More about KMSTC

Here I am, back in the tank again,  I come twice a week and apart from the lovely pure oxygen it is comforting to be with people from all over the place, with varying problems (but mostly MS sufferers) and symptoms, some who have been been coming for only a matter of months (that’s me, I’m very much a new bug) and others who have been coming years.  Monday morning at 10am is very much a routine session and I know three of the others (1 Fibromyalgia, 2 MS and the third, I don’t know.  I think she’s new). In particular on my right is Margaret, who has been coming here for years and years (I’ve just asked her, and she started in 1992).  Dare I say it, but if you met her you’d never think there was anything wrong with her except she uses a stick which is the only clue there must be something amiss.   Twenty or so years ago she used to come when the hyperbaric tanks were in a place they called “The Shack”, which was over the way from where this centre is now.  Various fund raising projects went on for some years before a more concerted effort was made and a local businessman matched every pound raised by the Centre.  The total needed for the new building and everything with it was £1.6 million, and having raised half that sum, the project was able to proceed.  It opened in 2015 (having moved the tanks across the field and into their new home) and is now offering all those treatments I mentioned in my last post, but perhaps most importantly in the Centre is a huge area, allowing plenty of space for all those wheelchairs and buggies that visit, as well as comfy chairs, tables, books, a kitchen and lovely people who are there to advise or support or just be a friend.  And I’ve come across many individuals who have been abandoned.  Not just by their spouses but also the system.  The NHS does what it can in its straightened circumstances but the time between appointments and counselling is ridiculously long.  I rather get the impression the professionals rely on the slow progress of this disease, and the fact it isn’t life threatening in the way Cancer is, for example.  Therefore sufferers of MS do not necessarily have the will, or resources to better their condition.  Thank God for this Centre because it is a haven not only for those who have been sidelined by the system but also for newly diagnosed people, like me, who don’t know what to do, or who to talk to or where to find like minded people.  My GP, who at least knows me now, and I’m not just Patient  X, has given me more than my allotted time, been on hand with hankies and has offered as much support as she could, but that was all she could do as a GP.

I hope I have illustrated how and why KMSTC has been a haven to me over these past few months.  There has always been someone to hand for advice or company. Support is there, in varying formats and I realise I am truly lucky to be living in this corner of England which has a Multiple Sclerosis Therapy Centre.

There is usually a chap here on Mondays, on this “dive”, who is very badly affected.  Not only wheelchair bound but he cannot use his hands and his speech is very badly affected.  He’s not here today and I know he has been in and out of hospital recently.

Just found out what the fourth person in the tank has.  She has MS too and is on the 15th of her initial 20 dives (the ones you have to do in the first four weeks).  She has had RRMS (that means the relapsing remitting Multiple Sclerosis) for 15 years and it is now worsening.  And she is finding it is already helping her, in particular with “brain fog”. That is an expression I find is used an awful lot when talking to fellow sufferers and I think I could put an awful lot of my befuddled thinking down to that! Particularly my arithmetic.  Those who know me well will remember that is a great weakness of mine.  No, seriously, I am not sure if what I think I have is the same brain fog other MSers have (I can’t keep using the word “sufferers”).  But since I’ve been using the hyperbaric chamber I now have a strategy.  I am coping better with the situation I now find myself in, or at least I feel I am, and I am sure I have more energy.  I’m not sure I’m moving any better and my right hand is worse, if anything.  If I could make that better I could manage everything else a lot better.  OK I can use it as an excuse when I hit the wrong notes when playing the piano, but I can’t sew.  Holding a pen is a big problem when I’m tired and doing anything where deftness is a requirement is a big no no.  Even playing Scrabble with my elderly mother is really difficult.  Picking up those pieces is not easy.

Riding is out of the question, as I have no strength in my legs at all.  I haven’t tried to ride a bicycle recently, but I’m not sure I particularly want to.  Two summers ago I had a memorable incident down at the Bay when I stopped my bike at a junction and stupidly put my right foot down while I waited.  My right leg is the weak one, and the next minute I was down on the ground with a grazed right hand and picking bits of stone out of my hand.  Two years ago, and then all I thought I had wrong with me was a wonky leg.

I’ve now left the Centre but as I left I photographed the board which shows the help this centre has received from local individuals, Trusts and companies.   I will post that photograph next, but will publish this one first.  I am scared I may lose it, even though I have saved it.  As well as losing my mind…