I was officially diagnosed at the age of 13, although my parents had suspected it for many years before this. I had glandular fever at 18 months old and afterwards I had lots of unexplained joint pain.
I was so young when I started to get symptoms I really don’t remember being completely free of them. What I do remember is feeling ok between the dreadful joint pain. I loved ballet and was really sporty at school. I can remember feeling like I could do anything. But after exercise, I would suffer horrendous pain and it wasn’t sustainable. I had to give up PE at school at 9 years old in order to maintain attendance for the academic subjects.
On the inside I feel like a really active person – I long to run… I dream about it. I long to move my body freely without paying a price. I guess I miss knowing I can do what I want to without suffering afterwards.
From the age of 13 – 18 I was completely wheelchair bound, and bed bound for a lot of that time. My worst days at that point were pretty horrific. Unrelenting, excruciating pain is what stands out the most. The constant head pain stopped my brain from functioning properly; I couldn’t think about the simplest things. The frustration of not being able to scratch an itch, or turn over in bed as your body felt like it was made of lead, was gut wrenching. This was on top of all the other symptoms; heart palpitations, crushing fatigue, dizziness, loss of temperature control, constant sore throat and flu like feelings. I was extremely lucky to make a fairly good recovery but have had several relapses since this time when I’ve been back in this position. In between the relapses, it’s been a matter of managing my symptoms and energy and trying not to overdo things, which would always make things worse.
My best days would be the days where I control the M.E. rather than having it control me. I can feel now whether I’m on an upward or downward spiral and I can be pretty sure of my limitations. I know what state I will be in if I push these limits. When I can organise my time and plan my energy and rest, the feeling of control is very positive.
A typical day is all about managing my symptoms and energy levels. There are always some symptoms including pain, heart palpitations, headaches, swelling, ‘brain fog’ and stiffness. By managing what I do and how I do it, I can reduce these symptoms and ensure I can cope during the next day. I have to plan ahead at all times to make sure I do not over-exert and have enough time to recover from any activities. Now I have a young and wonderful daughter to look after, this is a much harder job, but all the more reason to get the balance right.
I would most like the world to have a small amount of understanding. First, it is important that people understand that not all people suffering from these conditions show visible signs. Depending on my level of suffering, I can cover it up. This doesn’t mean that I am not in pain, or that I won’t be in pain later. It is also important that the world understands that the conditions do not exist solely in the head of the sufferers. It is not caused by depression, although the extended suffered can leave you feeling depressed. In fact, some of the times during which I have been at my worst physically have been during some of the happiest periods of my life.
My husband sometimes knows my limits better than I do. I think this is because I don’t like to admit I have limits and I can get carried away. Most people I’ve met with a similar condition seem to have the same inner desire to be active.
This dedication is part of Mike’s Camino de Santiago walk.
Read why Mike is walking 255 km for ME/CFS/Fibromyalgia.
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