mima 30/04/12
Last reply 5 years ago
Bedbound & looking for others severly effected

Hi I’m new here, but have had MS for a while. I’m bedbound, with 24 hour care, but still very cheery. I came to the site through the BBC article and am 41, so probably to the older end of the age range here. Are there other people out there that are more severely effected?

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edthepublisher
5 years ago

Hi Mima. I, too, found this wonderful website via the BBC article. I’m not severely affected, like you are – but I, too, am in my forties. I look forward to being a part of this community, and to hearing about your cheery progress!


Lillylilly
5 years ago

Wow, Mima. Sounds like you are having a really tough time of it.
Well done on staying so cheerful!!


jabo
5 years ago

Hi Mima, I found this site through the BBC article. I have been a lurker on Joolys joint for quite a while. Not as funky as this site but very supportive. I am 42. Was diagnosed back in 1998. I am not bedbound but use both a manual and electric chair in turns. Work part time. I have lots of support from my husband and couldn’t survive without him in lots of ways. Stay cheery but know that when you don’t there are lots of people out there who will understand so don’t feel alone. Nice to meet you, 🙂


julesak
5 years ago

As far as age goes there appears to be a fair few of us forty something’s. Don’t know if you would find more people who have severe symptoms on the ms society forum as the are seperated forum areas for SPMS as well as PPMS. I suspect at this site is aimed at the younger (age or mindset) it probably attracts those less severely affected. However support crosses all types and severity and you would probably find many people struggle with some if not all of the same syptoms as you anyway. Find it quite inspirational that you remain so positive……and quite humbling as I had a hissy fit today as forced to use my stick for the first time in two years!
Julia


indigojane
5 years ago

Guess What,
I,m 56, have MS and i think i may be the oldest girl in town!
Nobody believes my age but i do like to pamper myself. I am lucky that i only need a crutch to get around. I,m always here for anyone that wants to chat anytime. I have been a nurse,musician and an art teacher.Sadly my MS is starting to take charge of my life.Anyway Mima i would love to chat to you any time. You sound a gutsy lady, so if you need a friend i,m here like the rest of us MSrs.
Mucho love,
Janex


christeeny
5 years ago

I’m 27 and also found this site through the BBC article. I have days when I’m bedbound (like today) and days when I’m fine, with the exception that I’ve gone deaf.
Hrrumph.
The biggest pain is that right now I have an N*Sync song stuck in my head and no way of getting it out. (Hahaaa! aren’t I hilarious?)
I hope you’re feeling a little better, at least a *little* better, soon.
I have a blog, http://cdschristine.blogspot.ca if you’re bored and want to read the extent of my situation.
xxx


mima
5 years ago

Thank you all for answering, it’s really nice to know that there are other people out there! @edthepublisher I always get my affected & effected’s muddled up and even changed it a couple of times before putting it up!!! @jabo wheelchairs can be a real blessing when you reach a stage where they are needed, allowing you to do things that otherwise you just couldn’t manage & how nice to have your husband to go through this with you. @julesak my neurologist just says MS and no type as I don’t fit any nice neat boxes (also sadly means no meds), so the MS forum doesn’t really work for me. If you don’t find the cheery in the situation then you end up with a miserable life so you do just get on with it and find the good things. It isn’t really inspirational, just would hate to waste all that time!!! @indigojane can’t believe that you are 56, you don’t sound it, and it definitely means that I’m ok to be here as young at heart I am!! Which of your jobs did you like the best – all great things to be and I bet the nursing experience has stood you in good stead as you have gone through the MS experience! @christeeny going deaf must be hard, and LOL at getting a song stuck in you head, drives me nuts when that happens!! Most of my time is stuck in bed watching TV & that would be a nightmare without sound. How long ago did it happen & have you learn’t lip reading or sign language (hope you don’t mind the questions?)

I have a dual diagnosis – MS & ME – although it depends on who you listen to as some neurologists don’t believe you can have ME as well as MS, which would make it all MS!! My bladder & bowel are affected, my memory, but my most fundamental problems are my pain & fatigue. They are both controlled but cause issues if that makes any sense at all.

I try to do something most afternoons (the mornings are a bit of a write off), and I’m lucky that I have family nearby, so although I live independently they visit often, as do friends that I’ve met.

Care is complicated, I have a live-in carer who is here all the time except the afternoons when they have some time off. The live in carers come for several weeks at a time, so if it’s a new one (who I wouldn’t have met ahead of time) and we aren’t getting on so well or they just don’t fit then it’s a long few weeks. In the afternoons I have a local carer who comes to relieve them while they do the shopping and have some time off.

Thanks for listening guys
Mima


kateee
5 years ago

Hi I am new to this site too and am in my late 40s. I have secondary progressive multiple sclerosis but am lucky in that I can sort of get around. Can’t think what but if you ever want a chat even if it’s about the weather just contact me.


wil1
5 years ago

Hi i also found this site from the bbc article and am in my 40,s have recently had to start to use a wheelchair more often but am still poddling around with two sticks very small distances. I think being positive is really important, you certainly sound very positive. It is great to hear people facing the same obstacles as me it is always good to share and not feel alone.


indigojane
5 years ago

Hi Katee,
Nice to chat to you.
Will get back soon. I have 28 messages to answer!! I promise to get back soon.
Janex


nickym
5 years ago

Hello,
It’s interesting that you have a dual diagnosis. I was missed diagnosed with ME 20 years ago (When I was 13). I wasn’t diagnosed with MS until 2009 and I am now Secondary Progressive.
I have two PA’s and a wonderful husband who takes care of my personal needs. I get a Personal Budget from the council and I use it to manage my own care plan.
Do you get a budget? It is fantastic and has totally changed my life.
I’m new to this website, but hoefully I will get to grips with it soon. Take care


indigojane
5 years ago

Hi Nicky,
Would have got back sooner but have had a very busy few days.
I get incapasity benifit and nothing else.
All my friends go on at me to try and get into DLA. How lucky we both are to have wonderful husbands.
I was diagnosed with CMT years ago. It is very much like having MS and it was passed down to me by my dad. My son has been tested for CMT with negative results. I find my life a struggle at times but i have a wonderful circle of friends and feel blessed. They are always calling round to check up on me. I have cognitive problems eg, I can do the crossword in our daily paper but have to check how i spell the words.
It will be nice to chat at your own pace.
I have loads of emails today so i am going to say adios.
Take Care,
Janex


mima
5 years ago

@nickym,

Thanks for answering, I do get Direct Payments and it has been an utter God send for me, it makes so much difference to how I can live my life. Instead of constantly having carers coming and going during the day I have some stability which I love. As fatigue is one of my major complaints I would find people coming and going all day very difficult, whilst someone living in means fewer changes (well once I have a stable team again). I have gone through stages of having a stable team which is great, and I’m just unlucky enough not to have one at the moment which means new carers.

I do wonder about the dual diagnosis, my neuro has just emigrated to Australia, so it will be interesting to see what the new one thinks when I need to see him. Hopefully he will be nice!

Take care
mima


samii
5 years ago

do you know anyone thats bedridden/house bound and needs a friend or support then please invite them to My new group. Rules to join this group u much be bedbound/house bound

http://www.facebook.com/groups/122942171096663/members/#!/groups/343513452404972/


Anonymous
5 years ago

Hi @mima I am 53 years old, have PPMS and spend about 85% of my time in bed. It was a rude awakening as to how “sick” I was when we moved a daybed into our lounge room replacing our couch so that I wasn’t locked away in the bedroom all of the time. Due to my insomnia and constant wiggling, jerking and spasms I now don’t sleep in our bed any longer but do meet up with my husband in the morning for “spoon time” My fatigue is the most debilitating symptom I have and I fought the whole idea of something so ridiculous controlling my day to day life but now see how much better I feel when I just do what my body is telling me it needs. I too am not taking any meds/drugs but actually feel that this is the best thing for my body and the disease even if it means I have the physical pain and sensations to deal with.

I use a wheelchair when I go out, which is only a few times a week and for a total of between 2 and 4 hours at any given time as any more than that fatigues me to a point of not being able to walk, think, or do much of anything and I start to shake quite aggressively.

I am still ambulatory in my home, but carefully so, however if I try to walk any distance at all (other than to the toilet, to the kitchen for a cup of tea, or some other short trek) my legs become very wobbly and I am unable to stand on them. I am thankful for the ability to get from point A to B on my own. I do keep a pair of crutches by my bed just in case I am getting out of bed and find I am too stiff or too wobbly to walk on my own.

My husband is available most of the time. He semi-retired when we sold our last business and ironically decided to get his certification in aged and disability care. He works part time providing services for those needing assistance to remain in their homes. The rest of the time he has me 🙂

It is amazing how many things I have now found I can do “from my bed” ha ha… I actually have a very full life and am, as you, quite happy. So glad you posted this… so @samii do I qualify for your group or ????? Nice to meet all of you guys….

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