My recovery from severe Chronic Fatigue Syndrome -
Did it last?

Ten Year Anniversary of Walking

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.

10 years after improvement / recovery from severe chronic fatigue syndrome.

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If circumstances were such that I could not pace my energy in any way, would I become bedbound once again?
Yes, I think I 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.

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The delightful early days of recovery from severe Chronic Fatigue Syndrome

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.

Did my recovery from severe Chronic Fatigue Syndrome last?

Later 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:

  • After 14 years bedbound, not long after regaining independent living and giving up care, I was refused benefits and took the benefit providers to tribunal.
    I didn't get more ill from the stress of the 6 months of digging into savings while waiting for a result, but I did push my activity prior to the tribunal so they wouldn't see me at my unrepresentative best. Events afterwards meant I was not able to rest and recover.
  • I was sharing my car with a friend to manage finances and in exchange for receiving lifts when not well enough to drive. (I still can't quite believe that I can drive again - quite strange for someone who couldn't co ordinate her limbs for so long!)
    The friend proved to be unreliable. On a number of occasions in quite close proximity they did not turn up to collect me. I was forced to stand or walk to an extent which led to an increase in symptoms and a reduction in health.
  • I am a writer and a poet. I took part in a series of poetry performances. Unforeseen factors meant that I was not well enough to perform at the time of some of the performances, but as I was committed to doing so, I did so anyway.
  • In the first two years, I made it my job to get well. Since being refused benefits (they were given back eventually) it works to reduce stress for me to have a long term plan to earn a passive income. This means I work on my books and websites. I find it a challenge with some tasks to break them up into suitably small chunks of activity. I don't rest as much as I did in the early days. (Note to self - 'Take more breaks!')
  • The landlord needed the property back and I had to move house.
    I found it difficult to cultivate the relaxation response or pace activity at a time when I was looking for a place. 

    I had short notice to find somewhere, I was restricted by needing ground floor accommodation away from mobile phone masts. Most landlords don't take tenants on benefits. And I couldn’t afford most of the rents.
  • The next year I had to move again. It was for a lovely reason this time, but still I found myself unable to pace activity. It is difficult to move house when you can't move freely!
  • I could not afford accommodation on my own. I was lucky enough to find someone to share with me.
    When sharing with this person, I did not find it possible to manage the illness in the way I did when living on my own.

As a result of the above and other factors, my health is not 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.

Hope for healing ME/CFS- looking forwards

In the last few years and especially the last few months, circumstances have improved.
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 bigger 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.

  I can manage my health better and  feel more healthy.

Recovery from Severe CFS or improvement?

In most respects what I call my recovery from severe Chronic Fatigue Syndrome is more accurately called an improvement.

But 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.
But whatever the reason , my quality of life is so much higher from not living with constant 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.

Celebration and admiration

In the month of my 10 years anniversary, I celebrate my delightful freedom.

I also celebrate the perseverance and determination that keeps all of those with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis going through each day. Perhaps that is you.
Whether bedbound, housebound, or out and about, if you are living life with CFS/ME, 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.

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 already seen the video below.
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 :-)

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