I have PPMS and it’s badly affected my walking. I’m pretty much housebound. It feels as if the rest of the world is going somewhere and I’m just stuck here in a bubble. Does anyone know what I mean? I have a loving husband and two wonderful children but I feel so alone. I don’t like feeling sorry for myself but it’s really hard wearing a mask all the time for the benefit of others. Can anyone relate?
Hi. You’re definitely not on your own, I imagine most of us have felt similarly at one stage or another. I will never forget wanting time on my own where I could have a little cry, as I didn’t want friends or family to see just how low I felt. I can laugh at myself now coming up with the stupidest reasons for having red eyes - I’ve just woken up, been sitting in the sun, or my favourite was that I’d been chopping onions.
You’re very lucky to have a supportive family, but it’s hard trying to keep your emotions from them. You are allowed to feel a bit down at times. You don’t mention how long you’ve been diagnosed, if it’s early days you need to grieve. You might not have lost someone close, but you have lost what you had envisioned for yourself as you get older.
Do you take anti depressants? They’ve definitely helped me. They aren’t going to transform your life or emotions overnight but they do help you cope with emotional ups and downs. Having someone to talk to openly about what’s really going on in your head is important too. Your GP could arrange counseling, or your MS nurse may be helpful if you’d rather speak to someone who isn’t a friend or family member. If not, there’s always someone on the forum who understands.
Whatever you choose to do, don’t be hard on yourself for feeling the way you do. I was a very active single mum and a nurse before I became ill and it’s taken me a long time to accept and settle into my new life. I still have my moments when I’d love to be out doing things other people my age are doing but have to smile and say “Oh, that sounds fantastic, enjoy it” while holding back tears of frustration.
I’d definitely suggest anti depressants. You may not need them permanently but I have accepted that I do need to stay on them. I try to look at my blessings, I love crafts and think I’m so fortunate to still be able to do things I enjoy, even though it’s at home.
Take care and don’t be frightened to come on here for a rant or chat anytime. Fortunately we do really understand!
I’ve had PPMS for a long time. I live on my own, I’m divorced and I have severe mobility issues.
I get out and about in my wheelchair. Before the wheelchair days, I was out and about with a walking stick.
I’d cry openly then laugh about things. I have friends with the same condition or recovering from life-changing setbacks. We laugh like drains during pub lunches and evenings out. Going out is an option. Planning becomes an essential part of our lives. Look at your limitations and find ways around them. They may be expensive ways but think of the alternative. I’ve been able to adapt my modest flat to suit me but it’s not my prison. It’s worth it.
You can do it.
Best wishes, Steve.
Firstly, take off the mask. It’s okay to let others know how you really feel. How else can they know how you are? If everyone thinks you’re doing “just great”, how can people talk to you about things and maybe even offer some help and solutions?
As Steve said, you have to utilise what you have and find practical ways around the things you can no longer manage. I was diagnosed suddenly over a weekend. Literally. Admitted via A&E on a Saturday morning and told I have ms Monday. I was using a rollator and wheelchair by the end of the year. I can assure you that was hard to swallow. Now it’s mainly wheelchair. Many tears of anger rage and self-pity have followed an a lot of swearing when I felt like it! Now, four years on, I figure life is what you make it. Adapt adapt adapt.
Using my electric wheelchair allows me to get around outside. A light folding one allows me to go abroad for a week with my husband. Airport assistance is brilliant! People are very helpful and I think they actually like to help. I always have a plan of sorts, whether it’s looking for cheap flights, changing hair colour or a trip to the garden center. You have to burst that bubble and go out there.
Go for it!