4 years ago
Horror Stories

So i have been feeling so positive lately… like i really have been not worried about having MS and have convinced myself that i will be ok… and then i was told that i was naive by this lady and told that a very real possibilty for my future is disbaility. What if i cant handle it?… i feel so vunerable… i have heard so many horror stories lately from people who are doing so poorly and have lost so much… and then i tell myself oh but i can do so much and am physically strong so i will be ok… and then i learn about someone who ran marathons 10 years into diagnosis and still ends up in a wheelchair and i loose all sense of security. even if it is a false sense of security it was making me feel good. i cant even tell you how many horror stories i have heard/read about… god this is AWFUL. And to top it off today pops into my email the story of a woman who just killed herself becuase of her MS… what if this happens to me… i cant do this. i need to not have this disease.

Sorry- bad moment.

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@mrshawk, there are some out there that like to revel in preaching horror stories. Goodness knows what agenda they have. Perhaps they just like someone else to feel as poor and wretched as they feel.
Any stories from the past need to stay there.
We’re now living in the present.
Medical expertise is moving forwards, albeit slowly, but it is progressing. Being diagnosed now has a better prognosis than having been diagnosed 10, 20, 30 years ago or more.
Yes, there are bad things in this world. And some bad people. Sometimes, it’s bad people preaching bad things.
If they’ve got nothing nice to say then they should save their breath! 👿

I can totally relate as someone fairly newly diagnosed–it’s a bit of a rollercoaster. You hear a story about someone doing well so you feel good; you hear a story about someone doing terribly and you assume the worst for yourself as well. There is so much uncertainty with this diagnosis, I think it’s normal to look at how other people have done with the disease–however, I am with Stumbler in that the internet presents a very skewed picture of how people in general are coping with MS, and so it’s important to take everything with a grain of salt. No one knows what the future holds–people with MS and those without–so there is no point in obsessing about worst case scenarios way in advance. I know, easier said than done…

Yeah, the bloody doom merchants should shut their mouths. They know nothing, they just revel in others suffering.

Keep positive @mrshawk. 🙂

Thanks All. It is so true the way i feel rides so much on what i hear and learn about right now… i have actually made a vision board where i have written down the name of everyone i know who is doing so well with their MS and i have plastered it all over my mirror that way everyday when i am getting ready i tell myself i have the same disease as these people and they are ok…. the problem is i know that som epeople do terribly and it is torture… BUT lets look at the facts… i am a young female with RRMS and sensory symptoms diagnosed in a time where there are a variety of treatments available… chances are pretty good to be ok… right?? or am i freaking grasping at straws lol

@mrshawk I’ve had RRMS since I was in my 20’s and I’m still here doing well at times and less so at others and I’m nearly 55, so that ain’t bad.

@mrshawk, you have to remain positive and optimistic. It’s the only way to be.
😀

@pottypete can you still walk around/get around etc?

@mrshawk
I feel just like you. To try & keep me sane I re read posts where people have given me positive reassuring answers to things, it calms me down a bit but never for long. One minute or hour I’m ok, the next I’m terrified. I’ve always been a natural born worrier but something like this puts it into overdrive. Do your family & husband know how you feel? X

@mrshawk Yes to some extent. There are times it seems as if I have nothing really wrong with me, but when hit by a relapse, I can be seriously debillitated. Then I need to use my scooter, though I can hobble around on crutches or on a stick.
I’m not going to say everything is rosey, it’s not. I console myself with the thought that there are many other diseases out there with a much worse outcome.
I seem to be nearing a remission at the moment, but I won’t count my chickens just yet. I remain positive though, as you should.
I’ve known many like us with RRMS and have seen a multitude of differing results with regard to outcomes, so no one person can ever tell what anothers will be. Just be positive, it helps.
Those that do not have MS, unless a specialist or a family member, know nothing of its effects, so you can totally disregard their scare stories. It’s usually hyperbole anyway.

@boodle06 i too am a natural born worrier. I am the person who was scared of the dark when i was little, scared of flying as i got older …the list goes on. My husband and family do know how i feel although i try to spare my mother as much as possible as she too is a worrier. Myhsuband is a great support and constantly reminds me of the stats i like ones like “avg is 28 years to cane” and “75% of people with MS never need a wheelchair” you know all those calming ones. But my biggest problem is i think to myself that person that scares me so much who is doing so horribly… were they like me once? clinging to these stats with hope in the bodies… exercising and eating right and one medication that was working… i struggle with that. But then i think about the 75% of people who also are just like me and it turned out to be managable…

There also the stats that I try to remind myself of. But then I think if 75percent aren’t in a wheelchair why do I hear & read of so many that are. Apart from completely loosing the use of my right hand & wrist that I do have back now, it’s also affected me in other ways like my speech & handwriting. So the crazy thing is we immediately think of wheelchair but there’s other invisible things too. I do often think how the hell am I gonna live with this. I know this sounds awful but if I had to use a stick @ this particular moment in time I’m finding it very difficult to think if I left work without needing to use one, had a relapse & came back to work with a stick, what the heck are people going to think at work. I wouldn’t want them to see ms. I can’t even imagine it. I want to give you reassurance but I’ve kind of butted in on your post & I’m sharing your worries too, sorry x

See me, sorry typo there. My phone automatically assumes I say ms when I want to say the word me!

@boodle06 thats ok dont worry! and you know try to remember people like to share misery and horror stories thats why you often hear all of the bad. You dont hear of the average or mild courses as much. And alot of people who are doing really well and the people who are fully functioning arent always online on sites and blogs and forums. Dont get me wrong, some are but more often then not they are just out living their life. The thing that helps me is to “live in the grey” do not think you will never be affected by it because that is the white and that may not be realistic… but dont think this will severely disbale you… that is the black and again is probably unrealistic. The relaity is you will end up somewhere in the grey and grey is managable 🙂

Ladies, it’s a fact of life that 99 out of a 100 will complain about something bad, whilst only 1 in a 100 say things are good.
So, divide the number of horror stories by a hundred to get a true reflection. 😉

I’d love to be able to meet up with all of you, I’m sure it would do us all some good x

@mrshawk I was scared of the dark when I was a kid too, then it was girls. Fear is an unfortunately normal part of life, its what keeps us alive.

My MS hasn’t been the easiest, but the world will keep on turning, even though there are times I want it to stop. As stumbler has mentioned previously, people will focus on the negatives, they don’t tend to brag about how amazing their day is going. I’ve been fortunate enough to be relapse free since starting Tysabri back in the summer of 2011. At the time, my relapse had put me in a bed unable to even sit up independently, these days I’m about using crutches outside, wobbling a touch inside with very real hopes of getting back to not needing my crutches with enough physiotherapy. To be honest, they’re as much a psychological help for me as anything.

All anyone can really do is stay positive and work hard, half of life is luck anyway.

Hi there. I’ve posted this before but I think it bears a repeat….when I was dxd ten years ago at the age of 53, I was the only person I knew with a serious illness. I totally identify with what you’re saying about the future. I have lived and re-lived the nightmare, visualised the wheelchair etc etc. Fast forward from 2003 and here I am, much the same … but there IS a difference in those around me. I am now ‘in good company’ as it were. In fact, what I have is considerably less than some of my contemporaries. Of four people I used to work with – one (a smoker) now has throat cancer, another has a heart murmur with complications, a third has just been dxd with unstable epilepsy and a fourth (could hardly believe this one..) has had a tumour in the leg and has had the leg taken off at the knee. I could go on, but you get the picture. You suddenly realise that you are not alone and that there are things out there even more horrible than MS!. I expect you’re living a very healthy life, probably more so than many folk your age. In that sense, you may well be on track for a healthier later life than many. All your exercise, good diet, stress avoidance will have a pay-off beyond control of the MS: it may mean you don’t get the cardiac or other serious illnesses. When I was dxd, DMDs were relatively new…. and that was only ten years ago! The pace of research is quickening: in the next ten years, during which you’ll still be very early stage MS, there’s bound to be new stuff coming along. So take heart, you’re doing all the right things to stay well. xxx

Live for the now. Deal with tomorrow when it comes. (Easier said than done though, eh?)

@mrshawk… everybody understands the fear that we all carry.. but we all know its a harmful on our minds carrying this thing. i do agree with the comments above.. so many horrible stories, and i found them interesting only because i did want to know the bleakest outlook, then i thought well thats the worst. i am defo not there yet, so i live for today.. i am grateful now that i can now plan things months ahead. that was defo not in my vocab in the early days.. give your body the utmost respect. relax and enjoy the ‘now’. hugs to you xx

Wow….

I really empathise with your post @mrshawk….

when i was first diagnosed… I thought I would be okay with it all… I’d worked with and for people with a disability most of my adult life… and had always thought and spoken positively about disability and conditions that can cause impairments.

I felt i was better equipped emotionally than most to deal with a diagnosis…. how wrong I was…. and i’ve walked that EXACT same thought process as you’ve gone through in your post a hundred times.

I went along to the local sticky bun and dribbly teapot MS support group….. and freaked out.

it was run by the twin set and pearl and blue rinse brigade and the only people with MS who were there were people whose MS had quite an effect on them… people using wheelchairs, walking aids, serious head tremors… I became really done in.

I then started suffering from depression and terrible anxiety…. I stopped going out, became withdrawn, closed up emotionally, felt negative all the time… bad times. Finally I had a shift in my thinking… and I reflected over the people with MS I’d met so far who where profoundly effected by their MS…. and I realised that really the MOST DISABLING thing about MS for ME so far… was my State of mind… also caused by MS but not necessarily a symptom of demylenation… (if that makes sense?)

So i decided to tackle that bit of MS first… I was very lucky that I had been referred to the neuro-psychologist (initially to check on my memory recall) and she had an enormous waiting list (which i’d been on for over 18 months) … So a locum psychologist was bought in to ease her caseload. He was not a neuro-psychologist but he did offer me a course of Cognitive Behavioural Therapy.

I’m not exaggerating when i say it changed my life…. it helped me to deal with my demons and develop some hopefully lasting strategies for coping with change and the unknown future we face.

The MS society have worked with neuro-psychologists to develop a workbook using CBT techniques called “Shrinking the Monster”… i still look at it from time to time and have now completed it at least three times… as my MS Monster looks and feels different depending on how i feel at that time. if that makes sense?

here’s a link to it… you or others may find it useful:

http://www.mssociety.org.uk/ms-resources/shrinking-monster

I had been fairly private about my MS prior to then, telling my employer and inner circle of friends and family…. but in the past in my work with a leading National Charity supporting people with a learning disability and their families I had asked families and individuals to speak up publicly about their scenario (in the interest of campaigning)… I was then approached my a past colleague who is a journalist specialising in health and social care who wanted to use my story as a case study for a story in a national newspaper.

GULP.

I felt I had to do it… having asked others to speak up in the past, I felt if i didn’t share my story i’d have been a hypocrite.

So a story was written in the Guardian about depression using me as a case study… and i went very public about my MS. (there’s a link to the article on my profile if anyone’s interested)

It turns out it was a very good thing to have done…. as I started meeting So many more people with MS… people who weren’t too badly effected… some people I already knew but I didn’t know they even had MS. A old boy who owns a local old fashioned DIY store that I’ve been going into since i was a kid has become a huge inspiration… but he’s made a success of himself and adjusted. He used to be a builder prior to the dx… so started his own DIY store instead… he has been diagnosed for over 40 years and been mostly healthy and well. He’s offered me a cuppa and a listening ear from time to time… and I have a picture of his shop in my house to help keep me positive!

If i hadn’t gone a little more public about my Ms i would never have known he had MS and not met some of the other people i have met… so I’m glad i did.

Please do have a look at the CBT workbook thingy…. i think you’ll get a lot out of it. it really did equip me with some good tools to stop me from worrying too much… I am a terrible worrier anyway and have a tendency to “catastrophise”… using CBT techniques helped me to be a lot more balanced.

Your post really struck a nerve… I really hope you do find some coping strategies that work for you.

@mrshawk, @boodle………..hate to sound like a Grumpy Old Git, but MS is NOT the end of the line.
Read some profiles on here – you’ll see lots of us are in 40’s 50’s.
I had a great life before MS, I will admit.
AFTER: well post DX I have done a degree as a mature student, done volunteer work with BTCV and got an NVQ in environmental conservation.
Only NOW, 20 years AFTER diagnosis, am I starting to use wheelchair. Do go and read the MS website, there are MANY inspiring stories, of people coping and acheiving loads of stuff! Just being on shift inspires me, I know.

Life is for living no matter how MS hits us! You learn to adapt. I was given a great philosophy by my father! Why worry about something that might never happen…….be positive as so many have said here. Believe me it does stand you in good stead with the future. Just a memory I have, when my children were small, they used to stress me at times when they were naughty and at times when I told them off my speech would let me down and the nonsense that came out of my mouth!! They would look at me with total perplexed and we would collapse in laughter!!! Take heart and laugh!! oh and I have the RRMS type dx in my 20’s and now 55!

And yes we have all had bad moments and it is allowed!1

soz meant to say, it is allowed to feel this way and i do have my moments!!

Thank you everyone… the outpour of support and understanding on this website is pretty amazing. and @JustJones thank you for being so open about your MS and i am glad it has helped you! I will look at the workbook for sure. And i know EXACTLY what you mean by saying the most disbaling thing about MS right now for me… is ME! i am pretty symptom free yet i am riding the ups and downs of this emotional rollercoaster… i would like to get off now 🙂 But again thank you everyone for the comments, encouargement and love… i can really feel it 🙂 Have an awesome day everyone xo

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