“No. No, no, no, no, no!! I can’t be going backwards again. I was going so well. Getting so strong. On the way to recovery. What’s happening?! Why am I wiped out again? It can’t be. It can’t be a relapse. Can it?!”
It certainly sounds familiar to me.
Twenty-one years of the ups and downs of CFS / ME – that familiar hope/disappointment cycle.
And here I am again.
Well, I truly don’t think it’s a full-on relapse, but four days of extreme adrenal fatigue that I have not had for eight months just sends me into panic mode.
I know panicking is pointless.
I know resistance is futile (as the Borg so aptly put it – sorry, when all else fails reference Star Trek! 😉
There’s just always an adjustment period to the downward part of the CFS roller-coaster.
My adjustment time gets shorter each time for me, but it’s still there.
It’s only my fourth day of that “wipe-out” adrenal fatigue that every person with CFS would be so familiar with.
There’s every chance I will pick up over the next few days and continue on with my recovery that I have felt occurring since starting treatment for pyroluria in September 2012.
Last time it only lasted four days before I started feeling more “normal”.
My naturopath says her wonder machine (MY name for it) tells her I have an infection, but otherwise I’m very strong. Oh, I hope!!)
For six months I’ve strengthened in the gym (and loved it!), been supplementing with the zinc, B6 and B3 (and a few other things) that I can’t hold in my system (due to pyroluria), and I’ve noticed some great gradual improvements in my recovery and stamina.
I’ve even been able to skip my afternoon naps from time to time lately after 18 years of having them.
I really thought I had passed the point of the adrenal / CFS / glandular fever fatigue that is one of the keystones of my CFS experience.
I’d come to actually TRUST my body again.
What a lovely feeling that was!
Trusting our body while living with CFS is usually an oxymoron.
One of the most disempowering aspects of this unpredictable illness is the constant uncertainty and, yes, unpredictability.
From one day to the next – often one hour to the next – we don’t know how we will feel.
Planning activities, outings or even a shower become sources of anxiety and stress.
How can we possibly know if we’ll be well enough in a week’s time to go to a family dinner?
At certain periods I know I have had to forgo such activities completely (although family being so extremely high on my values list, I don’t miss many – even if I sleep on the couch for most of it!!).
But it’s when I have to forgo a shower in the morning because it would wear me out too much to then be able to drive my daughter to school that really tests me out.
How I’ve felt for the last four days is in the latter category (luckily some of it was the weekend and my girl’s been at her Dad’s for most of it).
So what do we do? What do we do when we have a setback like this?
Well I can only say what I do.
After the initial feeling of dread and anxiety that comes with waking with heavy arms (a sure sign. Is that common?!) and feeling totally unrested after 10 hours sleep, I panic for a few minutes.
Then I usually get it under control enough to convince myself it probably won’t be that bad and is only temporary.
Then I say to myself (in this order):
- OK. It is as it is. Now what? (ie. Accept it!)
- Don’t worry about what you CAN’T control (ie. your body), look at what you CAN control right now
- You may not be able to control your body, but you CAN control your thoughts. Make them serve you!
- What CAN you do right now that will support you and your mental and physical health? (eg. take supplements, eat good food, drink lots of water, sleep/rest, have a bath, call a friend/family member (energy permitting), listen to a podcast/music/radio in bed to distract you from those pesky and completely unproductive “awfulizing”, catastrophizing thoughts).
- Let go of the fear and just TRUST! Trust your body knows how to heal itself. Trust you will cope no matter what (cos god knows you have before!). Trust it’s all OK. Trust the process of life.
- Rinse and repeat (over and over and over again until bedtime at night … and then start again the next day if things haven’t improved!)
It’s so easy to let despair and fear take hold in relapse periods – or just everyday crappy CFS / ME if you have never recovered enough to have a relapse yet.
But both just lead to further complications of depression and anxiety.
If you can avoid those it makes life with CFS a lot easier to handle.
The above 6 steps I use when facing a downturn in the CFS / ME symptoms (like a downturn in the stock market of my body ;-)), have been the difference between me falling into depression or not over the past few years.
In earlier times I didn’t have those simple tools (of if I did, I didn’t utilise them), so I went to dear, old, dark depression city.
It’s a destination I would rather never return to if I can help it. AND I can help it!
And so, I lay here in bed and LET GO AND TRUST.
I have no strong religious beliefs but do believe in an energy that is beyond our current human comprehension.
I also believe we have an incredible power within our mind and our body to heal ourselves if we can only learn to tap into it.
For 21 years I’ve called on that power with mixed success. Maybe this time the force will be with me!! (I know – a Star Trek AND a Star Wars reference in one blog!! :-))
PS. If you want to read a really well-written CFS blog by someone with really severe CFS / ME, but who still manages to write with incredible humour and humility, check out No Poster Girl. I love the way Jocelyn writes. It’s so colourful, intelligent, humorous and courageous. She inspires me every time I read a post. I’m sure she’d be happy to be in my position at the moment – actually having felt a lot better for 8 months, despite my current blip.