In May 2018 I celebrated the 10 year anniversary of the start of a significant recovery from severe Chronic Fatigue Syndrome. Before then, I had been bedbound for 14 years.
I am not sure if recovery is exactly the right word so I will explain a little more and let you decide for yourself.
If circumstances were such that I could not pace my energy in any
way, would I become bedbound once again?
Yes, I probably would.
Since I rely on managing ME/CFS through pacing and various self healing methods in order to function at the level I do, you might call it an improvement rather than a recovery.
Whatever word you use, I have not been bedbound now for over 10 years. That
is a beautiful thing to be able to say. :-) and enough for me to call it recovery from the severe form of the chronic illness ME/CFS.
For the first two years after my significant recovery, I had rather ideal conditions for healing.
With an improvement in health, the care allocated
became sufficient for the first time. It included enough care to take me on outings, on trips to get my shopping and to drop me off to start up my social life.
I made new friends who were wonderful at giving me lifts to lovely poetry events, to an NLP class, and to church.
I lived on my own so I had no one to adapt around.
I celebrated every little new thing I could do.
I could plan an event knowing that I would be able to rest well beforehand.
I could afford to experiment with doing more, knowing that I could rest well afterwards.
I could cancel events with no one to disappoint and no one to complain.
on, my journey with ME/CFS got a little more bumpy again and my health declined.
These are the highlights/low lights ;-) of some of the bumps:
As a result of the above and other factors, my health is not at the same level
as at its best since recovery from severe Chronic Fatigue Syndrome.
My walking, stamina, and my ability to use my muscles to type etc are at a lower level than at their best since recovery. They have stayed at a lower level for a while now.
the last few years and especially the last few months, circumstances have
Finances have miraculously begun to look more hopeful.
The housing situation has hopefully been resolved.
And a significant relationship has been
transformed :-) to one that supports me in living a big life at my current level of health. This is something new for me and truly wonderful.
I am living the highest quality of life I have in a long time. I am hoping that circumstances will stay improved or improve further and I am hopeful that improvements in my health will follow.
Either way, my health is more stable which means that I can manage my health better and feel more healthy.
most respects what I call my recovery from severe Chronic Fatigue Syndrome is probably
more accurately called an improvement. I have always needed to pace my
One of the recovery bits is the headaches. They were constant for about 17 years. Now I very rarely get a headache.
Also the chronic pain left at the time of recovery and has not returned.
This is in part because my level of activity is now more within the envelope of what I can safely do. Either way, my quality of life is so much higher from not living with chronic pain.
I have never gone back to being bedbound for even one entire day.
I have never returned to being super duper intolerant to common perfumes (I am still intolerant ;-) but hey I can go to public places).
I have continued to be able to talk, though I definitely need a lot of silence.
When things are tough – and they have been quite frequently – I remind myself of how very far I am from the life I used to live.
The increase in quality of life from bedbound to independent living is a wondrous thing.
the month of my 10 years anniversary, I celebrate my delightful freedom.
I also celebrate the perseverance and determination that keeps all of those (you?) with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis going through each day.
Whether bedbound, housebound, or out and about. You have my admiration.
I hope that if you are living with severe CFS, you are encouraged to keep the door open on hope for better health.
I hope my story helps you to be gentle on yourself if your circumstances make it difficult to pace yourself.
And, above all, I encourage you to do your best to love and accept yourself as you
are right now.
In sickness or in health, you are enough.
If you become more ill or stay at the same level of health, you are enough.
If your health improves, you are enough.
If you get well, you are enough.
You are enough!
Happy walking anniversary to me!
Some of you who follow my other website will have seen this video already.
It was taken in 2010. I went back to where I used to live with severe Chronic Fatigue Syndrome. I could never walk up the stairs back then. So I walked up the stairs for the first time. Joy!
PS. Please note I am now 8 years older than in this video ;-)
The photograph at the top of the page is taken this month. Same coat, different hat!
A video of me going back to where I lived with severe Chronic Fatigue Syndrome and walking up the stairs for the first time :-)