Visible Reminders of Illness

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

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

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

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

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

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

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

Is it ok to be scared?

Of course it's ok to be scared.

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

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

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

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

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

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

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

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

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

Am I still scared?

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

Rebellion

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

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

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

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

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

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

This is my reality. Every single day.

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

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

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

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