Work, what to do?

[JennyHJ]

Hi all,

I know people have covered different aspects of this in various posts, but feel overwhelmed with it all! Although you all seem really knowledgable and so supportive.

Suffered with pain for over 16 years, 12 years ago, I became so bad (whilst pregnant with my daughter), I was left with severe mobility issues (problems with hips and pelvis). Started using a wheelchair and started working for the organisation I work for now, 10 years ago. I work part time to help with my pain and fatigue. But over the years i have really suffered with my joints. Having swollen and painful joints, that were just passed off as arthritis and was given more pain relief.

The flare up of my joints have been happening more and more often over last few years and normally a bit of rest (a few weeks) would sort them. Last September I really started to struggle, I gave up my voluntary work, which I had done for over 5 years, limited myself to hardly going out, but really started struggling at work. Told work I was really struggling and they re-deployed me and swapped my hours (although hours more for them, than me). But was told with this job, I couldn't keep having time off and I had severe reservations, as it's not a nice environment to work in.

Alongside this I pushed for an appointment with rhumotology and was told unless the tests they were doing showed anything else, I had fibromyalgia. Some tests are back, showing I'm positive for lupus anti-coagulant and my MRI has shown more 'wear and tear' to my lower back, hips and pelvis, as well as bulging discs. But doctors are still waiting for letter from rhumotology with recommendations.

I already take dufloxetine -60mg, co-codomal, parecetomol and pregablin - 75mg (but both the dufloxetine and pregablin were given for mental health, I have cyclothymia, although they do help with the pain). I also have codeine phosphate when pain is bad and zopiclone and diazepam, when my anxiety is bad.

I've started acupuncture which is helping (paying privately).

But the reason I posting mainly, is to get some advice about work. I move jobs in December, but was still really struggling with pain and fatigue. But alongside this, I was been micro-managed and then been pushed to do more, despite leaving my other job so I wasn't physically been pushed. Then I asked for time off for school holidays and there was a big hoo ha, basically saying they needed to check my holiday card to check they were all accounted for (I think this was more that the organisation is so overstretched, they didn't want me off); but at this stage I lost the plot, I could hardly physically function and just felt like I couldn't do anything right, so went on the sick with 'stress and anxiety' for 5 weeks. Although work kept presuuirsing me to come back and making me feel really guilty. Office has had a move round since and think that's made it harder to be micro-managed, but when I was due to go back, I physically was so drained I could hardly function, so signed off again for 2 weeks. Been made to feel really guilty and was told if this job was no good for me, I need to leave and go on ESA? I am really upset about this as feel they are pushing me out and I also believe if I just leave I am not entitled to benefits?

I also do a part time uni course and work throw this in my face, saying I'm doing to much and should be just happy with work. I do 2 hours a week at uni and if not up to it, I work from home (also done it for 4 years, so it's not new and is hardly the reason, I can't function properly).

I've emailed to say I am not making any rash decisions about my job, I want time to find out what is wrong with me and to start a treatment plan. Then I will know if I can return to work (but if I can't I want them to medically finish me, although haven't said this yet). The worst thing is I work for a disability charity and I think they are hoping I will just go away, as it won't look good if they have to medically finish me; That's why I think they are pressuring me to leave?

So I'm due to go back to doctors tomorrow and we are hoping letter has arrived from rhumotology, then we may have some answers and I may have some hope?

Can anyone give me some advice about work, I feel so upset as I've given my all to this organist ion, working extra unpaid hours and working days I don't normally work etc.

Please excuse the spelling, couldn't find a spell check option?

Looking forward to hearing from some of you. Thank you in anticipation? X

[Hidden]

To say to you that you cannot have time off work is ludicrous-you must put in a sick note from gp or consultant that covers your job, employers are not allowed to harrass you this way, maybe find yourself a welfare rights officer locally and make appt.

[Mdaisy]

Hi JennyHJ

I read your whole post and I am sorry you are experiencing this extra stress whilst being poorly. I am shocked to read an employer is suggesting you give up and go onto ESA without discussing ways to help you like reasonable adjustments and to read it is an organisation helping the disabled is possibly even more surprising! However, saying that I worked for the NHS and before I was diagnosed with Fibro (as tests were taking so long) I was told without a diagnosis I was to be let go!

It seems as the diagnosis of Fibromyalgia is not always viewed as physical and that some wrongly believe it to be psychosomatic we all suffer under this false belief in all aspects of our life. It is so wrong!

I would consider speaking with the FMAUK Benefits Advisor, as she can also advise on work related issues. All contact information and other helpful websites can be found via the link below;

healthunlocked.com/fibromya...

I sincerely wish you all the best

Emma

[JennyHJ]

Thank you both for getting back to me. I've just emailed Janet, thank you. It's true what you said about it been seen as psychosomatic, I think they just think work feel I can push myself and I'm choosing not to? Some days I can hardly cook a meal and that includes just putting a pizza on a tray.

I'm trying to focus on my health at the moment and not think about work, but find myself stressing about it. I know from what I read on here, I'm not the only one and I'm not sure if that's of comfort, knowing I'm not the only one to be treated in this way ?

Thanks again for getting back to me. I've only signed up to group a few days again and feel I've a weeks the of knowledge already, but also feel overwhelmed with it all.

Thanks again for the replies and will keep you informed.

Xxx

[Mdaisy in reply to JennyHJ]

Hi JennyHJ

Great to hear you've emailed Janet and I hope you are able to sort this situation out as easily and as quickly as possible without impacted or exacerbating your Fibro. Sorry, only just seen this reply as I checked back to look at the thread. Helpful hint if you want to reply to a specific member you can click the reply under the person's reply or you can tag using @username for instance I would be @ Mdaisy without the gap.

How to 'tag' people is explained in the link below;

support.healthunlocked.com/...

I'm glad you feel your benefiting from the group already that's lovely to hear

Look after yourself

Emma

[JennyHJ in reply to Mdaisy]

Thank you for your support and explaining a bit about replies; I didn't realise that. Yes I'm hoping janet may be able to help, it's so stressful!

Thanks again,

Jenny xx

[SonyaW]

I’ve had to keep my manager informed and he wants to know a few questions of what adjustments they need to make as well as if I can return full time and phased return and will I need more breaks etc....he also wants to try to have a face to face with me later this week after Doctors and support worker has been so got to email him later and arrange what day I can get someone to take me in. I have a nice employer and feel extremely guilty about not been there but know that it’s stressing me out and feeling like I’m letting them down as don’t think I can fulfil my workload and worry that I’m going to get tired easily and I’m dealing with other people’s bank accounts (big responsibility) no room for a blip and quite demanding. So I know what your going through.....I’m also in same dilemma 😢

S x

[JennyHJ]

That's good that your manager is so supportive. I wish mine was, as at least it would be one less thing to worry about. Fingers crossed we both start to feel a bit better soon!

Warm regards,

Jenny xx