I know I will struggle to stay in control

LignumVitae

I'm definitely on a better plain than I was for most of last year as the Humira seems to be helping. Alas, things are not where they were before the loss of control/ mega flare did it's thing and consequently, lots of things are harder than they used to be and I suspect will remain so from the way things seem to not function very well anymore. Top of that list is typing and working. I've worked from home since July but I am hoping to start back in the office soon and I have an appointment with an Access to Work OT next week so hopefully I can find something (possibly tablet based) which will make working on a computer easier. My problem is the expectation of others, particularly my boss. He has been very supportive through this but I know he will, understandably for those not in the arthritic know, expect a new computer and the meds to return me to the old LV.
I know I will struggle with his expectations and to remain in control of putting my problems first in order to keep things on the level rather than meeting his expectations. Whether he means to or not he can sometimes be a bit of a bully when he is stressed or is behind and I have always been the go to person for getting a job done under immense pressure (I'm not showing off, it was always just part of my job and suited me that I was behind the scenes and not having to be all chatty with clients - I'm rubbish at that). A work related expectation definitely helped me go nuts and get into such a bad state before I admitted things were as bad as they were so I know I have form for this...has anybody got any advice on how I stay in control? If you can even understand what my post is about? I' not sure I'm articulating very well here. I'm quite fearful about it all especially because I have been told this morning that work is coming my way that I know I will struggle with because it will require much dexterity.

stickywicket

You're post is, essentially, about arthritis+work-induced anxiety, right? You are stressed. You are worried. You are by no means the first on here to be so faced with a return to – dare I say it – 'proper' work but each has to face it alone because it is different for each one.

I've no idea how it will be for you, LV. I never managed to return to any sort of paid work after the birth of my first son and I admire anyone who combines an auto-immune arthritis and the workplace.

It seems to me you are worried about two things – your own physical capabilities and your work colleagues expectations. If you could ease yourself in gently, in any way, that might help on both counts. As for fingers – we are all different. I cope best on a 'proper' keyboard (If you do too you can always plug one in to your laptop.) I'm not so good on a flat, laptop keyboard and only my nearest and dearest can interpret the results of me on a touch keyboard after a glass of wine. Experiment and do whatever's best for you. Take breaks whenever you can. Look at AC's booklet on exercises as any that counteract the muscles you'll be using a lot will help.

As for colleagues and bosses – maybe try not to go like the clappers from the start in an effort to prove you're up to anything they are. Visual aids are no bad thing. If you need wrist splints et al during a break then use them. I hope the OT can help. Maybe ask for a further chat one week in.

I suspect the reason why your boss has been so understanding is because you are a huge asset to him and all of them as you are to us.

LignumVitae

I think my biggest worry is how I say, especially in front of other colleagues 'this is too much' or 'I'm struggling to do this task'. I know I will feel guilty about that and I know that my limited ability to type will look quite odd - I was always the touch typer who could blast words out for fun and I just can't begin to do that now.
I'm hoping a touch screen will be easier for me fi I map things - I do a lot of mapping, often on a deadline and at a very fine level of detail (occasionally less than 1:1 scale) which at the moment requires lots of clicks with a tracker ball - I think that kind of work will be a lot easier with a touch screen because I won't be stuck clicking on a tracker ball with my hand in one position all day long sometimes for weeks on end.

Thank you Sticky, I think my boss does see me as an asset and I want to remain one rather than being a pain in the asset to him by being a prima donna 'I can't possibly do that task' kind of worker but I know there are things I wont be able to do or at least they will take me longer or end up being shorter.

stickywicket

You? A prima donna? Forget it. You lack every qualification

I can only suggest that you just be yourself, don't try to be your former self and, if anyone has problems with that then the problems are theirs, not yours.

And please keep us informed as to how it's going.

And remember you'll be struggling to work under an avalanche of forum (((())))s

theresak

Hi LV,

First of all I'm absolutely certain you would be an asset to any workforce, & I'm sure your boss won't want to lose you. The thing you will find hardest is actually saying 'no,I can't manage that just now.' My very wise GP said only hard-working, conscientious people feel guilty at saying no, and I believe he was right, but you need to be able to do that, and not bite off more than can chew. You have to be fair to yourself.

I was medically retired when things became too much, but I was a lot older than you and my sons were grown-up & had left the nest.

Good luck,

Tezz x

LignumVitae

:oops: Thank you Tezz and SW. It's the saying no, not feeling guilty and not being embarrassed, apologetic or annoyed at saying no. It's easy to do at home because I feel like I am in my own office and working at my own pace but I suspect in the office, with others around, particularly if it is on a deadline I will feel like I am letting people down. Still, I'm just going to have to give it a go aren't I?! I have an appointment on 18th with my consultant and my office is closer than home so I thought I would try being in the office that day and take it from there. I just don't want to feel like I am always saying 'remember my disability' rather than yes I can but I guess I have to remember it and maybe sometimes remind others of it in order to remain at least a bit productive. I'm determined to work for as long as I can but to do that I need to remember not to push too hard because we all know what happens when you try that one with arthritis - it pushes back, harder.

stickywicket

You've grasped the theory perfectly. All you have to do is put it into practice. And then keep on putting it into practice.....

First installment ((()))

scattered

You and I, like many people with chronic illness are supremely rubbish at admitting we need help and 'can't' do what other people expect us to all the time. I think this is the hardest lesson we have to learn and one of the biggest obstacles we face in our working lives. I haven't cracked it, but I have got better at telling people when things are too much.

As a general rule, at work I don't mention my RA or other wonky bits unless I have to. Because of this approach, work know that if I say no, or tell them I'm unwell, or that something will take longer than they think it should, I am being really serious. It has meant I have had to start telling them how I am feeling far earlier than I would choose to, but between us we trust each other. My boss trusts that I will tell her when things are bad/I'm struggling and I trust that she will listen at those times and not make a fuss about it, or fuss the rest of the time when I am ok.

It's not a perfect system, and I hate having to tell her anything, but so far it works. I don't know if you could have this kind of dialogue with your boss, I know it wouldn't work for everyone.

Good luck with returning to the office. Don't push too much too soon.

LignumVitae

Scattered - thank you, that sounds like an incredibly sensible way forward and definitely something I can put into practice. It might take some refining as my boss is not always the best communicator (he is generally a star but when the pressure hits he doesn't shine quite as brightly) but it's definitely a way forward.

ichabod6

Saying no is difficult, but if you cant do that why not continue working
from home until you feel able to?
I return the twins' kisses.

villier

You will work it out LV you have had some sound advice, lets hope the OT assessment goes well good luck let us know how you get on (((()))) xx

dibdab

I really hope it goes well for you LV. I found that being very honest with the boss was my first step, then a small group of really close colleagues, who soon came to notice the bad days with out me having to say so, and they some how just moved alongside to scaffold the bits I couldn't cope with (and provide cups of tea and hugs when needed!).

You have so much to give your work place, and when you get it sorted in your own mind I have absolutely no doubt it will work, and if others have to pick up some slack for a while so be it, no doubt you have done and will do the same for them.

The most positive encouragement I can share is what my boss said to me fairly early on after diagnosis when I was being honest about the bits I struggled with, she said - even at half pace you'll achieve more than many, and I trust you to do your best in every situation, and if stuff takes a bit longer so be it!

You will give your work the best you can, and the fact that the boss has been accommodating thus far with working at home truly illustrates how much he values all that you bring to the organization. Sadly guilt and uncertainty seem to walk with us with this ridiculous disease, but you aren't defined by it, you live with it and do an amazing job.

Deb xx

Slosh

Hi LV, sorry for taking a while to reply to this, been a bit of a week, but that's another post!

I know I don't have RA to deal with, but I do get where you are coming from in terms of your concerns.

Practical things first, Access to work, this was really helpful and the equipment reccomended has really helped, andvI also think flags up to people that I do have a disability rather than something that will get better. The full report does not get sent to your manager but I gave mine a copy as it mentioned the need for rest breaks. I also saw Occupational Health who made some reccomendations about resonable adjustments. Make sure you have a risk assessment in place and review it every so often. I'd also suggest a phased return to work, I did mine over 6 weeks and during this time had a weekly meeting with my head to review things. I don't have fixed hours in my job, just a minimum expectation but have taken advice from my GP on the length of day I can be expected to work.

I agree that it is good to have a few close colleagues you can be yourself with, and let down your guard with on a bad day. I am lucky in that the 3 I share an office with are great, and not only does this make me feel supported but I am not afraid to let it show when I am struggling. They also remind me of facts of life like the fact that everyone goes sick sometimes, and also when I'm being too hard on myself.

One other thing I did was to share an abridged and slightly personalised version of the spoon theory with my office collegues and managers, I put this off as I didn't want anyone to think I was playing the "disability card", but wanted to explain why I said there were things I could manage only at the start of the week. Nothing was said at the time but on Friday my Head remarked on the fact I was looking tired and in pain and told me to take it easy.

But, with all the problems, and with learning to deal with my own frustration at not being able to work as I did before, I find work does give me a lift as it reminds me that I am good at something.

Hope all goes well

Starburst

Hello LV. My experience has found that other people finding it harder to accepting changes in other people than the people themselves. I find education is helpful. There are leaflets available from both AC and NRAS for employers. I gave my new manager one specifically designed for employers and we discuss it in our fortnightly supervision sessions. It's important, it's part of me and does affect how I am at work. That said, like scattered, I don't make it part of my every day conversation. You are still you.

Through some tough times, I have learned that you cannot control other people but you can control your reactions to them. Eleanor Roosevelt said; no one can make you feel inferior without your consent. I feel the same way about power and control. I used to let people railroad me and I'd often walk away and feel like I had no control. I stepped back and took control, where I could and accepted that there are some situations that I do not have any power over.

Take it easy, my lovely.

Airwave!

I think a lot of us suffer anxiety brought on by those around us, I'm trying to decide when to put my foot down and say 'no more' but as usual I give in to OH. She's gone out leaving me to decorate, which I'm trying to do one handed (wrist u/s today) its ridiculous, we have to learn to say, enough is enough!

LignumVitae

Thank you all - those are all invaluable suggestions and ideas. It's also reassuring to know that others have faced similar. I had my Access to Work assessment this morning and I will post about that on another thread but it ind of put a few things into perspective for me.