Firstly my MS is nowhere near as bad as it could be, and for that I am grateful.
I am 37 yrs old; I was diagnosed last year; I have relapsing-remitting MS; I have brain and spine lesions; I am on Avonex weekly self-injection; I suffer pain, spasms, fatigue, numbness, brain-fog, arm weakness, eye pain and mild blurred eye sight (I’ve had an eye test - no need for glasses).
I work in central London, 5 days a week and have a 45 minute commute in rush hour to work/home. I have a boyfriend (who is 35 yrs old, diagnosed with osteoporosis in 2014) and not as much of a social life as I’d perhaps like but I do see people.
I feel that I have a low quality of life. Nowadays I am kept awake early mornings with neck spasms and pain. My arms hurt and I have weakness in them. I started Avonex in January this year and still get some side effects (headache & chills). I continue to work full time as I feel I should because I am young enough and - in the great scheme of things - I am well enough to do so. But I am tired and really don’t know whether I am coming or going in life. I’m working to 60-70% capacity in my job, which isn’t great.
I’ve been with my boyfriend for 9 months. I don’t know what kind of life I have to offer him because I feel that I am weakening physically and that my resolve is also weakening. I guess that I am annoyed with him because he’s 35 and still lives at home (in a beautiful, comfortable period house in a lovely part of London with his mother who is 67. He has a comfortable life, but then again he also has bad health like me). I live alone in my flat.
I live in east London and my boyfriend lives in west London and we commute to each other. In an ideal world I’d like to move in with him soon because all the commuting and constantly carrying a change of clothes across London, plus fitting him in around my job/home, is making me tired. Plus I would love to be able to take things easy at home and have some help, and to build a life with him and help him also. But us moving together is not an option right now as he is a fairly low earner. He has two part time jobs (teaching) but his wages would not allow him to comfortably rent, even if he were to split rent with me. Plus he feels that his mother needs him at home.
I know that I possibly wouldn’t have as much of a need to live with my boyfriend if I didn’t have MS. I’d be happy being independent and having a good relationship with him, taking things nice and slowly. But I am tired. I am mentally tired and physically tired. The MS affects me.
I guess that I am off-loading and having a moan. I fully appreciate that for many of you, your MS is far worse than mine. I need to buck up and get a grip. But I just don’t know what to think anymore.
How do you cope with planning life, and the thoughts and emotions behind it all, plus your expectations of others?