I'm a bit of a newbie to the group and PsA (thanks for allowing me in!)
I just wanted to find out how you guys deal with working whilst trying to get through the pain!?
I think I'm currently in the dreaded 'Gap' and waiting for my meds to start doing their thing properly. (Sulfasalazine with Celebrex)
I work full-time in the City and travel from Essex (about 90minutes door to door) and was REALLY struggling earlier on in the year... I spoke to my bosses and they agreed to give me 3 months trial working from home 2 days a week to try and ease the stress on my joints.
Those 3 months are up, and the boss ideally wants me back in the office 5 days (We've managed to agree 4 days for 10weeks as a further trial)
The problem is, I'm not actually feeling much better! My mood had improved and I was feeling a lot less fatigued for a bit, but I feel like I either have to be in agony all the time so they can see that, or otherwise everyone thinks I'm fine and therefore no problems, back to the office and travelling full-time!
I just feel it's really difficult for people to understand what's going on (myself included sometimes!) as you cannot see any physical issues (to anyone that doesn't know me I just look normal with a funny walk some days!) And I'm struggling with whether I let people see I'm sore and fatigued etc etc or pretending to be okay-ish (which I'm pretty good at but doesn't allow others to see what I'm struggling with)
My main problems are with my knees/hands/wrists and starting to move into my feet too now :( I think I have Carpal Tunnel Syndrome too linked to the PsA and am heading for an EMG test in a few weeks time...
I'm also considering seeing a Nutritionist and wondered if anyone knows one worth seeing/any ideas for what can help etc that aren't going to break the bank?
Been in a constant fog for a few days now, and struggling to keep up :(
Just wondered if anyone has any tips about, well, anything really?
Thanks so much :)
Hello Stephia, welcome.
I can certainly understand how exhausting your commute is, I did the same journey (from Norfolk) myself for a long time and my hubby still does ..... it takes everything you've got and that is when you're in good health!
Have you got a helpful and supportive GP? You probably don't want to have to go off sick but certainly your GP's support for working a reduced week would help. And does your company/HR have an occupational health team/advisor you could speak to?
One of the hardest things with PsA is that we can look ok on the outside when we're hurting on the inside and that makes it so hard to explain to those around us what is going on. There are a few posts/discussions on here about how to explain PsA .... try the search bar.
Good luck with your EMG and hang in there.
Thanks for the message - It definitely helps to know I'm not the only one whose had troubles with this (not that I expected I would be of course!)
Unfortunately my GP(s) haven't really proven their worth thus far, but I do have a fantastic Rheumatologist who did say at the last consultation he would be happy to support my reduced working week (working from home though rather than just days off).
My workplace is a small(ish) family run business and although we have an external HR person there's no occupational therapists or anyone like that. He did say he'd suggested to the Directors to see one when reviewing my 3 months, but they apparently didn't seem interested (perhaps because they already know they are more likely to support me too). In all fairness they're not being awful about it, just a little old fashioned about people working out of the office I guess and so a bit dubious... and I think today I'm just having one of those extra bad painful, low, emotional days :( ~So struggling to keep it together a bit!
A nice chat and cry at me Mum has helped too (as always, bless her!)
I'll definitely check out the 'how to explain PsA' discussions as am very interested in how to get across to people how I'm feeling.
Thanks again, much appreciated :)
Ok, well hopefully with a small family firm you stand a better chance of being able to get information about your disease across. Let me have a think and I'll get back to you .... had a bit of a nightmare day today ..... and for once it wasn't PsA related!
Stephia, I get tired just reading about what you are coping with.
I don’t remember if I suggested that you consider getting the book that I recommend in BOOK REVIEWS. It’s a great guide to the disease, written in pretty understandable terms. Great commuter reading, if you take the train. If you drive, I wouldn’t suggest that. LOL Anyway, the e-book is a bargain and if you don’t have a kindle, you can get free software for your PC or tablet that will let you read it on screen.
BTW, my carpal tunnel was linked to my PsA. Once I got on the proper treatment, the symptoms pretty much melted away.
How is your search for a rheumie going?
Yes did see the book and ordered it earlier today so should be with me soon :) - Bit of a physical book lover I'm afraid, although fast running out of space - lol :\
Thanks for the note on your Carpal Tunnel - definitely puts my minds at rest on that for a while.
Already have what I consider a good Rheumatologist, thankfully! Been trying out a change in my meds and don't think they're doing much good so think I'll be popping back to see him soon enough as it goes... :) (Still a little confused about all the different meds that are about mind you! - Getting there...)
I recently returned to work (phased return) after being off for over 3 months. During that time I have started humira. It has helped a lot but I have been unable to get back up to full time. I work in a school and my job is not really physical, but I have still found fatigue followed by achiness descends on me especially if I attempt to do consecutive days. The headmistress had been completely supportive and as we are near the end of term, I probably won't get back up to full time. I have decided to go on a part-time (0.5) contract from September. Again the headmistress is being amazingly supportive allowing me to stagger my days each week. I also work with some very kind people who always seem aware of my limitations and rush to help if they see me attempting anything too physical. Even the naughty boy students I work with have shown uncustomary kindness-lol. So, I hope that this work pattern coupled with decent medication will help me to continue to work for a few more years without having to keep going off sick. It is just fortunate in my case, that I'm not going to struggle too much from the drop in income. If your job allows it working from home a couple of days a week will help you a lot to be able to maintain full time.
Thanks for your message, each little insight is so helpful right now!
Unfortunately I'm the 'bread winner' in my house at the moment, and whilst my partner is really supportive about it all, I can't particularly afford to drop my money at the moment as he works quite low hours on minimum wage (which is ridiculously low at the moment!) :(
Again thanks for the info - slowly taking it all in. Glad to hear you've managed to get back to working a reasonable amount. :) Seems reading through a load of these discussions that a lot of people have had to at least cut down their working hours and slow down on everything a little bit, which is such a shame. Here's hoping I can get it under a bit better control sooner rather than later :)
So sorry it's taken me so long to reply - my time to get on here is somewhat limited :|
Thanks so much for the comments, all very helpful. I absolutely am not looking to stop working, I feel I'm too young and have too much ahead of me at the moment, so as you say I'm just trying to figure out what (in terms of less stress and strain on my body) that will help me for the time being until I'm feeling the benefit of the drugs, so that I can carry on as normally as possible.
Will definitely be speaking to my Rheumy about it as he has already said he would write to them with his opinions, and also may chat to him about Biologics (Still not entirely sure what they are!)
Got the PAPAA book delivered earlier in the week, as suggested by many users... so planning to start having a flick through that later this week, which I'm sure will help too.
Been speaking with work a bit more this week and trying to explain what the main issues are, we're trying to come up with things that will help, but not necessarily put strain on other members of staff too (last thing I want to be happening). So going to trial this next few weeks working from home on Wednesdays to give me a break from the long journey mid-week (at the moment I'm doing Mondays at home, and then 4 days travelling into Town) and leaving a bit earlier to avoid the rush hour madness that descends every night! Hopefully both those will help. :)
Fingers Crossed. Again thanks for the info/tips :)
P.s. Did my hair Deep Pink and Green last week - New colours! Do kinda miss the blue already though! I'm not sure if I even know what my natural colour is anymore! Still, bit of fun :)
I know this is probably late to add to this discussion but I am getting to a point where I am facing the same problem as you. I am the main earner in the house and must say love my job but it can be very stressful at times.
The MD has already said to me not to come to work if feeling too bad and this was echoed by his second in line but ..... when it actually comes down to it the second in line is not too keen for me fo work from home (which I can do quite easily). Bit of a case of "saying the right thing" but not really meaning it.
Thing that really gets my goat though is that perfectly healthy members of staff can leave early to get changed or get their hair done before going on one of the regular staff nights out......sheesh......I could crush a grape!
Well.....I could if my hands didn't hurt quite so much :-)
Hope you have things sorted now and I'm right behind you on the same path.
Thanks for raising the discussion, everyone's points made for interesting reading
Stephia, Ali, Nifty it’s been ages! How is everybody getting on?