Don't know what to do!

[Kezzaw1990]

So I'm at the stage where i don't know whats best to do last week i worked over 45 hours I struggle to say no or phone in sick because I end up getting getting anxious and it makes me worse I had lost slight feelin in my right side and still worked through ended up at a&e today.. told me could be nerve damage or nerve pressure.. constantly feelin sick...tired and worn out.. Im only 30 and the thought of giving up work kills me.. I've tried to look for less physical jobs but so hard when ur not qualified in them areas.. I spent the whole Bank Holiday tryin to rest and do slight exercise and it's just done me over... I don't think I have come to terms with how my life has changed 😔 sorry for the rant and what not..

[Hazel_Angelstar Administrator FMA UK Staff]

Hi, it can be very difficult coming to terms with how your life has changed due to having fibro. You can go though a grieving process, where you experience various different emotions - relief at having a diagnosis, anger at how your life has changed, frustration because you cannot do things you used to do, denial that you need to make lifestyle changes to manage your health. Gradually, many of us then come to acceptance of what is happening and it is when you accept that you can take control of managing the condition.

It's not easy, and there is lots of bumps along the way - but it is possible.

Is 45 hours your contracted hours, or do you end up working overtime because you don't like to say no?

You might find the FMA UK employment booklets useful at fmauk.org/publications

[Kezzaw1990 in reply to Hazel_Angelstar]

So 45 is contracted but I end up staying so sometimes it's over 45 hours.. but I need to start sayin no... thank you for responding and I will look at that booklet.. I think I find it hard because I am only 30 and feel like.i shud be doing alot more. Thank you again

[Hazel_Angelstar Administrator FMA UK Staff in reply to Kezzaw1990]

Yes.... Getting over the "I think I should be doing more" hurdle is a hard one. Especially when you are younger and all your friends are busy getting on with life xxx

[Kezzaw1990 in reply to Hazel_Angelstar]

It really is hut I took the first hurdle and gonna reduce my hours x

[Hazel_Angelstar Administrator FMA UK Staff in reply to Kezzaw1990]

Good luck x

[Debbiedo49]

Hi, I've had fibro for a number of years and you definitely go through the grieving process because you just can't do what you used to do. I work part time and even that exhausts me but we are all different. You should talk to your kind manager or h r and let them know about your health. They should be supportive of you staying in work and be flexible within reason. It's down to you to know your limits and stick to them. It took me a long time to tell my employer as I felt that they would see me differently. But you can't control other people's reactions and your employer has a duty of care to you. I would start by saying to your manager that you need to stick to your contracted hours with a view to reducing your hours due to health reasons. Good luck

[Kezzaw1990 in reply to Debbiedo49]

Thank you.. yea I have had this chat I was previously in a senior role so my first step was to step down and if that didn't help then to reduce hours.. but yes I've had it years now but jusy doesn't seem to get easier I think that's my problem i worry to much om what other people think.. thank u so much for your response x

[Deeb1764]

I am older but also have RA and then 2 weeks ago told I had fibro to add to asthma and OA so a lot going on in 2 years. I pushed and pushed myself thro work and landed up a mess. I now can see I should not have done this. So though I hated it I took redundancy in Nov not that we could afford to lose my pay but I needed my sanity back and to stop pushing my body to the point I was breaking.I am sorting my meds diet and exercise out so I can go back to work in hopefully the autumn but only 20hrs. But I have put me first.

Talk to your HR see what compromises you can reach to help you thro this.

[Kezzaw1990 in reply to Deeb1764]

I think that's what I keep thinking i can't afford it but your right u need to put you first well done for doing that as it is very hard.. sorry to hear all your goin through and I hope.it all gets better for you so you can go back to work xx

[Deeb1764 in reply to Kezzaw1990]

I was lucky hubby was ' you first anything else can just wait'

[saluhouse]

Hi 2021. So sorry you are having such a tough time.

This is probably going to sound bonkers - but how I see it is that at first your fibro whispers and tells you something is wrong. If you don’t listen - it starts to shout. If you still ignore what it’s telling you - it starts screaming. That’s where you are now.

You can’t will it to stop. You have got to negotiate. Can you take some sick leave just to give yourself a chance to recover? Then can you find a way to work around your fibro so it doesn’t wipe you out. Maybe talk to your employers about reducing your hours or changing your role.

Look into other ways to manage such as diet/pacing/stretching. Loads of helpful suggestions on this forum.

Maybe accept that Fibro is trying to communicate with you. If you pay attention it might just shut up!

Wishing you well. Xxx

[LoneEra in reply to saluhouse]

Absolutely. I worked myself into the ground and it took my specialist to intervene for me to listen. He said “if you don’t stop and take some time out, you’ll soon be back here in a wheelchair and unable to work for about 2 years.” I listened. I cut down my hours. And I took the time away from work that I needed.

[waylay in reply to LoneEra]

I pushed myself so hard that I've been unable to work for 12 of the past 14 years. Listen to your body, or it might do something even more drastic to get you to stop...

[Kezzaw1990 in reply to saluhouse]

Thank you this is actually a good way to explain it.. I think i do need some time out tbh with u thank you so much xx

[LoneEra]

You’ve had some good advice already. I think a chat with HR is sensible and then some time off and some reasonable adjustments.

I’d also recommend doing some work on saying “no” to people. Just try it once for something very small and see how it feels. Then try something bigger. It gets easier and helps you not be so stressed.

I’m also wondering what meds you’re on for your fibro. Do you think they’re working? Maybe they need reviewing, alongside the job? Xx

[Kezzaw1990 in reply to LoneEra]

Rhey have recently put Mr on gapapentin they have just used it yesterday so fingers crossed.. I am going to take all this advise on thank you guys xx

[Hidden]

Darling you need to rest. You need to rest and recoup and start thinking about yourself for a change.

[Kezzaw1990 in reply to Hidden]

I know I qork in childcare aswel so it's very physical I just find it hard to stop of that makes sense and I was in hospital yesterday and felt guilty phoning in so back in again today think I'm.my own worst enemy x thank you

[Makie-Uppie]

22 years I did the same I have never and never will recover. My life is now a kind of living hell and most people only see the tip of the iceberg, my advice is get out of the situation as quick as you can before it becomes at best permanent or at worst lethal.

[Kezzaw1990 in reply to Makie-Uppie]

I really need to I need the power to do it but ur right thank you x

[Midori]

I agree; when I was first diagnosed I tried to power through it, but it soon let me know by ramping up from 'annoying' to 'excruciating'. I was a nurse at the time, so had to find another role.

Now I do a bit, then rest, do a bit, and rest again, through the day. I'm retired now, but still tempted to overdo things!

[Kezzaw1990 in reply to Midori]

Yeah I get that I'm in childcare but ur right I can't over do it I think I need to get myself stronger and out me first thank you xx