Hate this disease

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Hate this disease

Postby divingforPearls » Thu Dec 24, 2015 7:01 am

I have had it with this s***. I can't even do Christmas shopping and that's only the least of it. I want to be able to work. There is so much I would love to do, work wise, I want to do something satisfying and fulfilling and rewarding and financially normal. I want to be able to be the captain of my ship instead of just being driven around. My whole family suffers because of this s***. I don't make any money, I don't have a lot of energy and the pain is constant, just always there to cope with and it's really wearing me down. This is not what I should be doing!!!!!!!!! I'm 42 and my life is just a big hole. I know all you lovely people have to cope with this as well; but I had - like most of us - real ambition, I wanted my life to be so much different than this. I know you know what I mean.
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Re: Hate this disease

Postby steffard » Thu Dec 24, 2015 8:42 am

I am 32 years old and i am feelng exactly the same way, my Constant pain levels (plateaux) was at approx 4-5 out of 10, with breakthrough pain being at levels 8-10, and i WAS coping with managing most of the symptons. But now i have been in constant pain levels of 6-8 with breakthrough pain levels of 8-10, for the past 5/6 months and now my plateaux is going to stay at the higher end and will not drop to where i was and now i am NOT coping, and this plateaux is now my constant. cannot deal with the constant pain and problems this is causing myself and my family. I hate the way that things have now turned out and feeling so damned helpless and hopeless. I never expected life to be this way and certaimly didnt expect my marriage to be like this and half expect my wife to one day soon say shes had enough and I cant really blame her as im sure she didnt expect to have to be providing for me and taking care of me and all the finances etc. .... happy xmas eve to you all..
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Re: Hate this disease

Postby lin43 » Thu Dec 24, 2015 9:29 am

This illness has been the biggest fight of my life...it strips away who you are bit by bit. Stripping you slowly of who you once were. Waking up each day with less fight in you is another layer of hope taken from your essence. I fought this for years, never accepting that this was to be by my side still to this day. Research and so called cures were my only hope of getting rid of this. No doctor gave me a magic pill. I have bargained with it, pleaded with it, cried with it, but the only thing I can do is to accept it and love myself for who it has made me become. Im not just a person with a chronic illness....I am a daughter, mother, grandmother, sister, friend...I have love in my heart and the one thing this cant do is strip that away from you. Love all you can no matter how you feel, see things from the heart. Don't let this illness make you bitter and angry. Accept yourself as worthy and know that your family need your love first and foremost.
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Re: Hate this disease

Postby elaineann521 » Thu Dec 24, 2015 11:07 am

I am 61 and had this for fourteen years and the last two years I have got a lot worse. But I too have learned to accept it it wasn't easy.the one thing I do get annoyed at is the brain fog this is for me the most horrible part of it.i have now learned to give in to it when I have to which means if I need to lie down I don't fight it now I get on the bed and watch brothers and sisters I rest and I find it better than fighting it.i do crafts embroidery etc which keeps my mind occupied.i have not worked for twenty years as I have been my husbands carer for that time hope you all feel a little better tomorrow and happy Christmas to you all
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Re: Hate this disease

Postby AlisonL » Thu Dec 24, 2015 12:38 pm

Big gentle hugs to everyone. At Christmas, even the fittest and most active people tend to feel inadequate - it's never perfect for anyone over the age of six!
Please be very careful to hate the disease but NOT yourself. I have spent too many years beating myself up about having fibro. Mostly emotionally but also physically when I make dumb decisions to force myself into activities I know will make things worse. It's good to hate fibro if it makes you fight back with all the diet, rest, mindfulness, gentle exercise, supplements...whatever works for you. Not good to hate it if you just lie down and wallow in it.
Thankfully not on this forum, but I belong to a couple of groups where the "my pain is worse than yours" battles rage on a daily basis. Nearly caught myself doing it here "Embroidery? Your hands are well enough to do embroidery?" Then I thought "No, good for you to find something so creative that you can do"
When I was at pain clinic, one exercise involved identifying the "passengers" on our "bus". OK, so the group took to calling me Mrs Grumpy, bu this is what came out of that name and that exercise. It's awful doggerel, but has stuck with me because it reminds me that how I let anger, pain and despair impact on me is not down to fibro but down to me as a person.
I think what I am trying to say is that I am so glad that this forum exists where we can vent, share out worst feelings, be understood.
Personally I am going to get through tomorrow by using the brandy and codeine combination a pain consultant once shared with me. Don't need much of either, not recommended for frequent use, but it works a treat for me!
Every best wish for a Happy Christmas to you all

Mrs Grumpy sat on the bus
And cried “'Ere, where're you taking us?
The road is bumpy
My seat is lumpy
You really are a dreadful driver
You don't know where you're going, either”

A voice added strength to her refrain
The whingeing, whining, Mr Pain
“Treat me right Or else I'll bite
If I don't get your full attention
I'll hurt in ways you dare not mention”

“I'd give up even trying to drive
There's no point striving to survive”
Ms Defeated Mewled and bleated
“This bus is useless, knackered, broke
Just like the driver – what a joke”

The Driver spoke up clear and loud
“I've had all I can take from you miserable crowd
So hush up your fuss This is my bus
Ma Grumpy, Pain and Ms Defeated
I insist that you stay quietly seated

Lower your voices
Because I make the choices
This is my ride I get to decide
When to set out and where to go
Straight or winding, fast or slow
I'm the Driver,
Me, I am the Driver.
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Re: Hate this disease

Postby divingforPearls » Fri Jan 01, 2016 9:30 am

Wow Alison, that brought tears to my eyes, I can see you've been through it too. Thanks everyone, for sharing so honestly, and listening to my true feelings about this - I try and keep it from the family if I can, but it's hard to supress it totally - hence this forum is such a useful place. I think on reflection, maybe I do love myself, I just hate this disease!!! Well, that seems like an appropriate response sometimes...Thank you thank you for a place to vent. And...breathe... and...relax... (Arggh!!!) (Still veering from anger to trying to be calm. I do try and meditate at least once a week - probably should double it hey!!??) Best wishes to you all.
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Re: Hate this disease

Postby sunflower » Mon Jan 11, 2016 9:23 pm

Hi
I completely understand yr anger too. Thats just how I feel. Bloomin fed up. Fed up of being judged, everyone having an opinion, and wondering why i was landed with this rubbish. I would love to know how to love myself but cant, the useless feelings are horrid and its all on top of pain. Only when you read these forums do you realise others feel the same. This fibro makes the world a pretty lonely place. Hoping the brandy trick works as a treat once in a while!
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