I have rolled these thoughts around in my head for some time. This morning it just weighed on my heart to write it down. Get it out there, out into the world. I don’t write this as a boo-hoo look at me, feel sad for me post. I write this as a person that is coming to grips with a disability. I put this out there, into the world because there may be a person that is going through the same thing, or has a family member, friend, whomever, that is going through a similar situation. I see you, I feel you, and I know what you’re going through.
Now to get on with it…
I never thought I would’ve ended up here. I’m 40 years old, disabled and unable to work. I have had 9 back surgeries (from multiple back issues over quite a few years), fibromyalgia, Sjogren’s Syndrome, Osteoarthritis, chronic pain, along with other diagnoses that have lead me to this point. I have had 3 blood clots in my lungs, and an infection in my spine (from one of the many back surgeries) and I struggle daily with anxiety and depression. I now have a spinal cord simulator that helps me with some of my chronic day-to-day pain. But, there are still good days and there are bad days, both physically and mentally.
I have had the job title of “disabled” for many years now and I don’t ever think I will get used to it. My mind on those “good days” thinks, what if. What if I could go back to work. I could go back to my old identity and be a provider once again. Then those “bad days” hit, more often than I would like, for obvious reasons, and the reality sets in. Finding myself laying on the couch with heating pads, ice packs, too tired to move or do anything. There is no way that I could go back into the job market and work 8+ hours a day, 40+ hours a week like I was dreaming of just the day before.
Could you imagine going to work, working hard on X, Y or Z then having your mind go blank and you can’t remember what the next step should be. Forgetting words mid-sentence. Forgetting where your phone is when clearly I am taking on it (true story). Misplacing an important piece of paper and driving myself nuts trying to remember where I put it because what I do remember is that I picked a place that would be obvious so that I wouldn’t forget where I put it….What a great plan. These are only a few of the struggles.
Why does my brain hold on to these hopes of one day I can go back. One day I will feel good enough to go back to work. There’s always a spark of hope, but that spark breaks my heart when reality sets in just moments later or the next day. I have thought of different angles on how I could approach going back to work WITH my disabilities. But, it always comes crashing down when my body just doesn’t want to work properly. It’s a reality that hard to accept.
Why me? What is the reason that I have been taken out of my old life and expected to adapt to my new (well not so new any more), painful reality? What is Gods plan for this to have happened to me? What am I supposed to do? There has to be a reason. A reason I look for daily because there is so much left of my life (I hope I live a long life, I am only 40). I would like to know. I have more important things to share with this world than self-care so that I can lower my horrible pain. What’s the plan and when will I be let in on that secret?
Life is what we make of it, no matter our situation. I believe that. However, there are days where I wish I was that able-bodied person that enjoyed her work. I don’t know if that feeling will ever go away. But, with the issues, my body has faced. I just have to be lucky and THANKFUL that I am still here.
To those who are struggling, I get it.