Category Archives: Regrets

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.

Identity Crisis

When I graduated from college, so long ago I can’t remember, I was all set to be an adult and build my career. I was lucky to get a dream job at a management consulting company. It was ideally suited for me. I was given projects to work on independently in my little office. I got to travel all over the country and even back to my home country of Canada. I spent some of the best years of my life there. I was making good money and having fun. Of course, this was all before chronic migraines and fibromyalgia and arthritis…

I was the breadwinner in the family. I earned more than my husband and we were okay with that. I had no intention of ever giving up working. I just couldn’t see myself staying home with the kids while my husband supported us. That simply wasn’t me. I was going to be one of those Super Moms who had a career and kids. I could handle it; I was good at multitasking. I had the world’s best daycare center taking care of my son. I knew he was in good hands so I focus on my work.

Then I was laid off and found a new job. It wasn’t exactly what I wanted to do but that didn’t keep me from trying to excel because that is just the way I am. Even with a crappy job, I wanted to do the best job I could. But then I got sick. I started missing work. I used the FMLA to get a reduced work schedule because my migraines were so disabling. However, I remained the breadwinner up until I had to quit because of my health. I could no longer manage to work. It was a devastating blow to my ego. Being part of the rat race was a huge chunk of my identity. Without it, I felt lost. Being a mom is great but I wanted, and still want, so much more. I spent so much money and time on getting an education. I didn’t do it so I could stay home babying my fragile health. I was proud of being able to take care of my family financially. Being out on disability was not my dream – let me tell you it sucks.

To combat my identity crises, I started working with nonprofit groups. I took over the local support group for fibromyalgia and chronic fatigue syndrome. I joined Leaders Against Pain (a part of the National Fibromyalgia & Chronic Pain Association). I am becoming an advocate for those too sick to do it on their own. I am giving back to the community in a positive way. But I still miss working. I still miss the joy everyone has on Pay Day. I am still young enough to have hope of jumping back in.

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…