Forum

I HATE MS - IT'S RUINED MY LIFE...

I’m having a ‘gripe’ - ‘sod all use!’ but to try and relieve the ‘BOREDOM’ - I LOOKED UP -

The psychology of multiple sclerosis (ON GOOGLE)

The Intelligent Person’s Guide to Beating Multiple Sclerosis -

http://intelligentguidetoms.wordpress.com/category/psychology-and-multiple-sclerosis/

AT LEAST WE (HOPEFULLY) STILL HAVE ‘SUMMER’ TO COME?

Marcus

Hi Marcus,

Sorry, I’m not being negative (well, perhaps I am), but I’m put off immediately by the title.

No intelligent person believes they can “beat” multiple sclerosis, so I’m sure it’s just going to annoy the hell out of me.

It’s true that you can make the best of it…or not. I’m not saying there’s nothing anyone can do to help themselves. But this notion you can somehow “beat it” gives me the pip. Maybe I just have a different understanding of “beating it”. To me, it would mean nothing short of a cure. No more problems…EVER.

Only then would I feel I’d “beaten it”.

I don’t consider making the best of it, and trying not to have a completely crappy life is ever “beating it” - but that doesn’t mean it’s not worth doing.

Tina

That was a very interesting link, Marcus, but it does give a very biased view of the reality of MS.

It has to be biased: any URL with the word “Wordpress” in it has to be a blog, and since blogs are by definition supposed to be written by one person, then it must be biased. The references in it were interesting of themselves, and so were some of the refs in those references. What I did find was a number of “sort-of” theories which are in themselves an indication of bias (to some degree) in the researchers.

If you have MS you are almost certain to be depressed.
If you have MS you are almost certain to have cognitive impairment.

Those were the two big ones. Some of the research was flawed - not in the way that it was done, but in the things that were not even considered.

Take depression:
Twelve years ago I had a heart bypass. This means an annual checkup. In the late “noughties”, this also meant that I was asked to fill in a questionaire on depression. As a research tool it was rubbish (everything wanted an answer on a 4-point scale) and I could be back in the surgery a month later and be given the same questionaire again. It was a “Government initiative” (that’s the last shower, not the present shower).

Take cognitive impairment:
Any study of cognitive impairment should also take into account the cognitive function before any disease onset, and also consider the age of the individual participant in the study. There are enough people on this forum with Psychology degrees to know what I mean when I mention “uncontrolled variables” - and you may be one of them, for all I know.

The blog tended toward the views of Jelinek, and toward the Swank diet. Now I have noting against the Swank diet, or any other diet for that matter. But how much benefit of any diet is the self-discipline required to follow that diet? I am not aware of any study that answers that question. But, it is the same self-discipline required to inject a DMD, for example, or to take a vitamin supplement every morning, or not to have that third spoonful of sugar in the morning coffee.

OK, so you started with a “gripe” and I have followed with a bit of a “rant” - but at least you propmted me to exercise some of my cognitive functioning, and I thank you.

Geoff

Dear Geoff,

Thanks very much for your ‘extensive’ email. (You’ll ‘sleep’ well after that). I agree with all that you say but ultimately ‘I don’t really care’ and I hate MS - all these hours spent ‘studying’ at University in Aberdeen - I can’t even remember what I had for tea last night!

Thankfully, my wife (who is an Optometrist) will keep me right but I still HATE MS! She studied in London University and has travelled all round the world - I have difficulties getting up the stairs.

Hope your ‘gripe’ was worth it and as a once ‘fairly athletic individual’, I ‘sort’ of miss the extensive ‘jogs’ which I used to take (one used to be along the vast beach in St. Andrews when I lived there).

I HATE MS.

Marcus.

(my bl**dy initials happen to be MS, I was a director of 4 garages before MS and my wife’s brother (a teacher) has MS)

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**Hmmmm their FB page says the following ‘**Once again scientists find what we’ve known all along–that the brain in someone with MS has the ability to repair, rewire and regenerate itself just as it does in others. This ability of the brain to respond to the demands placed upon it is known as “plasticity” (the whole neurological system actually has plasticity). Brain and neurological plasticity are chief reasons for staying active. The more you try to do, the more you can do. This is why those with MS easily work as doctors, lawyers, judges, performers and you name it!’

I’m no Dr but I was told yes the brain cells around lesions do repair and regrowth happens but the cells grow back deformed
and wont do what they are ment to.

So a bad repair is kinda useless so why they making out a bad repair is a good thing?

Found this link based on what I was told http://www.ninds.nih.gov/news_and_events/news_articles/news_article_ms_repair.htm

I shut up now

Hi,

To be succinct I HATE MS too.

I am a positive person but there is no beating round the bush it has ruined parts of my life.

Amy

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(Quote: Thankfully, my wife (who is an Optometrist) will keep me right but I still HATE MS! She studied in London University and has travelled all round the world - I have difficulties getting up the stairs)

Perhaps you can learn more going up the stairs than you can by going round the world?

Just a thought…

Grasshopper x

Hi Marcus I try to stay on the positive side myself but it is difficult sometimes. Remember, ms or not, everyone has a bad day sometime. Yes I know the beach at St. Andrews, I have never jogged along it myself, although I have walked along bits of it. I was in St. Andrews when I believe I had my first ms attack, well my first obvious one anyway. It was 1989, Lisa Stansfields was at no. 1, with All around the world. Even today, hearing that song, I cringe at the though of that time I spent at St. Andrews. Now chin up, remember your very supportive wife and your wonderful daughter. Cheryl.:slight_smile:

Hi

I just want to quickly point out that the blogger has completely misunderstood the stages of grief. They seem to be of the opinion that going through the stages is a kind of treatment, and something that you can make happen. This isn’t what the stages are about at all. They are simply an observation of emotional experiences that someone might find they are experiencing. You can’t ‘make’ them happen; all you can do is notice them and know that they’re normal.

I also disagree that recognising the stages means you’re giving up & resigning yourself to a future of hopelessness & despair. The final stage, acceptance, is about rebuilding and moving on with your life - positive things, not wallowing in a pit. The idea that you can’t achieve anything if you’ve gone through the stages is laughable. I know I’ve experienced the different stages at different times since getting ill, but I actually think I’m a more determined person now than I was before I was ill.

Where I do agree with the author is on the effect that our thoughts can have on us. I think things like unhealthily dwelling on problems can contribute to making us worse and, similarly, that a positive approach to life can help our bodies.

So yes, I don’t think it’s healthy to wallow. But I don’t think it’s healthy to always suppress & deny what you’re feeling either. Personally, I reckon allowing myself to grieve has helped myself to grow stronger and more determined.

Dan

Hiya

I went to the link but havent read it cos about 2 sentences it it started to blur!

Dan is a wise man

This is how I see it…the situation is as it is…whether that be illness, money troubles, difficulties with teenagers or partners and any other situation u care to think of BUT I can (almost!) guarantee that you (reader of this post) and I would handle it differently-but we are both right!

How we view/perceive the situation affects how we deal with it,personally my cup isnt half full but brimming! Impossible?! No! As some of you know I am on own with 4 kids to bring up-its a joy (hard work but we have so much fun!) They are aware of most of my issues but we get through each day…together.

I dont hate MS. Why would I hate something thats part of me?! Albeit an unwanted visitor. Whats that saying? Keep ur friends close but ur enemies closer still! I accept that I have MS and cope/deal with the symptoms as best as I can. I use my energy for laughing and loving, hating and jealousy are wasted emotions (for me)

Off course I have ‘down’ times but these are short lived because I and life are constantly changing. I laugh, cry, stamp, punch, whatever and then let it all go…and think of/appreciate all the great and precious things and folk that I do have in my life.

Ellie x

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Thanks to all for your responses. I will need to take a little longer to reply to each individualy. I’ve just had my tea and am pretty tired - I didn’t get to sleep until about 01.15 last night (this morning), I usually get to bed about 10.00 p.m. My balance is worse than usual and I ‘may’ be having a relapse? It has happened before so I’m not ‘that concerned’ but I’ll try and see if a good sleep helps.

Marcus.

Hi Marcus,

It saddened me to read your post, but know where you are coming from, in the same way you know it will be another day tomorrow and hopefully your outlook will be back to your usual cheerful self.

In the mean time ((((((((((((HUGS)))))))))))))) just for you.

Janet x

Thanks Janet,

I just got your message before going to bed. I had just watched ‘Corrie’ (sad or what?). I’m more ‘tired’ than sad but your message is kind. There are a lot of us going to bed (tonight) who have MS - I’m (by NO means the only one and NOT anywhere as affected by MS by some others but it means quite ‘alot’ to say ‘that you know where I am coming from’) - even my Doctor admits that it is difficult to know what MS is like for the individual (and he has 2 relatives who have MS - ‘he’ doesn’t, although he knows that there is a possibilty that he will - and until then - he had to guess what it’s like).

Anyway, can’t go on - bed calls - thanks again and sleep well.

Marcus, x.

Thank you for posting the link and giving it such a strong title that made me click on it.

It’s nice to be inspired. You should read every word in that blog entery. Twice. And think about how blessed you are to have all the things you have.

I was thinking this morning about writing about how MS saved my life by waking me up to the importance and benifits of maintaining mental and physical health, but maybe you’d think it’s a sign of cognitive impairment…

I was treating myself like s*** before I got MS. Now I treat myself as I should always have… And I feel wonderful.

Dear Marcus,

Hmm? I se some of the big guns have answered your call.

A few years ago i played in an orchestra.I also played in a militery band. From the age of nine i played instruments. Music and art were my life. If i thought i could beat MS i would sell my soul to get the old me back.

Nobody i believe can understand or walk in our shoes unless they have MS. They may think they do, but i dont think they do. Thats what i think. Have a rant if you want but no, i can,t see how this bully (MS)can be beaten. Please allow all my spelling mistakes. I have cognitive problems as well.

Hang un there,

Jane x

Dear Jane,

I got your message, thanks. I was unaware that MS can ‘affect’ such ‘talented’ individuals - but it can and it does - that’s put me in my place, thanks! I do have cognitive problems as well (I have an 8 year old daughter who ‘corrects’ me - no use having spent time at university and been Director of a £14 million pound company!)

Back to MS or rather forget about MS - I thought at school that I might be ‘creative’ possibly an architect? but no - I wasn’t brainy enough and I ‘sort of’ rebelled following rock 'n roll (just listening - not playing!). I went to a fee-paying school which is older than ‘Eton’ (if that’s any good? - ‘Nah’!) - I’m now typing this (with a ‘catheter’ fitted) and ‘staying at home’ looking after my 8 year old daughter (who’s not at school today claiming she has ‘cystitis?’ - but she’s well enough to watch tv and ask to go to her friends later today) - I’ve ‘rambled on’ long enough, sorry but on a lighter ‘note’ the sun is out (it’s still a wee bit ‘chilly’ though) but summer is still to (hopefully) come and my sandwiches are prepared - it could be far worse (to coin a phrase!) - thanks, Jane.

Marcus. x.

Dear Anonymous,

Thanks for your message - sorry, I took so long to respond but amongst other things, I’ve been sleeping and dealing with an 8 year old daughter who has apparent cystitis? - she’s OK now, watching tv and taking a day off school. I understand your message and I agree. Please look after yourself (although your message says that you are already doing that, take care)

Marcus.

Hi, ah bless you! Your reply is about finding something positive in a negative situation. Having MS made you aware of how you would benefit from taking better care of your body.

A refreshing way of looking at MS.

Good for you.

luv Pollx

To Ellie,

Thanks for your response - it’s full of wise words. I agree with what you say, I’ll try and adhere to them.

Marcus. x.

I too hate MS.but I don`t hate my life.

Of course I miss being able to do a lot of things. But hating MS isn`t going to change anything.

negative energy and negative thoughts only breed further feelings which distress us.

my slogan is this…

I may be broken, but Im still here`

luv Pollx