richard will execute the plans this weekend): I'm looking out for good deals on Christmas trees and boughs of evergreen to suit my theme.
  2. Planning baking that needs to be done nearer the time - do I need to bake cookies for Richard to take to work for his colleagues; do we want to take boxes of baked goodies to our neighbours? 'Bake, freeze and defrost' is a favourite technique of mine, but for things that really do need to be made near the time, I am ordering the ingredients this week. 
  3. Entertaining: Usually we host a big party around New Year, but we're going low-key this year. It would still be nice to have some friends round during the festive period, so we need to send out invitations and plan (and buy) food and drink. We also have guests coming to stay the weekend before Christmas, so I intend to come up with a provisional menu this week, so that I can order the groceries online.
  4. Planning my Christmas music for the iPod. Two playlists this year - on classical and one non-classical. Not only is this good for my personal listening, but we can plug the iPhone straight into the speaker dock in the kitchen when we have people round for drinks/nibbles/dinner.
  5. The advent calendar needs to be filled (or bought, if you're that type)
  6. Most people in the UK seem to get prescriptions issued for 1 month at a time. If you're one of those people, this week would be a good time to check what you'll need before the New Year, and order it from your GP.
  7. Food allergies: if you have a very restricted diet or food allergies, this week would be a good time to check with the hosts of any Christmas parties you're attending. Some of them will just need a reminder, but others might need more work. If you're going somewhere unfamiliar to eat, look online for the menu or ask for a copy. It's always easier to ask questions in advance, rather than grilling the waiter on the day. If you're very worried, or if your diet is very specific, you can always eat before you go out and carry a snack in your handbag. If your host is nervous about your dietary requirements, it might be a good idea to volunteer to bring a 'Jo friendly' dish that everyone can enjoy. If you have school-age children, now is probably a good time to make sure that you remind their teacher/school of any policies in place. Kids are often allowed to bring in goodies at Christmas, so make sure that your child is protected from any  potential exposure. 
Let's say that's all for this week. I'm sure that those of you in the US are still recovering from Thanksgiving, and will appreciate a quiet week!

As for me, this has taken me almost all day to write. I've been asleep the majority of the time since Saturday night. I think I've probably just overdone it, but my body is certainly protesting about something! Back to sleep now!

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Monday, 28 November 2011

Being Bedbound

The idea of being bedbound means different things to different people. In its most pure form, it means that someone is unable to get out of bed at all, and may need to lie flat for all or most of the time. More commonly, it is used to describe a situation in which someone spends the vast majority of their time in bed, though they may be able to go to the bathroom or transfer to another place to lie down.

Chronic conditions often fluctuate, meaning that while there are times when I can leave the house, and drive myself to a hospital appointment or other appointment and back, these activities tend to have repercussions, especially if I push past those warning signals that tell me I should be in bed! I'm 30 years old, and have lived with these conditions all my life. Of course I push past my warning signals sometimes!

I had a fun, productive and busy week last week. I thought that I'd paid for the excess movement when I had a 'crash day' midweek and could do nothing but sleep, but apparently not. I slept for 14 hours on Saturday night, and then spent most of Sunday horizontal on the sofa. Today has been much the same - horizontal on the sofa, packed around with pillows and duvet and hot water bottles; drugged to the eyeballs in an attempt to get control over the pain, nausea & vomiting and dizziness. I can't tell you how many attempts I've made at writing this post through the haze of medication that destroys any clarity of thought.

Ideally, on days like this, bed is the place to be.

In order to stay in bed (my snuggly prison, as my friend M calls it), I need certain supplies. When I was last properly bedbound in May of this year, I could crawl from my bed to the bathroom (though I collapsed and hurt myself a few times) but there was no way that I could make it downstairs. So I came up with the idea of having a 'snack station' for times like this.

The Snack Station is not for midnight feasts (well, maybe it is sometimes), but is a selection of snacks that I can tolerate even when my tummy is really playing up, and which allow me to remain fed and watered without getting out of bed. Several of my medications have to be either dissolved in water or taken with food, so it's important that I have food and water so that I can take the medications I need.

The essentials:
UHT skimmed milk (in small cartons - 500 ml or less)
Nesquick instant milkshake powder (this is fortified with sugar and vitamins)
Nutrigrain bars (low in fat and fibre, but relatively high in energy, and some contain pureed fruit)
Pretzels (low in fat & fibre if you get the right brand)
Snack-a-Jacks (come in lots of different flavours - low in fat & fibre)
Bottled water
Snack-size cartons of fruit juice (some have added vitamins and minerals)
For those of you in the US, Orgain is a great option as an organic liquid meal replacement. Here in the UK we have to put up with Scandishakes, Fortisip, Fortijuice, Forticreme, etc. You can ask your dietitian.

The kit:
Scissors
Dycem (sticky plastic stuff for getting a grip with weak hands)
Plastic cups
Plastic spoons
Drinking straws
Baby wipes
Paper napkins

I have been bedbound, or virtually so, for up to 6 months in the past. If that happened again, I would invest in a small kettle, microwave and refrigerator to live by my bed.

In the shorter term, I can ask Richard to bring thermos flasks of hot water and cold water upstairs before he leaves for work so that I can make myself hot drinks (bouillon and ribena are good; instant breakfast and cup-a-soups are edible in an emergency).

This list would also make a handy travel list of things that can be carried relatively easily and give a guaranteed supply of food and drink that don't provoke symptoms. Trying to find a shop in a new city or country (especially if you don't speak the local language) that will cater for a very restricted diet can be stressful. Especially if your blood sugar is tanking with every step you take!

So, it looks as though I'm confined to the Snuggly Prison for at least the next couple of days. I'm not miserable about that (it was worth it to be able to get my hair cut) but it's good to be prepared. Look out for pictures once I've set up my bedroom Snack Station!

If I'm stuck in bed for longer than a few days, you may also get some pictures of a bedroom Craft Station, but hopefully not. I have grand plans for the study...


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Sunday, 27 November 2011

Blaming Myself

Among other things, I have what is known as 'difficult asthma'. This means that my asthma is severe and persistent, despite maximal medical therapy. It is par for the course that things flare up and I run out of things that I can try at home. At this point, I either try to wait it out at home, in the hope that I can keep things stable enough and give my lungs time to get their act together, or I take myself off to my local hospital. The latter option usually wins, even if I try the waiting option for a bit first.

I take my medical care quite seriously, and am careful about taking my medications and avoiding allergens and things that trigger asthma attacks.

This is a good thing, as I'm sure it helps me to avoid unnecessary hospital admissions, and means that my doctors are happy to let me leave hospital that little bit earlier, as they know I'm capable of looking after myself.

I know that I'm a 'good patient', but there's always a nagging doubt that maybe I could be doing something differently. Something better.

Articles like this one (which was published in the American Journal of Respiratory and Critical Care Medicine) suggest that difficult asthma is often nothing more than a failure on the part of the patient to take their medications as prescribed.

While I agree that it's sensible to make sure that people are taking their medication before trying additional treatments with potentially serious side-effects, this view does make me feel inadequate, or even defensive. Most of the doctors that treat me are able to see that I am committed to my medical care, but there is the occasional one who treats me as though I know nothing about my treatments, and that I'm in hospital because I'm stupid. This view manifests itself in questions about my psychological wellbeing, whether I know about and take my medications, and questions about whether I smoke or inhale other inappropriate things. Peanuts and dust, for example. Or cocaine. Having patients admit to using hardcore illegal drugs makes this type of doctor very happy.

The sense of disappointment that I feel when it becomes clear that things are deteriorating despite my best efforts is hard to describe. I have such optimism when things go well, and feel so disheartened when they don't.

I think that today's lesson is that I have an illness that fluctuates. Part of the nature of difficult asthma is that it is hard to control, and I need to be forgiving of myself when, despite my best efforts, things deteriorate. However, the fact that it is an illness full of ups and downs does not give me an excuse not to try my hardest to control it. Yes, it's disheartening when I try hard and things go wrong, and I know that even when things go right it's as much due to luck as judgement, but every good day (even every good hour) is worth the effort, and I owe it to myself to give myself every opportunity to live life to the full.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Saturday, 26 November 2011

I still remember

My current hearing aid

The titanium attachment point for my hearing aid

I still remember, at the age of four, fighting with my parents because I didn't want to take my hearing aid out at bedtime.

I didn't want to miss anything while I was sleeping.

This encounter sets the tone for my lifelong relationship with medical intervention - I love anything that allows me to interact more fully with the world around me.

Yes, it can be hard to be different, especially as a teenager/young adult, but I was so grateful for the hearing aid (now converted to a bone-anchored device fixed into the side of my skull) that allowed me to follow conversations, even in groups. So grateful for the wheelchair that allowed me to get out of the house and go on the holiday where I met my husband. So grateful for the breathing treatments and steroids that keep me out of hospital (most of the time), and for the painkillers that take the edge off the pain enough that I can smile and mean it.

Of course, it would be easier if I could function normally without all the medications and medical aids, but given that isn't really an option, I'll continue to be grateful for the things that allow me to participate in the life that I love so much.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Friday, 25 November 2011

Organising Medical Supplies: After

It's taken me the best part of a week, but I'm nearly there with the organisation of the medications, and here's how I did it:

One of the two drawers under my bed is now dedicated to medications and testing equipment (oxygen saturation monitor, peak flow meter, blood glucose testing equipment, thermometer, blood pressure monitor). The other drawer will, at some point, contain splints and braces. Crutches and canes are stored in a convenient gap between my wardrobe and the wall.

What I used for the medications:
  1. Two canvas drawer liners with compartments (from Ikea)
  2. Two clear plastic shallow boxes with dividers and lids (Ikea)
  3. One clear plastic deep box with dividers and lid (Ikea)
The drawer is just deep enough to hold the two shallow boxes stacked on top of each other.



This is the bottom of the two boxes:


  •  Batteries (for hearing aid, portable nebuliser, TENS machine)
  • Tape
  • Alcohol hand gel
The top shallow box is full of things that I might need in a hurry - it's so useful to be able to see into it, and know that because it's shallow, nothing important can fall to the bottom and get lost or pass its expiry date:


  • Dissolvable anti-emetics (Zofran), mints, chewing gum, ginger candies,antacids
  • Diclofenac (Voltarol) gel, Lorazepam, scar gel
  • Epi-pen, antihistamines, hydrocortisone, glucose tablets
The deep plastic box is all about blood sugars. It contains my back-up glucose monitor, back-up finger stabber and spare lancets for both types of finger stabber. I love the multicoloured lancets, don't you? I just had to take them out of their cardboard package so that I can see them!



The drawer organisers have different medications in each. Most of my standard daily testing things fit into one compartment, which is useful. I've tried to keep similar medications near to each other, though it hasn't worked perfectly because of the size and shape of the dividers.

So there you have it - a fresh start to keeping my medications in order, which is so appropriate given that I am now trying to manage my chronic illnesses as though they are a full-time job, remember? What better way to start than to have everything in order?!





My next project is to get my medical records in order, including the charts that I've been using to keep track of my symptoms, vital signs and medication use. Oh, and I want to come up with a system to make sure that I know when my medications run out or expire so that I can order new ones at the right time. 

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Thursday, 24 November 2011

Organising Medical Supplies: Before

I have had a problem for a while about how to store all my medical stuff.

Searching online, though it did reveal some beautiful and clever ideas, was never going to give me a solution for my particular problem. Most normal people just don't have this much medication! Actually, the problem is not just medication but equipment, braces and splints, mobility aids, etc. 

There are two drawers on casters underneath my side of the bed, which are currently used for the purpose of storing medical stuff. They are about the right size (approximately 2.5 ft x 2 ft each), but as you can see from the photographs, there's not much of a system, and I often have to rummage around to find things. When I'm putting my pharmacy deliveries away, I put things where there's space, rather than with other similar items. Likewise, if things are needed in a hurry, they are taken from the closest packet. That sounds perfectly reasonable until I remember that sometimes these packets get moved while I'm stirring the drawer looking for something else. Which means that another packet gets used the next time. So I have numerous part-used packets of various medications, making it almost impossible to know how much I have in total.


Yes, you're right - this drawer also contains microwave popcorn and knitting yarn


The problems:
  • Volume: Up to a month's supply at a time of 19 different regular medications, plus 'as required' medications, equipment, splints and braces and medical records (all currently stored in different places around the house)
  • Access: I need to be able to get to everything easily, sometimes in an emergency. If I need a rescue medication in the middle of the night, I need it quickly, and I don't want to have to put the light on or have to move lots of other things to get to what I need.
  • Labeling: The system needs to be clear to me (obviously) but also to my husband if he needs to get something for me in a hurry, and to friends/paramedics/nurses/anyone else who might be looking after me.
  • Usability: There needs to be some kind of system so that the older things are used first, and so that I can keep track of how much I have, and can request more supplies from my GP *before* stocks run perilously low
  • Small things: syringes, bottle adaptors, nebuliser filters, gloves, dressings, etc. These tend to 'float' around the drawer or sink to the bottom, never to be seen again.
  • I need to keep a bottle of water, straws, a cup and snacks by the bed (preferably out of sight) so that I can take medication, including things that need to be taken with food, or dissolved in water. The straws are so that I can drink while lying down.
  • Non-prescription medications(e.g. Tums/Rennies, vitamins) and non-medical things (e.g. ginger, strong mints, hard candies - for nausea) are not currently stored in the bedroom with the other medications. I think that it might be helpful to have everything in one place. 
I haven't totally sorted out all of those problems yet, but I'm well on the way with it. Look out for the 'after' photographs tomorrow and an explanation of how I'm beginning to bring order to chaos!


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Wednesday, 23 November 2011

    Days Like This

    Despite my best efforts to remain positive and grateful to be alive in this incredible and beautiful world, there are days when things get in the way of that.

    Today, for example, I have a fever. It's only 38.5 C (101.3 F), but it's enough to make me feel very shivery, even with a thick knitted cardigan, hiking socks, a duvet, a hot drink and a hot water bottle. Yes, I look ridiculous, but I was feeling miserable, and needed to be warm!

    My blood sugars are running low enough for me to feel symptomatic, but whatever is causing the fever seems to be upsetting my tummy, and my gastroparesis/intestinal dysmotility are both flaring up like you wouldn't believe. My dysautonomia symptoms are through the roof, and my pain levels are higher than they have been for a while. Whatever this thing is, it's really hit my poor body hard! I haven't managed to eat anything today, but I am keeping sips of sugary drinks down, and I have some glucose tablets here that I can suck or dissolve in water, if necessary.

    I thought that I would be ok to work through my to-do list while lying on the sofa, but felt so miserable that all I could do was sleep. I didn't even manage to get online to buy some really cute gift tags for the Christmas presents that I started to wrap! On the plus side, I've started a new knitting project, and a managing a few rows at a time with lots of encouragement from my online friends at Ravelry!

    Typing is making me feel dizzy and more nauseous, so I'll stop soon, but I'd like to wish my US readers a very happy Thanksgiving. The lovely Rachel from talesofrachel.com is generously moderating chat on the forum of the Chronic Babes website tomorrow for those who would like some company on Thanksgiving, or who just want a break from people who don't 'get it' and some positive words from people who do!

    On days like these it's my friends and family who get me through, and who give me the strength to come through the darkest and most difficult moments, ready to face the next day with a smile.

    Thank you.


    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Tuesday, 22 November 2011

    Countdown to Christmas: Part 2

    Welcome to the second installment in Jo's Christmas preparations!

    Right now, I imagine that Christmas is not the first thing on the minds of my dear friends in the States. For your sakes, this is a low-key week of preparations. I know that you have Thanksgiving coming up, and hope that you can all enjoy the reminder to feel thankful without feeling unhappy or stressed by the occasion.

    I have to confess that I'm not feeling particularly festive, and really don't feel like making preparations. I have lots of appointments this week, but I am going to push myself to get at least a few things done, otherwise I know that I'll struggle nearer the time. Murphy's law dictates that I will end up in hospital during the whole of my last minute preparation time if I leave things too late. Actually, I'll probably be in hospital anyway (gotta love hospital wi-fi and online shopping!) but at least it's one thing off my mind if I'm up to date with my Christmas preparations.

    I spent three weeks out of the four leading up to my wedding in hospital, which would have been somewhat stressful if we hadn't got most of the organising done months in advance, so I'm a big advocate for forward-planning. Those of us with chronic illness have to make the most of our good days so that we can focus on nothing but taking care of ourselves when we have bad days.

    So what am I doing this week?

    1. Ordering gifts online: There are some good deals around at the moment (I got 25% off most of the presents I ordered on Friday), especially with Black Friday coming up. Amazon are promoting their Black Friday deals, some of which look very good. I'm trying to consolidate all my orders so that I get all my Amazon gifts (and gifts from other websites) ordered at the same time, rather than having to go back and forth to the same sites with repeat orders. This is where the list that I made last week is particularly handy!

    2. Making sauces, jams and chutneys: Cranberry sauce will freeze nicely until we're ready to use it. Jams are designed to be stored, and chutneys are considerably better if they have a few weeks to mature and develop their flavours. This year I plan to make a spiced apple chutney (it's an old favourite that I make every year, and never seem to be able to make enough to satisfy everyone!), sparkly plum jam (with edible glitter), cranberry sauce, and some sort of cranberry and apple jelly. The apples for the chutney are already cooked and stored in the freezer, so the chutney preparation will be low-effort - just adding the flavours.

    3. Still plodding away at the Christmas cards: Helen (over at the Creaky Girl blog) suggested mail-merging addresses to print out onto sticky labels for the cards. I am definitely going to do this! The strength in my hands isn't great, and I get a lot of pain and illegible handwriting after a short time, so it seems sensible to conserve my hand function for the message, rather than wasting it writing names and addresses onto envelopes. As Helen rightly pointed out, it's quite a lot of effort initially, but I will be able to use the list again and again. Wish I'd done that for our wedding invitations and thank you cards!

    4. Wrapping presents: We have a theme every year. This year it's brown paper with brightly-coloured ribbon and the names of the recipients stamped onto the paper. I haven't decided whether I'm going to emboss the names or not. I'll see how much my wrists hurt after wrapping. Thank goodness for sellotape dispensers! I have different boxes for the wrapped presents, depending on where they're going - thankfully this year we only have two stops on our Christmas tour, but in previous years we've had four or five stops, with a corresponding number of boxes. Once the boxes are filled, they're ready to sit until we leave for our Christmas tour, when they can be lifted straight into the boot of the car. Easy!

    Wrapping paper theme for Christmas 2011 - brown paper and ribbon

    5. Choosing (and ordering online) the wine for Christmas Day: We are spending Christmas with Richard's family up in the North West this year. We've been told that we don't need to help with the meal, as we'll be doing a lot of traveling, but Richard will make his traditional chocolate roulade and I'll bring chutneys and jams, which is a good tactical move, as I want to contribute something, but probably won't be much more use than a bump on a log after all the traveling! We've also offered to choose and bring the wine for Christmas Day. It's fun to choose wine to go with each course, with sherry to start and port to finish. We put money aside each month during the year as a 'wine fund', so this isn't an extra Christmas expense, thankfully.

    6. Starting to buy and wrap the presents for Richard's stocking: We make stockings for each other every year, and they follow very specific rules:
    • Chocolate coins and an orange (Richard has a chocolate orange because he doesn't like real ones!)
    • Something to eat
    • Something to read
    • Something pretty
    • Something useful
    • Something to wear
    • Something to listen to
    • Something to play with
    And that's all for this week. I'm desperate to start making the Christmas playlist for my iPhone, but I'm holding off for as long as possible. I make the same mistake every year, starting the Christmas music too early and then finding myself utterly jaded and sick of it by mid-December. But not this year - this year will be the year that I break that trend!

    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Monday, 21 November 2011

    Having a Chronic Illness is a Full Time Job

    This has been mentioned a few times on Twitter and Facebook - having a chronic illness is hard work and time-consuming.

    Despite the fact that many chronic illnesses cause extreme fatigue, requiring lots of rest/sleep, and the fact that most people don't feel like doing anything at all if they're horribly nauseous, in severe pain or dizzy and faint, there are still lots of things to be done!

    My medical appointments can be split into essential and non-essential. The essential ones relate to immediate management - appointments with the Chronic Pain team, the asthma clinic, nutritionist, etc. Physio, OT, psychology and some of the others fall in between essential and non-essential. Non-essential are things like appointments with the geneticist and ob/gyn. I've just got married, so these appointments will be relevant at some point, but not immediately now! My energy levels have to stretch to getting to all the essential appointments, but there are so many of them that it can be hard to get to all of them, and even harder to keep track!

    In addition to the medical input from my doctors and therapists, I have to take responsibility for my own care. That involves taking my medications as prescribed, looking after my equipment, doing my physio exercises, keeping a record of symptoms and important observations (e.g. blood glucose).

    Of course, there are other things that I can do to improve my physical and psychological well-being. I can practice yoga and meditation, have regular massages and seek help from complementary therapists; I can listen to my guided imagery tracks when I'm in pain, take supplements and ensure that I get the best nutrition that I can, given my dietary restrictions.

    But how to keep track?

    Crystal from Living with Gastroparesis posted a brilliant picture on Facebook last week, showing the chart that she uses to keep track of her daily medical and holistic routines. I've copied her idea, producing three charts, for regular medications, 'as required' medications, and lifestyle inputs, including physical observations. I plan to keep these in my medical folder (more on the medical folder in another post - I don't want to bore you too much all at once!).

    Cat likes to be in photographs



    Living well with a chronic illness is like having a full-time job. By approaching like a job, I hope that I can take more responsibility for my own care. I don't mean that my whole life should revolve around my illness (that's just boring!) but by taking it seriously, making self-care a priority and thinking proactively about my care so that I can ask good questions of my doctors, I am making the most of the life that I've been given. This is the way to be as healthy as I can be!

    This post was written as part of NHBPM -30 health posts in 30 days: http://bit.ly/vU0g9J

    Sunday, 20 November 2011

    Stir Up Sunday

    Today is traditonally known as 'Stir Up Sunday' - the day on which we make our Christmas pudding. Everyone in the family stirs the pudding and makes a wish. It's a nice tradition and makes the house smell amazing!

    As soon as the cat stops sitting on my recipe book (she likes to sit on whatever object she thinks is most likely to get the attention that she thinks should be given to her) I'm going to go and dig out dried fruit, oranges, brandy and spices, along with a few less interesting ingredients, and start to think about my wish. Since I don't believe in supernaturally-granted wishes, my wishes are usually more like resolutions; things that I want to achieve for myself and my family.

    This year, my wishes are about taking care of myself. Crystal from Living with Gastroparesis has recently been discussing the idea of living with a chronic illness being a full-time job. I've been quite struck by this thought and have been trying to approach my medical care in the same way that I would approach a job; planning and preparing and making sure that things get done on time and as well as possible. I used to approach it in a slightly haphazard (and resentful) way, wishing that I could just be 'normal' some of the time. I know that's an unhelpful way to think about my medical care, and that I deserve the very best care I can give myself. I'll write more next week about the changes I'm making - lots of lists and systems!

    Back to the present, and the baking plans: I have a very cute apron that I usually forget to wear (thankfully I'm not a messy baker, except when I use icing/confectioner's sugar), but I'm going to wear it today. Baking in my beautiful rainbow-coloured kitchen makes me so happy!





    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Saturday, 19 November 2011

    Big Changes Around Our House

    Richard and I went to Ikea today. As you probably know, I don't get out of the house much, so this was a big excursion. It was a beautifully sunny day, so I got out the sunglasses (as well as scarf and gloves) and we put the roof down on the car. I was so happy to enjoy the late autumn sunshine with Richard!

    Our main aim was to find a cabinet or shelving system to hold the wine glasses that seem to be taking over the house. We have glasses of every conceivable shape and size - for different cocktails, spirits (cognac/armagnac, whisky) and wines - Sherry, Champagne, Chianti, Burgundy, Bordeaux, Sauvignon blanc, dessert wine and port! We were hoping to use the wall space above the sideboard in our dining room, but found something so perfect that we just had to move things to make space for it! The cello now has its own little nook under the stairs and the glass cabinet now lives between the fireplace and the piano (keyboard, really, but I call it a piano - wishful thinking!), where it looks very smart, don't you think?

    Don't worry - we don't use the radiator
    We also got lots of photograph frames for the photo wall in the study and for the hallway. You'll get to see them once they're filled with pictures and hung on the wall, but not before. I don't want to spoil the surprise for you!

    Yes, I said 'study'. We are finally going to turn the laundry/junk room back into a study. Richard is going to get a desk and a filing cabinet, and we are going to reclaim the room. Richard plans to use it as a home office; I plan to use it for crafts. We'll see if those two uses can coexist happily together! 

    Most excitingly for me, we got some storage containers to try to organise my medications, which were in quite a state. I haven't had the energy yet to put them to use, but when I do I think it might be worth a post of its own. So many medications, pieces of equipment (nebulisers, a capella, TENS machines), testing stuff (blood pressure, oxygen saturations, temperature, blood sugar, peak flow) and crutches, canes, braces, etc. It's hard to know where to store it all, especially as I need to be able to get to most of it easily.

    I've looked online for storage ideas, but I realise that most normal people don't have quite the volume of medication that I have. A small slimline cabinet on the bathroom wall is just not going to cut it!

    We've got some clever ideas that I'll show you once I've finished. Or at least once I've started.

    Reorganising takes a surprising amount of effort on my part. I can't lift anything much heavier than 1L of milk (that's about 33 oz, for the Americans), so I do most of the planning in my head and then ask for help with the execution. My head is full of wonderful ideas, but it might take a little while to get there. Especially as Richard works long hours and I have a remarkable ability to end up in hospital when we do have time to execute my exciting plans. But I still believe that my plans will become reality one day.

    Watch this space!

    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Friday, 18 November 2011

    White Chocolate and Cranberry Cookies

    These started life as Nigella Lawson's chocolate chip cookies. Which look very nice, except that I didn't have any milk chocolate chips (or even milk chocolate) in the house. What I did have was white chocolate chips. And dried cranberries.

    I'm not sure the results really bear much resemblance to Nigella's cookies, but they've got rave reviews with everyone who has tried them. I haven't been feeling well enough to eat, though I did try a bite of Richard's. I think they could be improved by leaving out the mixed spice and adding some orange zest, and maybe swapping the Cointreau for Grand Marnier. I'll let you know how the new ones turn out - I plan to give people a few days to recover before making the next batch!

    I am often asked why I bother to cook, and especially why I bother to cook things that I can't eat. I have gastroparesis, which means that my stomach empties too slowly, leaving me feeling nauseous (with or without vomiting), bloated and in pain after eating even just a small amount. There is no cure, but symptoms can be improved by eating smaller meals more often (large volumes empty from the stomach more slowly), increasing liquid calories (liquid empties more easily than solid food) and cutting down on fat and dietary fibre, both of which slow stomach emptying. These cookies are very definitely not on the list of gastroparesis-friendly things to eat.

    Having said that, I can have a bite of cookie and enjoy it. I could even have a whole cookie if I thought it was worth the consequences! I enjoy the process of baking and find that it relaxes me. My husband and friends (and Richard's colleagues at work, who are often the recipients of large baking sprees) enjoy the results of my baking, and I don't usually feel bad about not being able to eat. I have a cup of tea and enjoy the company.

    An unexpected bonus of spending pleasurable time in the kitchen is that I don't resent taking a bit of time out of my baking schedule to prepare tiny gastroparesis-friendly meals (or large meals that can be split into small portions and frozen). My freezer is full of healthy, flavoursome, gastroparesis-friendly meals and snacks - it is wonderful to be able to grab something out of the freezer on a bad day, or when I'm a bit pushed for time.

    If I'm not already in the kitchen, I am more likely to snack on less nutritious foods, so I try to plan my meals carefully each week - it's very easy to pop a tray of butternut squash or sweet potato into the oven while it's hot, or boil some potatoes while I'm waiting for something in the oven. Good use of time, good use of electricity to put the oven on for more than one thing at a time, and good for my nutrition to be able to eat pureed butternut squash with rice,or a tiny bread roll with tahini instead of yet another bowl of cereal!

    So here is the recipe:

    Ingredients (makes about 16 large cookies):

    125 g (1/2 cup) butter, softened
    150 g (3/4 cup) soft light brown sugar
    100 g (1/2 cup) golden caster sugar
    1 egg
    1 egg yolk
    300 g (3 cups) plain (all purpose) flour
    1/2 tsp bicarbonate of soda (baking soda)
    1 tsp ground mixed spice
    200 g (1 cup) white chocolate chips
    50 g  (1/3 cup) dried cranberries
    45 ml (3 tbsp) Cointreau or Grand Marnier (or orange juice, for a non-alcoholic version)

    Method:

    Preheat the oven to 170 C (375 F) and line a tray with baking paper.

    Soak the cranberries in the Cointreau, Grand Marnier or OJ for about 15 minutes, or until most of the liquid has been absorbed.

    Cream together the softened butter and sugars until light and fluffy. Beat in the egg and egg yolk, followed by the flour, bicarbonate of soda and mixed spice. Finally, stir in the chocolate chips and cranberries.

    Using a 1/4 cup measure (or 60 ml ice cream scoop), measure out a tray-full of cookies, leaving plenty of space between each one. I got two trays of 8 cookies each out of this quantity.

    Bake for 13-17 minutes, until the tops are starting to crack and the edges are starting to brown. Leave the cookies alone on the tray for 5-10 minutes to recover from the ordeal of having been in the oven, then transfer them to a wire rack to finish cooling.


    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Thursday, 17 November 2011

    Researching a New Diagnosis

    I like to consider myself an expert patient. I am familiar with the signs and symptoms of my illness, the medications used to treat it (including those that I don't take) and their interactions and side effects. I know about the non-medical and complementary therapies used to treat my illness, and manage my own treatment plan with support from my GP and specialists.

    This is the result of many, many years of accumulated research.

    But where should you start with a new diagnosis?

    I found myself asking that very question a few years ago, when I received a new diagnosis to go alongside the existing ones.

    Receiving the diagnosis was a relief, as I knew that something was very wrong, so it was helpful to have a name for it so that I could start to understand. What I found frightening was that I couldn't answer people's questions about this rare condition, couldn't suggest anything to my GP, and felt totally unfamiliar with the new medications used to treat it.

    So where did I start?

    Get a general overview of the condition:

    www.patient.co.uk contains numerous articles about medical conditions, many of them written by doctors and for doctors. This was my starting point for looking up the primary diagnosis, and later, the other diagnoses that came along with the primary one. Get an understanding of how the illness presents, is diagnosed, is treated, and how things might progress in the future. Learn about how the illness affects the normal functioning of your body (and learn about the normal functioning if you don't already know).

    Try to steer clear of websites that promise miracle cures, or that promote particular products. What you need at this early stage is thorough, reliable information, which will provide a foundation for your future expertise. The NHS website, eMedicine, and Wikipedia are all relatively reliable, though you may find some of their articles a little light on detail.


    Find out more from a patient perspective:

    Look for any societies or charities specifically supporting people with your diagnosis. Read their articles and message boards, ask questions and compare other people's experiences with your own. Think of this as adding colour and texture to the basic understanding that you gained from the first step above.

    Medical websites can give facts and figures, but you have an advantage (?!) in that you know what it is like to actually have this condition and live with it. Reading about acid reflux, for example, without ever experiencing it, is like reading about the taste of a peach without ever eating one.

    Look for published research:

    PubMed was my next port of call, to see what research had been published about my condition. This is a quick step, just to see if there is anything new or on the horizon for your condition. You may not be able to access full text of research papers, but you can always ask your GP or specialist to print off articles for you, or just ask them what they think about a particular piece of research.

    Find out more about drug treatments:

    Patient information leaflets provided with any prescribed or over-the-counter medication are helpful. Make sure you read them, even if you don't remember everything they say. It's important to know if a new symptom could be a side-effect of medication or an interaction with another medication that you take. The BNF (British National Formulary) has more details about doses, adverse effects and interactions. Your pharmacist will have a copy and might let you borrow or keep an old edition if they have one knocking around. Try to understand what each medication does and why it has been prescribed.

    Complementary and lifestyle measures:

    This is probably the most difficult topic to research, as results are often anecdotal. Ask questions of other people with your condition, your GP, your therapists and specialists. Talk to complementary therapists (make sure they're registered with a recognised governing body, and get a personal recommendation if possible). Remember that your mind is very important in all of this - relaxation and meditation may be a valuable part of your treatment, along with more physical interventions, such as acupuncture, yoga, diet and exercise, osteopathy, etc. Most of all, use your common sense. Don't stop taking prescribed medications without consulting your GP, or try something that your gut tells you is risky.

    Finally:

    Try to keep track of your symptoms - what makes them better or worse, what effects (good and bad) you notice from the medication you are prescribed and from any lifestyle changes you make. Take every opportunity you can to learn more about your condition, participating in teaching for medical students or expert patient programmes, if they're offered to you.

    This is your life; your medical condition, and you can take charge. You are the only one who can see the whole big picture of your body and how it's affected by various things (illness, food, exercise, medication, etc.), so you have the right to be the boss of your medical team. Use other people's expertise in addition to your own, but don't forget that you are the leader and the core of the team. This is your life, and you have a vested interest in living it to the very best of your ability.


    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Wednesday, 16 November 2011

    Grace Under Pressure

    This is the title of a song by Elbow:


    This song means a lot to me because it expresses the way that I want to live my life. I would like to feel that I could behave with grace while living with difficult circumstances.

    Despite the temptation, I don't think that there is ever an excuse to be rude to people, short-tempered or unkind. That doesn't mean that I'm always perfect - far from it, but I don't think that my illness gives me the right to treat other people badly.

    I try to remember that I can't know the circumstances affecting those around me, and that I'm almost certainly not the only one who is having a hard day.


    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Tuesday, 15 November 2011

    Countdown to Christmas: Part 1

    With less than six weeks to go until Christmas now is the time to start preparations.

    I'm not suggesting that you play Christmas music on repeat from now until the end of December, or that it's the right time to start wearing those glitterball earrings, or even that you have to pretend to feel festive, but a few moments of planning this week will save much pain in the long run!

    For those of us with chronic illnesses, holidays can be difficult. There may be long days of socialising, late nights, lots of travelling and unsuitable food. It may be difficult to find time to rest, take medications on schedule, exercise or meditate. In addition to this, there are the usual stressors of buying and wrapping gifts, sticking to a budget (which may be especially tight for those unable to work due to illness) and preparing to be the Hostess with the Mostest.

    Things I am doing this week:

    1. Making lots of lists: I have a list of presents that I need to buy for people (this will help me to stick to my budget, as I can look out for things on sale or special offer without panicking that I'm running out of time); a Christmas card list; lists of things that my husband and I would like so that I can tell people who ask for gift idea (we both have allergies, so it's often safer to give people specific suggestions). I also have a list of events so that I can start to think about travel arrangements and make sure that I don't kill myself by agreeing to go to ten parties in one week.

    2. Arranging appointments: Now is a good time to deal with any little nagging health problems before the holidays hit. The last thing I want is to allow a small problem to develop into a big problem that could spoil my enjoyment of the holiday. It's also a good time to book a dental check-up and hair styling appointments before the party season starts in earnest.

    3. Trying out holiday recipes: There are lots of things that I can't eat, but rather than be a miseryguts about it, I plan to try out some seasonal recipes that will suit my dietary requirements and appeal to everyone else. Crystal at Living (Well!) with Gastroparesis has some great recipes, hints and tips about handling the holidays without causing major symptom flares, and I plan to try some of her recipes this year. I definitely want to give them a trial run before the holidays so that I can avoid the stress of cooking something for the first time, not knowing if I'm going to enjoy it or if my body will tolerate it.

    4. I've already bought wrapping paper and cards (I saved a lot of money because I bought them early), so I can start to write Christmas cards and wrap presents as I buy them. I can't write for very long at any one time, so if I write a few cards every day, I won't cause myself lots of pain by trying to write them all at the beginning of December (or lots of guilt that I didn't manage to send them out early enough)! 

    I think that's quite enough holiday preparation for this week. There's no point in exhausting myself now while trying to avoid exhausting myself later. Check back next week for more planning and preparation!


    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Monday, 14 November 2011

    Help Me, Please

    I can't do this on my own.

    This is not an admission that I can't cope with life in general, just that some things are hard. Most of the time I have much less energy than would be required to complete my 'to do' list, along with numerous other symptoms that interfere with my daily plans.

    Every day is a balancing act - trying to juggle the things that need to be done with my physical symptoms.

    The smart ones among us get skilled at delegating and asking for help.

    I struggle with my pride over this issue, and often leave it too late, ending up in tears on the kitchen floor, completely exhausted, overwhelmed and unable to do anything useful. It's not that I don't want people to help me, but just that I find it difficult to ask.

    Friends often ask the generic question, "Is there anything I can do?" or tell me to let them know if I need anything. This is difficult because it then puts me in the position of having to ask. I may really need help with the laundry, or to wash and style my hair, but might be too embarrassed to suggest it.

    If you really do want to help someone with a chronic illness, it might be helpful to follow your general question with some specific suggestions. This shows that you're not just offering platitudes or saying what you feel you should say in that situation.

    Some ideas:
    1. Help getting to/from hospital appointments
    2. Meals - things that can go in the freezer, gift cards for restaurants that deliver
    3. Shopping - especially if you're going to the supermarket or other shops, ask if you can pick anything up while you're there, or if your friend would like to come with you
    4. Laundry - changing bed sheets, washing, ironing, folding
    5. Small DIY tasks - light bulbs, checking the smoke alarm, bleeding radiators, empty bins
    6. Company - offer to bring food/drink, DVD, games, books or flowers
    7. Personal care - washing and styling hair, make-up, painting finger/toe nails
    8. Food preparation - peel/chop vegetables, decant things out of heavy containers
    9. Child/animal care - this can be a major stressor when someone is very unwell or in hospital. Offer to walk the dog or host the children for the weekend, or to arrange a rota to pick the children up from school
    I am so grateful for my support networks, both emotional and practical, but despite my gratitude, there are still times when I turn down offers of help. Don't be hurt or offended - I might be having a great week, ploughing through my to-do list, or I might be hibernating in bed, avoiding all human contact. Don't take it personally and don't be afraid to ask another time.

    For my part, I will try to be better at asking when I need help and at being honest if I'm struggling.

    Together, we'll get there!


    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

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    FAFQCMY6H446 This is just a quick blog post to verify that I am the author of this blog in order for it to be listed on Technorati.com


    Normal service will be resumed asap!

    Sunday, 13 November 2011

    I'm Fine

    When someone asks me how I am, I rarely pause to think before answering, "I'm fine."

    Clearly, this is not actually the case.

    By any definition, I am not fine, but I know that I am not alone in telling people that I am. Is it because I don't believe that people really want to know the uncomfortable truth? Because I don't have the energy to explain how things really are? Because I don't want people to feel sorry for me, or because I don't want them to think that I can't cope?

    Well, perhaps it's all of those things, and a few more besides.

    My advice to myself is to remember who is asking. My husband knows perfectly well that I'm not fine, as do many of our close friends and family members. They deserve more than to be brushed off with, "I'm fine," or even, "I'm fine, thank you." These are people who care deeply about me, and who go out of their way to offer help and support in difficult times, and who celebrate with me when times are good. Honesty is the least I can offer them in return.

    Knowing intimate details about my medical conditions is a privilege. These details are shared with people who earn the right to know, not with everyone. It is not everyone's right to know whether I plan to have children (or whether I am able to do so), if I have been in hospital recently, or whether I have any more upcoming surgery planned. A gentle, "I would prefer not to talk about that" or, "That's a very personal question" is usually enough when I don't want to share.

    Keeping things to myself often means that I also turn down help when it's offered. This is not a clever thing to do. I'm not trying to say that I shouldn't ever do anything for myself (quite the contrary, in fact!), but when pain levels are high and energy stores are low, taking someone up on a kind offer to put away the shopping or to come over with a takeaway meal can be a huge blessing.

    You don't have to tell every painful detail to everyone who asks, but try to think of a few ways in which you might let people know how you're really doing. I've come up with some to get you started:

    1. I'm alright, but I've had a tough couple of weeks
    2. I'm recovering from a busy few days
    3. I'm having a bit of a flare-up of my illness at the moment
    4. Physically, things aren't great, but I'm keeping my spirits up
    5. I've been in hospital recently, and it's taking me a while to build up my strength after that

    Remember, honesty is the best policy, and don't be afraid to ask for help and support if you need it.


    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Saturday, 12 November 2011

    My Own Normal

    I caught myself, only this morning, telling myself that 'I don't want to be invincible - just normal.'

    Normal, in this instance, means that I want to be able to stand up without my heart rate passing 180 beats per minute, that I'd like to have a hot shower (standing up) without ending up in a grey and dizzy heap on the floor, and that I'd like to bake a cake and then be able to eat it. Not all of it (though that might be fun), but just a normal slice, with a cup of coffee.

    Is that too much to ask?

    Apparently, today it is far, far too much to ask. My normal today has involved taking my medications while horizontal (this requires a drinking straw and much patience, among other things) and then remaining horizontal until they kicked in. I tackled the stairs bottom-first, being careful not to hit the cat when I threw my crutches down the stairs ahead of me. And I am now horizontal on the sofa with a mug of peppermint tea, where I plan to stay for the rest of the day, apart from a brief upright moment once I have the strength, so that I can switch on the television or fetch my favourite recipe book so that I can dream about cake.

    Some days I feel closer to the dream of normality than others, but in reality, my body is never going to cooperate with a Hollywood view of normal. I am never going to run through central London in beautiful stilettos, perfectly blow-dried hair bouncing as I run. I do not swing my Mulberry handbag nonchalantly while kicking leaves in Hyde Park, or juggle shopping bags to make space to carry a tray of perfect cupcakes from the Hummingbird bakery before going home to create a beautiful meal for my perfect family.

    The first step is to accept that there is no such thing as normal, and that the above paragraph is the stuff of dreams. The second, to accept that I have to work with what I've got. My normal.

    Accepting my own normal gives me the opportunity to make the best of what I have. I can't run in stilettos (or at all, for that matter), so rather than spend my days dreaming and shopping online for yet more impractical shoes, feeling sad that I will never get to go out and kick leaves while wearing them, I am planning an outing in the car to see the changing leaves. We'll take advantage of the next sunny day, put the roof down on the car, and ooh and aah at the different colours as we drive through groves of trees. This is a dream that has a future.

    Even realistic dreams take planning. To make these dreams reality, I will have to rest more either side of the fun stuff. I may need to increase my medications, or juggle the schedule according to which I take my medications. We will fill the car with supportive pillows and blankets. It might be that we don't manage to see the changing leaves this year, but go out to see the first snowfall, snowdrops, bluebells, or groves of daffodils in the spring.

    But there is no sadness in planning like this. The sadness comes from wishing for things that cannot be; longing for a life that isn't mine. Accepting my life and my normal gives me the opportunity to look forward to a future of real, attainable achievements.

    Like managing to get up, turn on the television and find myself a book about cake.

    Success!



    This blog was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J


    Friday, 11 November 2011

    Gratitude

     After the week I've just had, I have to say that writing a post on gratitude was not the first thing that came to mind.

    Gratitude is a big topic.

    People with disabilities and chronic illnesses are often accused of being ungrateful, or of complaining more than they should. It is common to hear the criticism that, "They just don't know how good they have it," of those who are healthy and able-bodied, or even those with illnesses or disabilities that are deemed to be 'less severe'.

    As my body has become more affected by my illness, I've found myself thinking that same thing, and criticising my younger self for not realising how good things were. It's not the big things that I could have done that I regret (though maybe I would have done more travelling), but the feeling that I didn't appreciate the little things enough until they were no longer possible.

    Though it's too late for many experiences, I try to relish everything now, however tiny. I appreciate colours, scents and flavours; the turns of phrase and mannerisms of those I love. That doesn't mean that I don't grieve for those things (and people) that I've lost, or for the things that might have been. It doesn't mean that I don't experience daily symptoms to drag my days down into reality.  What it does mean is that I choose to focus on the things that I enjoy, and that are special to me, rather than focusing on the things about my life that make me sad.

    Gratitude doesn't mean that everything is perfect.

    As I sit here now, typing this, I'm taking one of my 19 daily medications (this one takes 10 minutes - perfect for starting a blog post). I can't walk more than a few metres without getting short of breath, or sit without pain in the joints that dislocate even at rest. Currently, and I really hope this is just a flare-up, I am not able to eat at all, or even drink much.

    But I am still grateful.

    I am grateful for my cat, curled up in a purring, dribbling heap of companionship beside me; grateful for the tiny pink cyclamen by the garden door that even I (with my black anti-gardening fingers) haven't managed to kill, and which is flowering cheerfully against the autumn weather. I am grateful for the candles on the dining table, which I will light when the daylight goes. I am grateful for the daylight, grey and meagre as it is, and grateful for the people outside on the street who have braved the grey weather to provide entertainment for me as I people-watch from my window.

    Loneliness is a feature of most of my days, so I am especially grateful to those who reach out and break into my isolation, whether online or in real life - my husband, family and friends.

    I am grateful for the medical professionals who work so diligently to give me some quality of life.

    But quality of life can't really be given, can it?

    My symptoms can be controlled to some extent, but unless I choose to accept my situation as it is, I will never really have quality of life. I could quite easily justify spending the rest of my life lamenting my circumstances, feeling jealousy towards those who can do things that I can't do, and directing inwards the anger and frustration that I feel about my illness.

    Gratitude is the alternative to all that. It is making the decision to seek quality in the life that I have, not the life that I might prefer. It is choosing to embrace each day and the things that it may bring, taking pleasure in the little things. Perhaps most of all, for me, it is choosing to take care of my body despite its many flaws, and love it for what it is; loving myself for who I am, so that I can appreciate all that I have, and be grateful for it.

    Gratitude is a choice, not a feeling.



    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J
    It is also part of the chronicbabe.com fortnightly blog carnival

    Thursday, 10 November 2011

    Advice for Hospital Visitors

    As I am still in hospital, I feel well-placed to advise on things that would brighten my days while inpatient. People often tell me that they're not sure whether they should bring anything, and if so, what they should bring. I would like to make it crystal clear that your company is the best thing you could possibly give me, and I will be hugely grateful for the break in the monotony of the hospital day. But if you do feel like bringing something (or sending something if you're not able to visit), I've made a list of suggestions.

    General tips (specific to me, but may also apply to others):


    Most hospitals don't allow plants or cut flowers
    Strong scents can set off breathing problems, either for me or for those around me
    Space is limited, but hospitals tend to be ugly and boring and in need of decoration
    I have gastroparesis and food allergies/intolerances, so there are lots of things that I can't eat at the best of times, which is exacerbated when I'm unwell.
    Many hospitals don't have fridges or microwaves for patient use
    My energy levels are pretty puny even when I'm well - please don't be offended if I doze on you. I promise I'm still grateful for your company!

    So - wonderful things to bring:

    1. A newspaper - I often feel cut off from the outside world while inpatient. The smaller, tabloid-sized papers are easier to handle. I don't mind if it's the free London paper (Metro or Evening Standard), or if it's yesterday's, or if you've already read it. In fact, I might even prefer it if you've read it so that you can point me in the direction of the best stories!

    2. Email links to interesting news stories or blog posts, or just a chatty email/card.

    3. A cup of nice (aka non-hospital) coffee. I drink soy or skinny latte (thanks for asking), or hot chocolate if you think that I might be in need of comfort. I love going out for coffee and rarely manage it, so having coffee brought to me in hospital is a real treat.

    4. There are lots of things that I can't eat, and this list often increases when I'm unwell in hospital. However, chocolate always goes down well with the nurses! Most of my roomies have said that they crave fresh food that tastes of something - a fresh muffin from the coffee shop downstairs, a punnet of strawberries, deli snacks (e.g. hummous and breadsticks). A friend of mine brought me a mug and some herbal teabags, which was one of the nicest presents I've ever received. Sadly, I broke the mug, but I still think of Adam every time I drink jasmine tea!

    5. Interesting drinks - I get cravings for diet coke and 7-up free, but Richard has brought fruit juices, smoothies and milkshakes, which have been much appreciated (and probably better for me, as they're not empty calories). A hilarious friend of mine once brought a bottle of Champagne and two glasses, which we drank while sitting on my hospital bed, gossiping and admiring the view over London - Big Ben, the London Eye and the Houses of Parliament. Can't imagine I'll ever repeat that experience, which makes it even more special!

    6. Trashy fashion/celebrity/gossip magazines. I confess, they're about the level I can handle while in hospital!

    7. Gel cling window decorations always brighten my day. Festive decorations (Christmas, Easter, Valentine's, etc.) are also welcome - spending holidays in hospital can be pretty miserable. Photographs of you, or of us together are a nice way to decorate the space. Don't forget the blu-tack!

    8. Funny youtube videos to watch; recommendations for programmes on iPlayer/ITVplayer/4-OD.

    9. Stories to tell - these don't need to be exciting. If I'm in hospital for asthma, I usually can't talk much without getting out of breath, so hearing about your day at work or your plans for the weekend is lots of fun for me.

    10. Clothing - my dad always used to bring me brightly-coloured socks when I was in hospital as a child/teenager (I had quite a collection for a while!), but comfortable t-shirts or pyjamas would be well-received too.

    11. Music (or recommendations on iTunes) - I spend a lot of time with headphones on, either watching TV or listening to music/radio.

    12. Entertainment: Card or board games, puzzle books (e.g. sudoku, crosswords)

    13. Things to make me feel attractive - hair ties, nail varnish, lipstick. A friend of mine came to visit me after I'd had surgery on both arms and was feeling a bit grotty - she tidied my hair and put make-up on for me. I can't tell you how much it improved my mood!

    14. Practical things: shower gel, moisturiser, cleansing wipes.

    15. Books to read (I really mean recommendations for my Kindle, as I'm not up to holding a real book for long these days) - nothing too hard on the brain. I'm not talking Dostoevsky or other Great Literature.

    16. Small craft projects - I spend a lot of time knitting, but anything that occupies a few hours is a blessing.

    17. Cups, mugs or straws: I have star-shaped bendy straws, which brighten the chore of drinking soluble medications or Ensure (bleuggh!). Many years ago, Richard gave me a pink plastic cup with fairies on it and a straw that curled up the outside. My fluid intake probably doubled as a result of that cup!

    18. Jokes. The weaker the better. My brother is an absolute expert at this - we have been exchanging cheese-related jokes (and science jokes, but I won't bore you with those) for months now. What do you call a cheese that doesn't belong to you? Nacho cheese (not your cheese!)

    19. Balloons. These are cheerful and colourful, and generally just wonderful!

    20. A soft or colourful pillowcase, stuffed toy, microbead cushion or other tactile/cuddly thing.

    BUT:

    Really and truly, your company (either real or virtual) lifts my spirits more than you could ever know. That text that took you about a minute to send brightened my mood for hours, and I read it at least ten times; the half hour that you spent chatting to me over a coffee helped me to get through the day, which was otherwise filled with pain, struggling for breath,etc. Hospital can be a very lonely place, and the days and nights can seem unbearably long, especially if symptoms are severe. You can't change any of the crazy tricks that my body is playing on me, but you can certainly help the way that I view my life.



    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Wednesday, 9 November 2011

    The Hospital Bag (a Tangent)

    I'm in hospital. Again.

    Actually, I'm not just in hospital, but in my usual bed on my usual ward, and all the nurses are pleased to see me. I'm grateful for the welcome, but there's still a part of me that feels ashamed and saddened to be recognised as a regular in my local hospital.

    One of the things that has made a huge difference to my quality of life despite the frequent (and sometimes lengthy) hospital admissions has been having a Hospital Bag.

    This baby lives in the corner of our bedroom - forgotten, but still providing quiet comfort that I will have everything I need for the next admission. It takes away all the anxiety of having to try to ask someone else to gather up the necessary things in an emergency, and allows me a few creature comforts in addition to the usual basics.

    So let's take a look inside!


    What you see here is enough to keep me going in hospital for ten days. Everything lives in the bag, and it stays packed in this order so that other people can find things for me if necessary.

    Can you tell that I like spots?

    I'll give you a full contents list at the end of this post, but for now, let's take a look at some more pictures!

    Clothes: The pile on the left is pyjamas, t-shirts in the middle, and trousers on the right.

    All the clothes are light, because hospitals always seem to be excessively warm. The t-shirts have short sleeves for easy blood pressure measurements and easy access to IV lines.

    Two pairs of the trousers are light yoga trousers and the third pair is denim. I do love my jeans, though they're not as comfortable as the yoga trousers for lounging around in hospital. The yoga trousers are easily rolled up to expose knees and ankles for physiotherapy.

    Most of the rest of the bag is taken up with medical kit. I like to have my own alcohol gel, peak flow meter, oxygen saturation monitor and blood glucose meter. The boxes above the peak flow meter contain medication that isn't commonly used (I have an allergy to Salbutamol/Albuterol) - I can't take the alternative, so I like to have a good supply with me.

    The pink spotty bag contains a few doses of all my other medications and a list of what I take, the dose, and the frequency.

    The green spotty bag is just a wash bag.

    The little extras include a salt grinder (I like my food salty, and need to eat lots of salt to keep my blood pressure up), scented body lotion, plastic bags for dirty laundry, and a couple of lipsticks! I used to carry a notepad and pen, but recently I have just been typing everything straight into my iPhone.

    So there you have it.

    Enough underwear for 10 days
    6 t-shirts with short sleeves
    2 pairs yoga trousers, 1 pair jeans
    Supplies of regular medications, along with a list of names, doses and frequencies
    Wash bag (toothbrush, toothpaste, razor, shampoo, comb, deodorant, eyeliner, mascara, lipstick)
    Monitoring equipment: peak flow meter, sats probe, blood glucose meter
    Alcohol gel and wipes
    Scented body lotion, lip balm
    Food: I always carry salt, and sometimes also have saltine crackers, nutrition bars, mints, ginger chews and glucose tablets. I know some people who bring tomato ketchup and tabasco sauce!
    Plastic bags - I can't emphasise enough how useful these are!
    Netbook, headphones, power cable, phone charger, kindle and charger (sometimes my DS too)
    Earplugs, Sunglasses (in case of migraine), eye mask

    Look out for a post tomorrow about the best things to take if you're visiting a friend in hospital (especially if that friend is me)!



    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Tuesday, 8 November 2011

    Three Truths and a Little White Lie

    1. I have had a perfectly round 100 attempts to get an IV line into me this year alone. I think it's time to stop those doctors muttering their vague thoughts about 'maybe you should get a port or PICC' and actually encourage some action, don't you?

    Actually, this is an arterial line, but I couldn't find a pic of my IV lines!


    2. Not only have I studied medicine and physics, but I also took evening classes in patisserie. I love Albert Roux more than is appropriate, given the age difference between us.

    Chocolate flowers dusted with gold lustre


    3. I play euphonium, oboe, piano and harp - purely for pleasure now, though I seriously considered ditching the idea of studying medicine for a career in the performing arts. Aberdeen University had a very tempting exchange programme with the Paris Conservatoire when I was making my university applications, but the distance from the south coast of the UK to the northern end of Scotland was too great, and traveling on the train with a harp is a pain.



    4. My cat has a perfect internal clock - she will bat my face with her paws at 7 am (waking up time), will wail incessantly at 6.30 pm (dinner time) and will sit on the stairs with a hopeful look on her face at 10.30 pm (bedtime). For good measure, she is scared of strangers, apart from paramedics, who need her supervision while they're looking after me.



    Best guess as to which is the lie?

    This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

    Monday, 7 November 2011

    A Bad Case of the Monday Blues

    Mondays often find me in contemplative mood, and there are certain questions that come up in my mind again and again, week after week.

    Will I achieve anything this week?

    How many plans will I have to cancel because my body lets me down?

    Will I end up spending days in bed or even in hospital this week?

    There is a certain amount of fear associated with these questions. Fear that the next severe asthma attack or anaphylactic reaction will be my last - not just landing me in ICU, but worse; fear that my friends or husband will eventually get fed up with me being sick all the time; that I'm no use to anyone.

    There is also the unnamed fear that I might not be strong enough to handle whatever comes next. My body likes to throw curve balls, and also seems excessively fond of my local hospital, despite the food. I find hospitals scary places, which seems an odd thing to admit, given the amount of time that I spend in them, but every time I get that scared, tight feeling in my chest, and would like nothing better than to stick my head under the duvet until it all goes away.

    But, as many of you will know from personal experience, that isn't an option. The pain, nausea, fatigue, dizziness and shortness of breath will follow you under the duvet. They are in this for the long-haul.

    So I have tactics. I try to be prepared for the unexpected (I still need to show you my hospital bag and handbag), and try to make friends with the doctors and nurses. I keep good 'emergency lists' so that the ER doctors are able to treat me appropriately while they wait for my medical records, and so they can see the most important points in my medical history without having to spend several days poring through my (extensive) notes. I try to stay well hydrated so that my veins are as prominent as possible, keep my phone, kindle and laptop charged, keep a hospital bag packed, and keep plans with friends as flexible as possible.

    Every Monday, despite my fear of what this new and unknown week may have in store for me, I try to remember that it may have wonderful things in store. There are beautiful and amazing things to be found in each new day, and I try to spot them and be grateful for them. I am so grateful to you, dear reader, and to my friends, husband and family for giving me the strength to face this new week, and the hope that the good in this week will outweigh the bad.