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Fibromyalgia Action UK
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end of the road

today was a tough one it finally happened I lost my job. after 6 years of hiding the pain, illness, exhaustion, dreading each morning praying I wouldn't have to phone in sick.

my illness and symtoms have increased in the past two years. Its not just a salary to loose it's my independant, my vocation, a purpose and value.

I feel numb, confused, anxious about the future. that I have let my family down, deep down I know it's the illnesses that have lead me down this path. it will take time to adjust and get my thoughts together. I just need sleep and a bit of time.

Maybe there are new opportunities in the future - I really hope so.

😭😦😠🤕😪

35 Replies
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First of all Lou59 you haven't let anyone down.

You are a butterfly warrior and don't ever forget that! You got up every morning, you told your fibro to sod off, you put on your big girl pants and you survived. You worked and you loved and you carried on like nothing had happened. You've probably felt alone and scared and yet you've still held your head up high and carried on!

You are strong and independent and you have so much value. It takes a really brave person to post like you have; to carry on when they feel like everything is falling apart and to work when you feel awful. And you did all of that!!!

Behind every rain cloud and storm is a rainbow. After every night is a day. You will pick yourself, dust yourself off and you will FIND opportunities as you are an utterly amazing person, you are a butterfly warrior and that's what we do

🦋💜 love and hugs xxxx

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thank you so much for your understanding and kind words. made me cry a bit but in a good way. I've been hiding so long and pretending it would be ok. know I know I have to take some time and rest.

yes I defiantly had the big girl pants. my job was stressful always putting others and their families first.

so now my turn.

what do you do to keep busy?

butterflies are my go to as well they have so many shades and change.

thank you again x

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Hey Lou,

You should never have to hide hun, were all here to support you and help wherever we can ❤

Well that's good, putting yourself and your needs and people you love needs first rather than people who don't mean a lot to you!!

I read a lot, a world where people aren't ill and solve crime and jump from rooftops just because they can! What about you? Any hobbies?

Gentle hugs 💜🦋

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reading to escape too almost anything and everything , my dogs and my family. I like to learn and am addicted to the blacklist and enjoy all sorts of films and music.

my daughters just got me to use her Netflix and amazon.

take care off to feed the dogs before they phone rspca lol x

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I'm so sorry.

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thank you. nice to speak to others who get it. 😊

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Hello.

I retired early from teaching because of my condition. If I hadn't gone they would have continued to 'punish' me and make life even more unpleasant. What did you do? Is there no way you can appeal the dismissal? I so feel for you in this situation.

Feel free to chat. I'm so sorry you and your family have to deal with this. Take care.

Hx

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I'm at the end of the road with my employer. I was a family intervention worker every day was different but so much was put into keeping the job there was nothing else apart from flare ups and exhaustion. in reflection I've not been living a life or taking part.

what do you enjoy taking part in?

thank you for your words and chats are always good for everyone.

I'll go to the job centre next week see if I can apply for esa.

just struggling with a awful lung infection that is not wanting to leave.

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Oh lou59 I'm so sorry, it is so difficult to keep carrying on when you are struggling so much, I was literally just saying the same to someone else. When you haven't got the stress of work your health will improve and you will be able to pace yourself better & have a better quality of life. Believe me, I was the same & had to retire due to my health & i was so gutted, it's what I had done most if my adult life & i loved my job so much. I couldn't even imagine my life without it but once it sunk in that I was deluding myself and i began to accept it, I've never looked back and i should have done it before I did because the last 5 yrs I worked I nearly killed myself trying to struggle on and nothing is worth that my friend. You will adjust and you will find different purposes in life honey, one door shuts & another opens doesn't it ? & I'm sure it will for you too,

You must not think your letting anyone down & I'm sure your family would rather have you not so stressed, which is more than likely making you worse. So be kind to yourself 🌷🌷🌷

Luv Jan xx

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my husband and daughters have said how worried they have been for the past 2 years. so I take comfort that they want me to prioritise my health. I guess I've been fighting as you were, delusional yes I kept pushing if I kept going maybe everything that I couldn't control or change might magically disappear.

just enjoying spending time with the dogs at the minute. they know when I'm bad they just snuggle on up.

thank you againx

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Hi, did you get advice about your job? Remploy for instance help disabled or newly disabled people get or stay in work.

K

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I'll take a look at that in a bit once im on my feet thanks so muchx

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So sorry to hear this. I know how you feel, I felt the same when I had to retire. You aren't letting anyone down. You have courageously struggled against the odds. You need to start to look after yourself, and hopefully your health will improve.

There is a future. You will find new avenues. My best wishes to you , Hilary x

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thank you Hilary. I hope so like to keep busy. takes some time to accept life does have to change and fingers crossed I will start to find some interests I like reading but struggled to focus as was to tired. so got some books sat waiting for me . you take care toox

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I am sorry to read of your news. Don't feel bad that you have let anyone down, you haven't. You struggled to hang on for so long which was not helpful to your health and now you have lost your job it is time to put YOU first.

There is voluntary work if you miss the companionship, which is difficult to adjust to at first.

But!! There are so many pluses to not having to watch the clock, rush around doing the housework or be answerable to anyone. You will find your niche, look upon this as a good opportunity.

Do check with the Citizens Advice to see if you have been unfairly dismissed and also if you can claim any benefits.

This is the start of the rest of your life!!!

Kay

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I will contact cab- thank you.

sleep would be really good, been running on adrenaline and energy drinks and coffee for so long.

I used to volunteer when my daughters were younger so maybe in the future. companionship worries me as family and work that was me. my husband is away all week.

ill figure it out. bye x

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I'm so sorry. You are not alone. I did the same and am now doing what i can. It is really hard first days but it will get better. I just had to come to terms with the truth that i could not manage working anymore. I also felt like I had let my family down but realised that they understood and it was up to me to accept the inevitable. Soon you will find something to do to take your mind off the pain. I joined a couple of support groups which i attend when I'm a bit better. Don't beat yourself up. It's not your fault. Hope you will be in a better state soon. Keep in touch. X

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thanks for getting in touch. when it happens I guess you feel like the only one but reading others have been where I am gives me heart. you falk into a cycle of coping and not living and so quickly it becomes normal as we forget what it was like before. so I guess we become so hard on ourselves to keep up that we cause ourselves heartache and frustration.

thanks again x

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Hey Lou......

You never know what's around the corner, as one door closes....another opens! I hope everything turns out well for you! Keep on fighting? Are they dismissing you unfairly, you have a disability after all.....might be worth chatting to the CAB?

Good luck x

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will do. they have been pushing for me to choose and go making it harder. knowing I was embarrassed and proud.

going to go to job centre to look at things next week when I can manage a bit more.

the doors been hitting me on the bum for so long now I need to push it open instead thank youx

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Lou.....I refuse to give in and I'm a physical wreck!

I went and had a nice chat to the disabilities officer at the DWP. I was refered there by my occupational therapist, after my brain haemorrage. The lady I met was really nice, she made me a cuppa and we had a nice chat about my options. One option she told me about was the option to do 16 hours a week and claim tax credits and pip. It would mean a reduction in earnings. This is the option I'll go for when I feel the time is right. Luckily I have a lovely understanding employer and they've been really nice.....and I've been in some states at work.

You have to take back the control in your working situation. You could also see access to work they can provide support to disabled people in the workplace, by paying for taxis, modified equipment etc and by offering mental support and advice about how to manage your relationship with your employer. Don't feel that there is no support out there because there is. You have a genuinely difficult health condition to manage, you're doing really well keeping going with work. Rather than giving up...it might be worth exploring getting more support. Access to work have been great and my life is so much easier.....and I'm a cynic at the best of times.

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thanks for the info. I got back to work in a similar way a few years ago. was unsure if the support was still there. as had asked my previous employer before and just got a chair footstool that I had to wheel around as hordes king is the new in thing.

hoping that part time when I can is possible. I have signed up to a distance learning course so that's a start😊

I don't think your cynical it's just tough when your brain says one thing and your body says another.

take care byex

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Hi lou59

I really am so truly sorry to read this my friend and my heart aches for you. I sincerely hope that you can find something else to give yourself a purpose. Please remember that you did not let anyone down, as you have an illness that you (and nobody else) can truly control let alone understand yet. I want to sincerely wish you all the best of luck, and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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I wish with all of my heart that things change for us with invisible illness, diseases. as employers use this to their advantage " oh well you looked ok you were smiling" funding to support research and educate that's what is really needed.

no more excuses of i nhs / gp clases of opinion and mis diagnosing or denying it's existing as it obviously does all I hear is- its just fibro!! that is causing your symtoms no more ignoring the patients we know when things are not right. make it easier to access services, therapies, specialist support so we can move forward. we would all benefit so much and we could support research there are plenty of us after all.

I'm getting of my soap box now ( it's obviously a short one as my left leg dosent like to move far!!)

thank you for your thoughts ken . the comments and words left by other members has been so much appreciated at a hard time.

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Good luck my friend.

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Hi Lou not sure how old you are but I too was made to take early medical retirement, I struggled at work for years, as you say hiding the pain making a joke to colleagues to cover up. I actually told my gp to say when as I refused to accept it and knew I would carry on, well he did and honestly looking back what a relief, ok yes I miss work friends etc but health wise it was right decision. takes adjustment period but look for the positives. Life isn't over I was 59 at the time and 62 now and know now it was the right decision as enabled me to cope with some pain by resting and managed to cut pain relief meds. Hope you feel more positive soon I know the first year seemed all change money etc but it all sorts its self in the end.

Hugs sue x

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I'm 43 years. my daughters are 18 and 22 they bring me joy and chuckles. two great crazy dogs and a fantastic husband just don't see enough of him he works away.

I think I had to reach a point last week at a&e for the second time in four days when the consultant said "something has to change your pushing to hard and your risking everything" to then go back to work against medical advice to then end up crying in pain for the first time in front of management to be told there are no other adjustments. there is nothing we can do.

oh well god forbid they ever experience I'll health everything is always better in hindsight.

it would be good to cut medication down and laugh a bit morex

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Hi Lou laughter is the best medicine let's face it if we didn't laugh at our problems, we'd cry 😭. To be honest I should of given up sooner than I did I worked for a gp surgery so they were really helpful but I have to admit I feel better without the pressure of work. Good luck getting sorted i.e. I'll health pension, esa, pip etc the forms are a nightmare so get some help if you need it but eventually it all comes out in the wash xxx

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Hi lou59

I am truly sorry to hear that you lost your job. I am sure that your family will not think that you have let them down. They will be there to help give you support and try and get you feeling as well as you can. I sincerely wish you all the best for the future. Take good care of yourself. Jan 101 🤗🤗🌹xxx

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thanks Jan I'm sure things will get there. just got to waddle off and find my rainbowx

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I am full of admiration for you having kept working so long with so much pain...you should be proud of what you achieved..As others have said you hopefully will find life easier now as you can pace yourself....it's good to know you have a good family who understand...I wish you well in the future and hope we can chat again and you can let us know how you are. I found distraction in any form is good....could be film, books, music or any form of hobby...I came back to watercolour art after many years and I can lose myself in that which is great....xx

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thanks trikki glad painting is your go to. I used to as a teen in the distant past.been on Netflix as in bed at minute until my lung infection clears a bit.

got a stash of books from Xmas so number one is ready to go!

be nice to sit in garden and see the sun instead of missing it that is when we get it.

thank you for your comment I appreciate them all .take care x

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Well done for working as long as you did but life goes on after loosing employment. I know where you are going through as I had go give up employment two years ago. I really struggled a lot emotionally the first few months (and still sometimes now) but the quality of my life is much better now. When I was working my life just existed out of work, pain, stress and sleep, while now I have energy to meet my friends, do a craft course and volunteer one afternoon a week with people with altzheimer. You will find new things to do. It's easier to pace yourself without having to go to work. There is help available if you struggle emotionally, talk to your gp or specialist. I just started seeing a psychologist from the pain management team. It was a big step for me to admit that I wanted some help but it's important to give the loss and grieve a place and re discover who you are when you lost your job title and feel like you failed in life. Just want to wish you all the best for this new chapter in your life.

Hugs

Xx

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so pleased your taking part and finding enjoyment. it helps to know there is a future. it will take time to regroup and get on my swollen feet but hey ho it's got to happen. I have a lot to think about and need to set some goals or a bucket list ha ha x

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Take your time deciding what to do next in life. My mobility is really bad and don't go anywhere without my little travelscoot. Sometimes it's just learning how to do things differently and realising that things are possible with adjustments and pacing. Rest first and think of some nice things to do to cheer yourself up! :-)

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