Friday, 30 March 2012

Its a pain

So as i mentioned before i have Fibromyaglia and ME. Its a neurological syndrome that most people don't understand or even more annoyingly say, 'it'll be grand everyone gets tired now and then' ME is chronic fatigue syndrome. Its pretty much like recovering from the flu all the time. I rarely have good days. I try not let it interfere in my day to day life but its impossible. Right now my shoulders are burning me, like pain radiating from my shoulders down my arms. My fingers are stinging me and my back going into my legs are just painful. On top of all that i am exhausted the whole time and not getting enough sleep exaggerates my condition. I am on medication for it , they keep the symptoms at bay but if i stop taking them for a day or two i end up in a heap. Fibro fog is another very annoying aspect to it. It makes me very forgetful and anxious as sometimes i could be walking down the road and momentarily forget where i am and where I'm going. I get bad dizzy spells that result in whats like electric shocks going through my body.

I'm not writing this blog for sympathy or anything like it. I just want people to understand. I'm sick explaining it to the same people over and over again. I would give anything not to have this. I very rarely mention it to people and mostly just pretend everything is fine. I hate people feeling sorry for me. At the end of the day i could have something worse. My biggest passion is playing  video games. I collect consoles and games and have quite the collection including some rare boxed games , 9 consoles and 2 handhelds. i have over 800 games. But quite a bit of the time i cant play. Either cos i have a headache, or sore hands. Its frustrating. I also have to cancel from time to time with friends when we've planned stuff. I always feel so bad and am thankful i have such great understanding friends, (Tammy, Ashy, Declan, Pierce) I have an 80s themed party planned for my friends, including watching 80s films,(the goonies, batteries not included, add your own, friends lol) watching ALF lol, and playing retro consoles. Eating 80s food and drinks. I think we will all get very drunk and stoned...

I have a wonderful boyfriend who always thinks he's not helping. But has no idea how much he actually does. He listens and makes me feel better all the time. Him just being there means so much more to me than he realises. Recently we were on holiday in Cornwall with Andrea and Billy when on the 2nd last day after a long day out , i had a flare up. We were supposed to be going out for dinner that night but i couldn't. No one went and i felt so bad. I was lying on the bed with Michael and his arms were wrapped around me. He got up to put his snuggie over me and just sat there holding me. I don't know how long i was in and out for but when i came too properly, Michael was still sitting there, still with his arms around me just holding me. I was nearly 4 hours in the flare up and he just held me. Even when it got dark and he couldn't see anything. He just held me. This guy is the most loving guy in the world and i am really lucky to have him in my life. I love you so much baby and you been in my life , caring for me the way you do means so much to me. You're my soulmate x

Fibro will always be in my life but i am thankful i have friends who text me and email me regular just to check up on me. It means a lot to me to have you all in my life. Love you all xx

4 comments:

  1. sorry i forgot about Louise too.. lou is a great friend too xx

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  2. also all the wonderful online fgriends i met too.. sorry im having a foggy day love you all xx

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  3. don't feel bad about us not going out...I didn't go because i was tired was why I was pushing to find someplace before we went back to the cottage sometimes once you sit you just don't wanna get back up. :-) If we had wanted to go out to eat we would have!!

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  4. This Made Me Cry, Not For Sympathy, Because I Know You Hate That, But The Total Lack Of Understanding Or Even Acknowledgement Of This Disease. Love You Sis <3 xx Admire You So Much (:

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