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?
Handbagwarrior; verbal ramblings 
Gill, so sorry to hear about your pain in addition to your dementia symptoms. It must be terribly difficult to live on your own. I know I depend on my husband quite a lot. Please remember 3 things: you are not responsible for your illnesses, you don’t need to let your sadness control your life and you will feel better at some point once you have fully accepted your situation. You are a strong lady, and I’m sure you will bounce back from this adversity.
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Thanks Paulan,
Staying upbeat, and taking it easy whilst it’s at it’s worst. Going to have to craft myself some artwork reminding me that I have Fibromyalgia and it hurts really bad at times!!!
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Oh Gill I am so sorry to hear this. I had never thought about this before with my mom but then again there were times when she could no long speak that she would make faces and I kind of guessed she might be in pain somewhere.
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Thank you
It’s not something I think of! I have been living with it for at least 6 years and just try to get by the best way I can. But I do worry about people living with dementia and co-morbidities whatever they are so that each person is seen as a whole and not just dementia.
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Sorry the pain is so bad at times. I imagine when you have a flare up the dementia symptoms may worsen. Whenever dad had an infection, his level of confusion worsened until the antibiotics kicked in then the dementia fog would lift again a bit. The times he had to go into hospital were the worst because he couldn’t remember why he was there. I’d explain he had a chest infection (or whatever it was) that he was being treated for it and would come home as soon as the doctor said he could. Two minutes later, I’d have to say it all again. I wrote out a big note nor him saying ‘I am in …Hospital. The doctors are giving me medicine for a chest infection. My daughters are coming in to visit me.’ It helped a bit, though probably drove the other patients to distraction when he kept reading it out to them!
Rest as much as you can.
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Thank you Mary, I liked how you wrote him a note, but had to laugh at him reading it out to everybody! I find it frustrating that I can’t remember what the pain feels like when it is really bad. Makes me feel a bit of an idiot!
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Well, you are certainly NOT an idiot. I think you are being too hard on yourself – cut yourself some slack 🙂 And it sounds like you have an understanding doctor who will do blood tests just in case it might be something else.
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🙂 Thank you Mary. He is understanding but it must be just as frustrating for Doctors when people with dementia question what ‘else’ is wrong with them then forget!
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