Getting the CFS/ME diagnosis , for me was a relief.
At least I didn’t have any of those other terrible illnesses that could have come from the same symptoms. I thought it was a brain tumour, my partner thought meningitis. The other thing we both made sure we did not do and that was to ask ‘why me?’. It immediately became ‘well what do I do to recover and then help others!’.
It’s an illness that a change in words can help. You can’t fight it as you don’t have the energy. You can work towards recovering from it a little bit each and every day. Yes you have set backs, just take it as a learning opportunity and check what you did differently. Next time you will know can you take that step or half a step or would today it be better to take it easy on myself.
I’m not kidding you when I say it’s hard work, it really is and you have to learn to listen to your body and its needs.
There will be times when only ‘the cave’ will do. Your place of retreat. Away from all the chores and must do’s in your life.
I love my cave and know it is still there for me on the now rare occasions I need it.
I’m never afraid to ask for time in my cave as I know
I will be better for that space.
There are many CFS and ME symptoms. The main ones for me were
- Fatigue made worse by physical exertion or stress
- activity level decreased, so slowly I didn’t notice at first
- flu, coughs, colds, infections – over and over
- sore throat
- tender and or swollen lymph nodes (check left chest and neck areas)
- yawning, gulping for air as you feel short of breath
- night sweat and or chills
- feeling hot or cold often
- low body temperature
- low pulse and or blood pressure
- dryness of eyes and visionuscle pain
- muscle weakness
- joint pain
- spaced out, a foggy head
- sensitive to light, colour, noise, electricity
- tinnitus – ringing in the ears
- balance problems
- sleep disturbances, unrefreshing, difficulty going to sleep, staying asleep, nightmares.
- feeling fed up and worse
- irritable, over reacting, mood swings
- changes in your vision
- alcohol intolerance (hated that one!)
- craving sweet food and drink
- difficulty thinking clearly, simple maths, simple words
- hard to express ideas
- lack of concentration, losing track, losing things!
- can’t understand what you have read
- difficulty making decisions
- poor judgement – not good when driving.
I noticed these things slowly and if only I’d known more about this illness I could have stopped it earlier.
First the being able to dance for hours went, it became 6 dances a night. Then 3 then none. Then I stopped Pilates as I was so embarrassed about not being able to stand up, still or balance and I got so frustrated with myself.
Doing computer work, had always been a bind, now it was a nightmare.
I had 3 eye tests in a year, nothing wrong. I still couldn’t see clearly. My eye was twitching that much I could barely see out my right one.
I couldn’t concentrate to drive home, I was becoming a danger on the roads.
The weight was going on me. I was craving chocolate and diet drinks to give me a lift, I knew the down was bad too.
If only I’d known that my lymphatic system was closing down and instead of draining the toxins out of me, it was sending them to my brain.
Why had it closed – for me it was because my body was not getting enough thyroxine. That meant the pulse slowed and the body temperature plummeted. I put on weight and got worse.
I wasn’t listening to my body’s cry for help so it attacked me from the inside out by telling me to stop, learn and act on what it needed not on what I thought it needed.
If you have taken time to read through this site then you will begin to see that the illnesses – Thyroid, CFS and vitamin issues – all have similarities. Tiredness is across them, brain fog is across them, sore joints covers them. You need to learn how to differentiate between each layer and act on that strand for a while.
Hope this helps
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