Saturday, 7 November 2020

When Chronic Illness becomes a way of life

 I was fine, yes, I had my regular aches and pains. I'd been a chronic migraine sufferer for years but they were definitely related to my hormones. I'd also had some massive stomach pains that were being invesitgated when I got sick. Nothing was really found but they did say that I had a leaky gut, gasses were escaping into other parts of my body, including my womb. These days I imagine my womb as a shrivelled up prune! She served me well giving me five children. It was tough going at times but she's retired now, and so have the hormones. 

Chronic Illness and Life

So, even though I'd suffered on and off for many years, it wasn't until I began suffering constantly that life really changed. When I say constantly, I mean, constantly. There is not a moment of any day that I do not feel pain. I sleep a fair bit because I have pills that knock me out, but wake me up and the pain is still there. Day and night, night and day, every single minute.

I think this is what is so difficult to understand for most people. We all get sick, right? That throbbing migraine that has you lying down in a darkened room thinking that you just can't carry on is the bane of your life. But you know that it will go away. You will be okay. The pain will go and you will function again. phew. 

You get a cold and your head throbs, your nose runs, you can't stop sneezing. You cough and cough and it stops you sleeping. You sweat and ache and feel like hell. But it passes. A few days later you can be jumping in the car or on the bus and off to the shops, or to visit friends. (Well, maybe not in lockdown, but in normal times.) 

Can you imagine not getting better? 

It's hard isn't it.

I Was Told I Would Get Better

When I was in hospital I was told that I would get better. It would be hard work and take time but I could expect to be back to normal in about 8 weeks. I cried, 8 weeks was a long time to feel so rough. I felt sorry for myself. I did everything they asked. I took my medication, I did my physio, I pushed myself as much as I could. I even ate salt because my blood pressure was so low. I hate salt unless it's hidden in a cake or bread. I never usually add it to my food. 

I came home and carried on with the pills and physio. I visited hospital weekly. I tried so hard and waited to get better. I didn't get better. 

I improved. I managed to learn to walk again and move a little more. Although I still have plenty of times when I lose control of my body, mostly I can do stuff even if it hurts. 

The hurting never stops though. I get pain in my feet, my legs, my hips, my sides, my stomach, my chest, my shoulders, my neck, my arms, my fingers, my face, my head. Okay, Okay. I should have just said everywhere. Yup, even my bottom hurts. It's been nearly five years now, every day. 

It never, ever stops hurting.

Sometimes it doesn't hurt so bad and I can walk to the toilet or the kitchen without wincing every second. I can sit and type, or crochet and watch television. It hurts but I'm taking my mind off the pain. I can stand in the kitchen, and sometimes I can get so involved in what I'm doing I push through the pain and get on with it. I can go out in my wheelchair, every bump hurts, every sudden stop or turn can hurt, but I need to get around don't I? 

Sometimes it gets worse. Generally when I've done any of the things above. You see, I want to do things, but doing things make the hurting worse. I could lie in bed all day, but lying in bed hurts too. Some nights I wake up and force myself to stand up and take a few steps just to relieve the pain of lying down. Then I have to lie down to relieve the pain of standing up and walking. 

When it gets really bad I take some more pills, generally diazepam because they help me relax. When the pain is bad, panicking makes it worse. I don't want to panic so I chill myself right down. I focus on breathing. I'm lucky, breathing doesn't hurt. I fill my chest and empty it. I concentrate on that. Everything else goes completely, utterly numb. My body's reaction to severe pain is to go numb. It sounds good, but it's pretty scary. When I say numb, I mean I cannot move. I have no control at all. I sometimes manage to keep one of my arms or my neck so I can move my head, but sometimes, I cannot even control my speech. 

Death Meditation

I came across death meditation in a fiction book I was reading. The description was exactly what my body does when I'm in extreme pain. My first reaction was to panic as it seems my body is preparing for death. But then I realised that each time I've come back from it, and I will come back from it. My breathing continues and I will continue to breathe. 

Death meditation is a Buddhist practice which teaches you to let go of life and accept death. Accept your fate, after all, we will all die one day. I've decided to learn more about it. I think letting go of life is difficult and people fight it so bad. I won't give up wanting to live, I have children I want to see grow up. But if it comes to the end I want to go in peace. knowing peace, feeling peace, and hopefully letting my family know that I am at peace.

A lot of people when faced with the prospect of constant pain for the rest of their lives find it difficult to accept. Trust me, I get that. I think that maybe I have at least 20 years left on this earth. That's 20 years of pain and suffering. You may say I'm being over dramatic, but that's because unless you experience pain every minute of every day it's hard to understand. People who can't accept it give up, it doesn't make them weak. Really, choosing forever peace over forever pain can seem like the perfect choice. 

I've chosen forever pain.

Of course, I'll never stop trying ways of easing the pain, making life better, living my life, creating, enjoying, laughing, loving, there are so many things you can do even if you are in pain. And all of them help to make the pain more bearable (Apart from laughing, if I laugh I get the most incredible pain spasms in my side. But, it's not going to stop me from laughing.)

Accepting My Fate

I have accepted that I am now constantly disabled and that I am not going to get better. My original diagnosis was wrong and now I know that my condition is progressive and will get worse. But that's okay, because I can keep going. I will keep looking for the things that make me feel better, happier. I will carry on because I never want to give up. I'm not fighting, it's not a battle, it's my life and I just want to live it. 

I may hurt but I won't give up smiling and loving my gorgeous family. 

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When Chronic Illness becomes a way of life

 I was fine, yes, I had my regular aches and pains. I'd been a chronic migraine sufferer for years but they were definitely related to m...