Hi all,
Pretty rubbish day yesterday. Had my Gabapentin dose doubled and my neuro physio outlining that in all probability I’ll never walk again properly and all they can do is strengthen my legs so the relapses are not as bad.
Really frustrated that I’ve gone from someone who used to run to work a year ago to going round on a walking stick and falling over all in less than a year.
Any one else ever had a similar type of experience?
Tim
Tim
I suppose there are many with similar experiences-we all have a story to tell.
Sometimes we get caught up in grieving what we can no longer to when we should be grateful for what we can. Grieving is normal with this MS malarkey, its part of the process, just try not to get stuck there.
When I am having a bad day I think of others who are in fear for their life, for their home and loved ones (My Mum has lived in Greece for many years and I am referring to her when I say this)
I see a 13 year old girl has died after being assaulted (I havent read the full story)
My friend has phoned to cancel our plans for this evening because her daughter is seriously ill and they cant get to the route of the problem…
I am NOT distracting from the fact that u have had a bad day-write here, kick the cat (DONT really do that, just an expression!), go under the staircase and scream, whatever you do to release the frustration. Feel it but then let it go-if held on to then u become bitter and miserable…
I am aware you may interpret this differently from what I am saying-thats us humans!
For me I cherish the new friends that I have made/got because I have MS-I would never have met them otherwise. You cant change the situation/whats happening BUT you can change how you see it
Take care,have a good day. (there will be something that makes u smile/feel good-u need to be aware tho)
Ellie x
Yes, I used to run ‘long-distance’ - I didn’t really like it but I ‘could do it!’ - can’t now, and (at times) I can feel really ‘pissed off’. I played rugby, did swimming, Tai-kwondo (A Korean Martial art), Swimming, push-bike cycling, I used to run along the beach in Aberdeen, Dundee, where I live now (Dalgety Bay - the banks of the river Forth). In fact, I was an all-out fit guy and Now I find it difficult to climb the BLOODY STAIRS!! -
The ‘funny’ thing is (well not really!) that my initials are - MS !
Thanks - You’ve let me get that off my chest (today) but the annoying thing is that none of my relatives (over 3 generations) HAVE EVER HAD MS!
Marcus.
(Try to relax - it ‘sometimes helps’)
Tim, - I just had another thought - think of all the ‘positive’ things that we ‘cripples’ get! There’s alot of ‘FAMOUS PEOPLE’ who were ‘cripples’ - I might be wrong? but I think Einstein was in some way ‘crippled’ - tell your ‘friends that!’. I’ve had LOTS OF ‘RUBBISH DAYS’ but it does GET BETTER (or I’m ‘fooling’ myself) - TAKE CARE! (from one cripple to another!!!)
Marcus.
I have to say Marcus I find your use of the word ‘cripples’ in rather bad taste. I have never regarded myself or anyone else with MS or any other disabilty in such a way. I find it to be a rather negative and derogatory comment. Maybe that’s just because I’m very PC and/or from a different generation. I think that if you see yourself in such a light then maybe you should speak to your neurologist about getting some counselling. You come across as being both angry and depressed. As having that kind of attitude can bring not only yourself down but also those around you. I’ve been there done that. And 5 years later just started to get councelling. It’s not a lecture just some friendly advice. Also the amount of words surrounded by apostrophes tend to give your comments, to me anyway, a greater sense of negativity. I know you just trying to convey how you feel a lot of folk here would have been in the same boat as you at some point so they’ll understand.
We all get good days and bad days, MS or no MS, but it’s how you approach those days mentally. If it’s a bad day and I’m tired I have trouble getting up. It’s all about willpower, having to make yourself at least attempt to eat because you know you need the strength. On a good day I feel unstoppable only when my body reminds me “You can’t do that” do I slow down and take it easier. I assure you both it does get easier. Once you learn to cope whether it be through councelling, or the support of friends & family or even this forum. It takes time to get used to the changes MS makes to both our lifestyles and moods, just don’t expect overnight success, it’s a marathon not a sprint.
I wish you both well.
Good advice given about focusing on the positives, but what I hate is not really knowing what the future holds, walking was like the elephant in the room when taking to my neuro and like you I can’t believe how fast I have deterioated from normal to not being able to walk in my case in a little over 18months, and not knowing what next. Most people who are ill seem to get better but with MS you just get worse, and that’s tough. The only positive is that progress is being made on the treatment side with a number of drugs entering phase 3 of clinical trials, lets pray we are all up and running soon! Peter
Hi, I hope you dont mind me coming in here. i dont think Marcus meant to upset you or anyone. His wording may not be what wed all use, but i feel we can call oursleves whatever we like, its when others call us derogatory names, that I get cross. I have been called a crippke twice. The first time it came from someone who had family member who used a wheelie full time. He didnt realise his choice of words was offensive. i didnt put him right either…maybe I should have.didn`t want to make a fuss.
The second time, I did react. I was a party, in my wheelie and someone said, Lets move the crippke. I want to sit there. I loudly replied, I am staying where i am. YOU move!` he went quiet.
Yes, different folk use different words.It can and does cause offence sometimes.
may I say how well I think you have done to combat your problems in dealing with the mental issues which hit most of us with this condition.
It does a lot of coming to terms with, when we are struck down. Speaking for myself. I have a slogan;
I may be broken, but Im still here.`
We are all still very valuable people however we have been forced to change. In fact, were worth it!
best wishes, Polly xxxxxxxxxx
Well said Poll.
Sometimes black humour is a fantastic way of keeping the demon’s at bay. I would be upset if someone was verbally cruel to me but my good friends and I joke about me being a “spazz” and “cripple” and it helps relieve the tension and lighten things a bit.
Marcus wasn’t being offensive at all and certainly nothing in his post indicated a need for counselling! Nothing wrong with having our opinions but it is a bit rough to then try and make others feel bad for not having the same point of view.
Tim, sorry to have got side tracked there. I have had a rapid decline over the last 3 years where I have gone from a fit and active horse rider and keen bush walker to someone who is wheelchair bound and spends 90% of my time in bed resting. Not wanting to scare you and everybody’s journey with MS is unique but yes, I do relate to your sense of frustration. It drove me mental at first and took quite a long time to get to a place where I could accept the new limitations in my life. Anti-depressants help too 
There are times when I still get frustrated or feel guilty for not doing more with my life but somehow with the passing of time I have developed more acceptance. I don’t have any magic answers or uplifting messages for you except “Give it time”. Our ability to adapt is amazing…
All the best to you,
Belinda
One of the hardest things with MS is adapting to the constant changes and coming to terms with them.
My hobbies were walking and gardening, sods law that it’s my legs that are the worst affected.
It’s a bugger but hang on in there, life goes on…
Sorry you are having such a rough time, Tim. These kind of painful losses are just all kinds of filtered word, and don’t feel like anything else, and sometimes it can be very hard to bear. But somehow we have to grind our way through the adjustment process after every loss, before starting the hard work of making a good lives for ourselves in worsened circumstances. And then we have to keep doing it. Hard work indeed, but worth the effort (not that we have any real darned alternative, mind you.)
I hope you feel a bit brighter soon.
Alison
x
Sorry for any ‘offense’ caused but I’ve had this ‘sodding’ condition for ~13 years. My background (when I was well) was public school, Director of 4 garages (in the motor trade), received a trophy in the army cadets for the best cadet in the company and on a ‘personal’ level, I have been to bed with quite a few women! My wife is Irish and Catholic - her relation was killed in ‘the troubles’ - she is a long standing Optometrist and she went to university in London whereas I went to university in Aberdeen. I have attended marches for peace there’s alot of other things that I could tell you about like being ‘involved’ in the Peace Process against nuclear weapons - I have worked with ‘so called’ cripples in the past and they were not upset but I am not a ‘football hooligan’ - I just have MS and I hate it (I did psychology at university), I have suffered from ‘depression’ in the past and had attended ‘group therapy’. I am just finishing a course of anti-depressives just now. My doctor has 2 close relatves with MS (and he said that it was quite possible that he would adopt it himself).
I hate MS.
Bygones… I can be a sensitive little bi*** at times. I’m hormonal 4 weeks of the month sometimes. I apologise if I upset or offended you.
Marcus I hope that coming here and having chat can help you. I’m in this mindset where I don’t know if being dx’d older or younger is better. I was 22. That ruined my life and I still get mad about because I see everyone my age out having fun doing whatever they please. All the while I’m stuck at home feeling sorry for myself. I can’t even get to shops on my own. In one way I cope in another I don’t. One of my GPs has MS and it’s hard because I’ve seen him going downhill maybe the past 15 years or so. And it highlights my fears about MS. Although I do kinda live one of my fears as it is.
I do understand where your coming from. You pretty much had everything (I’m assuming you were happy) and then this horrid illness (call it what you like) takes everything away. We all deal with things differently. I really do hope you find something or even someone who can help.
Thanks ‘lowwie’,
You sound ‘Cool’ as my friend from Trinidad in the West Indies would say - he’s a quantity surveyor. I don’t know (as a male) quite what ‘hormonal’ is but I do know that I should ‘shut-up’ and keep my opinions to myself!
Your message was great and I’d like to be your friend if you want. I hate MS but I can’t get upset by it as you will perhaps know because it has the ‘habit’ of coming back at you.
I don’t want to ‘rabbit’ on about MS. I have it and although (pre. MS) I used yoga - I have found that ‘relaxation’ can sometimes help.
It’s good to chat with you, thanks. I’m 55 now (my late father lasted to 86) - that would be a long time with MS (but I don’t know what will happen?). I was worried terribly when I first was diagnosed - it’s not on my mind so much now and there is an advatage (I think) that my ‘short-term’ memory is very ‘unreliable’ - but it’s not sore and I don’t really care.
Bye and best wishes,
Marcus. x.
Hi
I am a crip and I drive a power chair - get in my way and I will run over your toes.
There is nothing wrong with attitude and if I want to refer to myself as a crip that is upto me, and, if there are oh so sensitives out there - tough.
My life my rules.
Cheers
Moira
Hi Moira,
Said like a true MS’r !
Marcus. x.
You ROCK Moira and yeah run 'em over if they pee you off
Love your attitude
B x
me also had bad day today, have bad day everyday come to think of it, dont let it get u down, i know easier said than done, but concentrate th things u can do and not do. im very fed up today, but feel better by comin on this site, and lettin it all out.
ohhhh i forgot about the doctors receptionists. am i the only one in the world that has so many problems with them?
wat is it with them, whenever i call they talk so fast and dont understand me at all, i have to tell them how to do their job. My previous docs were great before we moved. This one arrrrrrrghhhhhhhhhh, its the receptionists that mess everything up, and dont admit it.
had to tell her off today as she told me not to raise my voice to her, but i have to coz she is so fast and cuts me off before i even finish.
already got a complaint form, think its time i filled it out. had too many bad issues with them that are upsetting.
Have people completely missed the part in my post where I used the words “Maybe that’s just because I’m very PC and/or from a different generation”. Read my post properly before you have you go. And also note that I apologised to marcus as well so I don’t understand why some folk feel the need to dredge things up again just to have their tuppence worth. SERIOUSLY!!!