A change in the weather

Hiya dolls,

A change in the weather is good, right? Bye bye cold grey skies, hello warm(er) sunshine. Magical....err, not so much for us hyper-sensitive folks with Fibromyalgia.

I posted a comment on Facebook a couple of days ago saying how I was having the worst Fibro flare up EVER and I was very surprised when a few other people with Fibromyalgia said they were having an awful time of it, too. A flare up is when there's a noticeable increase in symptoms, especially pain and fatigue. The sad thing for me is I never know when I'm out of a flare, only when I'm in one. On a normal day I feel bad and on a flare up day (week/month) I feel terrible. There is no feeling good - well, maybe one day every few months, but they're so far apart as to almost seem like they never occur.

Normally when I'm in really bad pain it's in response to activity - I may have washed my hair, gone for a walk which was too long, gone out in the cold or the rain (the cold/damp gets into my bones and creates merry hell) or strained myself doing the housework. That's not to say there aren't occasions where I hurt doing nothing - there are. My whole body is tender to the touch, and what might feel like a light touch to someone else will feel like a slap or punch to me. At rest, with nothing obvious that would cause me pain, the other pain I get is neuropathic pain - nerve pain. I described it on Facebook as if someone was playing the drums on my nerve endings. Thankfully this comes in cycles, usually a few days at a time, but with periods of respite in between (usually.)

Before I'd even spoken to anyone else about the change of weather, I'd been guessing it was why I was feeling terrible. I just had a hunch. After seeing a few other people say the same thing as me a few clicks on Google quickly told me that changes in weather come high up in the list of the top triggers for Fibromyalgia flare ups.

Knowing why I'm in pain helps, strangely.

So, what is nerve pain like? It will vary from person to person, but for me it comes in a couple of ways. The first is a dead, crushing pain which is like when you have an overzealous nurse or doctor who puts the blood pressure cuff on you far too tightly. Everything feels like it's being squeezed tightly and it's totally unbearable. When it happens, it's always in my arms and shoulders. It feels like my arms have been slammed in a car door several times. That's the only way I can describe it - it feels like every bit of my arms is bruised black and blue. It's hard to concentrate on anything when this pain comes and I have to prop my arms up on pillows by my side as having them hanging by my side is too much. I'd tear my arms off if I could, it's that bad.

The other pain is what I call 'tuning fork' pain. It feels like my bones are a tuning fork, and someone is striking my bones. Pain will zing or vibrate up and down my bones just like a shock wave. I get the pain in my wrists, fingers, arms, elbows etc. It makes me wince. If I was holding or carrying something when I get this pain I'd certainly drop it.

At the moment I have both the dead pain and the tuning fork pain, so I'm in a world of hurt. All I want to do is sleep. I feel so tired. Functioning under this level of pain is extremely tiring. Looking after myself - eating, drinking, washing - all feel like a step too far.

I love the sunshine. Normally it cheers me up, but at the moment not even the glorious view from my living room is soothing me. I'm going between bed, sofa, kitchen and bathroom. Functioning rather than living. Not seeing the outside, focussing only on the immediate, on surviving. I've often likened it to being under siege. It may sound dramatic, but I am under siege - body and mind.

I wish the arseholes at the DWP could read this....or even my doctor. Sometimes it feels like few understand, even when I tell them. Maybe I need to yell a little louder, yet I know it could always be worse. Propaganda against the sick and disabled is so prevalent I still feel guilty for not being in work, even after struggling to write this for the last hour and then some. Whatever I do around the house, it never feels like enough, yet it takes so much out of me. I wonder if I'll ever get over the guilt of not working and not contributing to our finances. There are so many facets to ill health - so much of it loss. Loss of self, loss of employment, loss of earnings, loss of independence, loss of hobbies, loss of enjoyment, loss of self-respect.

This episode will pass and fade to a distant memory, just like all the others. It'll be replaced by another episode, somewhat similar but somewhat different all the same. The orchestra of pain plays a different tune every time and each instrument takes its turn for the solo. If not for the intermission between each act I'd surely go insane, so I'm thankful for any respite.

All might seem black but I'm always looking for a chink of light. I never knew I was an optimist before I got ill, but now I know I am.

Thanks for reading.

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