I went to see the MS nurse yesterday. I booked patient transport to ensure I got there this time. I'd already missed a couple of appointments because I wasn't well enough to drive. I didn't know about the transport service until very recently, when my GP informed me of it. It's good to know I don't need to miss any more appointments because of my chronic dizziness.
The transport was late turning up, and we picked up two more patients after me, so I arrived at the hospital 40 minutes late. However, because I informed them I would be using patient transport, it wasn't an issue.
I had to wait about half an hour, then one of the nurses said he was free and could see me. We had a long chat about my symptoms and how I'm coping. I told him all about my dizziness and pain and that I hadn't been out of the house in 5 weeks. I told him I was working from home and how supportive work had been, but that I was feeling isolated. He said he'd refer me to physiotherapy to see if they can help with my mobility and balance. I said I'd discussed it with a GP, who didn't think it would help, but the nurse thought it was worth a try. He also said he'd speak with my consultant about a referral to the Chronic Pain Clinic. I'm hopeful they can advise me further on managing my pain. It's a big contributor to my fatigue.
The nurse also mentioned Access to Work, which is a government scheme that provides grants to help people with disabilities work. I may be entitled to assistance with transportation costs when I can't drive, which will enable me to return to the office. I called this morning to initiate myapplication. I could be back in the office very soon. I'm hopeful I'll qualify.
I mentioned that I'd considered suicide and the nurse looked so sad I wanted to hug him! I explained that I was single, had no close family or friends and didn't want to be looked after by strangers. From my point of view, when I reach the point that I can't work anymore, or if the pain becomes too much to bear, I'm outta here. I'm very pragmatic about the whole thing. I don't want to end up on the streets or have to rely on someone else to wipe my arse. When you're in that situation, ending your life isn't necessarily the worst option. The nurse didn't share my opinion, however, and suggested a psych consult! (I politely declined) ;-)
We briefly discussed DMDs (disease modifying drugs) and he couldn't see any benefit in them. Their function is to prevent future relapses and they can't do anything to alleviate symptoms I already have. However, I have an appointment with my neurologist in 5 weeks, so I'll ask her about them when I see her.
I really enjoyed being out of the house. The drive took us on a route through the Braids, which gave me a new perspective on Edinburgh and the city looked beautiful and vibrant in the sunshine. It fair cheered me up; it felt like a day out.
I need to get out once in a while, although I might need help with that, since I'm unable to drive myself. I just need a change of scenery and some fun. I think it would do me the world of good. Having said that, I was really tired today, all day, so I think my wee jaunt took it out of me, which is ridiculous. I really despise this fucking disease.
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