Hi Christelle, I wanted to reply to this as I am pretty much in the same boat.
I was diagnosed in 2015 with relapsing-remitting. My symptoms are mainly spasticity, bad pain, fatigue (and some kind of weird, pressure feeling in my head which builds to lightheadedness) and weakness. My left side is mainly affected, but I am now getting pain in my right side. Also - this week in fact - my left thigh went dodgy which is affecting my walking. It’s been five days like this now.
I work full time and initially wanted to just muddle through and keep going. However, I wasn’t actually sure whether this was even the right thing to do as I read that some people either reduced their work hours or gave up work upon receiving a diagnosis of MS. I then began Avonex and suffered with the awful side effects two or three days after injecting, even 1.5 years after starting the drug (I switched to Tecfidera a month ago. It’s much better!) Even then I tried to go to work and experimented with the day I injected so that the side effects wouldn’t disrupt work. I read that some people took a day off work after the injection to recover, so again I wasn’t sure whether I was doing the right thing in pushing myself to lead as active a life as possible.
I was primarily motivated by money in that I have a mortgage to pay off and I have only been in my current job for 8 years so I haven’t built up much of a pension. I wanted to work full time for as long as I could to pay off more of my mortgage, plus build up more pension. I also think I am can ‘cope with anything’. However, I now see that quality of life also counts (more than money or putting on a brave face).
With my leg having gone weird this week, today - for first time - I have looked into my finances with a view to reducing my hours at work. Also, when I was first diagnosed I went into work each day. Now I work at home one day a week.
My employer has been very supportive. They referred me to Occupational Health who recommended some reasonable adjustments for my work to make, which they have done. I must say - in trying to push through, I have taken a lot of sick days over the past few years.
I am rambling - sorry! I think what I wanted to say is that at first, I thought that my symptoms were just the normal course of MS and I pushed through. But you also need to think about the quality of your life. It’s no good to go home in tears. Also, we need to make sure that we look after ourselves all round: exercise, eat healthily, keep happy, get adequate sunlight, build emotional support.
I am limping this week because of my dodgy left leg (I think my thigh has gone week. It twitches sometimes too) and I have no idea whether this is temporary and it will right itself soon, or whether it will stay in its current state and I will limp forever more or whether it will get worse and I will need a walking aid. Who knows? I do know that I would like to remain fit and thought that swimming might help? So if I reduced my work hours, then perhaps I could fit some swimming in.
Sorry if the above isn’t helpful… It’s just that your post chimed with me.
You’ll figure out what your MS is like for you. It’s different for everyone one. Whatever you reasons for pushing yourself (wanting to put a brave face on; keep life as it was ‘pre-MS’; wanting to challenge yourself to cope; wanting to keep on earning), these are all fine. But look after yourself too. Listen to your body. Seek help from Occupational Health, your employer, but if need to pull back a bit from work, do it.
Take it easy x
How are you coping? I feel I am not coping well…