I'm feeling stressed about a lot of things right now. I think the stress is magnified by the fact I've been so tired lately. Seemingly little things annoy the hell out of me. People need to realize that it may not seem like a big deal to them, but it's a huge deal to me. I feel that I get dismissed a lot, and my feelings aren't taken seriously. I feel like my life consists of sleep, work, try to stay awake after work, then sleep. I don't want people to walk on eggshells around me, but a little understanding would go along way. There's a lot of things weighing on my mind these days. I need to make some changes to turn things around!
The fatigue thing is really getting to me. Unless you've ever experienced real fatigue, there is no way that you can begin to understand how much it sucks. You literally have NO energy. Getting up to get a drink from the fridge, or walking to the bathroom is exhausting. A few times last week I didn't even have enough energy to stand up and have a shower so I sat in the bathtub and washed my hair with a cup. I seem to go through phases, with this past week or so being pretty bad.
My neurologist prescribed a drug to me called Alertec. Basically, I can take one in the morning, and one in the afternoon and it helps with the lack of energy. Sometimes it works, sometimes it doesn't. I don't want to take it every day, so I reserve it for days when I really need it. I have a feeling that tomorrow will be an Alertec day.
Enough with the pity party!!!! Speaking of parties, the nurse called and booked my Rebismart training session for Saturday morning. I'm a little disappointed because as I mentioned in a previous post, everybody, including my neurologist and clinic nurse told me to take the injections at night before bed. The nurse couldn't come this week in the evenings, and Saturday morning was the only time she could come. I'm hoping that I don't have any sort of reaction because I really don't want to waste my weekend laying around. She told me I should be taking it in the morning for the first six weeks. I will call the Multiple Support program tomorrow and see what they have to say. Taking it in the morning means I'd have to do it before work, which means I could feel like garbage at work. I already don't want to be there, I don't need to feel sick at the same time.
I guess I'll have to suck it up and see what happens. It can't be that bad. Right?
~Sarah
Really wish I was there to help you out! I'm happy to hear you have a support group from the medical profession as well as caring friends. Sure would be nice if family lived closer in times like these, but please know we are thinking of you everyday! Love you Sarah! I'll keep reading about your progress and thanks for sharing your experience with everyone, I think it is very couragous of you!!!
ReplyDeletexoxoxo
Hi. Shannan shared your site. I've been on Rebif off-an-on for (gasp) almost 10 years. Off and on because the off cycles were having 2 children. I won't go into that! All I can say, in my experience, is that you DO need to get the nurse in to help, but I believe in the night-timing. Take the tylenol or ibuprofin (if I don't, I wake up in the middle of the night, shivering) - and don't be afraid to talk to the support if you need them.
ReplyDeleteYou sat in the bathtub and washed your hair with a cup...ok that is a little funny. I can make fun of her because Sarah is my sister!!
ReplyDeleteTry getting some excercise. Force yourself to go out for a walk and the exercise will give you more energy....try it, I know it will help.