RA and work

PenJ

Hi all,

This is my second post, so still new at it all, hope I'm using the forums right :? .
Am still in the early days of sorting my RA symptoms, the meds are working but the fatigue still comes in waves. I'm wondering how does everybody cope at work? :?: Do people take time off when fatigue bouts hit or do you just keep going and try to recover in the evenings?

I have quite a fast paced job and it can be physically tiring at times, I'm only part time 2 days a week but then I have my 2 kiddies under 4 to look after when I'm not a work.

I'm just trying to get a feel for much I should just suck it up and get on with it and wait for the meds to work, or how much I should take the pacing it advice and rest when I need, cause currently If i was to listen to my body i don't think I'd ever feel up for work.

Any advice or tips on what you've discovered works for you would be greatly received

PenJ

applerose

Hi Penj. Everyone is different. I am not affected by my RA as much as some on here. I still find it difficult to work at times (I'm a housekeeper). Fortunately, I am able to slow down if I need to and have only taken time off if I have actually been ill. I do usually sit all evening because I am too tired to do anything and catch up with my own housework at weekends. Have you explained to your boss how things are? Could you change your hours to suit you better? Do you have anyone at home who could help out more if necessary?

stickywicket

It’s a long time since I did the RA-plus-two-small-boys thing but there’s no way I could have managed paid work at the time. All credit to you, PenJ, that you do.

Pacing yourself and learning to understand what your body is saying to you are all part and parcel of coping. It can take a long time to get the hang of it. Sometimes you’ll be able to override your body’s demands for rest but use that card sparingly or it’ll come back to bite you on the bum – and other places.

When my two were little and still took a nap in the afternoon I was often asleep before them. Play it by ear. Try to be as flexible as possible in your plans and routine. It all takes some getting used to.

Starburst

Hello PenJ,

I don't believe we've 'met' yet, so welcome to this wonderful place. The early days are tough; physically and emotionally. I nanny part-time, so I know small children are very hard work, so even without RA, I have seen first hand that it's difficult to balance work and family life.

For me, I used to take time off before I totally burnt out. If this is possible for you, I would highly recommend it. These days, I'm at uni and tend to push myself to the very edge and this has made me iller. It's taken me since May to recover. I'm sure you've heard and will hear a lot about pacing yourself. I would always suggest approaching everything in small chunks rather than cramming it all in at once and then wishing you hadn't!

Do you have support; people who could help out with your children? I'm also wondering how supportive your place of employment is? My other recommendation is to ask to be referred to a pain clinic. You can learn different coping methods; pacing yourself, fatigue and pain management as well as generally working through various strategies. It's all quite individualised, what works for one may not work for another. It's frustrating but it does take time to find out what works for you.

All the best of luck!

LignumVitae

I did do the evenings and weekends sleeping to recover for work before I decided that was no life. If possible, could you work from home? I do that twice a week and reducing the commute helped no end. I also start a bit earlier than my colleagues which means by the end of the day I am not as zombied and I am making the most of my morning dose of meds rather than desperately waiting for the evening dose to straighten me out.

Mr LV does lots around the house and I tend to work in fits and starts so when life is good, I fill the freezer, when it isn't so good, I empty it. Making sure you aren't coming home to lots of work also helps - planning helps there but I guess children can only be planned so far. Giving yourself an allotted time of rest when you get in is pretty useful too. Get the shopping delivered, don't be precious about ironing and generally accounting for your energy really helped me get things under control a bit. I get annoyed that I have to do that sometimes because I'd love to be more spontaneous but I can't always (poor Mr LV has to keep up when I can though).

Over time you get better at sorting it out and working with the fatigue instead of it winning. Next time you see your consultant or rheumy nurse this is definitely worth mentioning as they may have ideas or different meds to try.

Well done for all you manage, sometimes it is easy to see what you can't do and miss how amazing you are doing even trying to carry on!
Good luck, love LV xx

barbara12

Hi penj
The others have given you good advice, I just want to add my support and say welcome to the forum, and I do wish you well with everything xx

PenJ

Wow! Thank you all so much for the support, it really does help!

I have told my employer, they are supportive, but the work load is always there and while they want it help, the pressure to get it done doesn't go anywhere, so think I should make a bigger deal of it rather than "coping" at work and then suffering at home.

I do have a very supportive Mr PenJ and he does most of the things around the house at the weekend, ( makes me feel a bit guilty after him working hard all week too, but thats as it has to be) my lovely mum has bought me a cleaner to do the bathrooms and floors every other week which all really helps - think as you've all said, it's an adjustment to my 'normal' that is going to take time.

It's so nice to hear that it's not just me being pathetic or that I'm making it up in my head. I'm going to try and pace myself more, accept help when it's offered and make a bit more of a fuss so people know I'm not coping that well.

Thank you again everyone, lovely to meet you x