On my way into KMSTC for my last hyperbaric session, I was planning what I was going to write about. I have stated before that I do not want this to become a Dear Diary affair, and the whole idea is just to keep you informed as to where I’m at in terms of dealing with this monster and along the way maybe enlighten you as to what MS is. I have directed you to the MS Society and in terms of books, Professor George Jelinek for the sort of information of a very general nature. Everyone’s version of MS is different and that is why it is so difficult for those specialists out there to diagnose it. And then when they have, there’s not a lot they can do about it.
I’m feeling rather negative about the whole thing at the moment for reasons upon which I may elaborate. But first I want to let you know about one of my fellow “divers” today.
We are in the small tank, which seats four, 2 of us have MS and to my right is the carer of a lovely young girl with long blonde hair in a wheelchair. The carer is gulping oxygen as she has found it helps with her asthma, but her charge is here because she is partially paralysed. I had made a guess that she had had some sort of accident, on a horse maybe, and that turns out to be the case. The oxygen is part of her recovery programme. I won’t go into the details of the accident but I mention it as it has rather knocked me out of the self pitying groove I was getting into.
It’s not been a great week and I suppose something positive to say about it is that the pain has been controllable. Cobras have had their hoods tied round their necks. Monty seems to have been rather overwhelmed by my box spirals and is staying long and straight and although Esther and Edred have had a little excursion they’ve been quashed with diversions.
But there have been reminders of the life I once had, and will not be getting back. My Life Coach had extraordinarily got me thinking positively about the new and delicious life I am about to begin; embarking on a whole new way of living and relishing it. However, the reality of what has to be changed on a practical level is not that straightforward. I try to sit back and take a more laid back approach, but I find that difficult when I see obvious mistakes being made around me.
And my state of mind has not been helped by pieces of information about MS which have been made aware to me. Like how dependent I will become on others. For everything. At the moment I am able to hold some sort of independence. I am managing my limitations and so long as nothing unexpected crops up, I’m living a life. Then suddenly I see something I used to
do (and took for granted) and realise I cannot do that any more. Ride a horse; swim in the channel; run on the beach. “Well”, I’ve thought “I’ve done that. And aren’t I lucky that I have done all those things. Time to do something different”. But then, just meeting friends for lunch is not fun. For a start, no alcohol and following a diet that is supposed to be low on things that cause inflammation (we’re talking about nerve endings here not a joint). OK, that is quite easy really. it’s when I realised I have nothing to contribute to topics of conversation: my world has become so small. Worse still, when I do say something, I am ignored. Has my voice gone too? Tell me honestly, when you talk to a wheelchair occupier and driver, who do you talk to? I know which I used to do, because I’ve just done it. But I have had a life. A very full and productive one, unlike the girl in her early 20s sitting not far from me.
Up until a few days ago I was possibly in denial of my condition, but I don’t think I was. Just thinking positively. But all of a sudden the very real dimensions of how my life will be have been thrust upon me. And the worst part is losing my independence and being totally reliant on others.
Is that me?
Mandi’s blog 
You are a wonderful beautiful person ,who has such a big heart ,a very generous and thoughtful spirt . It is ,of course ,incredibly difficult to be the recipient of all the kindnesses you have bestowed on many , I totally understand ,but friends will love the privilege of your asking for help and feel sad if you don’t .so please shout !
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First thoughts on your very sobering blog. Finding out who the new person that you are will take time and keeping positive will make that journey more interesting. Just like your life before there will be wobbly moments, but that’s nothing new.
Losing independence is a pretty unpleasant state of affairs but as we are all getting older it will come to all of us and those who fight rather than accept the inevitable seem to be much grumpier and more negative than those who don’t. I’m thinking of aged relatives here! As far as who you are when you are in a wheelchair is rather dependent on the individual. I’ve taught many kids who are completely wheelchair bound..brittle bone disease, spinal muscular atrophy and many others and who they are is less about the wheelchair than their character, ditto the adults who I come across. Many non wheelchair bound folk have difficulties with life as well; Aspergers, cerebral palsy, OCD etc and these conditions can be very difficult to overlook when talking to them unless they simply do not allow their condition to define them. Once again it’s down to the character, something you have in buckets!
Accepting the physical restraints is a whole new problem but you are still the same amazing person. You still have all your life skills, these now need to be adapted to fit your new life. Your friends also have a journey to learn the new you but bugger those who don’t/can’t embrace this!
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