what will MS take away

What will MS take away?

This will sound a a bit crazy.

I was diagnosed last week. For about a month, since I started to suspect MS, Ive been obsessively testing my reaction times. Initially, this was to reassure myself that I could not have MS. But, since the diagnosis, its been to reassure myself that the progression to date has not been so great. TBh, I simply havent been able to stop myself.

Anyways, I noticed that I was getting auditory reaction times (some under 100ms) that should not be possible and this was on different websites.

The point of this post is that now even things that should make me smile make me even more depressed. I knew that, despite being pretty rubbish at most sports, that my reaction times (when I was paying attention) could be pretty good. But I didnt realise they were so good until now. And now i know they will quickly decline.

I never really appreciated the good things I had, like good hearing, eyesight, reflexes etc, until I lost them or faced the prospect of loosing them.

I know this post is a bit odd and I will regret posting it. Its just that Im in a dark and strange place and wanted to share something with others who might understand. The real problem is that I cant really come to terms with how much I seem to have lost or thrown away.

hi bob

i understand the difficulty you have to dredge up even a bit of positivity.

but although ms does take from you, it also gives.

a year further on and you will realise that you are no longer rushing everywhere, that you have time to notice and appreciate things.

my thing is the sky, it is always changing and i find it so beautiful and calming.

i love its moods. stormy sky is scowling etc.

other people will have gained other things.

you will also learn to listen to your body and appreciate it more (except for the pesky bladder).

it isn’t you who lost/threw away anything, you simply were unfortunate enough to have a neurological condition.

there must be something that you always wanted to do but didn’t have the time.

try it!

i have learned to appreciate my central nervous system, i took it so much for granted.

amazing thing it is.

you need to get out and meet other people who are living good lives with ms.

the ms therapy centres are good for this.

if you are down, you will receive compassionate understanding.

if you’re ready to have fun, you’ll receive this.

wishing you happier days

carole x

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Hi Bob,

I don’t think your post is crazy or odd. I have done similar things myself.

When you notice that your body is undergoing changes that are unexpected and unwanted you feel the need for a benchmark to see if you can detect a pattern.

In my case I kept a chart of my weight. Another time, I measured the difference in size between my two thighs for several months.

The thing with MS is that it is impossible to predict the course, or speed, of progression.

So the trick is to learn how to Relax.

Cross each bridge when you get to it, because it’s impossible to do otherwise.

For most things that MS throws at you there are aids, therapies or medicines that counter them. This helps to keep an even keel.

But most importantly you have to be accepting of change.

This is where this Forum comes in. By sharing your hopes and fears, you’ll find that there are others who are experiencing the same things. And that helps an awful lot.

Regards,

John

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I remember being newly dx and berating myself for having taken life/health for granted and how could i hve been so blind? And great intentions about appreciating every moment from now on, the scales having fallen from my eyes etc etc.

Guess what? It wasn’t very long at all before I was grumbling about my the parcel having arrived late and my cake having sunk and the shower having started to drain slowly and how THIS INTOLERABLE BLOODY HEAD COLD WAS RUINING MY LIFE!!

You get the picture. Your normal self - for better or for worse - just reasserts itself, whatever your intentions. However much (in my case) I wanted to become a smelling-the-flowers-type, comtemplating life’s wonders in tranquillity and making the most of the moment and regarding the arrival of MS as an opportunity to become a better and wiser person, none of that happened. Once the shock had passed, I looked in the mirror and there I was, much as usual.

Here’s a prediction: once the shock has passed, you will look in the mirror and there you will be, much as usual. Because normal service will have been resumed (with a few adjustments, admittedly, and the prospect of many more), but you will be dealing with whatever comes along.

Hang on in there.

Alison

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When I was first diagnosed it put me out of the game for about 2 months, then as my symptoms remitted gradually over the next few months I started to feel very good, in fact I even started to doubt the neuros diagnosis because I felt on top of the world.

When my symptoms were slowing decreasing I would ā€œtestā€ myself by doing silly things, like hopping on one leg around the living room to see if I could still hop !!

I would walk along the street then gradually pick up my speed until I was running for my life like a lunatic.

If there was a straight line painted on a super market floor or a line on a pavement I would walk along it to test my balance.

The wife thought I had gone nuts, but it was my way of reassuring myself that all was good and things are back to ā€œnormalā€.

Unfortunately MS has a bad habit of not wanting to play the ā€œnormalā€ game, and sure enough the neuro’s diagnosis turned out to be correct all along, obviously a case of wish full thinking on my behalf that he was wrong.

I would say that it was about a year or perhaps a bit longer before I started noticing that the MS symptoms were starting to show again, and then gradually I had/have the symptoms with me almost everyday some day worse than others and always if I over did things, not obvious to anyone looking at me, but I could definitely feel things were not right.

Today almost 4 years on my strength is no where as good as it was, my walking distance & balance can be awful some days, even worse if I exert myself.

Stiffness and fatigue are probably the worse things for me.

I am still working, and in fact I hold my own very well amongst my work colleagues, in what could be described as a physical job.

I do get very fatigued and do try to steel a few minutes here and there just to try and re-charge the legs, some days after work though I cant even walk back to my car without needing to stop every few mtrs.

My legs, especially the left one feels very robotic sometimes when I’ve pushed my self too far.

I would class myself as a stubborn git who will push myself to my limits, whether this is a good thing I really dont know, but again it’s my way of trying to stay ā€œnormalā€.

One thing is for sure, I’ve come to realise that I wont beat MS but I also wont just sit down and take it.

At the moment I’m on the sick, first time in 4 years, mainly because I’ve picked up a bloody cold that for some reason is just lingering on and on and feels like the worse cold I’ve ever had, also my MS symptoms seem to be more obvious at the moment, which I’m guessing could be down to this cold.

Personally as far as your MS goes only you will know if it’s getting worse, I started with Relapse & Remitting, but have noted that my symptoms arewith me daily, some days worse than others, but there all the time.

Last week my neuro said theres a ā€œhintā€ that it might of progressed, yet he could only come to this opinion by speaking to me and asking how my symptoms have been, and how long do they stay with me, he basically said that it’s the person with the MS that will ultimately know when things are moving along.

I used to be a bit of a physical person, always working on the house, DIY, fixing cars, doing stuff for family members, in fact everyone would always come to me for help.

But now it can be struggle, I do sometime even find myself getting a envious of people rushing around doingt things, things that I would do a few years ago without batting an eyelid.

I think for me I’m still yet to accept that I have to change my life style and keep a check on my physical tasks, I guess it could be a case of denial, and thats why I still push myself ??

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Bob, everyone is different when it comes to MS. Some people lose certain things, some lose other things, a lucky few don’t lose much at all.

You don’t say what kind of MS you have. That may affect what you ā€˜lose’. You may also find that you gain things: an appreciation of your surroundings, knowing who your real friends are. You should learn to respect your body, learn new limitations. Listen to it. If your body says it’s had enough, stop. If you don’t feel up to doing something, don’t push it. You may need to ask your employer to make some adjustments to allow you to continue working.

If you’re really concerned about losing the ability to do things, make a bucket list of things you’d like to do while you still can. Then do as many as you can, or can afford. For example, hubby and I went to Syria about ten years ago when I was still able to walk round the sites. I couldn’t do it now, even if there wasn’t a civil war going on.

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Thanks Carole. You are an MS forum stawalt and its really appreciated. I really admire your attitude and how have you have tackled MS and found new pleasures in life

I use to love to lie in the long grass and stare up at the the sky, listen to the the sound of waves crashing against the rocks while dolphins watching off the west wales coast, and walking in the woods searching for edible fungi which I was never brave enough to eat. The trouble is that MS has so assaulted my senses that none of these seem like a pleasure now. I look up at the sky and see crazy after images, sparkles, and swirling. I walk in the woods and I struggle to hear the bird song over the assorted screeching tinnitis noises. And now I have more time than ever. But I loved my work. It was a subject I believed in and it gave me sense of purpose. And I find no pleasure in anything that I do in the rolling acres of spare time that I now have. I was trying for kids with my wife when she left (though not at that exact moment of course!) adn I feel that I will now never be a father. Its not that Im too old, though Im not young. Its more that I no longer think that I could meet anyone and have a relationship. And being a father was the thing I most wanted to do in life.

But I know that I have very severe depression and that this built up over teh 12 months prior to the diagnosis, as the tinnitus and other symptoms got worse and worse. And I have some medication from the doctor that I will try. I feel completely broken atm. But I think there is still a seed of strength which might in time germinate and grow and give me chance to be as positive and brave as other people on this forum. Atm I just want my nightmare to end.

Thanks again Carole. You are a star. Im sorry that you got MS but grateful that you are here to be such an unjudgemental help to others.

all the best

Ruprt

Hi John

Thanks for your kind words. I guess the trouble is that Im predicting what will happen and it scares me. The MS has progressed so fast in two months that I fear what the next few years will hold in store. I used to do research around disability and employment, and interviewed hundreds of folk with disabilities. I never thought for a moment that I could end up in a similar boat, even though I knew that illness and disability can hit anyone at any time. I just didnt think it would be me. I sometimes wondered how some of the interviewees, with severe life limiting impairments, managed to be so cheerful and to achieve so much. I also reflected on how i would cope in similar circumstances. And now Im finding out. Its not that Im not accpeting of change. Its the scale of the change. tbh if the 8 loud noises in my head f**** off then I think I could get on with life. As it is they rage so loudly that they seem to be driving me out of my mind. And they are too noisy to cover up with anything. I will keep posting here as it is giving me hope and a sense of not being alone and helps to militate the sense of ā€œwhy me?ā€. And the people seem so kind. Thanks again John. maybe in the not too distant future I’ll be posting positive stories about how I got through teh dark times. I hope so. In te meantime, thanks to evryone here for putting up with the gloom that atm drips from pretty much every sentence.

bestw ishes

Rupert

Hi Rupert,

Stick with us. We’re the best in the business.

John

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Dwell on what you still have; don’t lament that which has been lost.

MS is about adapting your expectations and behaviours to changing abilities, not fearing how bad they might become.

Keep moving. Keep finding ways. Extract every little piece of joy you can from this existence. Continue going forwards.

Deal with the now and what is known. Defy the fear of the unknown and work to determining your own destiny.

Be fearless when attempting to turn any relapse into remission.

Chin up… stay chipper… keep on keeping on.

MS is the perfect excuse to indulge and enjoy the very best in life. Those who live well with MS will live well with MS.

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Hiya mucker,

How about getting no worse; it could happen in fact it’s more likely than not.

You have been given some good advice; just add the only legal requirement is to tell the DVLA. Not legal but sensible tell your car insurance company; they could refuse a claim on the grounds you did not tell them. Don’t worry unless you’re really bad they will not put your premiums up or refuse to insure you. The DVLA will restrict your licence for one every 3 years.

If you have ā€˜critical illness’ insurance claim. If you need help at work; taxis to and from; furniture; infrastructure and the ā€˜reasonable requirements’ you employer must give. Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK

Until then it’s the Thunderbirds Syndrome; ā€˜anything can happen’ probably nothing.

George

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Hi Bob,

I too can relate.

When I was diagnosed my fear was so overwhelming I could hardly think straight. I remember walking to the furthest photocopier in the building because I feared I might lose my legs at anytime. I took 1000’s of pics that year, worried that soon all that would be left of my life would be memories . The list goes on… Its fair to say I was running scared for a long, long time. I felt like I was fighting for my life.

4 years on my fears have not become reality. After my initial relapse which floored me everything calmed down. I still work full time, drive, ride my horse and do all the things I used to do. No one would guess I have MS. This may change and like all of us I don’t know what the future will hold but for now at least its not shaping up to be too bad at all.

Be kind to yourself and take your time.

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Hi Alison

Hope you’re doing OK.

And I hope you are right and my normal self will reassert itself eventually at least to some extent. I also agree that the idea that a chronic illness can help u appreciate life better can be overstated. Some one said I should regard MS as a gift from god and I almost punched him! And Im someone who has not punched anyone since a school disco more decades ago than I would care to remember. The clue is that Blondie was on the record player and my friend was wearing an outfit made out of an old dustbin bag. I think my phd in equality law is now out of reach but I have started conducting dream experiments which might either indicate that Im bouncing back or going completely crazy. Im looking at how chronic illness begins if at all to establish itself in te individual’s dreams. Though I cant for te life of me work out what practical use this research will prove ot be if it eevr gets off the ground.

Anyways, thanks again. And I hope u are doing well and te shower is draining as it should and parcels are arriving in good time.

Bestw ishes

Rupert

Hi

Nice post. Thanks. Ive done the hopping on one foot too! Even tried doing it while going downstairs, which almost ended in disaster. Im sorry that your symptoms got worse and the neuro was right. I understand that envy about ppl doing things. I use to be a very busy person too, albeit not all of it as productive as Id hoped. Now I have done little for months and tat s maybe why my sense of purpose has drained away. I’m trying to do some work, just finishing a journal article. But teh tinnitus noises in my head, and the visual disturbances, not to mention the severe depression and anxiety, are making it feel almost impossible. Funny thing is that I need to read some neurology journals for what Im doing and I simply cant understand a word that they are on about. Im not sure if this is because of the intrusion of noises etc, MS brain fog, or simply that they are too bleeding complex for anyone to understand.

Maybe pushing yourself is right for you atm. Dont beat yourself up about it. Sounds like you are doing very well in a difficult situation. Also if you havie been helping otehrs for years, then you are well in credit.

Thanks gain.

Best wishes
Rupert

be a right wee Ray of sunshine,that will get on everyone’s nerves because they will wonder why you appear to be so happy keep smiling they will then wonder if you are smiling at them or something else.joking aside I was so depressed for along time as well .had the same trouble as you.I’m a housewife(a word I so hate using)so what I differently was being unable to do even the routine chores now I just go with the flow so what if my Windows are mucky the clothes basket is nearly up to the nightshade what if the dust bunnies under my beds are ready to run I just tell myself that it’s a form of insulation.as for the clothes when the family stand in the street naked (that’s when I will laugh)then I will laugh at the hand that’s been dealt me as I say why not me!

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Thanks Rosie

Nice post, made me chuckle; which atm is no mean feat. And Im glad that you are feeling less depressed now, or maybe not at all depressed. Your house sounds a tiny bit untidy but very cheerful. If I can get used to the 8 noises screeching in my head then I think I can get use to the MS. atm I just dont know. I volunteer on a depression website and lots of the ppl come on with problems around splitting up with a bf or gf or not having got a promotion they expected. And Im so tempted to say, ā€œffs, you think that you have problems mate!ā€. Luckiliy, I bite my tongue or stay my finger.

best wishes

Rupert

  • Hi Bob. Hope this finds u on a happier place pardon the mis spells my kindle is being loopy .as for people not being aware .think ad bout me last night.hubby took me to dinner at our favourite hotel. Sat through first course,had a nice glass of rose took a sip put glass down then preceded to have my arm do somersault(big red face) the lady 2tables down actually ā€œwavedā€ to me as if she knew me.I hip hopped to ladies , mind u no body actually looked up as I passed
  • .I think they actually were saying "there’s that woman who threw the glass
  • Lol
  • .