it seems since Christmas that everything has got harder. I don't think that the progression has accelerated, more of a " straw " and " camel's back " situation. It is is difficult adjusting to any change but some have greater implications than others.
I think initially I go through a mourning period during which time I get depressed about losing the ability to do another task without assistance, but after a week or so you've worked out a new routine to accommodate the change. However the recent progression has taken me perilously close to not being able to do some significant things. As a result not only am I feeling gloomy about the loss of these abilities, but getting even more depressed by the stress involved with working out how to cope with the changes. And with one of the issues being my almost entirely failed speech ( a massive issue in its own right ) trying to communicate any thoughts about these changes is very difficult and it turns into a vicious cycle which can be truly overwhelming and I just feel very isolated trying to deal with it by myself in my head.
Apart from my speech, my stability is so poor that transferring is a pretty scary experience with a real risk of falling. This also makes the prospect of doing a transfer really stressful. The answer is to use a hoist but apart from the psychological barrier I have to overcome, which I have, it introduces other issues such as the need to have 2 carers present. I know its all do-able but its just the relentless addition of extra equipment, extra hassle, extra time and decreased independence, that sometimes is too much to bear.
The final new problem is that I discovered today, having finally been able to get out on my outdoor wheelchair, that my arms have weakened to the point where I can barely lift them on to the armrest to operate the joystick. I know it will possibly be only a few more weeks until it will be impossible; what do I do then. The arm weakness has also claimed my ability to feed myself. I've been struggling for the last 2 months but its just too difficult. So I've rented a device which will feed me. I used it reasonably successfully yesterday but tonight the pasta ended up all over the floor.
Ok, this is turning into a bit of a whinge so I'm going to stop. I'm just finding the inability to find solutions to the never ending hurdles too much at the moment.
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4 comments:
Hi Steve
I met up with Chris yesterday and he suggested I take a look at your blog.
Well, what can I say? First of all thanks for allowing me, and everyone else with an internet connection, to share your story. It may sound cheesy to say it is a privilege to read it, but I can’t think of another word right now. Without this documentary of what is going on in your life I would not be able to share your frustrations, or indeed marvel at the amazing levels of traction your Frontier X5 achieves in the snow!
I imagine the catalogue of trips and activities you have clocked up in the last year or so would put most Dads to shame, and to just crack-on and do these things is inspiring for anyone who reads this. The fact that you have also ensured (or should that be insured, or even assured?) financial security for Tracy and the boys is also a really significant achievement. If you hadn’t and you were knocked down by a bus then you wouldn’t have much time to worry about it. However, considering you do have that time to reflect then you are right to be comforted and satisfactied that you have fulfilled the traditional male role of the “provider” to his family.
Today, as I read your blog for the first time, your “whinge ahead” post seems to sit at the end of a list of achievements and events that prove you have taken control of your situation. That determination and perseverance from earlier months emphasise the frustration that you are now experiencing.
It is also so apparent that your physical state is a complete contrast to you mental acuity. That dreadful assumption that someone is incapable of making a decision (or they are deaf) because they are in a wheelchair is a strange, but common, phenomenon. When this is compounded by difficulty with verbal communication then your frustrations of being on the receiving end of such idiotic behaviour must go through the roof.
If there is one thought I will take away from reading your blog today it is that Steve Evans is still Steve Evans. Cheers mate!
I think you are supremely entitled to whinge. So please, go ahead! But it is hardly a whinge - just an honest account of the awful effects of this dreadful disease. Anna P
Steve, I continue to follow your blog and this doesn't feel like a whinge to me. You are telling us what you are encountering on a daily basis and how you are trying to find ways to deal with the huge obstacles put in your way.
It is impossible for anyone but you to understand how it feels but your blog is giving people an insight into your life, how it changes and the impact it has on you, as well as raising awareness of Motor Neurone Disease.
thank you for sharing it with us
Brendaxx
Hi Steve,#
crazy at it sounds your video of towing the boys in the snow made so many people at my work laugh. And then feel sad.
Please whinge. It helps us to understand what you're feeling and god knows if anyone should feel sorry for themselves it's you.
I did think about you when haiti was destroyed and actually I felt that you were the one person who shouldn't feel more fortunate than them. But altruistic as you are you sympathise. Amazing.
The gadgets sound good. Thank goodness you're techy (as in tekee.... not tetchy). Youre friends are patient. They'll listen to what you want to say. Can you do predict text?
Lol X
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