I have always been an introverted person and also very stoic. I blame this somewhat on my Irish heritage where guys simply don’t discuss their feelings. Blogging takes this to a new level. While I don’t have a problem discussing my ups and downs with dermatomyositis, there are somethings I have kept very reserved. I am acutely aware that anyone can read your Blog post, including your employer. It then becomes a fine line on how much I want to divulge. But here goes!
When I went to see my primary care physician some months ago, he made a comment that still resonates with me. “Do you need to be on so many pills?” It was a weird thing for a physician to say, but I understood where he was coming from. None of us wants to be unnecessary taking medication.
As well as dermatomyositis, I have high cholesterol and high blood pressure. Despite trying to change my diet and watching my weight I could not get around these without taking medication. The ‘discretionary’ medication I am on is anti-depressants and sleeping pills.
I never felt I was depressed with the flare-up and it took a long time for me to be convinced to go on anti-depressants. What is not in dispute is that I could not stop my swearing and outbursts. It was tough on Nicole and I did it in front of my 5-yo. Prednisone is a big part of it. Anti-depressants did suppress my outbursts. I went back to work this month, which is going well. Also as you may have read in my last Blog entry, finally I feel I am coming out of my flare-up. Two weeks ago I convinced myself I am fine and stopped the anti-depressants. Lo and behold I am back to my ornery self this week. Anti-depressants are no longer discretionary.
Prednisone also plays havoc with my sleep. To compound matters I have severe sleep apnea. With all my various ailments and having cancer in the family, nothing frightens me like sleep apnea. I have no doubt my dad had it. He was a very loud snorer and would try and nap on his lunch break most days from the shop. He never had it treated. Years later he suffered a number of mini-strokes to the brain and eventually had to go into full time assisted living. The last time I saw him, he could not talk, walk or feed himself. He just stared at me intensely as I spoke to him. Rightly or wrongly I am convinced that sleep apnea contributed to his strokes.
Two sleep studies have confirmed I have severe (hyper) sleep apnea. I have been using a CPAP for at least 2 years. These machines can be a bit like Big Brother as they record when and for how long I use it. They are also difficult to sleep with. I seem to go into a dream state for hours and not go into a deep sleep. Howevers my sleep doctor tells me I am sleeping a lot better based on the data she downloads from it.
I take Ambien to combat the prednisone and somewhat the CPAP. The drug is habit forming, so now and again I stop taking it and see how I sleep. The nights I don’t take it, such as tonight, I don’t sleep. Ambien is currently not discretionary either. Hopefully this will put my primary care physician’s comment to sleep.