My I’ve suffered with global body pain for years now. After reading “Invisible illness” referring to crohns disease, I thought I’d comment here to try request for Patient Access to highlight how serious Fibro myalgia is too.
It’s taken control of my life and I fight daily to get back into control. I was diagnosed with the following symptoms :
Disorientation
Slurred words
Confusion
Losing tail of thought
Lack of focus
Intense, unbearable pain in back of the head, neck, shoulders, shoulder blades, back, legs, tendons, wrist and fingers.
I have no swelling or anything to give evidence of this pain and it is always there.
Walking does help but walking is like a temporary painkiller and it gets worse before it eases, like drastically worse. After a walk, my body feels like somebody is breaking my bones. This lasts from 2-4 days and I might get a days rest. Before the daily pain returns.
This has had an impact on my marriage as my husband can’t see my pain and only HEARS my pain.
Sometimes I think that he and others think I’m lazy, because washing dishes is difficult, cooking is difficult moping, hoovering and even having a cup of tea! Making the tea and holding the cup.
I’m sick and tired of being judged.
I’ve been told I should exercise more, stop thinking about the pain too much, keep myself busy..
All the above USE TO BE ME.
I worked, loved cooking, loved football, dancing.
I’m the one missing out on things I used to do and mentally I want to do those things again but my physical health is restricting me and that’s what’s causing me to have psychological issues. Massages help ALOT, but then people think I’m looking for luxuries. Having a Massage and feeling great for 7 days is not a luxury. It’s like physio for people like me. It helps a lot!! Reduces pain, stress, helps circulation, which means I can exercise like go swimming and walk to the park, see friends.
Even with my condition, I’m still the full time wife, I cook from scratch daily. I shop, prep and prepare ketogenic meals to help myself. Before I cooked healthy but we had bread, pasta and rice as sides. But now I have replaced all that with more veg.
The point is.. I cook, I clean I shop, I do all house hold chores but nobody is here to see how I get through it.
There’s lots of pain, tears, frustration, accidents.. But by the end of the day all everybody sees, is a hot meal and an almost clean house. Oh.. I do get help if I ask with a response of sighs in return.. But if I had two broken legs and two broken arms in a wheel chair with head injuries I wouldn’t have to ask so much and feel like ’ I ask for too much’.
Simple maths, calculating bills, handling money and knowing every month where the expenses are going is hard enough for the average healthy Person. For me? It’s like brain fog, total shut down and then feeling useless.
I’m now trying to get free couples therapy with (Relate). Just so that my husband can support me because he don’t understand. Through sickness and health? Lately, out relationship has been tested and the build up of losing my confidence, feeling lack of independence and not recieving the love and support I need to get through this has made me significantly worse. I don’t have any family at all. No parents, no siblings and only a couple of friends who understand my position. The rest of my friend have the same ‘just get on with it and stop complaining’ attitude.
So as you can see, my husband is my world and I did not marry him so that he could be my carer. I married him to have love, travel the world and make loving memories.
My illness has made him distant and tired of me.
I feel so guilty. So guilty that I pretend I’m OK as much as I can tolerate to stick to “OK”.
I can’t imagine what others are going through and how many couples are breaking up, separated or divorced because of these invisible illnesses. Many illnesses are being addressed but I think it’s time we hear more about Fibro myalgia.. Unless I’m being made a fool out of? Someone said to me recently that "fibro myalgia is a made up illness for people who complain too much. There’s no tests, no treatment, therefore just a title to give ‘complainers’ a piece of mind.
I’d like to see more adverts.. About fibro myalgia and depression. Depression mostly occurs when a type of trauma or suffering occurs and you don’t recieve the right help, love and support. people deteriorate that don’t get better with this attitude.
Please HELP FAMILIES stick together. Teach them how to be empathic towards invisible illness like depression and fibro myalgia!
The last thing sufferers need is nobody in the world to turn to. As much as we have access to organisations like Samaritans. It’s not enough!
you’re right. It is exactly like a marathon without a finish line or any cheers. Some days I cheer myself “yaaay you f*in done it”