Living with dementia can be strange because you don’t always feel like there is anything wrong with you. In the early days, you know that there is something ‘not quite right’ with you but you can’t always put your finger on it.
I don’t feel like I am any different to any person over 60 whose behaviour and memory is starting to get a little wonky, but in reality, there are things that are creeping up that I am not comfortable with about what is happening to me.
I keep forgetting what it means to live with Fibromyalgia. I live with pain 24 hours a day, 365 days a year, in my feet, wrists, hands, knees, back – hell everywhere really. So when my fibromyalgia is flaring up and I am so debilitated by the pain and fatigue, I should not wonder what on earth is wrong with me. I toddle off the the Doctor’s to find out why my finger is so swollen stiff and excruciatingly painful with a lump on the joint (which later disappeared). At the same time I tell him my glands hurt, my eyes are sore, it is uncomfortable to breathe and I am in so much pain I can’t get out of the chair. I sleep for hours because I feel so ill, but I can’t sleep at night because the pain is so bad.
I have some blood tests done, even though he says he thinks it is just my fibromyalgia……..I go home and feel a fool. How did I not remember how ill my Fibro flare ups make me. Now I feel so guilty that I am beginning to recognising that this is happening every time it is at its worst. I simply forget how ill it makes me.
I think this is to do with my dementia. Yes, I function fabulously day to day, but living on my own has its drawbacks. This is one of them, having no-one to suggest to you that this is simply a Fibro flare up, and can I remember how it was having the last one? How bad it got, how ill I was. No cooking, cleaning, in fact daily living just stopped because I was not able to do anything. ‘Fibro Fog’ meant I felt more confused and forgetful than usual.
When these times arise and I am sitting amongst the mess of my home, living off quick snack type foods, too exhausted to wash, I look at whether my dementia has worsened. I think I am less able to be spontaneous than I have always been. I find it harder to ‘sort’ things out and it takes me more time than it should. There are times when I think ‘why didn’t I think of that?’ when something obvious has been pointed out. I feel like I am forgetting a lot of things that I have learnt. Recipes I have cooked forever, people’s names, places, things in my past. However, having dementia means I always adapt and not worry – try not to sweat the small stuff.
So, right now I am in so much pain without any painkillers that will touch it, waiting for it to dissipate enough to function normally again and somehow I need to make myself a reminder to understand the next time this happens that the possibility that it is my Fibromyalgia and to wait but what happens when I can no longer understand what is happening?