A touching and true story of ME sufferer Dawn Symons from being diagnosed to recovering.
When did you first get diagnosed?
I wasn’t diagnosed with ME until 2012, but I’ve had ME since I was in my 20’s, so I’ve had it for about 34 years.
And what was it like when you first got your diagnosis? How did that feel?
I felt relieved because I finally had a label for what I was experiencing. Until that point, I experienced a lot of judgment from people for being lazy and hypochondriac, and this wasn’t the case. Finally, having a diagnosis meant that what I was experiencing was real.
Can you tell us your experience of ME?
My experience has changed depending on how severe my condition is. At its worst point, I could hardly even roll over in bed. I was bed bound for around 18 months. Things slowly got better during my recovery. Some days were better than others. I had many setbacks. I still experience symptoms of ME now, I am now able to work, but I have to rearrange a lot of things in my life to allow that to happen. At the moment, I am able to work around 4 hours per day and manage a massage studio in Truro, Cornwall, helping many clients with a whole range of issues.
So at its worst, would this be considered a severe level of CFS?
Yes, I was classed as severe at my rock bottom. It’s a bit like getting up and trying to run a marathon. You hit a wall. And it can be a self-fulfilling prophecy because your body has become so weak, and then you try to do something, and you feel worse, and the symptoms that you are experiencing with the muscle pain, with the weakness, with the extreme fatigue. I wonder if that’s to do with the condition itself or because there is a weakness in the body. Although I was classed as severe, there are still people who have it worse than me. I’ve seen people bedridden for long periods and in hospital for months.
When you hit rock bottom, was that when you got the diagnosis?
No, it was after the diagnosis because I got no help. There was no help, there was no support, and at the time, I felt there was no hope. The doctor sent me off to see a Chronic Fatigue Specialist who ran through all of the tests to confirm that I had Chronic Fatigue, and that was pretty much it. And then I was on my own. This is the reason I created First Aid For Stress. It provides support and a clear process for recovery as well as managing symptoms and life. This is something I didn’t have.
Did/ do you take medication for CFS / ME?
I am so sensitive to medications. I can take a dose that, for other people, would do nothing, but for me, it absolutely floors me. Many people who are suffering are very fragile and very sensitive, and we have to learn to appreciate that that’s okay. I realised that I had to change my focus. The focus that I had in the past had to change. It is just not possible to do many of the same activities that I had done in the past.
What did you realise in your recovery journey that you put in the First Aid For Stress Program?
Dealing with stress is very important. Unless you deal with the worry and fear and come to accept the fact that you have Chronic Fatigue, you will not be able to recover.
The worst thing for your energy levels is your mind chattering, your mental state. It’s so important to learn to be kinder to yourself. To do some meditation, one of the core parts of my work is the meditations that I’ve recorded which are freely available to everyone.
Listening to the recording repeatedly begins to rewire the brain. I don’t even know how many times I’ve listened to my own meditation. I almost had to hypnotise myself into believing it because every time I stepped out of my comfort zone, I was knocked back down again. I offer this meditation in the introduction. If someone were to listen to this meditation and only do this, it would transform them because it would help them with the mental chatter that comes with chronic fatigue syndrome.
It will bring peace of mind to an otherwise anxious and low state. It’s about getting into that still state and seeing that the experience that we are having isn’t the sum of what we are. There is a place that’s full of energy. There is a place that has no pain, the more that we can marinade in that space, the more that we can begin to be open to the possibility that we can experience something different.
What do you say to people who say a program won’t help them because everyone with ME / CFS experiences different symptoms and has different triggers?
I agree with them. That is exactly right. Everyone has had a different experience. That is why this program is multifaceted. That’s why it covers so much, the healing wheel and the progress check and the implementation of the smallest things. That’s why people pick their own focus for their recovery. Once they start adding those small activities into their schedule, they start to see the change.
BIO: Dawn Symons from First Aid For Stress and Maga Therapy. Dawn has lectured and written widely, specialising in tension & stress reduction irrespective of the cause, applying the latest scientific thinking to provide logical, effective & progressive results. She facilitates the First Aid For Stress Program for people suffering from ME / CFS / Anxiety / Depression and Chronic Illness.