Today, however, I truly am getting there. Yesterday evening my fever finally broke, after a week. I was starting to think it might go on for months. It felt like it had already been months. When I saw the normal temperature on the thermometer, I was ecstatic.
I'm going to my Zaidy's Shiva this evening. It will be the first time I've seen any of my relatives since before his death. My friend Val came to my home and sat with me during the afternoon of his funeral. I showed her some photos of him but in the end we talked mostly about other things. Every time I got emotional I got so short of breath that I had to lie down or I felt I would faint. I figured I'd better put that grief on a shelf until I have more stamina. There will be all the time in the world to miss him and remember him later.
I'm going to take it very easy this week. I plan to work primarily from home. If and when I do go in, it'll be for half-days. I cannot risk triggering myself again. In order to help myself, I have written some Rules of ME Survival. These are the lessons that I seem to forget in between crashes, so I need to be reminded of them every day.
- If you "feel fine" but the thermometer says your temperature is up, shut up, lie down, and rest. The thermometer is always right, and you are always too optimistic.
- Do NOT exercise while your muscles feel weak, not even with the lightest hand weights. Overexertion in this condition can actually kill the DNA in your cells, resulting in cell death. This is a medical fact. You will be more prone to muscle cramps. If you trigger a back spasm the pain will trigger a downward stress spiral. DON'T RISK IT. Mild stretching ONLY.
- Do not attempt to stand for long periods of time relative to your strength. Same thing for walking. Slow baby-steps only, and sit down BEFORE you're exhausted.
- Outdoor environments are more stressful than indoors due to temperature variations. Go outside minimally: only as much as you need to to stay semi-sane.
- Social activities are exciting, and excitement is a positive version of stress. Therefore, minimize socializing to phone calls during a crash. Re-introduce social activities slowly, and if in doubt CANCEL, even if it is something you were really looking forward to, or something super-fun, or if you already have the birthday gift and card ready to go. A few hours of fun can lead to a week of illness.
- Although you hate taking cabs because they are expensive and smell funny, do NOT attempt to take public transit for at least 3-4 days after returning to work. Start with a half-day of work, and increase from there. Work from home when possible. While you are still tired you are at risk of triggering a fresh crash.
Believe it or not, there is a way in which I am struggling to accept the fact that I have a chronic illness. Despite the fact that it's been in my life for 8 years, I can't get used to the idea. I've coped via denial and bottomless optimism for as long as I can remember, and trying to turn that train around is no easy task.
I now have complete sympathy for all the people who stop taking their meds when they feel better, no matter what their ailment may be. It's my personal experience that humans are able to understand "the present" in a time span no longer than three weeks, so whatever condition persists for more than three weeks feels convincingly permanent. If I feel healthy for three weeks or more, it's easy to forget how vulnerable I am. It stops feeling real. (Conversely, once I've been ill for three weeks I start to believe that I'll never recover.) This is all quite predictable, and even knowing this doesn't take its power away.
In order to hammer home the reality of my situation (and because a doctor relative of mine advised me to do so) I've started a symptom diary. This will hopefully force me to think about my ME every day, even when it's not actively causing problems. I have put my Rules of ME Survival at the top of the journal document. The stupid and annoying thing is that there's nothing so dangerous to me as feeling healthy, because that's when I will over-exert myself. Somehow I need to minimize that as much as possible.