Tag Archives: M.E./C.F.S.

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Update…

Just an update: I am on day 48 of the elimination diet, day 17 of no supplements and day 9 of the official two-week wash-out period. I feel awful. I feel like I have a fever. I feel like I have the flu. I feel like my lungs are full of black smoke. I feel like my brain is inflamed. It hurts to move my eyes. My neck is constantly painful and my head started to hurt very badly last night. I need a pain killer that doesn’t cause me respiratory distress. I cannot drink black tea at all anymore. One of life’s last pleasures taken away. I am not eating any aspartame or Splenda. What I continue to take is my probiotic, fiber, Colace, inhaler, birth control pill, antihistamine eye drops and nasal spray, tylenol when I can’t stand the pain and once in a while some vitamins. I think, during this last week of the wash-out period, I will try to hold off on as many vitamins and meds as possible. Who knows? The B-complex vitamin could be causing my headaches. How do I figure it out?

I’m still not leaving the house, I’m still so much worse than I was a month ago. I haven’t been able to do my laps around the house. My doctor thinks I should get a brain MRI and a tilt table test, but I don’t want to do either one. Basically, I’m scared of everything. I now live my life trying not to make anything worse. After being out of work for five months, I’m ready to tackle the disability mountain. It could take years or I may not get it at all. I am scared of losing everything. Have I mentioned that I cannot believe this has happened to me? I would give anything to feel normal again. ANYTHING. I am still in complete disbelief that someone won’t find the one thing to fix. I’m going back to the infectious disease doctor to ask about things I might have caught from critters my dog caught: birds, squirrels, rats… Grasping at straws.

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Welcome Back… Your dreams were your ticket out.

Welcome back night sweats, crushing headache, terrible spinal pain, and debilitating exhaustion. I didn’t miss you at all, but you decided to return anyway. Oh, and you brought pulled muscle and despair with you. Excellent! I was wondering if they had perhaps gone for a while, but I guess not ~ just a quick one-and-a-half-day jaunt away. Well good, I almost remembered how to laugh. I almost remembered what it’s like to have a normal conversation without grimacing, deep breathing or being distracted by pain. I almost enjoyed the taste of food. I almost got to have a meal with my family without it being a gargantuan effort to drag myself upright, raise my eyes to meet theirs and hear what they were talking about. Almost. But not quite.

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Wash-out Period… Day 4

For the last 4 days I have only taken my thyroid hormones, fiber, Colace and calcium, my inhaler (why can’t I breathe?!), antihistamine eye drops, nasal spray and birth control pill. I figure these are things I will have to take regularly, so they don’t have to be omitted. A few days ago, I added back in peas in the form of soup and yesterday I had sweet potato chips. Otherwise, my diet is still no-everything. I still haven’t decided whether I will add back in grains, dairy etc. over the next two weeks. I probably will, but it’s hard to undo the strictness of what I’ve been doing the last month, if you know what I mean. When I commit to a diet change to see if it helps, I really commit.

I seem to be having a heightened sensitivity to my tea in the mornings. I used to drink 3 large mugs of black Irish tea, steeped for about 10 minutes each time. I cut that down to 2 a while ago. Then, about a month ago, I cut that down to 1 steeped, 1 not steeped. Now, it seems I can only handle 1 big mug, not steeped at all or my heart threatens to burst out of my chest. I also stopped using my sweetener today in case my body has decided to reject it after all these years. Lyons tea, unsteeped, unsweetened, with soy milk is not tea at all. Another one of my pleasures down the drain. Really, without booze, wine, tea, pasta, bread, popcorn and ice cream, what joy is left in life?

Yesterday was one of my best days in a long, long time. It wasn’t great ~ still not back to the energy I had when I was able to go to the dog park ~ but, I was talking and laughing with my family, allowing myself to be animated. The pulled muscle in my lower back felt much better, so I even walked around the house 4 times: 400 steps. I hit a big brick wall at about 8pm. My muscles filled with lead and I felt like I couldn’t keep my head up. I lay in bed until almost midnight, too tired to sleep. One time my new phone just froze…stopped working…couldn’t be turned on or off. The guy at the store said it was “bricked”. That’s exactly how I feel when I hit a wall. Bricked. Can’t sleep, can’t speak, can hardly move. Just BRICKED.

Last night, I got about 7 hours sleep, which has been typical since I went off of the naltrexone. I didn’t have night sweats (!!!) and this morning, besides extreme stiffness, sore throat, lungs feeling torched and my skin thinking I’m 15 again, I’m doing okay (!!!). I asked my brother, “Why did you drag me out dancing last night in 5-inch heels and make me smoke a whole pack of cigarettes?” It feels worse than that, unfortunately, but it’s nice to pretend that it’s a temporary result of a night on the town.

It’s wonderful to have my Mother here. She does my meditations with me and talks to me when I’m in bed in pain or too tired to do anything but slur. It makes this journey much less lonely.

I’m grateful for the piano music that surrounded me my whole childhood. My Grandmother and Mother both played and now, when I hear it, I am soothed and at peace.

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PLEASE, please vote for $150K in funding for the new chronic fatigue clinic in Vancouver!!

PLEASE HELP THIS CLINIC!

As soon as this new clinic in Vancouver is open, I intend to go there. It is in the running for up to $150,000 in funding for medical equipment from an Aviva Contest. All it needs is VOTES. The Aviva site asks for you to register in order to vote. All they ask for is your email address, a password and then they send you a link to click on. That’s it. You can also register through Facebook. I think you can vote every day for 15 days. Please, please help.

Here is some info about the clinic:

http://www.vancouversun.com/health/Clinic+specialize+complex+chronic+conditions/6922031/story.html

http://www.bcwomens.ca/Services/HealthServices/complex-chronic-disease-clinic/default.htm

Here is where you go to vote:

http://www.avivacommunityfund.org/ideas/acf13624

Here is the Facebook page:

https://www.facebook.com/AvivaCCDC?ref=hl

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Fight For Your Life

I’m having trouble breathing, still dizzy, painful back and shoulders, stiff limbs, sore throat, constipation and IBS pain, shooting pains in the bones of my right arm that woke me up in the middle of the night (this is a new one), aching hands, no sleep, night sweats (not full-body, just from the waist up), BUT, yesterday turned out to be the best day I’ve had since the 13th. Not as good as the 13th, by any means, but better than the last 16 days of hellish crashing and constant sadness. I was able to stay up and watch a movie when I hadn’t even taken a nap. I dared to use my neck stretcher and my TENS unit, which I can’t do when I’m in extreme pain. And, when I went to bed without a headache, I felt the depression lift. Don’t get me wrong, I’m depressed about this situation, but I don’t think antidepressants are the answer for me. I am instantly a happier, more hopeful person when the physical symptoms ease up. My only fear right now is that my lungs feel like they do before I get a chest infection. Like all that stuff is clogging the alveoli, but it isn’t rattling or cough-upable yet.

I walked around the house 3 times the past 2 days. Not around the block, just around the house. It’s about 100 steps. My new plan is 3 times around the house for 3 days, 4 times around the house for 4 days etc. By November 18th, I will have completed 10 days of 1,000ish steps. I’m going to try coupling that with gentle stretches each day.

I’m trying to have this new attitude that I am going to fight for my life. That’s it. I’m in a battle for me and I’m going to win. Maybe I’ll never be the old me ~ maybe I’ll always be more fearful and less carefree than I ever was in the past ~ but I’ll be a wiser me, a more appreciative me, a simpler me. And one day I will stop lamenting what I lost and start to find joy in what I have. In the future, I hope that’s not such hard work.

Tomorrow I see my PCP (GP) after a 3-month hiatus. Tomorrow my Mother comes to visit for 2 whole weeks. I am grateful for my Mother. I am grateful in every cell of my body that I was blessed with a Mother who is also a best friend, confidante and mentor. I have never lived a day without the knowledge that I was wanted, cherished, supported and loved. Now, that is something to truly be grateful for.