hi all, new to this forum chat mallarchy, feeling down at the moment, everyone says ‘oh your so positive how do you do it’, well newsflash, i’m struggling on the inside fighting this constant worsening battle, there are many days, and all to often, that i feel like giving up but i can’t. i have a wonderful partner who is not well herself,(fibromialgia, rhumatoid arthritis) i have to go on for her, though some days i’m overwhelmed with anger,and grief at what should have been for us. i was diagnosed 10 years ago, and am now wheelchair and house bound, trying daily to exercise to try and keep core strenght is exhausting me it’s just a constant battle that never seems to have any light at the end of the tunnel. how am i to stay positive when i’m losing the will to keep fighting.
Hi Paul, sorry you are having such a rotten time. I’m glad you found this forum as it can be a really good support & a way to realise you’re not alone with this. So welcome to the gang… and let’s hope we can help you get this sorted.
Reading your post one thing really stood out to me… “and am now wheelchair and house bound”.
OK, I know it’s tough being a full-time wheelchair user… but why are you housebound? So a list of questions for you: Have you got an electric wheelchair? Have you got enough mobility to get onto a mobility scooter? Are you physically able to get out of the house on your own in a wheelchair? Have you been referred to Occupational Therapy (OT)?
I think if a way could be found to at least get out of the house things might feel a bit better… which is why I ask those questions.
Don’t get me wrong here… I very often don’t go out for weeks at a time… but that is my choice. I simply don’t feel well enough … but the difference is is that I’m perfectly happy NOT going out. Reading your post I get the feeling that you would want to go out if you could. Am I right?
Having this damned disease is very very hard!!! So I hear where you’re coming from… but I hope now that you’ve found us on here you will at least know that you’re not alone… we all know what you’re going through… and between us we might come up with ways to help you feel more positive.
Of course there’s no wishing away the MS (if only!!!) but what would make a good positive change to your life? Something within the realm of possibility (ie not winning the euromillions!). Think about it. One thing that you could change…
No instant answers but it’s a start.
Take care and I’m looking forward to seeing you on here often,
Welcome to the forum, we have lots of lovely friendly people here, always willing to listen, and offer advice when we can.
Sorry you are struggling at the moment, but keep in mind that our symptoms, although experienced daily, but to varying degrees, and whilst things are difficult at the moment, better days will come.
I am a wheelchair user, I have a power chair supplied by wheelchair services, and do try to get out and about, sometimes only to the local shop close by, but it is good to be amongst people.
Perhaps that could be an avenue you could try, I find it quite depressing staying home all the time, or is it that access in or out for you is difficult? If that is the case, Pat has given you good advice, to see an OT who can help in that problem.
If you have an ms nurse perhaps you could talk to them, they may come up with very good solutions to stop you feeling so isolated.
Looking forward to you being on the forum again, we all do understand, take care.
Sorry to hear you’re having such a rough time. With both of you ill it must be a real trial.
I know exactly what you mean about being positive on the outside in public, and struggling inside. Also that feeling that it isn’t fair. I’ve been trying to answer that since I had cancer, which I survived, and now PPMS. I cry a lot about it.
I think the only answer is ‘well actually, why not me?’. The world is and always has been full of people having a tough time. It’s a lottery. We bought duff tickets and we can’t change them.
I echo Pat & Pam’ thoughts on getting out, but I find it harder and harder to find the mental and physical energy to do it. But I usually enjoy it when I do. I have a ramp at the back door, provided by OT. I couldn’t manage on my own though.
hope you get some comfort from the fellow travellers on here.
Hi Paul and so sorry to hear you’re having tough time, I echo so much of what’s been said already and yes, I also cry a lot… odd occasions when I take a month off, I have a OTT crying session, I hate that feeling of desperation, cos that’s where MS seems to put you at times.
Welcome to or group, I hope it gives you some support
Hi Paul and welcome to the forum, as mentioned by the others we do try to support each other as only we understand the realities of coping with ms. You sound very down at the moment which is understandable especially with both you and your partner having chronic debilitating illnesses. I often struggle with keeping the happy face on while inside I just want to scream “stop the bus, I want to get off!” Unfortunately my stop never comes but some days are better than others.
I think the suggestions to get you out of the house are really good. I love being at home where I always find things to do, have loads of hobbies and am very happy with my own company, quite a recluse if I’m honest, but even I need to get out every now and again, see people and get some fresh air and just have a change of scenery. If you don’t have an OT you can self refer. Even the benefits system has recognized the need for us to get out with DLA trying to make allowances.
We all know that this isn’t the only aspect you’re struggling with but I wanted to ask if you’re taking it if not, have considered an anti depressant. Depression is really common in ms both because of what we have to cope with but also the changes in the brain can cause it. It’s nothing to be ashamed of, if you ask you’ll find that many of us, myself included take them and they do make a difference.
Please let us know how you get on and visit the forum regularly. It’s been a great help for me and the people here really care.
Hi Paul, you sound really desperate, the positive in this as i see is you’ve said out loud on here how your feeling this is a big step and you saying something has to change. You haven’t said if the battle is exasperated by environmental restrictions or just mental & physical exhaustion for whatever reason others have given you sound advise on all levels. Please continue to sound out how you feel and expect more for you both as a couple.