I wrote a post three years ago, I wish I didn’t Hurt and it still gets lots of hits. Probably because of the image included which is actually a quote for Fibromyalgia. Now I feel I’ve been robbed!

This is my life. This has been my life for more than four years now. You see, I was educated, ambitious, hardworking and tireless. Then, literally overnight I was robbed of my ability to work, clean my house, exercise, think clearly and ever feel awake or healthy again. Ever again. I was robbed, it was taken away.

Stop, think about that for a minute. Argh, I don’t want to do the washing up I want to watch Eastenders, replaced with, argh, if I do the washing up I’m going to be in so much pain I won’t be able to concentrate on the television anyway.

Pain has Robbed me

I wake up in pain. My back, my legs, my neck, my arms. It hurts to get out of bed. Occasionally it hurts too bad to even turn off the alarm. But I do it because I have to. I have children who need me. But, it’s not only that, its my determination to live a normal life as possible. If I stay in bed I will be giving up, giving in, letting the pain win. But the worst bit is, the pain won’t go away or get any better if I don’t get up. In fact, I’ll just feel as bad, or even worse.

The relentless pain covers most my body but mostly my legs, feet and lower back. Then suddenly my arms and hands will hurt. I turn and my stomach or neck hurts. I bend to scratch an itch or pull up a sock and the pain in my side brings tears to my eyes. I stand at the work top to make food or even a cup of tea and my legs feel like I’ve just walked 20 miles in stilettos. I sit down and my back feels like its burning and my bottom like I’ve just sat on a concrete rock. I can’t curl up on the settee, I can’t cross my legs, comfort is a long lost memory. I go to bed and I lay on my side and suddenly my legs start shaking and my toes go into spasm. This is just the tip of the iceberg. A tiny insight into my pain.

Then today I read a post on the Brainless Blogger on Why do I Undermine my Pain? And I realise that I do it too.

It’s Not That Bad

I have always had low blood pressure. Not too low to be an issue, but sometimes they were a little concerned during my pregnancies. The only other time I’ve seen concern was when I spent two weeks in hospital, they practically forced me to have salt on my food! So, you get sick, one of the first things they do is take your blood pressure, and hey presto, it’s fine. So you are fine. Right!

I also have some great breathing techniques to keep my heart rate normal. I started this many years ago, before I got sick. I can bring myself out of a panic attack just by breathing. The only time I had issues was last year when one of my medications was causing my heart to ‘play up’ a little. I’ve stopped the medication and now things are much better.

When the pain gets too bad I can use distraction techniques, or if all else fails I can pop a couple of extra diazepam. The drugs don’t work they say, well they may not take all the pain away, but used right they can take the edge off, even if the payment is not being able to stay awake for five minutes.

I’m good at keeping calm, using breathing techniques and even meditation. If the pain gets to bad then I use my head to keep it under control. Most of the time it helps a lot. Sometimes, I genuinely feel it’s saved my life, in particularly one time when I had a bad spasm and almost choked myself.

Hey, it’s real bad!

I went to hospital after an IVIG treatment. I couldn’t hold my head up it felt so bad. I couldn’t feel my left side, but then that’s quite common with my condition. They took me to triage and did my SATS, they were okay, just a bit hot. The nurse could see I was suffering so she gave me a little dose of morphine. It did nothing, not even touch the side of the pain.

I went into a cubicle and the doctor did the FAST test. Nope, I wasn’t having a stroke. You have a migraine, he told me. I have had migraines for over 30 years, I wouldn’t have gone to A&E with a migraine. He called my neuro consultant. Ah, I have a rare condition, I’ve just had treatment, it’s a side affect. Bye, Bye. Did I make a fuss? No, I felt too ill and the morphine made me feel dopey. I went home.

On my notes it says drug induced aseptic meningitis (DIAM.) Nothing to worry about then.

The Crash

No, I didn’t need resuscitating. I was in a car accident. At the scene my body had reacted to the impact by going completely stiff. Which is quite normal for me. The ambulance crew had to help me out of the car onto a trolly and into the ambulance. I was panicking I know, but my Little Man was there and I didn’t want to scare him. So, I closed my eyes and breathed. I got it under control, my heart rate was okay, my blood pressure fine, temperature fine. “How’s the pain on a scale of 1-10 where 10 is the worst imaginable, and 1 is perfectly fine” I was asked. I looked over at my frightened Little Man. “About 7” I replied calmly. In my head I was screaming 99!

At the hospital I was put on a trolley in a corridor for 2 and a half hours. Every so often a nurse came along for the usual temperature, blood pressure and heart beat. I’m fine. The pain seared up my spine, my foot hurt real bad, my head was pounding and I felt sick. But I was fine. And the Little Man had been picked up and taken home. Everything was good.

Finally, I was taken into a cubicle. “Can you lie on your side?” Yes, with a little help. ” I’m just going to feel your spine” ouch, ouch, ouch, ouch, ouch. No more control, my body took over and I went as stiff as a board. “I can’t feel any swelling, can you relax for me” Time for husband to explain that it was part of my condition, my body would go stiff and I was unable to do anything about it. I couldn’t even speak properly. Husband told him I was worried about the pain in my foot and the doctor went to look. There was some blood but it was soon cleaned up. He tried to move my ankle but it wouldn’t. He said he’d come back in a while when maybe the spasm would have stopped. It didn’t.

I was given a leaflet for whiplash and sent home. I couldn’t weight bear on my ankle for weeks, it was sprained. I felt that my condition had prevented my having any real treatment, despite waiting for so long. When I was told to go home my husband asked for a wheelchair. The doctor, a little confused, asked why. My husband explained it was because I was unable to walk and the doctor assumed it was because of the ankle. Still, he didn’t seem too concerned and said I should be able to walk on it. Then My husband explained that I couldn’t walk anyway. Honestly, by this stage I just wanted to go home and didn’t care. With afterthought, I did think he was insensitive, quite rude and fairly incompetent. But at the time I just felt like I was being an awkward annoying patient because I just wasn’t simple to treat.

Trapped and Robbed

I feel trapped in this body of pain and immobility. I feel robbed of the life I once lived. But what can I do? I’ve fought for treatment, I’ve practiced mindfulness, I’ve tried to accept.

I feel trapped and robbed because I can no longer complain about how I feel. I’ve been sick for years now, people are bored of hearing about it. I should stop moaning and get on with my life.

I feel trapped and robbed because I have friends and family that have refused to understand. I shouldn’t focus on my illness, writing it down will make me feel worse, complaining will only drive people away. And, hell, trying to tell my story to an online magazine in the name of awareness for my rare condition was completely unforgivable.

I wanted to write this, not for sympathy or admiration for how brave I am. Not even to raise awareness of my ultra rare condition that no doctor seems to understand. I wanted to write this to let you know how I feel.

Trapped in this stupid sick body and Robbed of my life and any kind of respect.

Do you have an illness or disability that has robbed you of your former life?