Don’t know where to start. Still waiting to discuss any treatment with the neurologist so very much in limbo land. No support at all from my wife although she thinks she’s being considerate and caring, but she isn’t. My 16yo daughter just worries about her own issues and my director said he doesn’t care about my health, just don’t bring my problems to work. In all honesty if it wasn’t for my two dogs I think I’d have ended it by now. Never felt to alone or desperate in my life.
I remember the period waiting for an official diagnosis as being the loneliest I have ever felt. Which is a very strange feeling when you're actually surrounded by people! But it's hard when you're in limbo and people aren't necessarily open to supporting you by just listening and empathising. Your wife is maybe just trying to keep upbeat/normal. Let her know what need from her - there's no rule book for her either so she's maybe as upset as you are but trying not to show it. As for your boss, that attitude is sadly familiar to the experience I had when I got my diagnosis and was told "as long as it doesn't affect business as usual!" Needless to say I don't work there any more and am all the happier for it! If work is getting too much, ask your doctor to sign you off for a little while so you can focus on your physical and mental health. There's a lot to deal with so it's not unreasonable to need to take a bit of time out...I know that's what I did! Please hang on in there. This is probably the worst you'll ever feel, which means that things can only get better! Just aim to get through one day at a time and try not to think too far ahead and worry about the unknown. Life will get better, honestly :) (Ps The MS Helpline gives emotional support and information to anyone living with MS...it might help to talk to someone impartial: 0808 800 8000)
Great advice from comment above. I’m also waiting for treatment and it’s so difficult and scary. I really recommend reaching out to your MS nurse (if you haven’t met them yet try and find who they are and reach out) they are brilliant and really helped me feel more supported. Take care