Understanding my Chronic Illness

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One of my goals for this blog is to let others in. I find it really hard to talk to anyone apart from those very close to me about my daily struggles. I don’t like to burden others, especially friends, with all of my worries and feelings as they have their own problems and I worry I sound like a broken record … I mean, I’ve had this illness for over six years now so it’s the same old feelings just a different day. Another thing that stops me is that no matter how much I try and explain what it feels like to live with a chronic illness, others don’t understand no matter how hard they try. In this post I’ll be sharing the most difficult thing I have to deal with my my life… Chronic pain.

SurviveI have been in constant pain since September 2008. About a year and a half ago I had a lumbar puncture and some blood tests to test for the shingles virus in my spinal cord as up until that point no one knew what was causing my pain. When the results came back my neurologist at the time confirmed he believed the pain I had been getting in my right leg was likely to be due to having nerve lesions caused by having had the shingles virus at the site of some of my spinal nerve roots. This type of pain is called Post Herpetic Neuralgia (neuralgia after Shingles). My condition worsened after the LP as the procedure caused the virus to become active again and damage more nerve roots so I now have pain in both of legs, my hips and my back. I also currently have chronic fatigue, muscle aches in my shoulders, neck and upper arms, pain around my eyes and ears, joint pain in my hands, nausea and insomnia. I am awaiting a diagnosis for these symptoms. I suspect fibromyalgia or chronic fatigue syndrome.

 

Trapped

Living with chronic illness and pain by Judith Mary Rose
“The picture represents the isolation and imprisonment those of us with chronic pain and chronic illnesses feel. We see and hear what the outside world is offering but we are tied to our homes and our diseases. We are often unable to take part in any activities outside our sickroom. This leaves us feeling sad, depressed, hopeless, and helpless.

Do you want to know what it feels like to be me on a daily basis? Do you know the feeling of being sore and achy the day after you first exercise in a long time? That’s how my muscles feel all the time. Do you know the feeling of being stiff all over after sitting in the same position for too long? That’s how my legs and hips feel daily. Do you know the feeling of needing to crack your back or your knuckles because they are hurting? That’s how my joints feel daily. Do you know the feeling of throbbing knees and/or ankles after a long run? That’s how my knees, ankles, shoulders, and hands feel daily. Do you know the groggy feeling of waking up in the morning after getting maybe one hour of sleep or a night of drinking or partying? That’s how my body/brain feels daily, even though I don’t drink or party :( . Do you know the feeling of a trapped nerve? I have those sharp shooting pains in both of my legs regularly through the day. Do you know what cramp feels like? I have cramp in my thighs constantly and no matter how much I stretch it never goes away.

I could easily carry on. Pressure all over my head, sensitivity to light and sound, stress, inability to concentrate on anything, no energy. More.

This is what I have to deal with everyday. I have good days and bad but itis always there. Ilearnt to manage the neuropathic pain in my legs very well with the help of a pain consultant and a pain psychologist. I learnt to accept I have a chronic illness and how to deal with flare ups and to always pace myself. But I am struggling at the moment as I’m not just dealing with pain anymore.

Despite all the suffering a chronic illness causes, many good things have come out of being ill. I have always been a compassionate person but since having all of these health problems I can now really relate to others who have debilitating illnesses. I also have a new appreciation for life. Everyday I think how lucky I am to have such amazing friends, family and boyfriend. On good days (when I’m able to get out and go for lunch for example, and do little five minute walks) I feel like the luckiest girl alive even though I’m still in constant pain! Because having lots of bad days makes you so greatful for the not so bad ones.

My boyfriend Paddy often says he wishes he could take my pain away for one day so I could be pain free and he could experience what it feels like to be in my body. But there is no way I’d want him to experience it, not even for a day, or an hour, or even a minute. I wouldn’t wish it on anyone. But I do wish others had a better understanding of what it’s like to have chronic pain.

I wish ‘healthy’ people appreciated their health. They seem to take it for granted, moaning about colds or little niggles they get when they exercise. They have no idea how lucky they are to be fit and healthy, to be able to walk around town or a supermarket, to go for a bike ride or a swim, or to just be able to sit comfortably.

I hope this post has helped you understand my condition a little better and to not take your health for granted.

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