A bit down as M.S worsens.

Everyday living
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Hi Everybody,

I had to give up work in August of last year it took a lot of adjustment to deal with having a lot of time on my hands i go to my local M.S group on Mondays and go to a history group the third Monday of every month, i’'m looking to going on a Council run course as well my symtoms have got worse recently Fatigue getting worse i can tell because i don’t want to get up and do anything not because i can’t be bothered but the Fatigue becomes bad after a few minutes, my blood pessure has become quite high which i know is bad for me but i have become so worried about soon not being able to walk anymore which is going to be harder as i live on my own i’m at the stage now where every M.Ser must dread i think i’m weeks away from having to be in a wheelchair can’t stop worrying about how my life is going to be i know i’m not the first and won’t be the last to be in this situation it scares me where my life is going.

Gary

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Hi Gary. Life with MS is a scary business, isn’t it? Sorry you’re feeling so down. I’m single and only have one brother who has his own health worries. I had to pack in working yonks ago, which only gives you more time to sit and worry -what if etc. See you have SP same as me. If it’s any consolation my walking is no better and no worse than it was 10 years ago, so no marked deterioration, which is wonderful after years of awful relapses. Fatigue -tell me about it. Get up, make cup of tea, pull curtains back, then ready for bed again! Hope you’re feeling a bit more cheerful soon. Don’t assume things will get worse. Cheers, B.

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Hi Gary, I do understand how you are feeling right now. I have been there, you see. I`ve had my PPMS like (still waiting for a diagnosis) problems for 14 years.

I took ill health retirement from a job I loved, in 2000. My fatigue levels put paid to that. My disability progression went quite rapidly and I needed a wheelie part time, within a year of starting. Now I have been a full time wheelie for 8 years.

Gary, I know the thought of becoming fully dependent on a wheelie/other people is a scary, horrendous thought, but please let me assure you that it isn`t the end of the world.

You just tackle things from a different angle. Unlike you, I do not live alone, but with my hubby, who was my sole carer for many years.

Last year, I began using Direct Payments. This enabled me to employ extra carers, mainly to give my huby a break, but also to allow me to continue my hobbies and love of a bit of retail therapy!

If you`d like to ask me anything about DPs or whatever, please do, yeh?

luv Pollx

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Hi Gary,

It is a scary thought having to use a wheelchair, I remember it well, but it really is not the end of the

world, honestly.

It helps you to retain your energy levels, but most important, it gives you back

your freedom and independence.

I wish you all the best, take care

Pam

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Hi Pam,

Thanks for the message i understand what your saying and their are times when i’m out and the fatigue is so bad that i wish i was in a wheelchair i think its the psycological barrier as much as anything i have a 8yr old lad who i see at weekends that worries me how i’m going to handle the lack of mobility, i think the being on my own bit doesn’t help as well will have to pick myself up again and soldier on and be more possitive thanks again for your response.

Gary,

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Hi Gary, I know exactly where you are coming from. I still work but am completely knackered the majority of the time. Would love to stop but the CSA and Santander would pursue me to the grave if I did. I live on my own and had the same misgivings re the wheelchair when the idea of using it first reared its ugly head. Thing is I now regard it as a bonus coz if it gets too much using the two walking sticks then the chair restores some much needed energy. My biggest problem was getting it round the house but after I moved into an older property this wasn’t an issue as the rooms, doorways etc were a lot wider and I could get round a lot easier. My only problem now with it is people talking to the person who is pushing it, if there is one, as opposed to me. I laugh about it now but it really ground my gears at the start when people were asking someone else how I was when I was actually sitting there. Anyway the bottom line is that the chair has been really helpful and allowed me to retain enough energy to do more things. An added bonus is that it lets me get to bed when I am p****d.

Gary

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Hi Gary, the thought of having to use a w/c scared me to death, i have had ms 20 years now, and its only the last few years that i have really needed to use one for days out or going shopping, it took me ages to pluck up the courage to get one,but slowly i came round to the idea,i got one, and then took a real disliking to it,so i struggled on not using it when i should have,but i was very, very limited and could only be outdoors for 10 minutes at a time,

my pride keeps holding me back,and i keep having to remind myself, i am still the same person,i decided to get a mobility scooter,again my pride held me back,and also my daughter shes 19, and image is so important at that age !!

she said i would look silly and look like ‘madge’ off ‘Benidorm’ lol, thing is i do, i have blonde hair, and darent get a tan lol,but i told her and my other half, i would rather feel silly than feel really ill all the time,so i went ahead and bought one, and its the best thing i ever did,

when i can get out i use the scooter,rather than the w/c and i feel much better than i did using the w/c, i hated that i HAD to pushed,it made me feel so helpless,but i get over this now by telling myself i am a 54 year old woman, not a woman in her 30s or 40s, i would have had even more trouble adjusting if i were younger, and i really feel for the younger generation with MS or any other disability,at least my 2 kids are grown up now,we have some real laughs over the scooter, i call it my ‘mean machine’ and every time i use it something funny happens,so it helps having a sense of humour,so maybe you could get a scooter instead of a w/c .

Try not to worry you may not have to use a w/c or scooter all that much,and try not to think along the lines ‘ending up in a w/c’ very few of msers ‘end up in a w/c’ a lot are like me, and see a w/c as a tool when needed.

I am spms with relapse and still have severe relapses,i am in one now 16 weeks,and feel really ill, and i am thinking i wont come out of this one, but i always do,i just have to try and stay positive,although just now i am struggling to be positive.

Good luck with whatever you decide and keep smiling.

jaki xx

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Hi Jaki, just wanted to say what a smashing reply you sent to Gary. I wonder how he`s doing. it sure is a scary time when we are at the crossroads of needing something to help our mobility problems.

luv Pollx

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Hi Poll,

it is scary isnt it,we should all have your fighing spirit,you have such a good attitude , i love to read your posts,they always lift me if i am feeling down, like now.

love jaki xx

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Bless you, jaki.

luv Pollx

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Hi Gary,

I just wanted to add my 2 penn’th to the wheelchair brigade.

My OT said she hated the phrase “end up in wheelchair” as though life ended where wheels began. My life has taken on a new lease since I got my powerchair.
Fatigue and mobility problems had me chained to the house unless I had someone to push me. I hated being pushed – it’s so dependant, ugh. Now I feel that I can do anything I want – join things, go shopping – be independent. In a funny kind of way the w/chair has given me back my mobility.

Is it easy? Nope. There are a thousand things that are more difficult on wheels but I can get from A to B faster than most people walk and I still feel fresh as a daisy when I get there.

I agree with everyone who has suggested a scooter first. I promise that after the first few times of feeling like a berk it will be your best friend. Your son will prefer to have a dad who gets there on a scooter to one who never turns up. I remember when I was resisting sitting in a wheelchair my daughter told me that not using it fooled no-one, I still looked disabled. Better to be sat in a chair than flat on my face. (How true!)

Jane

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Hello Gary and everyone else on this blog,

I don’t have MS but I came across this site while researching other medical issues. I thought I’d pass on some information I found out recently. It may be old news to you all … if so I apologize. Also, I’ve not read all the forum rules so I hope I’m not breaking any rules when I pass on some names. But while I’ve been researching cures for arthritis for my hubby I came across a doctor called Terry Warhl who claims to have cured her own MS by eating 9 cups of vegetables a day! She was wheelchair bound but after a few months of changing her diet she was cycling to work every day! If you type her name into any search engine it should bring up various sites and there are a few videos around, online and free, where she gives a break down of her eating regime. As a doctor she used her research skills to find out which types of nutrients were important for rebuilding the sheath around the nerves. Instead of eating copious amounts of supplements she decided to get these nutrients from her food. Basically, she eats 3 cups of green leafy vegetables a day, 3 cups of sulphur containing vegetables such as onions, garlic, cauliflower and brussel sprouts and so forth, and 3 cups of multi-coloured fruit and veg including berries. I don’t know whether she limits her grain and/or meat intake but the 9 cups of veggies a day seem to have done the trick.

Just thought I’d pass on this information in case anyone wanted to research it further.

Best wishes to you all, Meadowsweet :slight_smile:

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oops, got the doctor’s surname wrong - it should be Wahls - no ‘r’ in it.