Tuesday 6 November 2012

All At Once

 This is not my most succint post - more of a thought exercise than anything else. I'd be interested to read your thoughts on the subject if you'd like to comment.

Chronic illness is a funny old thing.

In my time on the wards the last few weeks I've talked to a few patients who have been diagnosed with illness or impairment less severe and less disabling than my own but who are receiving intensive, inpatient treatment whilst I am currently 'only' under the care of my GP.

It is hard in my situation not to compare my own experiences with those of the patients I interact with, and I don't believe it is inappropriate as long as it is an occassional ponder on my own time and that if it does affect my interaction with the people I come across as patients, it is in a positive way (for example to remember that I am not a good historian when I am upset and in pain, which helps me to be patient with someone in a similar situation).

Comparisons are of course difficult (especially between different conditions/symptoms) and mostly subjective, but for this train of thought exact comparisons aren't really the point. Nor is the point to downplay these folks' experiences or to suggest that their care is inappropriate, as I don't believe that it is.

The point (finally) is to reflect on the difference between acute and gradual onset of chronic illness or impairment. There are two similar topics that you will have read/heard a lot about if you've been hanging about the sick/disabled blogosphere for a while :
- invisible vs visible illness/impairment
- congenital (from birth) vs acquired illness/disability

I don't hear/read a lot about this particular topic, although it falls in to the same category of illustrating the diversity of experience within our community. It also lends itself to the same 'which situation is better?' philosophising. (Spoiler : tends to come down to 'both have pros and cons' or 'better the devil you know')

It is strange to know that if I had woken up today in this state having gone to bed yesterday perfectly healthy, I would be in hospital now - yet over the course of all of this I have only once been inpatient (impatient is another matter...). This is attributable in various parts to :
- good fortune on my part - some other folk with my conditions are much more severely affected than I and require long stretches in hospital
- medical knowledge, social support, good primary care and accumulated experience and equipment which allow me to manage things at home which I would otherwise need to be admitted for
- and, not so good, some very bad calls made by previous members of my healthcare team

I see these people whose lives have been transformed in an instant and their experience is both entirely familiar and entirely alien.

When I first used a wheelchair, it was an indescribable relief because it dramatically increased what I was able to do and where I was able to go - yet to someone who has suddenly lost the use of their legs using a wheelchair often dramatically restricts their mobility (especially at first).

I have been on regular medication since I was a child. I didn't go from nothing to 22 tablets a day overnight. I am used to the routine of ordering repeats, setting reminders, carrying meds around with me. I am used to balancing side effects with therapeutic benefit. I am used to justifying my use of pain killers to any doctor who vaguely decides I am too young for opiates.

I am used to the restricted diet, to constant pain and nausea, to needing to assert my right to adaptations. I am used to doctors touching my body and to stripping my entire existence down to a list of relevant symptoms. I am used to the paperwork, to complete strangers asking personal medical questions, to needing help with 'basic' things. I am used to putting on a public face because even people who ask how I am don't necessarily want to know.

I have learned these lessons gradually, often the hard way and by making mistakes. I have been mostly taught by other sick and disabled people, including those in my online community. I have had very little multidisciplinary input considering the combined impact of my conditions - and the care that I have received has generally been a fight to access.

I think the learning curve would have been greatly steepened in an acute situation. I think my understanding of the situation would be more medicalised at first if I had been learning how to be in this new body from healthcare professionals rather than from other sick/disabled people. I would have had physio, OT, orthotics and social work involvement from the word go (at least in theory), rather than in a haphazard way.

As for grief and acceptance I am not sure. I know that sometimes it feels easier when a lot of things change all at once and then the dust settles, you can evaluate where you're at and start to move forward. Sometimes it is easier when things happen bit by bit, giving you a chance to catch up and learn to cope with each step. Sometimes it helps to not have a 'normal' before to compare to - I have always been sick to some extent.

I see this process as a journey rather than a binary state. It is amazing in the magnitude of serious illness and disability what it is that really makes you break down. A couple of weeks ago I had a really bad day of grief because I was finding being gluten free so difficult, when in the scheme of things - even the big picture of my dietary restrictions - it's not that big a deal.

And by the way, the things I said I'm 'used to' - it's not quite as simple as that. I suppose I mean that often I can do or experience those things without thinking much about it. Thursday nights I sit down with my dosette box and dole out my pills. Strangers ask what's wrong with me and I say 'that's a very personal question that I'd rather not answer' or 'I have a problem with my joints' depending on situation. But sometimes these inconsequential things are quite unbearable. I can't stand the thought of the BP cuff inflating around my arm one more time. My everyday pain levels are suddenly just too much to cope with.

 My take home thoughts are these :
- Acute management is much better than chronic illness management as a general rule. Initial care tends to be better for something that happens 'all of a sudden', but then we all tend to end up in the same slightly leaky boat.
- Tied to this, community access to multidisciplinary support (physio, social work...) needs to be a lot better and easier.
- No matter the speed of onset, chronic illness/disability will often entail a period of adjustment and some degree of grief.
- A really positive aspect of chronic illness/disability can be to share experience/advice/support with individuals who find themselves in the same situation - especially in an 'all of a sudden' context.

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