Thanks for the update, Monsieur Beaver! Wish you were seeing a more solid improvement. Although mowing the lawn totally wowed me. Will you let us know what you decide about continuing abx treatment?
Things you make me contemplate:
- The up-and-down-ness. Hate this.
- The lose-lose of treatment. Cooties are slowly killing us. Abx will damage us in other ways.
- How tough it is to maintain perspective. You've convinced me to start a journal. Now (thank you!).
If it helps to know you have company, I am walking in your footsteps. A bare week into abx treatment for long undiagnosed Lyme and cos. Full of questions and confusion, but pushing (bumbling!) forward.
Hope you'll keep posting your experiences, M Beave...
Thanks Creekee,
My sixth month on Abx report is very positive.
I have stabilised at a higher level of functioning for the last month. I haven't been this well, this long, for years.
I can stand up all day and do chores. No more seeking out chairs all the time.
The lack of oxygen feeling, ( Orthostatic intolerance?) where i would have to sit down to recover, is almost completely gone.
I have moderate amounts of energy now which i can manage evenly if i stay within a sensible envelope.
I must have spent half of the last four years sat in a chair, beanbag, bed which seriously interfered with my plans...so to be able to get a few things done is great.
My cognitive symptoms have improved. I am able to put a little more effort into mental tasks. (For me, this is manly art/painting).
My nervous system is a little more resilient around people and social occasions. In the event that i do overdo myself in socializing i am able to bounce back quicker.
My gut feels more robust. I am hardly aware of it if i stick to a good diet. I am able to tolerate the odd coffee now and again.
I am actually considering graded exercise therapy to gradually adjust my body back to fitness. I think i am finally within the range of that biopsychosocial Holy Grail!
I could do it myself but going through official channels may give me access to free treatment, and left to my own devices i tend to be erratic in effort output.
Residual symptoms are - lots of strange tight muscles, mainly in my neck,shoulders and chest which lead to mild migraine like headaches every fourth day. It's not severe, but does piss me off, and i generally lose a day in head fogginess.
Muscle tightness sometimes makes sleep difficult.
Poor memory. Even though my all round cognitive ability has improved.
Still have a low level wired, tense mind and body most of the time, though there have been improvements in this area also. My all time most hated symptom. The one that affects rest & relaxation, sex, enjoyment of sensual pleasures.
I can't speak of PEM because i haven't overdone my exercise capacity for quite a while. This is good news because it used to happen all the time without much provocation.
The bad news is if i keep improving like this i will eventually have to go back to work and lose all the secondary gains i have fought so hard to obtain in the last four years
I realize it could all come down like a pack of cards, but really i feel like i am on more stable ground now and i'm confident of improving slowly. Even if i don't reach full recovery I want more and more functioning so i can better deal with the world out there.
