Hi ladygodiva. I have diagnosis of PPMS and like you, I still have to work for financial reasons. I can’t see the logic in the nurse’s advice for you to give up your paid job and then work for free. If she suspects you need to take a rest from working then why suggest you take on extra work that you won’t get paid for?
Although I also am not in a wheelchair, even a very small amount of physical exertion exhausts me and causes pain that can last up to several hours afterwards (the amount of exertion to cause this would be things like the short walk to the bus-stop for my commute to work, then walking from the bus-stop at the other end to get to my work building).
I have had a horrible time fighting for reasonable adjustments at work. I was granted a very limited amount of time to work from home, but in the course of fighting for this I became viewed as a liability by the bosses and they have really taken against me. They did things that definitely broke the law (Equality Act) but I’ve not had any support from the institution. It’s been devastating.
I am going to see an MS nurse for the first time in a month or so. I don’t know if it will help, but since my GP’s advice and support is limited to offering me Gabapentin (which makes me feel terrible) and then telling me to wait and see what my neuro says at my next annual appointment - then my neuro’s once-yearly advice consists of telling me to see my GP and ask for Gapapentin to relieve my symptoms (it doesn’t!) - I feel pretty much on my own as it is. When I’ve asked my neuro for more information, he says ominous things like “Primary progressive MS is never a good diagnosis” and he looks at me like I need to be told that because I’m not sufficiently grateful for my relatively good health in the meantime. Maybe that’s true, because I know things could be so much worse, and that things are worse for a lot of people who have MS. I also know MS is unpredictable and there is no certainty that I will end up with serious mobility issues and no certainty that I won’t.
Truth is, I’m having a hard time coping with pain and sensory symptoms (and worry about the future which I try to put out of my mind mostly), but I live in a part of the country where the NHS is pretty stretched, so I’m not a high priority. I don’t know if that’s the same for you, but I think when resources are tight we get conditioned to be so grateful for any kind of help at all, that sometimes we end up accepting things that aren’t even helping.
I decided Gabapentin wasn’t helping me enough to make up for the side effects, so I stopped it. NB. I had not been on the medication long enough for this to be dangerous. I would not advise anyone to come off medication suddenly without medical advice, because that can be dangerous.
If the MS nurse isn’t helping you, and worse than that, seeing the MS nurse is making you feel depressed, then I think it’s only sensible for you to question whether you want to continue to put yourself through it. Gabapentin made me feel depressed. I have enough going on without depression in the mix, and it sounds like that’s true for you too!