#crpssucks

The pain

I want to scream

I have had the worst day (other than the friends obvs!)

My Flare is AWFUL

I’ve been using medicated brownie for a while. I even used the best strain I have, it’s helping but not too much. It’s not even getting me all that high as the pain is keeping me sober.

I’m on as much medication as possible.

I’ve had to stop everything I was doing as. I can’t concentrate on anything.

I pulled away from my husbands and had a big cry. OG hubby came to look out for me and stayed with me while i cried.

It’s so traumatic. It’s triggered a lot of negative feelings of parental medical neglect so to have hubby be so nice and caring is making this hard as it’s a complete 180° of how I aways treated originally.

It’s also really hard my to-be sister-in-law has bought herself an power chair and I’m envious she can afford the freedom.

I can’t afford £120 on a rollator, let alone the £1,500-£6,000 for a power chair.

I know disability isn’t a competition, I’m really happy she can get around better! I just wish I could do it too. Spring has sprung and I want to be IN it, not just watching it pass by my window…

I hate CRPS flares.

My daily life with CRPS is basically that my feet are like icicles and they hurt to walk on, yes, but it’s like when the feeling is coming back to you when you have pins and needles. It’s that prickly pain which is horrible but I can manage it. My feet are generally mottled purple/red, I can carry on my life as best as possible. I can walk in pain, I can drive, it’s okay.

A flare though? I have been in one for a week. I haven’t been able to wash properly as the water of a bath is too painful and we can’t use our shower. Standing is too painful so I have to scoot around on an office chair the best I can. It feels like someone has jammed a red hot poker into my ankle through the top. I feel like my bones are breaking, I feel like someone has injected petrol in my veins and lit it on fire.

My hubby saw me panic and go into shock from the pain, he watched my toes and foot go red as the invisible flames licked up my toes towards my ankle.

Buty feet are still cold. It’s like a freezer burn, it’s still cold but it BURNS.

No painkillers can relieve this, not that I’ve found.

I’m so glad my family believe me. They see my purple/red/white feet and legs. They see me struggling to breathe as the pain is so intense it knocks your breath away.

Instead of lying on my wedge pillow so I can breathe properly and not hurt my ribs with my fibro it’s currently propping my feet up night and day as my feet cannot touch anything right now.

I’m still trying to move my ankles so they don’t become stiff and useless but like now, when I do I’m in tears.

I can’t think. I can’t cope. I’ve thought about going hospital but what will they do? See I’m already medicated constantly, check for damage, which they’ll find none, and send me home. So what’s the point? I don’t want to waste time and resources.

And a rheumatologist saw me for all of ten minutes, barely examined me and basically said no, I don’t have it. Did an MRI and as nothing came up took my diagnosis away… When it only appears on MRI 50% of the time… Cool.

So now when people see my purple feet I just say “but there’s nothing wrong with them!” because now I have a widespread chronic pain condition, they’d rather chalk it up to that… Even though this started 14 years prior.

It’s demoralising, it’s traumatising, and this comes with a lot of emotional wounds and scaring from when it originally happened.

I’m tired. I’ve been awake on and off all night but up for an hour consistently thinking I need to pee but can’t make it to the next room over right now…

I was picking up, then, I don’t know ‍♂️

I was confident to move the office chair back to the spare room but now I think I need it back.

I wish I had a rollator for in the house but I don’t have £120 lying around to afford it.

Sorry for the moan. I’ll go back and try and sleep a little longer.