Fibromyalgia Action UK
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The Manic Diary of Fibro Community Carer

Well i'm Rin, i work in the community looking after the elderly, i've worked in this field for 19 yrs, and the last 3 have been hard , I was promoted 5 months ago, to a more ' Admin role ' , admin my arse , i've done more call hrs than i ever did on top of the admin, So instead of decreasing my work load it has tripled, thus resulting in me being frazzled. But i'm torn, I love my job, its variety , the highs and lows of a job working with people," from the lovable old man that tells u to sod off home you've done enough ,to the hair pulling ungrateful younger woman that just sees herself as a victim of circumstance "

Today i went on visits with my co worker, we got lost in the country with an out of date sat nav map, Nothing like getting paid for driving around the countryside lost .lol

I think some days my hand will fall off with the paperwork i have to do, or my entire arm the next with the calls i do , One thing is for sure , no day is the same, maybe this is why i torture myself by staying ? All i do know is that something has to change and give , but what ?, after 19 yrs in the same field , how do i just "get another job , AS THE SPECIALIST SAYS

17 Replies

It's hard but don't make the same mistake that I did and keep going and going until someone else makes a decision and your career comes to an abrupt end leaving you in shock with lots of pieces to sort through! I really wish i'd addressed the issue of my health and changed tack so I was in a more sedentary job that I had chosen before my body started to give up.It's horrible when the decision is taken out of your hands


I agree with Amanda, I worked and worked in spite of having really bad Fibro symptoms, I worked until I literally dropped! I collapsed and couldn't work any more, I had become so ill. It caught up without me really realising just how poorly I was, this was working 12hr+ shifts regularly plus extra shifts too.

I also worked in care, had done for many many years - I absolutely loved my work, I would have done it all for free. The fact I was paid was a bonus! The old folks over the years I grew to love, it made my days seeing them and perhaps making a bit of a difference to them hopefully. :) How I miss those days!

Please take care of yourself Rinnie, don't push yourself so hard that you have no choice in the matter but to stop. Ease up if you have to, listen to how your body is coping - far better to slow it down a bit than to face stopping altogether. Having the choice taken out of your hands (the same as what happened to me) is devastating!

You're doing a wonderful job though, one you should be proud of, well done! :)


thank you both and i hear you i do, i just need to decide which way to go , this is whats holding me up, i like many others cant afford to just stop working, and i wouldn't want to, but to change means re train and i just dont know where to start


I do feel your dilema. I have worked in pre school education for the last 24yrs, (previous to having my children, other school related work) I have worked thro' the pain even tho it is detrimental really. BUT I am due to retire next July. It is going to be a struggle getting there I think. A year ago I was looking to work until 2014 when I am 65. But have rapidly had to admit, there is no way I could achieve this working in the environment I do. As I say, I know I only have to push myself for another 9 months. If I had come to this situation 10 years ago, I would have run out of steam and the ability to do my job and would have been in the situation of no job and not being qualified to do anything else. What I am trying to say in a very long winded way is; If you still have a significant number of years left when you realistically need to work, it might be better now to try and look to another career, or at least an easier option within the area you obviously enjoy working in. As Liberty says, you don't want the day to come when you suddenly find the options have been taken out of your hands.Even if you don't change tack immediately, perhaps you can look into another type of career and ease that into your life gradually, whilst letting go of the other, also gradually? I have to say I was devistated when I realised I couldn't do my job properly any longer. I have only worked with this new school for just over a year and I know I am underperforming. I think they only put up with me because they know I have just a short while left. Be a shame to put yourself in a similar situation. Especially as you so enjoy your work and must be thought highly of, to have been given promotion. Trouble is with all these jobs, the paper work is the killer!!! Best wishes to you any way. XXX


Well , alongside my full on job i have been a web seller for an cosmetic company, this has not worked out, it seems that unless your earning the company £1000's each month your not required, very poor approach in my opinion, so yet again another escape for me from my relentless job has been lost :(,

Today i intended 5 hrs , this quickly turned into 9.5 hrs, "not good i hear you "

Today i've been a carer , agony aunt , spy .lol yes a spy , and all the other stuff that goes with my life, my shins hurt like hell, but still i smile, because today i am told my eldest is to marry her sweetheart next yr, so my days will now also be filled with wedding planning :)


Congratulations on your happy news Rinnie, that's wonderful. My eldest son has just cancelled his wedding for next year and delayed it until 2015, he and his fiancee discovered there was a little one on the way, so baby is taking priority.

A spy! Wow, do tell us more Rinnie! Sounds fascinating!


Thanks , yes a spy, In my job we have to deal with all sorts, and spying on interfering and aggressive FRIENDS of clients is one of them, total surprise that said Annoying person was very quiet the whole time i was there,lol, love the effect my badge has on people lol, secondly Facebook has made it so much easier to catch carers out that try it on at the weekends pmsl

Yes babies do take the limelight , hope all goes well


Good grief does working in the community looking after the elderly involve spying, my goodness! Sounds intriguing Rinnie!

Thank you regarding future daughter-in-law's pregnancy, it's only really early days, too soon to announce it publicly really. Fingers crossed in another 4 weeks it will feel a bit safer.


You'd be surprised what it involves, people are an whole unknown entity when it comes to care, relatives , friends, services, you have to be a diplomat, lol bite your tongue and firmly put your point across. its hard work , but despite the effects it has on me physically i love care work .


Well today is a s**t day, Considering it's payday it should be good,but personally is crap, loosing touch with my husband and my marriage is suffering , Even now he fails to realize i'm not who i was, this dam condition has robbed me of that , I work i go home i sleep , (now thanks to medication, ) I keep busy so i don't have to stop and think how crap my life is in many ways . sadly the crap is outweighing the good right now . this isn't the first time we have fallen out and i feel the gap ever widening . How can i be what he wants me to be when even i don't know who i am ?



sorry admin , forgot


I am so sorry you're having such a tough time of it at the moment Rinnie, I fully sympathise with you. I had a tough year when I was first diagnosed, my hubby didn't have a clue bless him, it caused tremendous problems between us. We still loved each other, but he was grieving the old me, so was I and so were the three children too.

At this stage I didn't understand what had happened or was happening to me, so I wasn't much help to the situation. I felt like my life was over to be honest, I couldn't pull myself out of this feeling. Then having to stop the work I adored was the tin lid, I was stuck at home still grieving for the lost me and my hopes for the future.

The one thing that turned everything round was one particular day when we'd all had enough of how things were. My husband reached the point where he just didn't know what to do for me, with me, about me. He made me sit down and talk, well of course all I did was cry endlessly, he talked. He said he couldn't cope any more and perhaps we shouldn't be together any more. That was the kick I needed! I loved him, this couldn't possibly happen. It was as though someone had flicked a switch and I realised I had to do something.

I learnt all I could about Fibro and how it also affects the ones we love. I showed hubby the invaluable Spoon Theory and slowly he understood that it wasn't me being awkward or lazy, i was really ill and couldn't help it. Once he'd understood and we'd explained to the children, things started to improve straight away.

I can honestly say three years later, things are great. They are very different, but great! I can't fulfil some roles like before, but we have a good life and hubby deals with everything brilliantly. We make sure we have special together times, just a bite of lunch out when I can manage it, a short walk together, the simple things. My good days he loves and the bad days he just gets on with it and understands.

Sorry for waffling on a bit, I guess I just wanted you to see that it is possible to bring things back and work at them even with Fibro. If you love each other, it can be worked through. However, if you don't, then that's a different problem altogether. Only you know how you and your hubby feel about each other and you can take it from there.

I hope this has helped in some small way Rinnie, I do feel for you, it can feel really bleak when your hubby doesn't understand the situation. We didn't choose to have Fibro, it's a tremendous jolt to our lives, but if we deal with it head on, we can solve most things.

Wishing you all the very best, if there is anything at all we can do, please just ask. We are here for you to help and support you where we can Rinnie.

Here's a hug for you. (((hug))) xxx


thank you very much, it's just like that for us at the min very hard, we had a good talk the other day but this is the 3rd time since i was diagnosed we've hit this wall, hope we can work through it ,, whats the spoon theory?


The Spoon Theory is a brilliant article which explains how we are affected by Fibro. It is brilliant to show our partners, children and family when they don't understand a thing about having Fibromyalgia. I showed my hubby and children (adults), and I never needed to explain how I felt again, they understood. You can Google it or type in The Spoon Theory into the search bar on the top right and it should come up for you. Any problems please give us a shout and we will post a link for you Rinnie. :) xxx


Not a good day again, my ankles have both swollen up and i'm getting pin type pain in both shins and ankles, I have 2 trips to hospital for my daughter this wk, miles of driving , Then i finally get my dog to the vets about a wart on his eye and it turns out to be a Malignant Tumor, just wonder when it will end and some good luck will come our way .


well i have been taken off the Amitriptyline , which was helping , to try Gabapentin, this is because my a*s of a doctor wants to try these before he refers me to a pain clinic, i just hope that i am not left with the no sleep nights again , nt sure i could cope . So bad yesterday i even started job hunting , still looking for the perfect job, that mythical thing i desire to save me from my own stubbornness


Not been on for a while, as the title implies lol, manic, well i'm back on the Amitriptyline AND gababpentin, yesterday i maxed out all my meds, my cold has returned and i had a busy day , ,ended up calling in sick and spending the day in bed

On a good note i am trying to get out of my job, i have started selling Forever Living Products from home, it's slow but i hope my escape from my current job . All i can say is bring on the New Year as this one has been downright vile for me .


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