Living with RA is most definitely a rollercoaster; one day you can feel ok and manage with the pain and stiffness, but the next day can be unbearable. With no explanation or any fathomable reason, it can hit you when you least expect it. I’d go as far to say that the condition is so changeable it can differ from hour to hour. You can feel ok at work, moving around and managing quite well, but by the time you get home after a 45 to 60 minute drive, the pain can be intolerable and your eyesight severely affected from the dry-eye side effect. So how do you spend the evenings? Usually covered in hot water bottles, blankets, dosed with painkillers and asleep…rock and roll!
Since I had to return to work full time in 2009 my Specialist and Clinical Nurse have discussed my working pattern and hours, stressing the need to work part-time. The argument is on-going with the battle of justifying why you remain in employment. In your worst periods you are advised not to work at all…yeah right! You know you are your own worst enemy sometimes, but there’s two things here; 1. Its ok saying ‘don’t work’, but I like where I live and being able to help to support my family financially and 2. I’m a bit of a stubborn bugger and if someone tells me not to do or that I can’t do something; I have the tendency to just do it anyway!
So, for 6 years you continue to work full time in considerably intensive jobs. Eventually you have to leave a place you love due to a number of reasons, but when your employer does not understand the condition and tells you after 13 years of working in the same place that perhaps you may not be ‘well enough’ to do the job any more it’s a clear sign it’s time to move on. To be honest, this can be the best thing that ever happened, as you discover that there are employers out there that do understand and will bend over backwards to support and enable you to work. It is liberating to no longer feel a nuisance for having RA, as if you are an inconvenience.
Having debilitating conditions are tough and I couldn’t imagine having to do a physical job at all. When you can’t even peel a potato, imagining working in any physical way seems a foreign concept. I applaud all RA survivors who work at all and I completely understand those who are no longer able to do so. Some employers get it, others…well they either can’t make adaptations or won’t. There is a lot of media attention to promote the employment of disabled people; however RA is a hidden disability that many still don’t fully understand and its rollercoaster nature lacks consistency in performance ability which, let’s face it, is a nightmare for any employer. Flexible working patterns and ability to work from home is not an everyday luxury that many companies or organisations can afford, which is why I feel so fortunate.
Working for a charity has changed my perspective on many things, realising there are employers out there that genuinely care and actively promote wellbeing of staff. I was honest with my manager from the application stage for my job, I figured there was no point not disclosing as my ability to carry out my job would most definitely be affected. Even with all the meds and specialist support my flares continue and the RA impacts on my life daily. I have been lucky, but it has made me realise that all employers could treat people this way. I work extremely hard to make sure targets are met and the service I lead performs at an optimum level and I have worked tirelessly to enable my team to work autonomously so when I can’t be there, the service can continue and that they feel equipped and enabled to do so. So why can’t other organisations allow this?
These last couple of years have been difficult, with changes to meds and new compounding conditions but with the continued support from my manager I am still employed and still determined to do a good job. Personal attitude has a lot to do with it, but everyone I have met with RA or other hidden conditions have generally been fighters and determined to ‘carry on’. Is it that the RA makes us this way, or that we were that way in the first place???
I have however had to accept that working full time is no longer an option (but never say never) and after a number of months of home discussions and careful consideration I have made the decision to reduce my hours. Part of me is destroyed by this, with that guilt of financial burden on the husband and feeling like I’m letting the RA win. However, truth be told, the relief I feel is immense. It’s as though I have given myself permission to rest, to recover and to actually find a bit of myself that so many RA survivors lose. Yes, the loss of money will be a pinch but I’m hoping the gains will far outweigh the loss. I know the kid is already excited that for one day a week I’ll be at home when she finishes school…who’d have thought at nearly 13 she’d want her mom at home?