These words have been uttered by my Physiotherapist numerous times, and every time she speaks them I want to give her good news, I want to tell her that things are so much better, in fact they’re so good, I’ve started doing acrobatics for cirque de soleil…but if I did I would be telling porkies and I’m sure she would shoot me down with a look that’s just as painful as the kung fu style moves she does on me.
The truth is I have got better, my Fibromyalgia is a lot better than it was when I first saw her, I’m not bent double in pain anymore, and that has to be a good thing!
The pain seems to have settled somewhat, it’s not got any better but it’s not got any worse. I almost seem to know where I am pain-wise and I know what level of pain I can expect, it’s just that now it’s started to appear more on the right side of my body than ever before just to remind me that said shoulder or foot is still there – thanks, I think.
The fatigue has started to hit too and last weekend I simply had to stop what I was doing and lay down, which kinda reminded me of the time I had swine flu – I was so tired it was almost laughable.
I’ve had a good few days this week though, I have been in pain, but not as much, and I’ve had quite a bit more energy too. When I have good days like this, I tend to do as much work as I can and make the most of it, because things could change at any moment.
I’m not letting this get me down though, it’s just something I have to live with and something I’m getting used to. Ok, so when the pain is incredibly bad and I feel like screaming, it’s hard not to get a bit frustrated about things and hide away until the pain goes, but getting down about it? Well that just seems quite an effort.
I recently found out a friend also has Fibromyalgia, and she’s offered her support for when things are hard and to know that there is some support and someone who completely understands what it’s like to have this, is a tremendous help and it makes me want to live with it, rather than be ruled by it.
It’s been suggested that I claim benefits for my Fibromyalgia, but I’m not considered to be bad enough, and it’s also been suggested that I look for other work, but when I don’t know how I’m going to be in 5 minutes time, it’s difficult to plan my day. I would love a little 10-20 hour a week job, but if I cannot move one of my arms or I become so fatigued I have to lie down, I don’t think I would last very long.
I read a leaflet my Physio gave me, it says (Re: work) ‘Until research provides us with better answers you should aim for self-reliance’, and that is what I’m trying to do, I’ve been trying for months in fact because if I work from home I can stop at any given time if I have to. Working from home can be very isolating, which is why I make sure I get out every day, even if it’s just for 10-15 minutes, but it does have its advantages when the weather is good and the work load has lessened, or I find out my sister-in-law and her 3 beautiful children are in town.
So, I have this thing that hurts me and makes me tired, but I do feel quite lucky that it’s not any worse and I am still able to get out and about and see my family, friends and enjoy life. Fibromyalgia is not who I am, Rachel is who I am, I just have to put up with the Fibromyalgia and get on with things, and although that’s easier said than done at times, it’s how I’m determined to look at it.