Category Archives: Fate

The Big 4-0: aka, My Aging Chronic Illnesses

This past Monday I turned 40 years old. Four decades. Two scores. I am not the type of person who freaks out over getting older. We are all getting older every second of every day. It is no big deal. However, this birthday is slightly different. You see, my fall through the rabbit hole of chronic illnesses and disability all began right around my 30th birthday. I literally see my thirties superimposed by my poor health. It started with a migraine that lasted two weeks and quickly spiraled out of control with shingles, fibromyalgia, raynaud’s disease, osteoarthritis, degenerative disc disease, chronic fatigue, acid reflux… And I am sure the Fates are not done dumping on me yet.

However, I view my forties with hope. A hope that things will get better for me and my health. I am hoping that the mere changing of my decade from a 3 to a 4 will magically change everything. I guess it is no secret what I wished for when I blew out my birthday cake candles. What would you wish for if your life was ruled by chronic pain?

I can honestly say that I did not picture myself in my current predicament ten years ago. Back then, I thought I could simply make an appointment with my doctor and everything would be fixed. Then I could move on with my plans for my career and having another child. Needless to say, neither of those things happened. I lost my career and the chance to give my son a sibling. He seems okay with it, but I still have moments when an overwhelming sense of loss over what could have been washes over me. I know my body cannot physically care for the needs of a newborn. I have babysat friends’ kids and been completely overwhelmed. I accept that reality but the heart doesn’t care. It still longs for what could have been.

I was approved for Social Security Disability when I was a mere 32 years old. At the time, I saw it as a temporary condition that I would change in five years, ten tops. After eight years, I am still struggling to find a livelihood that can support me with my physical limitations. No luck yet. Part of the problem is that I doubt myself too much. I have been out of the workforce for so long and my brain fog has gotten worse so that I don’t trust myself to be able to think properly when it counts. I lack the confidence to put myself out there.

I don’t stress aging, at least not my body aging. I fear the progression of my illnesses and their proclivity to multiply. I started with the chronic migraines, which I thought was a living Hell. Now I know better. I would willingly sacrifice part of my lifespan if I could live out the rest of my life in relative health, able to do all the things I love to do.

A Life Lost

When I was younger and taking my first steps into adulthood and real-life responsibilities, I had a vision of what my life would be like. It wasn’t a set-in-stone plan with every minute detail laid out. It was a living vision of things I wanted to do – walk down a charming street in Paris, visit Scotland where my ancestors are from, see the Colosseum in Rome, hike in the Swiss Alps, go camping with friends, share my love of playing sports with my children, have two or three children, be a cool grandparent who could actually still do things with her grandkids.  However, some things just aren’t to be. Most days, I can live with this. I can focus on the positive things, things I can still do, things I appreciate more because of my illnesses. But then some days… it all hits me like a truck load of bricks, repeatedly. This past Sunday was one of those days. I was at my son’s soccer game watching all the kids running around and playing before the game. The players’ siblings and parents were on the sidelines kicking the ball around, throwing a ball back and forth. Some parents were talking about how much they enjoy coaching the younger kids in a variety of sports. I confess – I am jealous. I always saw myself as the the parent who would volunteer to coach her kids’ sports teams. I would play soccer or basketball in the backyard with them. I would take them down to the park and play tennis with them or roller blade around the neighborhood or ride our bikes together all around town or at the park with the bike paths. There was so much I wanted to do with my children. But I can’t. I don’t dare to even try on the best of days. I have learned I last all of five minutes before the fatigue hits or the pain kicks in. Not only that, but I only have the one child – my pride and joy. My health got in the way of having any more. My husband and I kept waiting for me to get better before having more. Now my son is almost 12 and that ship has sailed…

I watch my son and husband play in the backyard and the guilt and loss of not being able to join them is like a knife in the heart. I know I should be grateful for what I have and what I can do, and I am. But there are the days when the glass is half empty and leaking fast. I am not the person I wanted to be and that hurts more than any physical ailment. Regret is like that itch in the middle of your back that you just can’t seem to reach in order to scratch…

Twists of Fate

The Fates are some twisted sisters. They must have sat around one day dreaming up the most messed up combinations of illnesses. They were really having fun when when they planned out my future. They must have gotten such a kick out of giving me polar opposites for chronic illnesses to bear – yes, the pun was intended. “Hey, Clotho! Wouldn’t it be hilarious to give someone a disease where they have to pace their physical activity and require good sleep habits, and combine it with another disease where they have way too much energy, can’t sit still and don’t need sleep?” Well, sister, welcome to my world! That is what you get when you have bipolar disorder and fibromyalgia. On days when the mania starts acting out of control, I can count on the fibromyalgia flaring up like a bad dream that just won’t go away. I mean, what the Hell! The cruel irony of having days when I feel on top of the world, like I can do everything I ever dreamed of doing, when I feel so vitalized and super human. Oh, those days are like liquid gold, like I have found the Fountain of Youth and it is calling for me to drink deeply… But then fibromyalgia rears its ugly, painful head. My body contorts in pain. My muscles spasm in agony. My joints ache like a son of a bitch. And the lack of sleep turns my brain to mush, fogging up my once brilliant mind. It can take days, months to recover from a glorious manic high. The consequences of not taking my medications or simply slipping on a banana peel of Fate. Whatever the cause, the damage is always the same.

The way I see it, I must have really pissed off someone in a past life to deserve the perverse hand of cards I was dealt. What could I have done? Maybe I offed Kennedy or Lincoln. I could have been Jack the Ripper or Typhoid Mary. Whatever it was, it was bad. I can’t believe life would be so cruel to send me these two chronic illnesses (not to mention the other health problems I have had or have) without there being a cause. I refuse to believe that I simply pulled the short stick in life. Pessimistic, I know. Instead of seeing the glass half full, I have always wondered who the Fuck drank my water? But I know how unproductive this thinking can be (cause lets face it, after the mania comes the depression). I know I need to force myself to think differently about my life. Therefore, I should focus on what my illnesses have taught me. Or maybe I should focus on the difference I can make for others because of my illnesses. I know at some point all this will make sense, there will be a moral to the story of my life. It may be something as simple as treat your body with respect when you are young so you reap the positive rewards later in life. I am just hoping it is not something sadistic like we all live a miserable life before we die.

On that cheerful note, have a great week! 😉