Hello, just need to share and want to know if anyone else has felt like this. I’m secondary progressive and this disease seems to have overtaken my life. I’m housebound and can just about make it out of bed everyday to sit in front of the TV. I can’t move or stand for more than a minute or two without aids. I have nothing to talk to anyone about except this damn disease and feel like life is passing me by. If this is all life now has to offer I don’t think I want any part of it. Lurching from getting to the front room and back to bed is what my life now consists of. Any support would be greatly appreciated.
Sorry to hear you are so isolated and feeling trapped by this disease. I am not sure what type of MS I have just that it looks like it could be progressive. Do you have a local treatment centre? I know where I go they have a volunteer driver who will go and collect people who can’t get there themselves, at least you would get out of the house and be able to chat to other people.
Sorry I don’t have an answer do you have an MS Nurse you could talk to? They might be able to help you.
I have to admit that yes, it’s become a huge thing for me and I struggle to find anything that stops me being drawn back to it! I’ve started writing blog to help me get things off my chest. Yes, like Snowqueen has said, contact your local centre, there’ll be other people in similar circs etc. And when you need to vent, we’re here
Keep your chin up, you’re not alone
Have you got access to a scooter or a powerchair so you could possibly get out at least? Appreciate that you may not have the energy for it.
Wheelchair services should be able to help you.
I think you need to talk to either your MS nurse or GP about how you are feeling.
Nothing stays the same for ever and I’m sure that your current situation will not last forever.
There is help out there, I am sure you will find it. As ‘snowqueen’ has said your local MS Therapy Centre might be a good place to start.
About ten years ago I was in a similar place. I could barely move below my waist, and did nothing besides watching TV, playing computer games, and crawling to the bathroom. It was no way to live. Starting to use a wheelchair massively helped and allowed more freedom, so if you don’t have one already then ask to be referred to wheelchair services.
Contact with people is hugely important, so see if there’s any local MS Society branches or Therapy Centres locally (one of the MS nurses here in Sheffield started up a pub group for us younger types, and we all enjoy meeting up to have a natter about anything & everything).
Another thing that I think really helps is to have some sort of project or purpose. This could be anything - growing house plants, writing (I find writing how I feel is very therapeutic, and gets thoughts out of mu head), sponsoring a child, learning a language… And being thankful is well known to be good for us. This can be very hard to do at times, but there are always things to be thankful for, no matter how rubbish things are, like having clean running water on demand, or that the weather’s nice, or successfully getting to the loo without having an accident.
I really hope you’re able to reach out & find the support you need.
How are you feeling today?
Hi everyone, thanks for your help. Last night things just got a whole lot worse. At about 11.00 I woke and needed to get to the bathroom to catheterise. I asked my husband for hep which degenerated into a row within seconds and didn’t get any better so on top of everything else that really didn’t help. Obviously getting too much for him to cope with. Back in front of the tv watching the Marathon and husband will disappear shortly to carry on with his life, can’t blame him, if I could I would be getting on with stuff. Really feeling very low and can see no situation getting any better. Believe me if I had the guts I would be seriously considering taking myself out, but I haven’t so looks like I’ve got to get more positive. Thanks for your support guys, much appreciated. (Snowqueen - what a lovely log in) Linda x
Sorry things got worse. It’s so hard to be positive when life is throwing the challenge of MS at you, but I know that the negativity can be hard for people close to you.
A friend suggests I read about the Paralympic swimmer from Bath who lives in Bath (sorry can’t remember her name).
If you need some positivity these are some tunes I have always used played loud to help me get my positive head on, Gold - Spandau Ballet (your indestructible!), Don’t stop believing - Journey. Maybe others will have some to add?
I really hope your day improves. Take control you CAN DO IT.
Don’t try to continue to cope with this on your own. I certainly couldn’t.
Get some help.
Another possible avenue for support is the MS Society Helpline 0808 800 8000.
It will get better!
P.S. A wheelchair is an excellent idea.
I don’t know if this helps but when I’ve been at my lowest, and we’ve all been there, I’ve completely forgotten that there are people I can talk to. I’m very lucky in that I have friends and family I could have contacted but in my depression logic went out of the window. I know there is always a hatred of ‘being a burden’ (I hate that phrase but couldn’t think of a better way to put it) but maybe you can make that contact and ask for help, or maybe just a hug.
Also I had a good series of conversations with my local NHS clinical psychologist who helped me think about ways of dealing with emotional problems.
On the more physical side I fraught for far too long against using a wheelchair. Eventually I worked out that I could do a lot more in a chair than I could on my rapidly deteriorating legs. Now I can’t walk at all but the wheelchair gives me a lot of freedom.
Making your own choices and having some kind of control is incredibly important but asking for help is a good choice you’ve already made. (I hope that didn’t come out sounding patronising but I’ve found it difficult to do in the past and it is NOT giving in)
Do you use Facebook at all? I’m being really hypocritical because I don’t but maybe it’s a way of contacting people.
i have felt just like you describe,18 months ago i felt life wasnt worth living, i started to make a list of the things i COULD still do, which i thought wasnt much UNTIL i made the list and then i could see that actually i could DO more than i realised,
it started to get me out the black hole i was in,i also made a list of the things in life to be thankful for,again i didnt think there was much until i made the list,
so now when i feel down,i go back to making the lists,it really does help you focus and helps you think more positive,i am housebound these days,but i accept it now,its not easy but i try to make the most of every day, i try to keep occupied with my laptop, reading, baking,sitting in garden when i am able,seeing my little grandaughter running about helps cheer me up no end too, i cant be down for long when shes around
Sam has a good point, there’s a few good groups on Facebook I use. Women with MS is very good one & members only so you can maintain some privacy. There’s also different groups for the various DMDs, so good place for hearing other peoples experiences.
With facebook groups, you can select the option not to get notifications - it’s quite handy if you feel there’s too much negativity etc. I joined one relating to Blue Badges and I’m still a member of the group and can read threw thing quite happily at times but stopped the notifications as I really couldn’t cope with the level of bitterness and anger I saw EVERY single time I went onto FB - I do agree with most of the stuff said on that group but not good to have that much negativity all the time!
Hope you’re doing ok today
Hi Linda, I totally agree…I was only diagnosed in February yet already feel hopeless. I was diagnosed with secondary progressive MS and also struggle to get from one room to another and using two crutches I can’t carry anything or do anything for myself. Any help with this horrible disease would be appreciated, I literally need help from someone elseevery time I want to go out!
Hi Linda, some very good advice here, and I totally agree with Sam and others, taking control and doing what you can do is so empowering. Feeling useless and that you don’t contribute to life is very harmful and demoralising. And TV is so crap during the day (I can sag from experience), at least the marathon is good. But I know what you mean, everyone else just gets on with their lives and you can easily feel despondent.
stay strong, have a good moan on here, then take a little control over something small and try and build on that.