Hey so I was diagnosed over 4 years ago and recently I heard about someone who is 30 and bed bound. I try to keep positive and live for now but I can’t help but think about my other half who I have been with for over 5 years. I don’t ever want him to have to put his life on hold if my diagnosis gets worse. Feeling very down about this at the momment
None of us can know how tough it`s going to get hun.
I`ve been married 45 years and my OH is my main carer. I also have 2 lovely ladies who come in every morning.
If your OH has to do all your care, then it`s not a great idea.
Relax and enjoy what you have with your fella, yeh?
Being aged 30 and bedbound sounds absolutely bloody awful. I’m not surprised you’ve got the heebie-jeebies about it. But you should keep telling yourself, it’s incredibly rare.
Have you got relapsing remitting MS? And if so, are you on a good (i.e. reasonably good average relapse rate) DMD? If not, then consider getting on one.
Of on the other hand you have one of the progressive kinds, then think about your current fitness level irrespective of MS, and see if there’s anything you can do to improve it. (In fact, I’d think about this if you are RR too.) Is there anything you can do to help with symptoms which then impact on your ability to keep your fitness level as good as possible? I’m saying this because the better your general fitness level, and general musculature, the less disability you will be likely to accumulate as a result of symptoms.
Also, what is your current rate of progression? Have a think about whether you are likely to be very significantly disabled in the short term?
You should perhaps also talk openly with your partner. You’ve been with him a bit longer than you’ve had MS. He had the chance to bolt when you were diagnosed, he still has the opportunity. And perhaps he worries about your potential for disability too. This could be in terms of how it will affect you, or how it will affect your relationship, or indeed whether you will need him to care for you in the future. If you are both open about your feelings and your fears for the impact MS has on your lives, it might be a very confidence boosting thing.
The last thing I would suggest you think about is the impact on your lives if he was suddenly to become radically disabled. For example, what if he were to develop something like Motor Neurone Disease (or of course one of many other disabling conditions)? What if it were you who was facing a potential future where you are caring for him?
JoLouise, MS (or any long term illness) will always affect more people than just those with the condition. It can be pretty frightening to think about all the possible “what if” scenarios. Whist I do not advocate sticking your fingers in your ears and singing La La La I would suggest you try and compartmentalise. Break things into little elements tat are easier to deal with. I try to only worry about the stuff I can do something about. (Easier said than done and I do still have moments when I feel completely overwhelmed) Honest open communication with your other half will help. We tend to try and protect the ones we love by not always sharing the crappy stuff. Try to imagine how you would feel if the circumstances were the other way round. Poll made a great point Relax and enjoy what you have with your fella, yeh? I would add , enjoy the good stuff and learn from the not so good stuff. All the best Mick