Me again :)

Yeah sorry, I know you were enjoying the peace.  I wrote an awful lot about being on a drug trial.  I thought perhaps I would write a little bit about NOT being on one.

So, to refresh your memory, I have a progressive muscle wasting disease called Inclusion Body Myositis.  The ‘progressive’ bit means that it will get worse.  It is not ‘all in my mind’.  It does not respond to ‘thinking positive’, ‘doing a bit more exercise’ or ‘getting out more’.  And now you know what it isn’t, you may decide to stop reading at this point.  For the less faint-hearted, here is a first-hand account of what it is.

It is a soul-destroying, unrelenting, miserable condition that takes your entire life away and replaces it with a daily grind that never, ever gets any easier.  From the first moment you wake up in the morning and find that you can’t actually move, to the last few seconds before you fall asleep at night exhausted from the effort of getting comfortable, you are pushed to the limits of your strength and endurance by the ‘simple’ (Ha!) daily routine of getting up, getting dressed, eating, toileting, picking up things you’ve dropped, maintaining a sunny smile at all times so as not to upset people, if you see any……… The only ‘safe’ activity i.e. no risk of falling, is sitting in a chair.  It’s a relief when it’s bed time, but that involves a precarious walk to the stair lift which then needs piling up with cushions and towels to make it high enough to get off at the top, and then of course is the devil’s own job to get your bottom onto because it’s too high.  The effort involved in getting off the stairlift, wobbling to the bathroom and back to the bedroom, followed by undressing and the almost insurmountable task of actually getting into bed is exhausting in itself, and coming at a time when you’re already tired, is a huge mental battle.  Finally you’re settled in bed and the more you think about not being able to turn over, the more you absolutely MUST turn over; the more you think about not being able to get out of bed in case you can’t get in again, the more you really, really want to get out– most nights I have a panic attack brought on by feeling trapped, some worse than others, but never conducive to a restful night’s sleep.

So, to help me through my days I have some invaluable pieces of electrical equipment – the stair lift, an adjustable ‘carers’ bed, which means the whole thing rises up in the air as well as head & foot adjustment, my electric toilet seat riser, and MacNish riser units on armchairs in the sitting room and dining room.  The armchairs and the bed plug into battery back-up units so that I’m not stuck if there’s a power cut.  Haven’t been able to install similar back-up for the toiler riser as it is wired directly into the mains, so just have to hope we never have a power cut while I’m on the loo.  The stair lift has a pull cord that will mechanically get it down stairs if there’s no power, but not up.  And of course I have my ever cheerful and willing husband to help with day to day stuff, and my lovely cleaning lady comes once a week to give us a good muck-out.  On good days I can do a bit of ironing or empty the dishwasher (never both) and that is the sum total of my contribution towards housekeeping.

Because everything is so difficult, I live my life in a haze of exhaustion and in a permanent state of anxiety about the next thing I’ve got to do in case I fall.  To the able bodied, a fall is a nuisance and can result in painful and inconvenient injuries.  To us with IBM, a fall can be catastrophic.  We have no strength whatsoever to save ourselves, and go down like a ton of bricks.  Broken bones, torn ligaments, strains and sprains are painful and sap our strength and spirit.  Obviously we can’t get up unassisted, and as the disease progresses we become less and less able to help ourselves while people try to lift us.  Colin says it’s like trying to pick up jelly with a fork.  If we fall forwards, we may not have the strength to lift our heads off the floor to enable us to breathe.  If we fall backwards, we are almost certainly going to hit our heads on something.  Either scenario is potentially life threatening, and although we are sensible and wear pendant alarms to press in the event of a fall, there’s no guarantee that we’ll be able to do that if we fall with our weight pinning down our good arm and of course if we’re knocked unconscious we can’t summon help at all.  Even if we can summon help, it can be a long, painful wait for that help to arrive.  The fear of this happening is utterly paralysing, and the danger is something we are conscious of the whole time we are on our feet.  We don’t know when we’re going to fall, we don’t gracefully topple over or trip and stumble.  Without warning our muscles just give way, as if someone flicked a switch and turned them off, and we’re down before we can do anything about it.  Thinking positive does not stop this from happening.  Our worst fear is having to (gulp) go to hospital.  Hospitals don’t understand us, they don’t seem to have any way of dealing with people who can’t get in and out of bed without help, who can’t use normal toilets and can’t do the physio they think we should be doing.  We hear horror stories of IBM patients put in the bed furthest away from the toilet, with no walking aids and no nurses available to help them.  Their ingenious solution is to put us in adult nappies, which they then don’t have time to change resulting in infections, further loss of mobility and, worst of all, utter loss of dignity.  Even in the best of circumstances, injuries involving long periods of bed rest result in further loss of strength and mobility.  These (and other) what-if scenarios run through our minds whenever we have to summon up the strength and courage to attempt any manoeuvre.  So we don’t do any more that we absolutely have to, and the downward spiral of getting weaker and doing less goes on.

Add to that the grief over the loss of our former lives, and the loss of all the things we thought we would be doing in our retirement years, and factor in the impact this has on our family and friends – the weddings we can’t go to, the grandchildren we can’t look after, the new homes we can’t visit and admire – and you may arrive at the conclusion that our lives serve very little purpose other than to be a miserable nuisance to everyone around us.  I would absolutely agree with that.  But I know so many people with this same disease who lead really active and productive lives using power chairs or scooters, who go everywhere and do everything they want to do, recruiting whatever help they need along the way.  They see no obstacles, only challenges to be overcome, with each success giving them confidence to tackle the next project.  They see the dangers, but refuse to be restricted by them.  Inspiring?  Maybe…..

I saw no reason to go down the wheelchair route – I was trialling a new drug and it was working for me, albeit very slowly.  I had absolute faith that this drug was going to keep me on my feet and would delay the progression of weakness and disability perhaps for years.  It might have done – but the results weren’t good enough for the drug company to keep pouring money into it, and they withdrew it without notice.  All hope for the future I wanted vanished, and I realised that I had only two choices:  to spend the rest of my life physically and mentally unable to leave my house, or to accept my physical limitations, admit that I need a power chair and make the structural changes to my house that will enable me to use one.  The thought of having that much freedom, after years of being confined to base, is absolutely petrifying but other people seem to manage it so perhaps I can as well.  Funding for the power chair has been approved by Social Services, a wheelchair-friendly door is on order and plans are being drawn up for ramps front and rear.  None of this will happen overnight (thank goodness!) so I have a few weeks/months to get my head round the idea.  In the meantime, the daily grind goes on and the truth is that a power chair will do nothing to help with that, it will just give me a few more options for how and where I spend my days.  I can’t help but wonder how things will pan out in the future.  I suppose I’m still hoping for the miracle cure, or at the very least that we’ll have access to BYM338 or a similar drug that will slow the progress of the disease.  A future without that hope would be a pretty bleak place, not one that I would look forward to at all.