My first symptom that something was seriously wrong (I have Fibromyalgia and ME/CFS) was the feeling that my legs were incredibly heavy.
Not just heavy, really, but “are you sure they haven’t turned into concrete?” type heavy!
This lead to me, whenever I walked down a corridor, for some reason to lean to one side until I hit the wall, literally.
It affected my brain somehow, these concrete legs, and I had absolutely no control over where I was going. For the life of me I could not walk straight, and you can only use the excuse “You know, I should really stop drinking at work!” so many times.
It would also happen suddenly. I’d be walking past a student’s desk (my last job was as a teacher) then suddenly head straight for it and…bang!
My legs felt so heavy when I sat down that the relief was palpable, but then slowly, over a few minutes, they would feel even heavier…massively heavy in fact so that I was scared the chair would surely break and then I would fall through the floor and keep on falling until I hit something heavier than my legs. I had no idea what that was and very little ambition to find out!
Lying in bed at night it was the same. I was constantly amazed that the bed wouldn’t collapse under their enormous weight.
Obviously walking itself, and getting up to walk, was massively difficult and I could hardly move forward. One of the simplest things we do in life, walking, we do not even think about it and yet it was so incredibly difficult because my legs, I was convinced, were made of concrete.
They are slightly better now, but not much. For example at present I’m lying in bed using my phone to write this (apologies if it shows!) and my legs feel so heavy I just want to stay in bed forever. Please don’t make me feel the pain of getting up!!
However I also want to spend some time with the love of my life (no my wife, not a dog!) so shortly I am going to have to stand up and I am dreading that moment.
One of the worse things about this illness and in particular it’s symptoms is that you cannot see them. Therefore people had no idea I feel like I am fighting to stay alive. Instead I would get comments like “You’re looking a lot better”, and “You look so healthy, you must be glad that’s over!”
No, not really, I feel so heavy and dizzy and have a huge headache and I am seriously considering whether I can continue working.
I would arrive home after work and would have to literally wait for my wife to come to my car and help pull me up and out of it, such was the feeling of massive exhaustion and heaviness. If she didn’t hear me come home I would ring her from the car, which was in the garage, to come and help me get up. Pathetic, isn’t it? And I felt pathetic, and useless, and a burden unable to contribute in any way to our home or, indeed, contribute at work.
It all became too much for me, even when I cut my hours down to just one day a week. I wouldn’t have recovered from that one day until it was upon me again. Yes, it takes me that long to recover from ‘activity’, such as working, even if I sat down all day and only got up when I had too.
My lunch became protein drinks because I didn’t have the energy to chew.
So eventually I had to give up work, which financially was terrifying and also filled me with dread and massive guilt.
Soon after this we sold our dream home and moved further away from the city (we received very little from the sale of our home, unfortunately). Fortunately my superannuation insurance policies paid out my Total and Permanent Disability (TPD) claims and are also paying me a couple of years in income protection payments. So we can save, hopefully, a little bit of money to live off of for about thirty years. And when I say little I mean it, as it will be less than a years income and will have to last whilst both of us are not working. I think the word I am looking for is ‘tenuous’.
The insurance companies had a waiting period of three months (for the income protection payments) so we went into debt. I then decided to do one of the hardest things I have ever done in my life and started a crowd funding campaign for us. It had a target, and vain hope, that we would get enough money to stay in our glorious home. However enough was raised so that we could live until the house sold, and for that we will be forever grateful to those who contributed in our darkest hour.
People do not realise what you feel (myself included, although I am far more aware now and not so quick to judge) and what you go through emotionally in times like these. They think they do and try to be helpful by saying “It’s only bricks and mortar.” Maybe, but it has been our home for nearly 18 years and it is embedded in our hearts and souls.
I must add though, that when the insurance companies paid out my TPD claims we were able to purchase a beautiful home we now both love, with a mortgage but a significantly smaller one, about another fifteen minutes further away from the city. It really is wonderful, and a lot better than moving in with my parents or being homeless, which were our other two choices.
So life has settled now, the dust has fallen after the whirlwind has passed and our sorrow has turned to greatfulness.
Finally, and the purpose of this article (sorry but I am easy distracted….oh look, a bird!…….sorry again.)
I would be interested (if you are a fellow sufferer of these invisible illnesses) if you have, or had, the same symptom of concrete legs?