It has been a very long month, one of those rare times when time seems to stretch out and minutes feel excruciatingly like hours. I reached a breaking point at work, my medications were taking me on a roller coaster ride, symptoms were predictably unpredictable, I couldn't make it through the morning much less the entire day, I began to forget things and lose emails that I was sure I had sent. At the same time, I was making appointments to travel to meet with customers and I was skeptical and downright fearful that I wouldn't be able to cope with any kind of scheduled meeting, presentation, etc. I just never knew when I would feel alert enough to conduct a conversation, negotiate contract pricing or problem solve and the uncertainty was creating intense stress for me. Though I had been assured verbally that my physical difficulties would be 'accommodated', in fact, those accommodations were not in practice honored. After breaking down in tears at the office one day I realized it was time to take a break and take care of myself. I needed to re-order my priorities and put health at the top of the list. My doctor signed off on a month's medical leave and I am happy to be reporting that, after 2 1/2 weeks, I am feeling considerably better. The first few days were very hard for me and I felt very depressed. I felt that I was "giving up" and faced with a day of unscheduled time I was just paralyzed with how to move forward, what to do, how to spend my time. I've decided not to worry about it and focus on two central needs - adequate sleep and daily exercise. I've managed both - I haven't sleep so soundly or long in several years and I've been doing a variety of exercises including long walks now that the weather is gorgeous, Tai Chi classes and forced high intensity cycling at the gym. Some days I can only manage to get to the gym and do one other activity before I have to rest. That's OK. I've baked bread and made a delicious pot of lentil soup; I made my son a birthday cake from scratch (it wasn't the most beautiful cake!); I've planted tulip bulbs; had lunch with friends; read several books; started therapy; and applied for disability which itself takes hours. I have some writing I want to do and my jewelry supplies and tools are begging me to pick them up again. I'm not sure where this will lead but I have a feeling that I will not be returning to work. I now see that I waited too long and pushed myself too hard, I really am not capable physically of working a full day. I am not one for leaving a situation without a good effort, and I often hang around long after my exit is due. I need to know that I did everything that I could. In this case I think I did.
For anyone out there considering applying for disability there is a good checklist for tracking your Parkinson's symptoms and helping your doctor document them. Go to the PAN website and download the Parkinson's Disease Work-Related Disability Assessment Form.
Subscribe to:
Post Comments (Atom)
I, too, am noticing my meds are not lasting as long. Before going on a recent vacation, I asked my neurologist what the best way to handle 'wearing off' periods so that I can wait the full 6 hours before taking the next dosage. He came up with a solution and off I went.
ReplyDeleteThree weeks in Turkey; hiking, swimming, and spending long days wandering around in towns, and I was totally asymptomatic. I never felt like I even had PD! I was able to get more rest than usual because much of the time we were on a boat. Most nights I slept 7 hours which is an eternity these days! Says something about the lack of stress.
After coming home, the work I've been doing in my gardens and yard, and my 'job' in local government, have brought me back down to earth and I am having difficulty 4 hours after I take my meds.
I am on the horns of a dilemma. I really like doing all the activities I am involved in, although I AM looking forward to my term being up in a year and a half. Do I take more meds because I don't want to slow down? SOmetimes I wonder if I am trying to do everything now before I can't, but when I really analyize my feelings, I don't think that is it at all. The meds make me a little manic at times, and sometimes,I am so energized I can't believe it. Does going with those moods deplete more dopamine? How do I determine when I need to force myself to slow down?
When my meds have worn off and I am waiting to be able to move more normally, I cannot sit still. There just seems to be no comfortable way to sit except for straddling a chair backwards or becoming prone for a little nap. OFten I play Scrabble with my husband while I am waiting and I squirm uncontrollably in my chair. Paradoxically, if I am walking the dogs, mowing the lawn or any number of other activities, I can go beyond my 6 hours (even 9 hours in Turkey) with no problems...until I cease the activity. Then I practically stagger until the meds work.
There is no doubt that stress and lack of sleep make symptoms worse for me. I'm not sure I want to slow down, however. How do I decide what to do? More meds, more activity...less meds, reading quietly more. It is not in my nature to go slowly.
I think you're heading in the right direction by applying for disability. Your time should be devoted to taking care of yourself as well as you can. There are always stresses, but quite a load is lifted when going to work each and every day is eliminated. Don't become discouraged during the process. It is not supposed to be easy, but it is an emotionally difficult thing to do. It took me 2 years to get my disability with a lawyer as an advocate at the end. I was turned down 3 times.
Thank you for your comments, Vivian, and for your encouragement. I am going through emotional ups and downs with not working but trying to be patient with myself, it's not easy!
ReplyDeleteI have the same symptoms as you describe, when i am waiting for the meds to kick in, the squirming and inability to get comfortable.
My doctor said the squirming and inability to get comfortable when waiting for the meds to take effect is 'akinesia'. How this disease increases vocabulary!
ReplyDelete