Hi! First post and all that jazz…
To cut to the chase - I’ve just been diagnosed. To cut it even shorter - noticed things weren’t working properly (numbness and tingling in leg and arm and then face) last year, went for an MRI at the start of March and then, this afternoon, told by a doctor that I have MS. I think I shocked the doctor by simply nodding, saying “right, okay, now what do I do about it?” (I think he’s used to people losing it or worse) and then, telling my family this afternoon - reactions ranging from shocked to sympathetic to the old tried-and-tested “Have you thought about using this herbal remedy?” and all I could think was: this isn’t the end of me. I’m not entirely sure what sort of MS I have, but I’ll be damned if I’m going to let it destroy me. Am I angry? Yeah, I guess I am. I’m angry that my body has betrayed me in this way. I’m angry that it’s happened to me and I’m angry to think that people are now going to start treating me as though I’m made of glass. I’m also angry because thoughts have been put in my head that my employers are going to treat me as a liability, that I may lose my job, my income and my home. I’m angry because I know that there’s no current cure for MS and that is going to affect my future career prospects - I’m thirty six, I’m nowhere near ready to just give up. I’m angry because I’ve been given the idea that there was something I could have done to prevent this, even though I’m sure I could never have. And because I’m angry, I’m going to go at this fighting. I’m not going to let this condition break me, get me down or affect or effect how I do things or how people view me.
This morning I was in my bed dreaming of moving north, to Inverness, now I’m sitting here wondering if all of that is gone now, as if I’ve been handed a big sodding “get over dreams, kid, your life is finished” and I just can’t think that way - I spent the better part of my teenage years letting people make me think that way, most of my twenties believing that and I’ve only just started to think of myself as someone of use, of worth and now this. Is it normal to feel this angry and frustrated? Obviously I want to channel the anger to something worthwhile (making bread is brilliant when angry as you can really take the frustration out on dough), but, argh. I’ve been trying to find out what living with MS is like - does it mean that I have to become bedridden and a shut-in? I’ve yet to see a specialist and see what therapies and treatments may be suitable, but, good god, the frustration is strong.
(Sorry for the rant!)
That was an excellent rant. Well done! I’m in a not dissimilar state (see the “in shock” thread) - although formally still “only” CIS at the moment. I’ve taken up boxing training - decided it is good for fitness, cognitive speed and anger management. I am also researching the strongest drugs I can (hopefully) take to try and cage this beast. Not sure where your thinking has got to on that, but you may want to google “Tracey’s Lemtrada story” for a blog by a lady with a very similar attitude who is currently battling (and seemingly winning - God willing)
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P.s - if you have t found it yet Shift MS is another good site for info and to let off steam (and for some randomly dirty jokes from a chap called George)
I could have written something very similar myself 3 years ago! I challenged my anger into getting on the best most effective DMT asap. I found the best neuro, best GP and best MS nurse available to me. I did my own research, screamed from the roofs tops to get the best treatment / service possible and put my health first.
You need to know what type of MS you have. This is critical as it defines your treatment options. Ask to be referred to an MS nurse if not already and get the ball rolling.
If its any comfort 3 years on I’m doing fine. My life has not changed and my employer was/has been supportive.
Prognosis is very uncertain with MS but taking control right now will help you in the long run.
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I was diagnosed atect 38 yrs of age when I had my 1st relapse and was told at the time there were no medications available due to 1st relapse. Over the years I’vegp had small relapses treated with meds from my gp. I was let down by the post code lottery! But, after a relapse last year and a change in the way medication is offered (NICE guidelines advise DMDs as soon possible after diagnosis now), I’ve pushed for treatment. still active, slower at walking nowadays, but cycling is what I enjoy and I can do that with no problems :-). This year I will be 50 and things are mostly good. I made sure I was tested for vit d & vit b levels and was found to be extra low on my vitamin d so after 3 months on a super high dose I now take a variety of daily vitamins to help. I also follow a new diet (mainly vegetarian with fish & avoid dairy). I cant be certain it helps as its too soon to judge, but I feel I am more in control and thats important for me! Research your options so you’re prepared when you have your appointment, good luck & stay positive x
Yes, Punchy Dragon, it is.
Honestly though, however you are responding is normal for you - there are no formal procedures for responding to this kind of situation. Whatever form your reaction takes, just go with it: your system knows best how to deal with things in the best way for you. Just keep reminding yourself that you won’t always feel as you do now because you really won’t - you will reach calmer waters, hard as it is to believe that now.
Alison
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Punchy Dragon,
Being angry is a completely reasonable response. I have at times been incandescent with rage and didn’t always spare family or friends from my wrath. However I would humbly suggest that you do not let the anger consume you, find the useful bits and channel your energy into positive things. I had a light bulb moment when my MS nurse suggested that my anger / rage was diverting huge amounts of valuable (and scarce) energy. I still have the odd angry time but on the whole I am pretty mellow with the notion that “it is what it is, get on with it as best I can”
I have had some amazing times since my diagnosis in 1991. Your life is not over and one thing MS can never take away are your dreams, you just have to adapt to the moving goalposts.
…after this you are probably angry with me too, but trust me when I say you will be amazed by how resilient you will be.
Good luck and all the best
Mick
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Yep, youre very normalto feel angry, bitter, aggrieved andwhy has this happened? Its what everyone goes through at some stage or other.
But to answer your final 2 points…
no, not at all.
If you choose to become bed bound and shut-in,then that`s what will happen. Some folk are like that, as they cant find the energy or will to fight. Or this could happen for a brief time now and then.
I usually have one day a week in bed, to rest my body and gather my thoughts.
One thing you should do for your own well being, is to pace your activities. Don`t feel you have to be all gung-ho to prove a point.
Now where the heck did you get that idea from…that one someone has intimated you have caused yourself to have MS? What a load of old tosspot nonsense!
I know of no way that could happen to anyone. Smoking, illicit drug taking, nor driving on the wrong side of the road and other rediculous notions would never cause MS!!!
Okay, now you`ve ranted your self silly, you need to let the news sink in, find your MS nurse and ask if there are any drugs to help your type of MS.
Come talk to us as often as you wish. We get you!
pollx
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