My name is Kira, I suffer from severe all body fibromyalgia. This has changed my life drastically as I’ve gone from a healthy outgoing, independent woman to someone who is now disabled and relies totally on other people for my every day care.
Physically at my worst I am unable to do anything for myself. I cannot take care of my everyday personal care and it can take up to 40 minutes for my husband to wash and dress me. Realistically I spend my day in my pyjamas now as it is much easier and more comfortable for me. There are times when my husband has to feed me. I tire very easily, some days spending all day in bed sleeping, or I spend my time having to go back to bed every few hours for a nap. Fatigue makes me feel so ill. I feel nauseous and sometimes faint. Even sitting can make me feel so bad that I have to lie down. My husband has gone from the role of husband to carer and this hurts me so much as I need my husband and I miss what we had. I am now an invalid though and I mourn the me that was.
My sleep pattern is variable. I have to take over the counter sleeping tablets as my doctor won’t prescribe any for me. I find this strange as each time I’ve been admitted to hospital, I’ve been given them there. I also feel that GPs in general have little or no understanding of this condition. There are nights when I am so sore and stiff that I cannot even turn in bed by myself, and more recently my husband has to help me out of bed too.
Socially I very rarely go out. Just getting ready to go out is taxing for me. I also suffered panic attacks. I hardly ever see anyone, so when I do, well, I panic. I now use a wheelchair as I cannot walk far. I’ve become invisible; I am a non person now.
Shopping. I used to love clothes shopping but now I cannot even reach out to feel things as I cannot raise my hands above my head. This hurts more than physically as I used to do weight training at the gym. Also shop assistants seem to not see me and so talk to my husband instead. I don’t even deal with money anymore. I can’t drive now. Even if my health would let me, I’ve lost my confidence. I used to love wearing my heels, but I cannot wear them anymore.
Emotionally I feel at times that my life is not worth anything. The pain I suffer is chronic. It affects all my body. My legs burn and this spreads to my skin and hits areas all over, even the soles of my feet. My jaws hurt, stiffens up as well as my fingers. The pain can start as something general and within an hour can become so severe that I weep and want to die. My joints stiffen up and I have become an old lady before my time. I suffer brain fog because of medications. I forget things and I am a danger to myself regarding my medication so my husband has to make sure I get my meds when I should. He has taken complete control of this aspect of my care too. My muscles spasm severely and regularly. Once I scolded myself with very hot tea so now I have to drink from what is an adult equivalent to a baby cup.
Fibromyalgia is soul destroying. I have been admitted to hospital on a number of occasions when my condition worsened and I required my medication to be reassessed. I had a course of acupuncture which in itself was agony for me. It did help a little at first but soon I couldn’t tolerate the added pain and it wasn’t helping me anyway.
My neck cracks. I feel a pressure build up then it releases with the crack. This only started happening after I was diagnosed with fibromyalgia. I have been passed from doctor to doctor who have all said that they can’t do anything for me except pain management and life style management. Medication-wise, the next step would be morphine to control my pain. I refuse to become a medical junkie so I struggle on and try to remain positive. My life is a big ball of agony and feeling of helpless to change how I am. I don’t really see my future improving in any way.
I write a blog – an ongoing journal to try and help myself come to terms with my pain and my feelings. I also want to help other people who suffer from fibromyalgia or other chronic conditions. I do this to try to stay positive and strong but the truth is I am not brave, I am not strong and I cry inside every day of my life “Why me”? My pain has also affected so many others, my family, my friends, and my husband. He feels helpless and he has no choice but to watch me suffer while he can do nothing to help me. He can’t even hold me close for this hurts my bones too.
Imagine having the worse pain you have experienced and multiply it by 100, then imagine having to bear this 24/7 every day of your life – this is my life of pain. I would do anything to live even just one day pain free, just to be normal again for a little while.
To interact hear more from Kira, visit her blog: Diary of a cfs/me & fibromyalgia sufferer.