One Step Forward, Two Steps Back

There are many things I have learned to do again, albeit differently, since my spinal surgery 15 months ago. 

It seems, however, that stairs are still my nemesis. I can manage one or two steps if I go slowly and carefully but, as I discovered tonight, walking up a whole flight of stairs still causes me significant pain. 

We went out for dinner with friends, who had booked at a first floor restaurant that had no elevator. It did, however, have a beautiful circular staircase. 
Beautiful… and an enormous challenge.

I went very slowly, but by the fifth or sixth stair my lower back was screaming. Before I got to the top, I could feel the sciatic pain in my butt and staring to extend down my legs. I couldn’t stay there, so I had to either keep going or go back down. Slower still, and even more carefully, I made it to the top.

The first thing I did was hit my friends up for whatever analgesics they had. One had ibuprofen, the other had paracetamol. I took both, as my doctors have instructed me to do when I need to. I also chose not to sit until my meal was delivered, even though standing up in a large room of diners made me feel very self-conscious.  

It didn’t help that some people were quite obvious about the way they looked at me – and all I was doing was standing up. Once again, it reminded me of how much harder it must be for those whose differences or disabilities are more obviously noticeable.  

Dinner was delicious, but as soon as I had finished, I stood up again. We took the rear door out of the pub, as it opened onto the driveway. Even through it was quite a slope, it was still easier than the stairs. 

It’s disappointing that the establishment had not been more thoughtful about accessibility. An assumption that everyone who visits is able-bodied enough to use the stairs is ignorant at best. Perhaps if there were a “disabled access” sign pointing to the rear of the building, I might have been able to enjoy my meal and the great company without either kind of discomfort. I cannot imagine I am the only person who would benefit from that, 

And, if you’re ever out for dinner and there’s someone standing up for most of the evening, or doing anything else out of the ordinary, just know they have their reasons and be kind enough to pretend you haven’t noticed.

FibroMyFriday

The aim of this post is not to complain. My spirit is still quite positive, albeit a little weary after working hard to tick things off my “do or die” list this week. Instead, my purpose is to raise awareness of what it’s like to live with Fibromyalgia. 

People cannot see my illness. It’s easy to feel sympathy for someone in a cast, a wheelchair or a hospital bed. I notice an immediate difference in people’s responses on the days I need to use my walking stick. Some are kinder, and most are more physically careful around me. 

Of course, there are always some who couldn’t care less about someone with a cane, but there is no point losing time or sleep getting upset about them. Their attitude only highlights the good in others’. 

My disease is invisible, although some of its effects are not. I may look tired, or upset, at times. My emotions sometimes get a bit messy, although I am a good actor so most people don’t know that. 

After a busy and somewhat stressful week, my body is letting me know how unimpressed it is. 
My pain levels are in the “stupid” range. 
My legs don’t want to bend anymore. 
I have zero need to take my pulse because everything is throbbing. 
Even  typing this is slow because my fingers hurt too.

To anyone else, I probably just look like someone in a recliner, covered with a quilt on a cold night, typing on her iPad. The truth is, I want to go to bed but I don’t want to move because I ache so badly.

My pain levels are in the “stupid” range. My knees don’t want to bend anymore. I have zero need to take my pulse because everything is throbbing. 

I have medicated, but it’s not touching the pain. That’s always good. 

In a further act of bodily insubordination, my very dodgy spine is giving me spasms— yet another an indication that I have probably (read: definitely) overdone it, yet again. 

I don’t want sympathy. I don’t want medals or admiration, or people telling me I’m brave.

What I want is for people to understand that Fibromyalgia and other “invisible illnesses” are not imaginary. They are not something we adopt because they are “trendy”. 

Fibromyalgia hurts. And it sucks. And it doesn’t go away. 

And if you think I “don’t look sick”? Just remember, you can’t see my superhero cape, either. 

Things For Which I Am Thankful Today

Today, I am feeling very low. So, I am trying to focus on things for which I am thankful. 

I know it won’t fix things, but it’s a positive distraction from my own misery. 

Most of these are in no particular reason, although the first four are in the right place at the top of the list of what I am thankful for today: 

  • My best friend. For so, so many reasons that I can only barely start to count. 
  • Encouragement from friends. Even when life really sucks, they have my back. 
  • My dog. Abbey the Labby always knows when I need extra love. 
  • Scout Kitty purring on my lap. She, too, has been extra attentive. 
  • The lovely quilt with which I have wrapped myself. It was a gift from my best friend at Christmas time, and given that I can’t hug her today, it’s the next best thing. 
  • The audiobook I’m listening to. It’s good to give my mind something else to do. 
  • Peanut butter on toast. 
  • Coffee. In all honesty, I am thankful for coffee every day. You all should be, too… because even if you’re not drinking it, I am. 
  • Downtime, and the fact that I got all those exams and reports done. I really don’t think I could have maintained that pace much longer. 
  • The fact that I do not have to sit upright on stupid courtroom seats for one single minute of today. My spine has been brutalised this past week. 
  • Pain medication.  Enough said.
  • A Poet’s Curse. I’ve been reading it for therapeutic reasons last night and today. It helps. 

Can’t Sit… Still

My back has been giving me grief the past few days. Today, though, it has been plain nasty.

This meme was shamelessly borrowed from the Internet. I don’t know who created it.

By the last lesson of the day, the spasms were so bad it was all I could do not to cry in front of my students. Then, as soon as most of the students had left the building, I started the slow, painful walk to my car.

Getting home was a relief. The process of lying down was no fun, and it still took some time for the spasms to ease.

So how did I get to be in such a bad way? I sat down at work for more than fifteen minutes. Sadly, that’s all it takes.

Since my spinal surgery last October, Sitting has been a huge issue for me. I can walk, I can even manage stairs, which I had really struggled with for a few years prior to that. But if I sit on a regular chair for any period of time, I am in pain. The more tired I am, the worse it is.

So, the only sitting I tend to do these days is in the car on the way to and from work. That, too, can be exhausting.

My current physiotherapist insists that it’s just my brain telling me my back might hurt.

I disagree. Those spasms are not the fruit of my subconscious spine having a panic attack. That level of pain is actually my back hurting– and way more than it should.

I’ve been doing the exercises and stretches, and there just doesn’t seem to be any improvement.

So, I’m going to listen to my body and not the physio. Well, not that one, anyway. I’m going back to my former physiotherapist and I’m going back to the doctor, because I can’t keep doing this.

It’s been seven months since my surgery, and I should be able to sit long enough to have dinner or do some work without suffering for it by now.