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Oh, by the way…

Thanks to those of you that helped vote for the Vancouver clinic, but it turns out they are only taking B.C. residents. Of course I still hope they win the contest, I’m just upset that there is an ME expert in my backyard and I can’t see her. There is NO ONE anywhere near me in the States.

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Spoke too soon. Again.

This is such a sick joke. I actually thought the last few days, maybe this is the beginning of the end. I think I’m going to get better now… What’s wrong with me? Am I going to spend the next 20 years thinking this is over every time I have a day when I’m able to move? I’m so angry about the tease. I’m so angry about the Catch-22: I can’t move without hurting myself and, if I don’t move, I’m hurting myself.

I had a horrible night’s sleep. Didn’t fall asleep until nearly 2am, had nightmares, awoke constantly, had drenching sweats. Today I feel like a truck hit me. All of my muscles feel inflamed. I’m hunched, I’m hobbling, I’m creaking, I’m wheezing. My spine is rebar, my eyes are embers, my head is a rotten apple.

But my mood isn’t plummeting into despair. It’s just sitting in anger, which, for me, is much more manageable. My stages of grief (denial, anger, bargaining, depression, and acceptance) seem to be mixed up. You’re meant to go from depression to acceptance. I’m going backwards. I was in depression last month, denial yesterday and today I’m angry, so let’s get straight to bargaining: I would give a limb to be out of pain. I would give two limbs to not have this disease. No contest. I will never, ever work myself close to death again and neglect all my friends and family. I will do nothing but altruistic work for the rest of my life, if this is taken away. I could bargain for days.

Now I hope we can just jump over depression and get straight to acceptance.

 

 

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Diet… Day 51. Wash-Out… Day 12.

Last night I drempt that I had been out socialising with friends and I started to crash. I couldn’t get back home, so I was trying to get my husband to find me a hotel room… I had to lie down… I was going to collapse… please help me, it’s dark and wet and where is everyone?… I just need a bed for a few hours… I don’t want to die… And then rats attacked me. They were fat and wet and squeaking and hanging off of me everywhere… I woke up panting while I was being eaten by the rats. I was scared shitless and didn’t know where I was and my sheets were wet from sweat.

I have, however, been feeling a little stronger the last few days. Not strong, but stronger. My headache has eased up enough to be manageable with epsom salt baths, the tens unit and icy hot spray on my neck. The pain and stiffness in my back doesn’t have me in tears and the exhaustion seems to be controlled. Just a normal ME/CFS exhaustion, not a crippling, slurring, crawling-up-the-stairs exhaustion. I have a new symptom driving me batty: constant pins and needles in my right foot for the last 3 days. It moved into my calf last night, but doesn’t seem to be there today. I have had this before in my hands and I have the Raynaud’s issues in my feet, but I can’t remember this maddening constant tingling before.

My days have become very predictable. I am up at around 8:30am, after about 7 to 7.5 hours sleep. I have GREEN tea now and, for breakfast, homemade granola with almond milk and a smoothie (today was pear, pineapple, strawberry smoothie with flax seed, coconut milk and walnuts) while I do some “work” on the computer (pay bills and curse Comcast and Verizon, see how our budget is going, answer emails, apply for disability but get overwhelmed and stop, try to make an Amazon Fresh shopping list because I can’t go grocery shopping and decide it’s too much energy and too expensive, research ME treatments and start to bang my head off the wall, research MRI stories and wish I had the option of Valium, write in my blog etc.). Then I warm up my muscles with a bath or the hot tub, do some stretches and then a meditation, which I always try to turn into a nap. Then lunch (usually a salad or soup or tuna and I’m currently addicted to Terra Chips) and maybe some house chores if I’m able. Maybe some reading or some more computer time. Another meditation (rest before and after activity, always. Resting is considered only lying down with eyes closed, awake, meditating or sleeping, says Dr. Bested). Walk around the house, if I’m able and then the evening with my husband, having dinner (whatever is leftover or whatever he makes because I’m virtually never able to stand for long in the evening without hitting that pain and exhaustion wall), watching a movie ~ whatever I can manage. Another meditation if I’m not going to bed early. Most of the time I’m in bed at 7 or 8pm, reading/researching. Some of the time I can stay upright until 9 or 10pm. I usually don’t turn off the lights until after 11pm.

My sister-in-law sent me a Stretching for Beginners DVD and usually anything anyone buys for me is too advanced because I’m more decrepit than they realised, but this DVD is good! I have done the sitting, standing and lying stretches ~ one on each day that I’m up for it. So far, it has felt good and I’m so proud of me. And I’m ecstatic that I haven’t pulled a muscle doing it. Maybe I’m finally learning. I walked five laps around my house yesterday. I’ve been wearing a pedometer this week and have taken between 1,700 and 2,200 steps each day. I realise this is not a lot — my dog park visits alone were over 2,000 steps — but, those numbers are including 400 to 500 steps walking laps around my house. There are many, many days when I’m not able to do that and my pedometer would say more like 1,000 steps at the end of the day, so I’m happy. I want so desperately to double, triple those steps. I want to go outside and run as hard as I can for as long as I can. On top of everything else I have had to endure, the patience needed to deal with this disease is mind-blowing. Every time I have to go upstairs or downstairs, I think, “What can I take with me?” so I don’t waste any trip. Every movement is about conservation, every day is planned, every physical feeling analysed to ascertain whether it was caused by too much of some activity or emotion. Damn, I shouldn’t have done laundry… I knew I shouldn’t have chopped those vegetables… If only I hadn’t lost my temper… From now on, I must sit down when I dry my hair…

My mood is much better, which is probably why I’m feeling stronger and my symptoms seem a bit more manageable. I think my Mother and brother being here helped give me strength. Plus, I got to Skype with both of my best friends in the last week and that is like a pain killer. Literally ~ people can be pain killers. It’s amazing.

Something else helped nudge me from defeat into fight-mode: I read that there are multiple studies putting the average age of death of ME/CFS patients in the late 50s. That’s about 30 years too early. On the one hand, I’m very grateful that I might have 20 more years to live and, on the other hand, I’m devastated that I might only have 20 more years to live. I’m not emotional over it. It just caused me to think, Alright, time to get over this now because I’m not going to die in my 50s, dammit. Obviously, I’m not just going to “get over it”, but it made the fight come out a little. I can’t just accept that this is permanent because I don’t want to be one of those statistics. So, time to heal. Seriously.

My back is killing me, I have to stop typing now. So, a moment of gratitude: I am grateful every single day that I am not worse off. I am grateful for walking and talking and typing. I am grateful for eating and drinking and showering myself. I am grateful I was never in a motor vehicle accident, never got fungal meningitis from a steroid injection, never got shot or stabbed or beaten up. Some people are much more… oh, ever so much more… oh, muchly much-much more unlucky than you!

It’s a troublesome world. All the people who’re in it
are troubled with troubles almost every minute.
You ought to be thankful, a whole heaping lot,
for the places and people you’re lucky you’re not!

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How My Illness Began … Part 1

[Although I’ve already posted an excerpt from my diary about those months at the beginning of my illness, I wanted to tell the whole story. It will have to be in increments because it is exhausting physically and emotionally to relive those days. But, I don’t want to forget them. Also, I realise that this was the beginning of what stopped my life in its tracks, but perhaps not the beginning of ME, so I’ll eventually have to write a prequel to this Part 1.]

I was sitting at our dining table at the beginning of November 2011, writing Christmas cards when I was hit with a wave of nausea, chills and exhaustion. Whoa, I’ve been at this too long, I thought. My husband was on the couch watching television, so I curled up on the recliner and fell asleep immediately. When I woke up an hour or so later, I knew something was very wrong. I was shuddering with chills, my teeth were chattering, I felt infected or infested.You have to come to bed, something’s wrong and I don’t think I’ll be able to make it back downstairs if I need you, I told my husband. I crawled to bed, he made me a hot water bottle. I was dressed, wrapped in a blanket, under the duvet with a hot water bottle, curled in a ball, shivering ~ practically convulsing ~ with chills. I tried for about half an hour to cover my ears, I thought if I moved my hand out from under the blankets, shifted my position in any way, I might die. I have found that severe chills are as debilitating as severe vertigo and severe pain. I fell asleep for a brief amount of time and, when I woke up again, I was drenched. There was sweat coming out of every pore in my body. And not just beads of sweat ~ rivulets of sweat. My bed was wet, I could have wrung out the sheets. Sweat ran down my legs, down my chest, pooled in my belly button, my back was slick. My ears were wet, my hair was wet, my knees were wet. I was flabbergasted. Never, ever had I experienced anything like this. Such an immediate and systemic response to a pathogen. I could only hope that this would be it and be thankful that the chills and sickness hadn’t lasted days. If the fever had already arrived and broken, then maybe this would be short-lived. I spent the rest of the night plunging in and out of fever dreams, shaking as violently as I had with the chills. In the morning, it subsided. I was spent, exhausted, traumatised, but I thought it was over. I was able to continue work that week. Besides being a little unnerved, weak and tired, I was able to get on with life. However, the chill/sweats cycle happened again a few weeks later… and a few weeks later. I finally went to my doctor. When this is happening, I told her, I feel like I’m dying. I know that sounds melodramatic, but, honestly, when I’m in the grips of it, it feels like there is absolutely no way I could manage going to work that week ~ maybe even month. It feels like I should be hospitalised. I asked her to test me for malaria because that was the only thing I could find in my research that had such debilitating, but cyclical symptoms.

As the end of the year approached, I got worse. I was pushing myself very hard at work, trying to wrap everything up so that I could take vacation days when my Mom visited. The episodes were occurring more frequently and leaving me progressively more sick and weak. I started working some days from home, dragging myself to the computer for 8 hours, over the course of the entire day, crawling into bed periodically when I couldn’t be upright anymore. Two days after Christmas, I was told the malaria test was positive, but they wanted to retest because I hadn’t traveled to a malaria country in over 7 years. My Mother arrived on December 30th. I was doing okay, I picked her up at the airport. That night, as we were sitting at the dining table eating soup, I was hit out of the blue with incredible vertigo. It was like being on a tilt-a-whirl, I gripped the edge of the table and looked at my husband, wide-eyed. Oh shit shit shit, WHAT IS GOING ON? Never, before or after, have I felt the room spinning so violently. I went straight to bed. I don’t really remember the next 5 days. I remembering waking up, hearing my Mother and husband downstairs watching the ball drop in Times Square. I lay in bed, nauseous, dizzy, chilled and sweating. I couldn’t eat, I clung to the walls walking to the bathroom, I just kept thinking, I don’t want to die. In the past, I had had food poisoning that could have killed me, gone into anaphylactic shock that should have killed me, passed out and had vital signs so low the EMTs’ field notes say they couldn’t get a blood pressure reading, but nothing made me feel like I was truly going to die like this did. I wrote goodbye letters to my family. I wrote down all of our passwords and account information for my husband, I wrote instructions for my funeral. I did all this with a pencil, lying on my side, under the covers, sure I didn’t have much time. At some point, in the middle of some night, my husband took me to the hospital to get my blood drawn because parasites are more evident in the middle an episode. But, from the beginning of the chills to the time they actually got around to taking my blood, 6 hours had passed, so I knew it was a wasted trip.
This took me a month to write. Stay tuned for Part 2.