What now?

What now?

So, there are many things to hate about Fibromyalgia. I could spend all day talking about them, but, instead, I will focus on one of the things I hate most. That is the big fat question mark over the rest of my life. When I got sick I had a plan.

I was nearing the end of my Bachelor of Arts in Education degree. Then I was going to teach while getting my Masters in Special Education. Each summer I would travel to one of the places on my travel bucket list. Once my youngest graduated high school, I would be working in Puerto Rico at a deaf school one of my professors had started there.

I had a plan and I was well on my way to achieving my goals. Then I got sick. I was unable to student teach and, while I did get to graduate with my degree, I was unable to get my teacher certification. It doesn’t really matter much right now, because my health has continued to deteriorate until the point where working is impossible. The arthritis and fibromyalgia pain in my back and hips is so bad that I cannot stand or sit upright more than an hour or two each day. I cannot walk very much either. Some days I cannot walk at all. My legs are weak and give out on me.

I have filed for disability and been denied again and again. So right now I spend most of my days in bed, alone, bored out of my mind. I try to keep myself busy by coloring, crocheting, watching TV, reading, working puzzles, blogging, etc. A lot of these are limited by pain and weakness in my hands. I am sick to death of TV. Reading is hard with the fibro fog.

I spend a lot of time on social media but that in itself is kind of boring. I prefer real interaction. I miss working. I miss being active. I miss swimming. I miss traveling. I miss spontaneous road trips with my kids. I miss a lot of things. Mostly I miss knowing what I was going to be doing with my life a year, 5 years, 10 years from now.

My life is just one big question mark now. I don’t know how I will feel tomorrow. I don’t know if I will be able to walk or not. I don’t know if I will be able to stay awake. It makes it hard to make plans. It makes it hard to do anything. It makes it hard to hope. I don’t know if I will get better or worse. There is no treatment for fibromyalgia. There is nothing they can do for my arthritis. I don’t know if I will ever be able to work again. I have no idea if I will ever be able to have a normal life again. I am 43.

What about you? What do you hate most? Do you find it hard to plan your life? Do you find it hard to be hopeful?

3 thoughts on “What now?

  1. I hate that my future is unsure. I hurt, constantly. I find myself waiting for the next unexplainable symptom. I am 47 and I love my job as a Children’s Librarian. But, how long can I do this? How long will I be able to lift, carry, bend, stretch, climb stairs, dance, jump, play, stand, sit in a chair, on the floor? I need to work because I have sons and bills. I have to work through pain, fatigue, anxiety, depression and feelings of loneliness at work and home. I cannot plan my future. Chronic illness makes that impossible.

    Liked by 1 person

    1. I’m so proud of you for being able to push thru the pain and other symptoms and work to provide for your kids. I totally understand where you are coming from. I was a Teaching Assistant in a Special Education Preschool class. It was very physical. I just couldn’t do it. I admire you. Great job.


  2. Oh I’m so sorry you’ve been through all of this. I had a little cry earlier – popped into town just briefly with my mother to pick up a few things and I couldn’t even manage that, I was exhausted and in so much pain that I limped back to the bus and went home. It frustrates the hell out of me, and it seems so senseless sometimes, so without answers or ways to make things better. Like you, I had a plan, I had at least a rough idea of how things would go (a job, a social life) and days now are just the total opposite. Not being able to plan is still a challenge for me, while at the same time I need to plan (prepare myself for doing something one day, schedule in a rest day afterwards, but then it all goes to hell when I’m not well enough to do it anyway). I know you’ll know this all too well. I find the comparison between how things were and how things are now difficult, especially because my brain still wants to do things but it doesn’t work like it used to, and neither does my body. I think you’ve captured the frustrations really well, so thank you for sharing. You’re not alone  ♥
    Caz xx

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s