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!
I hear you on the early death statistics. That threw a cold bucket of water on me too, when I heard it.
We won’t be one of those statistics, Curiosity! Must conquer this shit.