Chronic pain · Fibromyalgia · Invisible illness

What does it feel like?

Some days are pjs with built in leg warmers days

Today was supposed to be a social day. I had breakfast plans with a couple of girlfriends and afternoon drinks plans with another. I was looking forward to today.

But rather than a social day, today has ended up being a lounge day. This is fibromyalgia. Fibro feels like pain, tiredness, isolation, sadness, confusion, fogginess, limiting, never ending.

Two nights ago I went to my usual yoga class. I say usual because I had been in a routine of going to this yoga class but, due to, well, life, I hadn’t been in around 4 weeks. So, naturally I was in for some pain.

I woke an hour or so after going to bed that night. My muscles had already started to stiffen. I was tight. All over. Sore.

I had an awful nights sleep waking every hour or so, every time I tried to roll over. Each time I woke my body was stiffer, tighter, sorer.

My daughter cried in the middle of the night. Her cot is on my side of the bed. All I needed to do was roll over, hand her a dummy and she would fall back asleep. Moving is the last thing I wanted to do. My body was so heavy. I felt weighed down, as though my body was made of stone. I didn’t want to move. I didn’t want to roll over. Maybe she’d stop on her own. I was so sore. So tired. I had to move.

I woke the following morning and start my usual routine of unfolding my fingers from the ball they had become over night. I notice my legs much more than I did the day before. Cement. It feels like I’ve been encased in cement from my waist down. So heavy. My butt, my legs. So heavy. I don’t want to move but of course, I have to.

I swing my body into a seated position on the edge of the bed. Rest. I place my feet on the ground, they unfold underneath me. I stand. Rest. I start to walk. Every fiber of my body is tight, stiff, sore.

The following morning, this morning, is worse. I wake and I lay in bed. The weight of my arm on my legs is too much. Too heavy. I have to move it. My chest feels as though I have been coughing all night. It’s as though I can feel every individual rib against my skin. The blankets are too heavy for my legs but it’s cold so I don’t want to take them off. I try to puff the blankets up, making a cocoon around my body. Tucked in at the sides, high in the middle so as not to touch my legs. I notice my shoulder blades. They ache. My lower back. My butt. My body is too heavy, my poor bottom is taking so much of the weight. But I can’t roll over. I don’t want to move.

My legs. As always, my legs are the worst. The cement feeling is back. Except for some reason I always imagine that if my lower half were encased in cement, it wouldn’t be in pain. Heavy, but not in pain. I am definitely in pain. My hips, my legs. They are definitely in the worst kind of pain.

I don’t want to move but I know I have it. If nothing else, I have to take care of my daughter. I have plans for today. Plans I’ve been looking forward to. Why did I make plans? I don’t want to do anything. Maybe if I get up, move around, warm up my muscles, I’ll feel a little better.

An hour before I’m supposed to be leaving for breakfast I’m still not well. Can I manage the half hour drive? Can I manage the seats in the cafe? I’ve never been there before so I don’t know the set up. Will there be room for a pram or will I have to carry my daughter in? She’s so heavy now. How close will I be able to park my car? What will the seats be like? Will my back take the seats? Will my legs?

I move to brush my daughters hair away from her eyes. My back. I can’t go. I need today off. I need to stay here. I need to rest. I need to get better.

This is fibro. Pain, tiredness, isolation, sadness, confusion, fogginess, limiting, never ending.

Chronic pain · Fibromyalgia · Invisible illness

You are not alone

Community

You may have heard, I write a little blog.  I’m not being cute when I say little, I’m being honest. My blog gets a little traffic. I know this because every time I log in to write a post, I see my daily stats. So, last week I logged in as usual and, hang on a minute, there must be something wrong.  A quick investigation and stats don’t lie. On one day, I had over 1,300 views of one post!  It seems another Facebook page had shared my post on socialising with chronic pain and it was getting some traffic.

As it so happened, on that very same day I noticed a post I had written about fibro funk (which had been republished by The Mighty) had been shared over 3,700 times!

Now I’m not telling you this to big note myself. (Although, if someone else wants to tell me how cool it is, I’d be totally fine with that.)  The reason I’m mentioning this is because it is so easy to feel alone. When I first became sick I felt completely alone.  I was staying with my parents and was so lucky to have countless family and friends around to help, but I still felt very alone.  I wasn’t like everyone else any more, this time I was really sick.  My body was shutting down on me and the drugs I was taking to try and combat this were causing my brain to give in as well (or so it felt).  When I was finally diagnosed, nobody I knew had ever heard of fibromyalgia (myself included), so how were they really going to help me, in my soul?

I soon became educated on my condition as did those around me.  I enlisted the help of a team of great medical professionals, and found a supportive online community of those fighting the same or similar condition.  After a while, I wasn’t so alone anymore.  But, don’t be fooled, it is so easy to fall back into the feeling of ‘I’m all alone’.  One bad flare and the alone feeling can hit you like a tonne of bricks.  Right out of nowhere.

At times like this, when I can’t get out and see my friends, when I don’t have the energy to connect with people online, it’s important to remind myself that I’m not the only.  And I know this because there are a hell of a lot of people out there reading about and sharing my thoughts and (much as I’d like to take credit for my amazing writing skills) I know it’s because these people connect with what I’m saying, because they are/have been there themselves.

You are not alone.

Chronic pain · Invisible illness

The forgotten ones

I cried watching this.  I cried for Jennifer.  For everything she has been through and everything she continues to deal with.

I cried for myself.  For all the times I was dismissed by doctors.  For all the times I heard the words “There is definitely something wrong with you, but it doesn’t have anything to do with [insert next random medical speciality here]”.  For all the times my mother was asked to leave a doctor’s surgery so they could ensure I had not failed to disclose some deep psychological trauma due to her presence.

I cried for all the times I reached out to the medical profession only to be turned away.

I also cried for all of those who have yet to find help.

I am one of the lucky ones.  Eventually, I found doctors who listened, who said they wouldn’t give up.  I found doctors who took the time to find out what was wrong with me and what they could do to help.

I should not have to call myself lucky.  Finding doctors like this, who listen, who investigate, who don’t give up.  This should be the norm.