The other side of motor neurone disease

Much is written about the physical effects that MND inflicts on the body. I myself have spent the last three years documenting those changes here on the blog. However, there is another kind of onslaught going on, one that is even more insidious, one that doesn’t get written about so much. I am of course referring to the effect the disease has on the mind and of trying to come to terms with having something that is life-limiting and highly destructive, and where diminishing abilities give cause to wonder what each day will bring and what you’ll wake up to find you’ve lost. So here then is my journey from an emotional viewpoint.

I read somewhere once that there are a number of stages that someone faced with an incurable disease will pass through. First there is the initial shock of receiving such a devastating diagnosis. This is followed by denial, which in my case I suppose manifested itself in that period of time I spent early on trying to scoop up every last piece of information I could on the disease searching for a grain of hope. Anger is the next stage and for me this manifested itself in the frustration of how little is done to find a cure or a way of managing the disease. Grieving comes next as you mourn for the life that will be taken from you and saying goodbye to family. Finally comes acceptance as you eventually come to realise that no matter what you do you cannot escape your fate.

Well, that’s the ‘simplified’ version but perhaps another way of looking at it is the sheer range of emotions to be experienced as the disease progresses. Like a snowball things started off small as the difficulties first encountered were overcome to varying degrees and I was able to continue on with life with minimal disruption. Because I still had this illusion of normality all I really felt was frustration that things took longer. The first significant blow was when I was forced to give up driving, something I’ve been doing since I was a teenager. The loss of my independent mobility felt really strange in this car culture society of ours. Practically everyone I knew drove a car and now I felt excluded. It was the first real sign that my life was starting to unravel.

Having to give up work shortly afterwards had an impact on my self-esteem. Here was something that I had been doing unbroken since I was 14 (working in a shop after school) and now it had abruptly come to an end. All my adult life I had paid my way, never once asking for state handouts, and happy that I could contribute to society. Now for the first time I was faced with living without a steady income. But it wasn’t just the financial ramifications, there was also the social aspect of working with a team of like-minded people and the satisfaction of working in a good company doing rewarding work. Suddenly I found myself out of the workplace and feeling socially isolated for long periods of time.

The next adjustment I had to get my head around was accepting the fact that I needed some help. For someone living an independent life this was something I had not been looking forward to and I was quite apprehensive about it. But stubbornness and determination not to give in eventually lost out to an unrelenting disease. Initially it was just for mealtimes but even this was a big change and having strangers come into my house several times a day felt uncomfortable and invasive, even though they were obviously there to care for me. Suddenly a simple task like preparing a meal for myself had slipped away from me. It felt like my body was betraying me and that I had somehow let myself down. The disease had reached the stage where it was starting to encroach on basic living tasks.

Help with dressing was the next challenge I faced. Once again my stubbornness and determination prolonged the agony of trying to dress myself for far longer than it should have. I can remember even now struggling frantically in the mornings leaning against the banister rail at the top of the stairs trying to get my clothes on before my carer arrived, even though that was one of the tasks she was supposed to be helping me with! I can remember the days when I was frantic just because I couldn’t do up my trouser belt and I was thinking any minute now and she’s going to be ringing the doorbell! It all seems ludicrous now of course but back then I was still adjusting to having all these different people around me.

I suppose looking back one of the biggest hurdles to overcome was giving up my own personal care and the stress that put me under. With each passing week I would spend longer and longer in the bathroom trying my hardest to manage with arms that had no strength, frantically trying to hold on to my dignity. But eventually, and in desperation, I had no option but to relinquish these activities. Of course I’d known all along that sooner or later I’d have to but it didn’t make it any easier to accept. I don’t give it a second thought now but back then it felt distinctly uncomfortable being washed like a baby by people I was only just getting to know.

As the paralysis creeps forward so too does the fear. The sinister way in which the disease crept forward robbing me of strength and mobility is truly frightening. I think the first time I experienced a sense of fear was when I went out walking one day early in 2009. Halfway through my hour long walk and at the farthest point from my home, my legs, which up to this point had been sturdy and reliable, suddenly started to grow weak. It felt like all the energy was draining from them. Fearful that I wouldn’t be able to support my own weight for much longer I looked around anxiously for somewhere to sit down. But there was nowhere. I knew I couldn’t just sit on the ground for fear of being trapped there so I had no choice but to carry on. The dilemma I faced was do I walk fast and risk burning up my energy even quicker or do I walk slow and use up too much time? By the time I did get home I was shaking. It was the last time I ever walked so far from my house. In the following weeks I made ever more feeble attempts at going out for a walk by myself as my confidence in my abilities began to crumble. My world was beginning to contract.

As my legs grew ever weaker I started to feel a hostage in my own home, and tackling the flight of stairs each day became something that I would only do when absolutely necessary which meant that most of the day I would spend sitting at the dining table working on the computer. Walking up or down stairs became a nerve wracking experience as I wobbled side to side on jelly-like legs whilst immovable arms dangled hopelessly by my side threatening to upset my balance. It got so bad at times that my confidence completely left me and I was left stranded at the top of the stairs too afraid to risk stepping off the landing and walking downstairs. Eventually my legs and general body strength became so weak that I was unable to get off the bed without assistance. This brought with it further stress because of the need to visit the bathroom during the night and the risks it would entail. Finally of course I had to seek an alternative solution for the call of nature which led to some initial embarrassment on my part.

Further embarrassment followed as I lost control of the fingers in my hands. Above all else I was desperately trying to hang on to at least one shred of dignity and for a few weeks I struggled and struggled to hold onto toilet tissue long enough to use it. Eventually my hands became so useless that the tissues would simply fall through my fingers. I then faced the embarrassing situation of having to ask someone to perform this most personal of daily tasks. I felt truly awful.

In the run-up to losing the ability to bear my own weight last summer I used to dread having to stand up to go to the bathroom. I would practically be a prisoner all day long sitting in a chair only moving when I absolutely had to. Even then I required an increasing amount of effort from my carers before I was upright and stable. On wobbly legs with my carer close at hand I would stumble along to the bathroom. When my legs finally gave out it was something of a blessing in disguise as all the stress I had been dealing with everyday suddenly went away. No longer was I fearful of falling over.

And that brings me up to date with my emotional journey so far.  I am now living with the real fear of a fading respiratory system and all that entails making me effectively a ‘positional prisoner’ spending large amounts of time on the bed afraid to go too far for fear of suffocating. I have become heavily dependent on TV and computers for sensory stimulation. I’m very conscious of a ticking clock counting down the time left to me.

What I hate so much about this awful disease is that it is not enough to just take your life; it has to systematically dismantle it first by taking away so much that makes living enjoyable. Some time ago now I had a lovely dream in which I was cycling down the country lanes I used to so frequently pass through when I was healthy. The sun was shining, the sky was blue and there were fluffy white clouds as far as the eye could see. The fields were full of sheep and cattle and occasionally I would spot a horse. As I cycled past the hedgerow with its brightly coloured wildflowers, small rabbits would hop back into their burrows whilst colourful butterflies would flitter about the hedgerow. I was cycling fast, muscles pumping hard, enjoying the exhilaration of wind passing on my face and through my hair. Suddenly something didn’t feel right and as I slowly retreated from the dream I began to feel disoriented and couldn’t understand why I couldn’t move my legs and arms any more. The full force of where I was and what I had suddenly hit me and in that moment I could feel the tears well up in my eyes for everything that I had lost. In that moment of grief I would have given anything to return to that moment and live there.

Sometimes I lie in bed pondering the question of why me, turning it over and over in my mind, as if it was a Rubik’s cube and I’m desperately trying to find the combination that will reveal the truth. A futile exercise of course, but just an example that the disease is never far from my mind. How does it make me feel? Well I got it at 46 so I suppose the truthful answer is that it makes me feel that I have been cheated out of precious life and by several decades. I’m not bitter, just saddened and frustrated. Sometimes there is even a feeling of guilt – did I put myself in harms way by doing something, or perhaps going someplace or maybe even eating something that triggered it at some point in my past?

Do you know what the cruellest part of all this is? My mind is the same as it ever was, with the same hopes and dreams and ambitions but it’s trapped in a broken body whose warranty has run out and there are no spare parts. There is a countdown clock hovering above my head that I’m powerless to stop it. I’d cry if it would do any good. I remember reading some time ago that to find any kind of peace with something like this you need to find a way to come to terms with life the way it is not the way it was. In other words stop grieving for what has been lost. It’s good advice but it’s something I’ve never been very good at following. So where does that leave me? Exactly!

Having to give up hobbies and interests that gave my life meaning and helped define me as a person has been heartbreaking. I really miss the thrill of composing a photograph and holding a camera, or going out cycling or walking, or even just pottering around in the garden. At times it seems like my world has contracted down to a hospital bed about 6ft x 3ft even though my mind yearns to be free.

Has MND brought me any happiness or can I extract anything positive from my experiences? Surprisingly perhaps the answer is yes. I’m certainly not the kind of person to allow myself to wallow in self-pity and depression for years and if I ever get the energy to write something like this again I will put a few words together on that subject. But the purpose of this post was to describe the emotional rollercoaster that living with MND can be as you try to keep up with an endless series of losses.

Having MND is a bit like chopping into the roots of an old established tree. Eventually it will die but it will be a slow death. Come back tomorrow and it will still look the same and the day after that but its fate has already been sealed. My own fate was sealed from the moment those very first neurones started dying but like the big old tree my body has taken a few years to shut down. What is it like living with motor neurone disease? The only true answer I can give you is that it is a descent into hell.

Mark

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Tuesday, July 5th 2011

The first week of full-time care

It’s now been a week since I returned home and moved to 24 hour care. The transition has gone very smoothly I’m pleased to say. Filling in all the blank spaces so that I am never without somebody else being with me has given me greater peace and security. One big fear I’ve had since losing my mobility has been the thought of being trapped alone in a burning house. Now that fear has been removed and I feel more at ease. Most of the extra time I’ve gained is of course ‘invisible’ to me as hopefully I will be fast asleep. Nevertheless I have been able to spend a little bit of time getting to know my new waking night nurses.

I have a new mattress. The one I was previously using (just a foam core) was not designed for continual use like I am subjecting it to now. The new one I have is a super duper alternating pressure mattress designed for constant usage. Over the past year or so I’ve tried several types and the only one I could really get on with was the most expensive one (which I’ve been using at the hospice) which is not available in the community. However, the kind folks at the hospice have been able to negotiate with the MND Association for them to lease one on my behalf. It arrived a few days ago and has already made a big difference to my comfort level.

Now I am back home I’ve been able to play around with my wheelchair to see what positions I can tolerate. Unfortunately it doesn’t look like I’ll be able to continue to work at my computer whilst sitting in a wheelchair because sitting upright causes shortness of breath and difficulty speaking. As this is the way I operate my computer it will no longer be practical as I would be out of breath in minutes. What I can do however is to lie in a semi reclined position and either sit on the patio or watch TV for a few hours. All work on the computer is now being done from my bed with a small table positioned over the bed with my laptop placed on top. At least this way if I get tired I am already in the best place to relax.

I’ve been suffering from terrible skin irritation lately. It’s mainly around the underside of my lower legs, basically the area in contact with the mattress. We’ve been trying various creams without success and we’re still looking for a solution. I’m also feeling very tired lately. I just cannot seem to keep my eyes open for very long. I must spend half my day drifting in and out of sleep. No wonder I don’t seem to achieve much any more. Concentrating for long periods is slipping away.

Apart from that the past week has been a busy one for appointments with district nurses and doctors making regular calls. I’ve spent most of that time in bed reading books and magazines during the day and watching TV and video at night.

Mark

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