Cheryl Clarke contacted me and asked if I would post Dawn’s Symons experience with ME/CFS. Without question, I knew many of my readers are interested in this topic. Enjoy.
Dawn’s experience with ME / CFS and her recovery story
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?
Relief. I already knew there was something going on, and I was just glad that I finally had a diagnosis because a lot of people call people who have Chronic Fatigue or ME hypochondriacs. They call them lazy. I never met anybody who has experienced ME who is either of those things.
They usually have class-A personality types; they are driven and don’t take time off when they are poorly. Instead, they keep going and going, which chips away at the body and reduces the immunity, and they get an infection from which they don’t recover.
Can you tell us your experience of ME?
I couldn’t walk more than about 30 steps for about 18 months. I was so insular and isolated I couldn’t physically have a conversation because I didn’t have enough energy. And my mental capacity was greatly reduced because I had such severe brain fog.
It was difficult to think about what I wanted to say, and if somebody asked me a question, it was difficult to reply because, by the time I started thinking about the response, I had forgotten the question. So on top of everything, I felt stupid.
I managed to work literally for a couple of hours a week. I lost everything, including my home. And then obviously you get depressed with it, going through that experience.
So I was very low. Not so much anxious, although towards the end of it, I was getting very anxious because I’d lost all of my savings, and I could see that I was going to end up homeless, which I did.
Then you’ve got a mental battle going on as well. Why can’t I recover, why can’t somebody help me, why aren’t the doctors helping, and why are there no pills for this?
And how would you explain it to someone who has no idea what ME /CFS is?
If I was to sum up ME / CFS in one hit, it would be like an old phone that you charge up, but it only holds the charge for two hours, and you’ve got to leave it on charge all the time, and that’s what having ME is like, you can’t recharge your battery. You don’t know what’s going to drain it. There is sometimes very little that you can physically do, and you’re just drained.
The more you try and do, the more frustrated you get, and then you get even more drained. The thing that drains energy the most is depression and anxiety. It puts a huge amount of stress on the body and mind.
This is why I think the bottom line is to get the mental state in a more accepting state and then start adding little bits and pieces of other activities which might help from the healing wheel in the First Aid For Stress program and trialing what works.
So do you recommend different levels of activity depending on the severity of your CFS?
It’s a case of trial and error. Trying and then seeing what the effects are. Recovery is not going to come about quickly. It’s taken me a long time to get to where I am now. And at this moment, I am still battling. I’m battling with menopause as well as Chronic Fatigue. Every single case is different because each person may also have multiple health issues to contend with, not just Chronic Fatigue Syndrome.
Did/ do you take medication for CFS / ME?
There is no pill for Chronic Fatigue Syndrome. There are lots of medications suggested, but they come with a lot of side effects, and I am very sensitive to medication, so I didn’t want to take them. I’ve also come to realize that there can’t be one pill for everyone because it’s so multifaceted. There are so many things that are having an effect on the body and the mind that has resulted in the symptoms.
This is the reason calming the mind down is so important. Particularly if you are pressuring yourself. There are so many worries that come with Chronic Fatigue Syndrome, such as “I’ve got to get better because I’m going to lose my job”, “I’ve got to get better because I have to look after my children”, “I’ve got to get better because I’m going to lose my home”. And that level of pressure is too much.
What did you realize in your recovery journey that is in the First Aid For Stress Program?
Unless you deal with the worry and fear and come to accept the fact that you have Chronic Fatigue Syndrome, you will not be able to recover. It’s like having ten spoons in the morning, and each spoon is for doing something, and that doing something could be as much as rolling over, and that takes two spoons worth of energy. Then you need the toilet, and that takes three spoons. Suddenly you’re down to five. Cooking a meal for yourself, game over.
And you live in that awful state for a very long time. And 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 that recording repeatedly begins to rewire the brain.
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.