Putting your health in jeopardy for work

[HawthorneBerry]

Fibro sufferers out there who are still holding down a job....well done! My question is this....what are your coping strategies/ pacing methods and how do you combat the negative vibes you receive from work colleagues when you simply have to say ‘ that’s me done for the day, I’m going home’. All comments and insights will be very helpful. I need some help with this one xxx💛💚💜

[Hazel_Angelstar Administrator FMA UK Staff]

Hi, I work part time admin for FMA UK - so I'm in the fortunate position that I never need to explain my fibro to bosses/colleagues and don't have any negative reactions.

I've been working from home since march last year , which has definitely benefited my fibromyalgia and general health.

But generally (pre lockdown) my coping strategies are work 3 days Mon, Wed, Fri so I have a day between to recover, working hours 10.00-3.30 , allowed me extra time to get up and moving in morning and avoid travelling springs rush hour, access to work did a desktop assessment when I started and paid for my ergonomic memory foam chair, ergonomic keyboard, mouse pad and foot stool.

I'm able to plan out my workload, so that I do tasks that need more attention when I'm at my most alert, and try to avoid having stressful deadlines to meet.

Before lockdown, I also had the option of working from home if my health wasn't up to making it into the office.

You may also find our new employment booklets useful at fmauk.org/publications

[HawthorneBerry in reply to Hazel_Angelstar]

A massive thank you for your reply and for the link to the reading material. I’m really grateful! You sound like you’re managing the best you can with your work situation. Your insights have given me a lot of good for thought. I knew I’d get good advice. Thank you again xxx💚💛💜

[Hazel_Angelstar Administrator FMA UK Staff in reply to HawthorneBerry]

we now have some printed copies of the employment booklets available - if you feel, it may be beneficial to have a copy to pass onto your employer/colleagues, drop me a PM and i'll arrange to send next time i'm in the office

[HawthorneBerry in reply to Hazel_Angelstar]

Thank you. I would definitely be beneficial for me xxx💜💙💛

[GrumpyTired]

Hi Hawthorne,

This is a constant struggle. I've used a variery of coping strategies depending on where I work and I rarely feel like i'm winning - I love my work but also want to run away on a daily basis

Negative feelings from colleagues dissaproving is difficult - It made me overwork for years, I felt I had to legitamise my position. As I've gotten older/more experienced I've realised I can be quite effective if i choose my tasks more carefully - depends what your job is like really.

Tactics i've found have helped me:

Dissapear during work breaks. I like to find somewhere non stimulating. I probaly come across as really aloof but being "on" all day aggravates symptons and low sensory time helps.

Move from employment and into self employment. Now I can work from my own space that's setup to be quiet, distraction free and private. Few people need to see me looking lousy, and I can adapt my schedule, do wierd hours etc.

Moved the office closer to home. I no longer need to commute which saves me a lot of energy, but is just nicer all around. Now a 5 min walk to my space.

Try different working patterns. When i'm feeling unwell I cut down a day or two. If I'm managing ok then keep working days a bit shorter - 9:30- 4:45 works ok for me most of the time. If i'm doing project based work I book in some down time afterwards. These are all benefits of being self employed that weigh against the stress of finding work but on balance I think it works better for me.

Pace your day by planning regular breaks. Ad hoc pacing never works for me, i have to enforce a structure for it to help. I work in 1.5 hr blocks, with upto 30 min breaks in between when i'm unwell. I might just sit quietly for a bit, listen to music, bit of stretching or do some mindfulness type things.

[HawthorneBerry in reply to GrumpyTired]

Brilliant advice and coping strategies. I’m going to try those out....well the ones that I think I can manage at work. The rest break technique sounds good. The only place I can generally get away on my own when I’m working with other people is the toilet. That is where I usually break down in tears before re-emerging tear free and with the pain hidden from my face. My job is both physically & mentally demanding. Got a very long, exhausting, stressful and strenuous week ahead but I’m going to manage it the best way for me and my body. Say a little prayer for me! 😂. Thanks again xxx💜💙❤️

[josieb]

I’ve found being brutally honest about Fibromyalgia helps. Most people know someone who suffers pain. And when they realise although you look fine you’re not they can sympathise. After being made redundant after working part-time for 10 years I tried working full-time for a year. Never again. I was too much. The commuting, the long hours I realised it was far too much (and that was with employing a cleaner for home). When I was having a flare I’d ask to work from home and then spread my work over longer hours. But that wasn’t always possible. So I really struggled. I found I got negative vibes from the people who gave negative vibes to everyone for any excuse. It wasn’t just targeted at me. I ran a session at each of our monthly meetings about various health issues - mental health, mindfulness, silent illnesses. And that was received very positively. I had one ‘dementor’ leave a session in tears as she realised she was suffering depression and had only just realised. That was a turning point for her and the nasty comments stopped. Can you ask for similar sessions to be organised? I am now working 2 days a week, with a day or two off in between.

Could your employer offer flexible working. One day in office, one at home.

Hope you get sorted. Good luck hope it gets better for you.

[HawthorneBerry]

Thanks for your reply. I’m trying to stagger my working week more and doing less hours too. I’ve got a really long week ahead though so that’s why I wanted to reach out and get other peoples experiences. Our workforce is very small. I’ve worked with predominantly the same people for over 20 years and I still have to explain myself. I’ve given up trying to get much empathy if I’m honest. And I’m not prepared to keep justifying why I’m feeling poorly. That makes me feel worse. I’m glad to hear that your response from your meeting was positive though! Well done. Thanks again for your reply xxx🧡💜💛