Recovered?

When I was in the first stages of my PVF/ME/CFS I can remember having an internet discussion with another sufferer about recovery.  Neither of us knew how far we would recover or how long it would take, but we both desperately wanted to believe it was possible.  I remember thinking that any improvement in my health would improve my quality of life, and I have experienced that all the way through my recovery.

When I was reliably able to pick my kids up from school on my electric bike it was great.  When I was able to shower regularly it was fantastic.  When I could cook meals for my family it was marvellous.  When I started this blog it was wonderful,  when I was able to walk to the end of my road it was amazing. When I was able to go to go on a cycle ride with my family it was fabulous.

Last summer I made some huge improvements, and anyone looking at me would not have known I had ME/CFS.  However, I still felt it was there, lurking.  I still had to be careful about my activity levels, plan activities, say no to a few things and disappear for rests.   This was still the case at Christmas, when I wrote that I was prioritising activities and had declined some invitations.

However, since early in the new year I feel something has shifted.  Now I feel fully recovered.  I don’t feel I have to work around my illness.  I don’t think about it.  I just get on with doing what I want to do, when I want to do it.

I do still take care of myself.  The last 3 years have taught me that’s important.  I’m still doing my Miracle Morning, and I still sometimes rest during the day if I have a busy evening ahead, but that’s because it’s sensible, not because I can’t cope with the evening without resting in the day.

This week is half term and I’ve been having fun with my family.  First was a busy weekend with my siblings and their families, then a day at the Tower of London (lots of standing and walking).  In the lovely February sunshine I’ve done some gardening and played basketball with my son.  Two friends saw me on the basketball court in our village and they looked surprised, but I knew I could run around with my son, come home and carry on with the rest of my day.  No PEM, just a few aches from playing basketball for the first time in years!

So for me that’s what recovery looks like.  It’s feeling healthy again, and just getting on with life.  It didn’t happen overnight, in fact it snuck up me so gradually that I can’t tell you exactly when it happened, but I can recognise the difference.  I’m recovered.  I believe it’s permanent, but only time will tell if I’m right about that.

If you’re in the early stages of the illness, focus on resting and pacing and when you reduce your activity enough you will stabilise, and from there you can improve.  If you’re in the later stages of recovery then keep doing what you’re doing, and tweak when necessary until you reach 100% recovered.

Recovery is possible.

 

 

7 responses to “Recovered?

  1. Hi,

    I have being following your blog for awhile, just nearly one year into CFS and trying a holistic method to get back some good health. I have made some good strides but it’s not a lovely linear curve. Your story is really inspiring and I want to say thanks so much because alot you read on the internet is very negative. I truely believe I will get over this and your story helps to enforce that belief.

    Sharon.

    • Thanks Sharon,

      Comments like yours are the reason I’m motivated to write this blog. I want to share what worked for me, and give some hope of recovery. I spent a long time googling when I was first ill, and apart from the excellent postviralfatigue.me.uk site I found very little positive information. Best wishes with your own recovery. Mine has taken 3 years, and has not been linear either, but learning from my setbacks was part of my recovery.

  2. Hello,

    I hate to say this, as it might be unfair, but I’m very suspicious of your entire story for several reasons:

    1. The name of your blog “Eat4Me”. If you had ME, then why would you name it “Eat for ME”, unless that was all along part of your plan to sell people on some sort of eating plan (the SANE plan)?

    2. Your “crash” doesn’t sound anything at all like a typical ME crash. Yes, you couldn’t pick up your kids from school, but it didn’t sound very severe.

    3. And then of course, the promotion of psychological “remedies” for a physiological disease. Yes, of course there are some mind-body connections, but if one is severely immune compromised, ‘self-talk’ isn’t going to fix that. It may help in a mild sort of way, but it won’t result in recovery.

    It just seems like this whole blog was set up to sell these ideas, etc., at the end. But if I’m wrong, then I apologize in advance, and wish you the best.

    • Hi Kelly,

      In answer to your points:

      1. I chose the name of my blog because I planned to write about how diet was important to my recovery, and I have lots of information on here about that. However, once I started writing I realised I also wanted to include other lifestyle changes that have helped me, and some of my experience with the illness/recovery.

      2. I believe my crash was a pretty typical ME crash, but there are different ways to get ME. Mine was from a virus and was a sudden onset. Some people have gradual onsets, and the cause can be different e.g. a traumatic event, car crash etc. Perhaps my crash was different to yours, that doesn’t mean either of us doesn’t/didn’t have ME. I was virtually bed bound for a short while at the start of my illness, then mostly housebound for several months. I only became able to go out because we purchased an electric bike and I was given a wheelchair by a friend. I was officially diagnosed with ME, by a specialist doctor following the CDC criteria and the more stringent Canada working case definition.

      3. I write this blog to share what has helped me, so that hopefully it can help other people. I am very clear that I have no medical training, I am just someone who had ME and has used the activities I write about to help me recover. When I first discovered the Optimum Health CLinic and that they recommended nutrition and psychological techniques such as the stop technique, meditation and hypnosis to recover I too was disbelieving that positive self-talk and meditation would help. However, I didn’t find a lot of other options to try, so I tried them, and they worked for me. If you’ve tried them and they haven’t worked for you, then I’m sorry. I am sharing what has worked for me. You are free to choose to use this information or ignore it.

      I am most definitely not trying to sell anything on this blog. I am sharing what has worked for me, in the hope that it will be of use to others. I deliberately do not use affiliate links, even when I am providing links to products/services that I may be able to make money from, because my motivation for this blog is not to make money, but to try and share information to help others.

      Best wishes

      Sarah

  3. Just to confirm to anyone for whom Kelly’s post has raised doubts, I got sick about the same time as Sarah and communicated with her almost daily on the website to which she refers and a FB group for about 2 years. (This last year I’ve been back at work so its been less frequent). I can confirm that she has suffered all of the disadvantages of ME – missing out on her children’s events, social gatherings, work, family activities and many more. She’s suffered many and varied symptoms that she describes on her blog.

    Sarah is totally genuine and her commitment to recovery has been inspirational to me and I hope to any sufferers earlier in the journey.

    You can get better. Sarah has and so have I.

  4. Bessie Norris

    I want to thank you for posting your recovery story. I am the mother of a 23 year old that has gone through hell. I still can’t get over the fear that I have. I am afraid she might go backwards. She is no longer bed bound and in pain. She can go for a twenty minute walk, and can read and watch TV. She can take noise and light. I do hope that she continues to improve. This year and a half journey has been so lonely with a lot of fear. I just wish that I could talk to someone who has recovered. Thank you.

    • Thank you Bessie. I hope your daughter continues to improve. I have heard that young people are more likely to make a full recovery, although I don’t know what data there is to back that up. I understand your fear, I feel it to. I don’t want to go back to where I was, and it must be terribly hard to watch your child trying to cope with this illness. Many, many people do recover and it sounds like your daughter is well on her way. There is a book called 50 Recovery Stories from CFS which I found helpful in building my belief in recovery, and also the Optimum Health Clinic’s Secrets to Recovery website, which I paid to access.

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