On finishing my second month of work, I wanted to take stock of this little venture and offer an honest take of how I’m faring so far. In some ways, I’m pleasantly surprised. In others, I’m worried I’ve taken on more than I can chew. I’ve made mistakes. I’ve seen strides. It’s taking time to figure out how to balance my spoons. Overall I’m enjoying working the few hours I can manage each week and I’m bringing in decent money. But with the determination letter I just received from the Social Security Administration, I have to admit, I’m a little scared.
The first two months, I haven’t managed to work more than 55 hours, even though I can work 80 before the SSA considers it significant gainful activity. I just can’t seem to manage more than a 10-15 hour work week before I’m either out of energy or too symptomatic to continue and frankly I don’t know how I could possibly manage my life and do anymore. It’s not just that I don’t have the energy for work alone; it’s that I can’t keep up with everything I need to do to stay healthy. As it is, I’m not doing a very good job of keeping up with my physical therapy, fascia therapy, or cardio and my nutritional needs aren’t always being met, because I’m not always down for preparing everything from scratch as I should be with all of my dietary restrictions due to my mast cell and gastroparesis. And forget about housework and my other familial responsibilities. I’m lucky if I manage to keep our pill cases full, the cupboards stocked and the bills paid. It seems so minute, that 12.5 hour weekly average of hours worked, yet when it requires added recovery time, it really wreaks havoc on a life.
Then there’s the flip side, all the good things that go with working. I’m no longer so isolated and feel a strong sense of purpose and pride in putting myself out there to earn for my family. I’m bringing in an extra $450 a month on average, making our holidays brighter and paying down our ever growing medical debt. And despite how hard it can be at times to strike a balance, I am getting stronger and it does seem to be getting a little easier each week. Where I really run into trouble is when I start adding on fun stuff, like going out to dinner with friends, taking a short hike or contending with a holiday like Thanksgiving. There just isn’t any room for extras and I’m going to have to either sacrifice the fun stuff for work or work for the fun stuff because I simply haven’t found a way to stockpile enough spoons for both.
Then there’s the big mistake I made. I had planned on signing up for the ticket-to-work program back when I had thought I might be ready for full-time work. Well, since I proved pretty quickly that I was no where near ready for full-time work, I decided against it. I didn’t because going back to work part-time threw a lot of doubt on my ability to work full-time at this stage for all the reasons I’ve stated above. If 12.5 hours is so hard to maintain, how on earth would I manage a full-time job? Still, had I signed up for the ticket-to-work program, even if I wasn’t ready to begin working part-time, having the goal of going back eventually and working with them would have protected me from a medical review by social security. I should have done it and I didn’t and now the SSA is in fact putting me up for a medical review because I am working part-time.
I don’t suppose I should be too worried about it given that I still have all the medical conditions I had when I was originally ruled disabled and during my last review, not to mention my additional diagnosis or EDS, but I am in better overall health than I was back then and I fear it could be misconstrued that I am somehow “healed” or better than I really am because I am able to enjoy more time outside of my home and I don’t spend quite so many hours languishing in misery. Of course a large part of how I stay healthy and keep my pain levels low is to keep my activity levels low. I just know how the SSA works and anytime they have their gaze honed in on you is cause for concern. Will they understand that every time I do just about any physical activity I injure at least one joint if not more? Will they understand that while I’ve learned how to control my POTS pretty well, that doesn’t mean I now have boundless energy or no longer suffer from brain fog that still prevents me from doing the kind of work I did before I became ill? Will they understand that my primary form of pain relief is prevention because I’m unable to tolerate opiates and most other prescription meds and everything else does nothing more than “take the edge off” of my pain? I will have to do my best to make them understand, I suppose.
I probably sound a little down on the whole idea of attempting work right now. Perhaps that’s because I’m nursing three tendon tears right now and I’m coming off a very hectic week that’s left me exhausted, grumpy and stuck at home in PJ’s when I’d rather be out working or enjoying some holiday fun. But that’s just it. I’d rather be working, as I know most of us would. I’m not worried that I’m wrecking my health or causing any serious damage. Even my tendon tears have nothing to do with the work I’m doing. They have more to do with lugging in groceries, the stairs that lead to my apartment and my love of 32 ounce cups (yes, I have tennis elbow from the repetitive motion of lifting my 32 ounce water off of my end table… only a potsie zebra, right?).
However, I would be remiss not to clearly state that if you do attempt to work at any level, you have to make super sure that you listen carefully and follow all the advice of your representatives and sign up for all the right programs. I made the mistake of not signing up for the ticket-to-work program thinking that it would be best to wait until I felt I was actually ready for gainful activity and here I am being reviewed. Learn from my mistakes. This is why I write. Not to show how brilliant I am. Not to show I can do disability better than anyone else. It’s precisely so you can learn from my mistakes. I may not always show you the mistakes firsthand, but you always get the benefit of my trial and error. And on this subject, I know I will feel much more optimistic once I’m better rested and this whole medical review business is behind me, assuming they feel the same way I do; that I may be somewhat better, but I’m certainly still disabled by my conditions. No one would love more to say it isn’t so than me, but I’m just not there, yet.