I am now six plus years steroid dependent to treat Addisons’s Disease. A little know illness that impacts the adrenal gland, and results in death if left untreated. The only treatment available are the administration of daily corticosteroids.
Six years in I have travelled thorugh a number of stages, first the denial, as in ” I am totaly fine and life can go on as before ” then the depression when I realized I faced a life of daily medications, endless pills, my permanent outpatient status and ongoing health issues. Here is the punch line though, I am pretty adept now at managing my illness, I can tell when stress is making my hormones or lack thereof fluctuate. I recognize the need for sleep and lots of down time, I now longer fight to return to full-time, high stress employment and even live happily within the limitations. Don’t believe what the countless number of web sites and health sites say about Addison’s Disease though, after describing how rare it is they add the warning, ” people diagnosed usually life long and unhampered lives”. The suggestion here is that once diagnosed and treated life can continue as before. Not true, sorry to say.
Here is the kicker, with any chronic illness there comes a multitude of side effects from medication. Change medication? The meds available for Addison’s are quite limited to three or four different types of corticosteroids. One of them, prednisone, I quite literally cannot take because it causes excruciating liver pain. The one I do take has a host of complications such as risk of osteoporosis, arthritis, cataracts, loss of ones circadian rhythm, ie severe sleep disorder, as well as a host of mood swings including depression and suicidal ideation. Most of this can be counter treated thanks to good medical and psychiatric care. The reality is the illness itself causes organic depression in the body and the medication one takes to stay alive leads to depression. How did JFK manage this illness ( I ask and berate myself all the time!!) The reality is that he took a host of other drugs to counteract the depression such as amphetamines and alcohol. Because of complications I cannot drink alcohol, eat after six o’clock in the evening. Eat rich foods, junk foods, dairy etc. I am mostly okay with that, but here is what really gets me, I never in a million billion years imagined I would be “sick” and in my mind’s eye I saw myself as working on my career until a good old age. Instead my days are spend managing with care the complexities of illness, medication, side effects and sleep issues.
Even my family, who know me well often underestimate the difficulty of my daily life. My daughter often forgets I am sick and need help walking the dogs, or am unable to manage food stuff and suffer from sleep deprivation. My friends and family try to remember, because here is the thing, I often look really well! As in not sick, as in I look tanned and healthy. The tanning, a side effect of the disease creates the illusion of health and well-being. In fact sometimes I do such a good job of not complaining everyone forgets my limitations. Such as my partner suggesting we add a third (yes third) dog to our retinue of fur babies. I would love that truly. But a third dog? I can hardly fetch my tea in the morning, the difficulty in handling the hot water has in the past resulted in second degree burns (the morning shakes). So…. no third dog for us.
The real “stuff I didn’t know” is that I am not working, something I imagined I would be doing until at least 65. In addition to that I find pursuit of my life long loves difficult too, such as writing and painting. The energy required to think straight and to prepare my supplies sometimes seems daunting.
Don’t get me wrong, this is not a complaint post. Not in the least. In fact I am thankful that of the places I could have fallen ill I fell ill in Canada. Luckier than some billions of other people in the world. My life, while maintaining some middle class semblance is limited but not over. I can enjoy many parts of life, from my dogs to my friends and family and my partner. It’s just that this thing, this illness, this surprise that came to me in middle age was just that an unprepared for surprise. How can we ever prepare for the future that is hidden from us? How can we imagine that our working lives could suddenly stop, just like that for an unforseen reason? Some of these are issues I plan to take up in future posts but for now, know that my ill temper my inability to join you for dinner, my strange sleeping patterns are not meant to shun or avoid you but my own bodies way of coping and basically just staying alive :)
That is all for now !