Back on the roller coaster...

I had this grand plan when I finally logged back onto Phoenix Rising and other sites in May after about nine months that I was going to start blogging regularly, and keep a written record to track my progress. Remitting can be such a one step forward, two steps back process, sometimes two steps forward, one step back. Why is it that hard to gather my thoughts together and write down what happens? The symptoms just blur together sometimes.

It was a huge step forward, and a very happy one, to come out of regular daily bouts of PEM to none, overnight. Necessity had put me job-hunting once again in March, and it seemed there was no way on earth I could do something like go back to work. What a nightmare. I would drag myself to the employment center about noon, look up leads for an hour, maybe two... then drag myself home and just go to sleep. There was no way I could handle working if I couldn't even handle a couple of hours of the job search.

The change was sudden and came overnight. I had been using an herbal protocol that supports the adrenal glands starting in June 2011, with no changes except that I had weaned off all meds and had the same functional level. Results can take many months to show up, if not a couple of years.
Sometime in March while dragging myself out the door, a day came that I was at the employment center for hours without noticing the time going by. Then a day came where I planned careful pacing to get to a job interview, and found myself energetic enough to stop and do a little needed shopping afterwards. By the time a job surfaced, I was on cloud nine, so happy and excited that this was really happening for me. I had enough energy to do this!

This should be about three different blogs, so many little pieces and thoughts. Hasn't happened.

The first five weeks of work (four hours a day) was sheer heaven. I think I must have been living on adrenaline and happiness. Then I caught a cold, which happens if I have a night of poor sleep, don't eat quite right, and get too cold, all which came together on the same day. I was sick for over three weeks, which actually is a huge blessing. It usually lasts three or four months before I can get a handle on it once again. With a job, it becomes walking dead again very quickly.

Derailed again, but the reality check was the best wake-up call I could have had. Time to re-assess and re-evaluate. I was not symptom-free, contrary to anyone's opinion, including my own during those emotionally high weeks. It is easy to get into the groove of management and forget you are managing something. It does not just happen. I went over the whole list and history of symptoms once again. Sleep management? Check. Immune supplements? Check. Water filters? Check. Air filters? Check. On and on it went, checking supplement intake, asking myself a lot of questions about where I stood at present. Was it time to ramp up iodine therapy? Was it time to start another round of female hormone adaptogenic herbs? Big YES. Was it time to look at phytoestrogen to combat xeno-estrogens in the environment again? Yes. What about newly emerging allergies, like the dog and cat in the house where I was staying, something I'd never reacted to before?

It was an emotional bummer in many ways to see myself needing so much still. It would be nice to be more matter-of-fact about it, but that is hard to do when you are sorting out six sets of symptoms, any one of which would send a "normal" person to bed for a week. Of course, it is emotional. Highly so. The best thing I did at that point while still sick with a cold and a related, temporary asthmatic condition was to cut myself a lot of slack and start listing all the good things happening. The next best thing I did was to begin strategizing again for long-term maintenance. This feels like unblazed territory, figuring out how to keep an income going for myself while continuing to manage a set of symptoms daily.

To be continued... strategies and coping, and back on the plateau for now.

Comments

Yes.. this illness isnt only about management but also "long term management" plans. Even if one has things fully under "management" with normal day by day, you need to be also consider those times where one may get sick with a cold etc and hence may end up ME/CFS crashing a bit again. This may involve making sure that your work is flexiable a bit.. in those occassions so that you can take some time off eg at the start of a cold before you start to even crash. Be super cautious at such times if your body is even a little under par.

Never ever think you dont need to watch out and take action at such times. That is the mistake I made. I had a few year remission (I actually got out of the point where I stopped needing to even do the management stuff) but one day got sick with a cold and due to being well for 2 years or so.. had ME/CFS right out of my mind, so did the normal persons thing and went to work a little sick.. only to them to crash back into the whole ME/CFS again and then not recover again.

This illness in those who recover.. just is like sitting there like a time bomb which can go off at any time again.

Take care.. no matter how well you are going.. if you dont take care you may find yourself right back from where you started.
 
Thanks for the comments, Tania, I always appreciate your viewpoint and insight. The time bomb analogy is perfect. You end up on your guard all the time... except, apparently, when a big piece moves into place. Somehow, some way, this is going to move to Plan B -- long-term sustainable, second option for income well in place, and retirement monies moving. Pipe dream? We shall see.

This is probably the fourth "remitting" cycle I have experienced. Didn't recognize the other three at all.
 
You show incredible strength and determination here. Good for you.
It has taken me a long time to accept the windows of little remissions for what they are and not go into activity overdrive, kidding myself this is it and I'm better now.
When people like you blog about this in the way you do, it is a great way to encourage the rest of us and help those who are getting to grips with the challenges not to make the same mistakes I did.
So thank you.
 
"Then I caught a cold, which happens if I have a night of poor sleep, don't eat quite right, and get too cold, all which came together on the same day. "
Wow! This is exactly what happens with me! When I have especially those two things together, a night of poor sleep, and then get too cold, I get the worst PENE. You hear all the time about how either overexerting (past anaerobic threshold, or cumulatively over energy envelope) leads to PENE. Overexerting pushes me into PENE, for certain, however, to miss any of my extremely long sleep requirement, as in if I have to get up with an alarm for an appointment, will do it with no exertion at all. It also clearly lowers the threshold for how easy it is to overexert drastically for the day or days that I am on "low sleep." And if I get too cold, as in sit in a freezing doctor's office too long without my down throws and gloves and head wrap, I'm down for sure.
 

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