Sunday, September 25, 2011

Getting There

That's my stock answer when people ask me how I am and I can't tell them "fine".  "I'm getting there."  I say it even when I don't even believe it myself, or when I'm not sure where "there" is.  At least it sounds optimistic.

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.


Jenski said...

Have your ME symptoms and crashes gotten worse in recent years or is it taking you longer to recover or is it just easier to recognize what is happening to your body with a more defined diagnosis? That sounds really tough to figure out how best to keep yourself in a healthier state and have to remind yourself you're sick when you feel good. Maybe with your ME rules in place you can get to a point where you can intentionally ration excitement and while keeping your body going.

My thoughts continue to be with you and your family as you remember Zaidy.

Jameil said...

((hug)) for Zaidy. I'm so glad you're knowing and working on adhering to your limitations!

Warped Mind of Ron said...

Hopefully the diary thing helps. Hope it leads to healing up so you can start getting out and having some fun again.

DarcsFalcon said...

It's hard to learn to adapt. I had some kind of injury to my tailbone for many years and learned which chairs I could sit in and for how long.

Sadly, this is your new normal, but I think you're navigating through it quite well, even if it does feel like it's taken you some time to get there. We all have adjustment periods - some are just at different speeds.

I suspect the hardest part for you will be "thinking about it every day." You strike me as the kind of girl who wants to dwell on positive things, and an illness probably doesn't feel so positive. Perhaps knowing that "dwelling" on it will lead to more positive periods will help?

I'll be praying that you maintain your strength and spirit in coping with this, dear Spark. It's never easy to "cowboy up" and just get through something, but I have confidence in you. :) *hugs*

Granny Annie said...

When my husband is asked, "How do you feel?" he responds "With my fingers" or "Finer than frog's hair".

Lynn said...

I'm glad you could go to your Zaidy's shiva and hope you will feel well after. I'm sorry you are having to go through this.

Sparkling Red said...

Jenski: It seems that my tolerance for physical stress has been decreasing slowly over the years, which is probably a natural consequence of getting older. As of this summer I have not be recovering as quickly as in the past, but that might just be a phase. This whole season, starting with the wheat intolerance fiasco, has been a tough one. I am hoping to work myself back up to a better default condition with these new rules, by saving my energy like pennies in a piggy bank. If I can spiral down, I can spiral back up again, right?

Jameil: Thanks. You've no idea how often I have to yank my own leash to stop myself from breaking my own rules. Several times every day lately. But it's working: I'm improving.

Ron: I hope so too. I'm about ready to have some fun again soon.

DarcsFalcon: It goes completely against my nature to be realistic about my physical limits. Funny - I never realized how much of a Pollyanna I am until just recently, when I have had to rain on my own parade. And just when I think I've got it drummed into my head, I wake up the next day and it all seems silly and I just want to throw myself back into my active life again. I can see that this is going to be an ongoing struggle.

Granny Annie: "With my fingers"? Smarty-pants. ;-)

Lynn: Thanks. I'm glad I went to the Shiva but it was certainly draining, emotionally and physically. You're supposed to stand up for around 45 minutes of ritual prayer. I stood near the back and left for regular sit-down breaks. Too bad I'm not Catholic - kneeling would have been easier. ;-)

DarcKnyt said...

"Getting there" sounds like a terrific response. No lying involved and yet, no phony "I'm fine" either. Nice. I like it.

I'm still praying for you Spark. I know how you must feel, and I'm hoping to "get there" too.

Pixiebaby said...

This is a great post Spark. I love your response...getting there. I think I'll borrow that from you because I get tired of telling people that I feel awful and definitely do not want to lie and say that I'm fine. Those two little words of yours are perfect! I am glad that you are figuring out what works for you and what doesn't. That's really important with this illness. I was also really struck by your comment about the three week's TRUE! I never really thought about it, but after reading what you said I sat here astonished by it. From here on out, I'll have to keep tabs on that one for myself. Hopefully you'll be up for a good patch soon. You sure deserve one.

LL Cool Joe said...

I really hope the diary helps. I've noticed the change in you from when I first started reading your blog. You are a real party animal who loves to be out having fun, and to feel that an illness is robbing you of that enjoyment must be so hard. My thoughts are with you.