In 2010 I received what could only be called a wake up call to get my life in order, two simple letters MS. It worked as in 2011 I married my partner Jo who is a wonderful woman, lets face it she could have run a mile when I became ill but she wouldn’t hear of it and in a way it has made us stronger.
Over the past 7 years I know I have been lucky, great medical support, neurologist from Kings Hospital (She’s German and will not stand for any rubbish) meds as and when I need them and apart from fatigue a little drop foot and a bit of pain, I have managed, in fact I am currently training to do a 4 day charity walk to raise money for MS.
However, to feel that I am slowly losing my mind I think is a little underhanded especially having been gifted a quick witted mind with the ability to remember thousands of songs, lines for plays, peoples faces and their storied, their holidays, kids ect (In truth I was never that good with names!) I know it could be a lot worse in some ways but I am getting a little sick of asking people when are they going on holiday when they went last year or telling them the same joke that I apparently told them last week or even just forgetting that I spoke to them at all. People are beginning to look at me funny as they clearly think I am losing my marbles, which appears to be the case.
I have to be frank about this God, I do wonder sometimes if you had your mind on the Job when you designed my head, the inside I mean, in truth it came as a bit of a shock that I already had holes in it, althgough I have been assured that this normal. To add extra holes, however, is not fare and I cant get this niggling feeling out of my mind that there might have been a bit of a cock up in this whole hole area, excuse my pun! My biggest fear is that if things continue to get worse where will it end, I mean will I lose everything, my wife for example because if that happened I would be lost. So I would like to request to keep my mind if at all possible after all its of no use to anybody else and like my Land Rover, its a bit leaky and makes odd noises at times but its mine and I quite like it.
Im not religious. But I prayed when the symptoms began, when they got worse, and again and again as they got worse and worse, and I prayed like crazy when I went for the MRI results. Maybe I’ve been praying in the wrong direction. Or praying on the wrong day. Maybe the signal is poor here in West Wales. Maybe there is some divine purpose to my life screeching to halt and turning to s***. Maybe there just is no god. God knows.
Hi, I have a theory…who doesn`t?..and this is how it goes.
you feel you were given an unfair deal in getting MS…well yeh, most sufferers do…but then…how many folk would be out of work if it were not for folk like us…ie
GPs, neuros, the phlebotomy gang, the podiatrists who fit us with splints and ugly footwear, those guys who make the splints and ugly footwear, the lads who deliver the splints and ugly footwear to the podiatrists clinic, the continence nurses who prescribe pads for those who need them, then theres the ladies and gents who make the pads, let`s hear it for them when we wee ourselves…yaaaaay!
I could go on…I will…
what about the guys who operate those big white tunnels that take a million zillion pictures of our grey matter and other bits and pieces of our bodies, plus the engineers who build those big white tunnels, and think about poor Mrs Whoever, the neuros secretary who cant get the appointment letters out to us, because shes constantly being bombarded by phonecalls from us asking where our appointment letters are!
So you see…we DO have a use afterall!!
Aside from all that Jason, I empathise with your concerns about your future health…if you do in fact lose your mind completely, you may find yourself a resident of Happy Haven, a place for folk like you, and Mrs PPMS, Mr SPMS and me, Mrs Poll and well all sit in a row and smile at each other wondering how the chuff we got here and whats for dinner…or have we just had dinner?
I hope that you start to see some light Bob, sounds like your having a tough time. Liked the positive response from Polls, made me smile.
If I get the deal Alison I will certainly post it here.
Like you Polls, I have a theory, as you say who doesn’t. Whether you believe in a God or other Omnipotent being I think the Key word is belief. I have to believe that I will not totally fall to pieces, I have to believe that medication will slow down the MS to allow me to continue to work, walk and hopefully, think! I am fearful and I think that’s where my belief comes in.
However, Polls, if I do lose my mind it sounds like I will be in good company!!!
True enough. I guess Im waiting for the shelling to stop and will then wander round and get use to the new new landscape. I did a bit of work on a journal article today and so I guess that is a good sign. Thanks as always for your replies and hope u are doing OK.
And here is me pinning my hopes on d m d.I don’t want to go to haven .or into to tunnel for another m r I I want to enjoy my coffee again it tastes like s h I t now due to my sense of taste has changed .I don’t want to say a prayer,I done enough of that when I was in convent school,and oh! I did say enough hail Mary’s to paper the whole chapel so why do fear so much .a I know I have m s boo h o o
I wonder if I should have started my letter with another name its just that I could not think of anybody else more senior than him.
I understand that not everyone has a belief in a God but as I said in my last post, belief in myself is just as important.
I am sure that like everyone I have my down moments and I am fearful of my mind slowly turning into marshmallow but I have to believe that this will not happen because without belief in myself, I would just sit down and stop!
I am sorry Rosie that your taste has been affected and can only begin to wonder how horrible that must be but I am a great believer in the ability of the brain to re-rout signals and so hope that yours does to get you back on the coffee!.
Cat Women Carol, I think that the German’s just have a different approach to MS. I have been told by mine, in 2011, that most UK Nero’s would have waited for another ‘event’ to happen before putting me on meds, even though my first paralysed my right hand side leaving me unable to walk. This sounds BONKERS to me, allowing someone to be further damaged before helping them. However, my Neurologist offered me treatment straight away and I truly believe that it was this decision that has kept me walking, talking and working (not all at the same time however, after all I am a Man!)
My fear is that if and when I get to heavan, it will have been privatised and I’ll be kicking myself for not having taken out after-life insurance. Hope the DMDs do work well for u Rosie and that the coffee tastes good again soon.
Mmmm been thinking about this one for a day or so…hurts my brain BUT I am NOT letting anyone or anything take it!
I am a great believer in self belief, I have no religion or religious thoughts, I was ‘dragged up’ through the beliefs of the Roman Catholic faith which was my parents choice not mine…,each to their own…if belief in a greater force helps people find peace and acceptance then that’s great.
Carry on as best you can, regardless…for in life in general we can not spoil every day by worrying what might happen to us in the next day.
Accept DMD if suitable to try your best to remain as you are and with your strength and support of family we will make great of this life irrespective of those haunting 2 letters that have been diagnosed and bestowed upon us…,