I was asked recently how my diseases impact my ability to work a full-time job. While my job is very supportive, I have had to make a lot of changes to do my best, and I don’t feel that I always make that mark. Things have been especially difficult lately due to a bad flare, and even if I’m in the office, I don’t always feel 100% “present”. I’ve written a bit about some of the ways I’ve adapted, but in bits and pieces, so I thought that I’d answer here:
Starting off, I am on a specific schedule for my medicines, which forces me to wake up at 5:30 am. Thankfully, I can usually crawl back into bed for an hour before I need to start my day. I would function better if I could sleep later, but an early work day has its benefits a swell.
At 6:30 I get out of bed before hubby so I can take my time in the bathroom- not rushing and having a set routine makes mornings much easier. I’ve never been much for makeup or hairstyling, so I don’t miss skipping that step in the morning. If it is a bad day, I may take a hot shower to help relax my muscles- those days I carpool with hubby, so I don’t have to worry about being late for work.
I then put on shorts, feed the kitty chorus, and feed myself, taking my second round of morning pills. I am not really coordinated enough to dress myself yet, and that way if I spill on my shirt (cat food smells lingers) then I don’t have to change clothes a second time. I have a simple breakfast every day- lately we are really into morning smoothies, which has the added bonus that I can put it in a sports bottle and bring with me to work. Simple, easy-to-assemble, and can be done on automatic- I prepare and freeze the fruit ahead of time.
I usually log into the computer while I eat and check my personal e-mail, funny cat macros, and scan Twitter from the night before. After breakfast I dress for work.
My wardrobe is slowly but surely moving to no fasteners at all. Pull over blouses, slacks with elastic waists, and slip-on shoes. I wish I could describe the process needed to put on pants- I’ve tried but can’t quite capture it. I have a bench to sit on for donning socks (which I wear every day, even in Florida summer, since my office is usually freezing). Cold is especially painful for me, so I keep a suit jacket in my office and have a small space heater under my desk. On my way out the door I take my umbrella, which serves as an emergency cane as well as combating Florida sun and rain (often at the same time!).
We live quite close to work, but I take a roundabout route to avoid stop-and-go traffic. My reflexes are not terrific in the morning, and if I am too tired or stiff I I ride with hubby and he drops me off. Working close to each other has been such a huge help. The only disadvantage is that hubby works longer hours than I do, so carpooling means I stay late on a day when I’m already not great. I park as close to my building as possible. I do not have a handicap tag yet, but I suspect that I will have to get one eventually.
I usually try to get to the office by 7:30- this means less traffic on the roads and less stress in the mornings. I can settle at my desk and get caught up on overnight e-mail before the phone starts ringing. I manage a small team and now have two other full-time staff, which has eased my daily workload considerably. I am still learning to delegate, but it’s a relief to know that if I can’t make a meeting I can have someone attend in my place.
My desk, chair, and monitors are set as ergonomically comfortable as possible. Lower back support is important, and I have a footrest under the desk to keep my feet and knees at a good angle. I carry elbow pads with me that I’m meant to wear whenever working at a computer- unfortunately I cannot wear them under or over my suit jacket sleeves, so if it’s cold that day I need to decide which is worse- the numbness in my hands or shivering at my desk. There is no temperature control in my office, but now that I have my own office and can shut the door and turn on the space heater it has helped immensely. I also keep a small refrigerator next to my desk so I have snacks and drinks on hand, as well as an electric kettle and pitcher of water for tea. An unexpected bonus of this office in lever doorhandles, which are much easier to manage than doorknobs.
Coming in early means I can also leave early avoiding traffic. I pace myself throughout the day with breaks to walk around and stretch, and drink water to stay hydrated. The salad bar is my favourite lunch spot, or I bring a freezer meal from home that I can heat in the microwave. I usually try to keep yoghurt and fruit for snacks as well. I now have Dragon Naturally Speaking at work for days when my hands are especially bad and make typing difficult. I am still training it and getting used to the format, but it definitely helps!
One of my main accommodations is letting my supervisors know my situation, and asking for flexibility on deadlines or permission to share projects when things are especially bad. I have worked from home on occasion, but I am much less productive, so I try come into the office unless I am truly non-functional and then I take a day off. Unfortunately, all my sick time is taken by doctor visits and lab tests. I have vacation time accrued that I am allowed to use with permission for sick days, and that is an enormous help. My employees are aware that I deal with chronic illness, and it’s fairly obvious to my co-workers since I frequently wear splints and walk with a cane. Everyone is friendly and supportive (even if they don’t always quite understand), and that environment is absolute gold to me.
If I am well enough I try to spread out my errands and do them after work on my way home throughout the week- that way I can truly rest on weekends. I feel very fortunate overall, but when my health so seriously impacts my ability to work I can’t help but worry. I make a good salary and have excellent benefits- while hubby has both as well, losing an income would obviously have a huge impact on our lives and plans. Learning to pace myself is still the biggest lesson for me to master, and during hectic times of the year (like right now) it wears me down considerably.
Something that has come up quite a few times recently is statistics for the number of people diagnosed with RA who work part- or full-time. Apparently, those numbers are low, and drop steadily in proportion to number of years since diagnosis. I was somewhat aware of this, but apparently crossed a magical line somewhere from expectations that I am employed full-time to expectations, that, well, I’m not.
At the neruo’s I had the question posed to me twice- once by the tech and once by the doctor in slight different ways: “Do you work?” and “What’s your job?” There’s a difference there, and I might not have even noticed if it hadn’t been lurking on the sidelines of my perception already.
Interestingly enough, there are several studies that show remaining employed has positive benefits for those with RA. I know it helps keep me moving and keeps my mind occupied in ways I’m not sure I could achieve if I was home every day. Weeks like this, however, I can’t help but wish that I could start work later in the morning and then work later in the afternoon (evenings are usually pretty good for me as long as I don’t sit for too long) or maybe move to a four-day workweek.