Chronicles of Life with Multiple Sclerosis
with me either i am showered with thirty minutes of makeup and hair done or i haven’t changed out of my pajama pants in three days. there is no inbetween
Is anyone else on Gilenya have side effects like EXTREME fatigue? cog fog that effects vision, and random tingling in legs and arms, and back and neck pain increase? I took a day off and felt better, but today I feel the same (no…). Gonna take it now. Maybe the symptoms were psychosomatic or the combo of the flare up I’ve been having and the heat on top of everything else? just don’t know. but that one day of functioning was sorta nice. ugh. It feels like its midnight but its not even close. stupid body.
I was thinking one night after watching “The Hangover 2”, when they where all at the airport and it shows the destination board flipping the places. Well that’s kind of like how fibromyalgia is it can change at a moments notice. as in delays or cancellations. Hence FIBRODELAYS! haha, well it makes sense to me.
…you don’t answer text messages from a friend because you’re afraid it will lead to a conversation via text and you don’t have the energy to do that.
Oh I know this one… really well. I always feel terrible.. guilty.. then more exhausted and achey.. then bury my face in my pillow and pretend I’m a turtle. heh. Sorry friends, I do love you… and knowing people are still thinking about me does make me feel good.
while searching for my night meds I noticed how much I hoard my meds out of fear of a) not having insurance and b) becoming addicted. ( also my psychiatrist seems unsure about what MS is and/or means heh medication wise.. heh) BUT
I wonder if I should just give in to my high dose of day meds (adderal.. or at least a higher dose than I allow myself) if my fatigue is this bad…cause I have 3 unused bottles of the meds in my medicine box. heh. not that different than my night time meds (though def not that many pills).. though I’m clearly not gonna take ambien any more after the kitchen incident. heh. dunno about this.. but its a thought… though maybe incapacitating fatigue is better than being addicted to amphetamines and sleeping even fewer hours than I already do.
I feel very absent from this tumblr despite the fact that I’m constantly writing posts in my head that never actually make it to paper much less the computer.
I got back from LA on Wed. at 7am after a hellish experience with American Airlines and a red eye, which is never good for my health. I’ll be writing about that soon, or at the very least posting the angry letter I plan to write to them. Lets just say it ended in pain, tears, and an almost missed flight due to complete lack of responsiveness from the staff. The trip itself was fantastic and I miss LA and, more importantly the people there, a whole lot already.
So after getting home & sleeping some off the shitty trip home, I had 1 day to get ready to come down to DC for the wedding of one of my best friends. So exciting to be a part of it but, as many of you probably know, being a bridesmaid is stressful. I only had a few good hours to spend with Zoya (the greatest tortoise in the world) and today we left to drive down from Boston at 7:30 am. It took us 12 hours. While I managed to entertain myself by live blogging the silly and boring experiences along the way (you can read them here if you’re REALLY bored) I’m not feeling so hot. I’ve done more in the last 2 weeks (and will continue in the coming 2 weeks) than I have in a year and a half. I know the steroids did wonders for making this possible but I feel the effects wearing off, the fatigue creeping in, the pain in my back growing unbearable, and all those reminders those of us with chronic illness receive when we try and do things as we did before our illnesses began.
It makes me a little sad because I was enjoying pretending I could do all the things I used to be able to do. I’m a travel addict and always did it on the cheap. These days long drives, sleeping on peoples couches, going out more than once a week, always ends in serious pain, new symptoms, and looming regrets. I’m trying not to let that be the case this time. LA is such a fun place and the sunshine (combined with cool but not cold weather), spending time with some of my best friends, doing things I really miss doing, was all so good for my spirit. My LA friends have a magical way of making me feel like everything is going to be alright and as though i’m just the same person they’ve always known despite the health crazy.
Now, being here in DC, sharing in the wedding of one of my oldest friends, someone to whom I truly believe I owe my life, sanity, and credit with helping me become the adult I am today, is so wonderful. There are lots of fun events planned and dressing up and walking in heels (not so into that one heh). Its great to be able to participate and I’m so grateful that they have made this possible for me both financially and by understanding my needs and respecting them. I couldn’t be more happy for the couple and I am so happy to be able to do this still (though with many many accommodations heh).
The thing is? i’ve been going and going since the 17th of november and aside from my brief time at home this past week, I’m not going to be in my apartment, near my bed, able to sleep and do nothing if I need to, till december 12th. Thats a long time and I do worry what the ramifications of all this will be, if not while i’m here in DC, upon my return to Boston when all the adrenaline runs out.
I suppose its not good to focus on that right now so I’m just going to take it moment by moment. I’ll deal with the pain and fatigue and whatnot as it comes, and try and enjoy these seemingly normal life events as much as I can for as long as I can.
I hope all of you out there are hanging tough. More soon :)