GUEST POST – What I Wish People Knew About Chronic Pain by F R Kesby

Chronic pain is a common problem among the disability/spoonie* community but is often misunderstood by those who don’t experience it.  So, what do you need to know if you are supporting someone with chronic pain?

It’s not the same as any other pain…

There is a big difference between pain you know will end and pain that may never end.  A broken ankle or wrist hurts like fuck, I know that.  But a few weeks in a cast, an operation and some physio and that pain will (normally) go away.  You know that.  The pain from an ongoing condition, such as the widespread pain of fibromyalgia or chronic back pain will carry on forever and boy do you know it.  Every time there’s a slight increase or an extra twinge or a just a bad day you know that this could be your life for now on.  This could be the next twenty, thirty, forty, fifty, sixty years.  Next time you stub your toe or accidentally slam your finger in a drawer try and imagine knowing that will never stop.  That’s chronic pain.

It’s not ‘just’ pain…

When chronic pain moves in it doesn’t come alone.  Chronic pain will tuck itself in your spare room all well and good but soon enough you’ll find depression is crashing on your couch, anxiety is eating all the food in your fridge, insomnia is playing loud music at 3am and exhaustion is taking three hour bubble bath naps in your tub.  Pain is tied very closely to our emotions, that’s why some people find it harder to deal with than others, so raised pain levels can make all negative emotions seem worse.  This is also tied in with my next point…

It effects everything…

Imagine trying to go for a lovely walk along the beach with your friends.  There’s a lovely view, the promise of vinegary chips followed by whippy ice cream, interesting conversations and lots of laughs ahead of you.  But, you’ve got a massive weight tied around your ankle and one arm tied behind your back.  Think you’d enjoy that day?  No.  Imagine being in bed with a Hottie with a capital H.  They’re doing all your favourite things and they’re very, very good at it.  But, there’s a car alarm going off right inside your ear and the bed is made of that scratch jumper stuff that gave you a rash as a kid.  Would you enjoy that sex?  No.  This is what chronic pain is like.  It ruins EVERYTHING.  Sure, there are moments (sometimes even hours) of joy and wonder and all the good things in lives but chances are in that very same day there will also be tears and clock watching for the next dose of painkillers.  Much like sand (no, I’m not missing the beach at all!) it gets everywhere.

The meds are not fun…

Here is something I get a lot; ‘Ooh Morphine, fun, I wish I could have some of that!’.  No.  You.  Don’t.  It makes me sick.  It makes me confused.  It makes me dizzy.  It tastes like bleach sweetened with Calpol and comes in a bottle with such a good child lock my arthritic thumbs often can’t open it.  You really don’t want it.  And, surprisingly, neither do I.  I don’t take it because it’s nice or fun, I take it because the option is take something horrible or be in so much pain I can’t breathe.  We don’t take them for fun.  And, yes, we know it’s addictive, we know it’s bad for us, we have read that article about it, we know there’s an opioid crisis, we have indeed tried stretching, yoga, positive thinking, mindfulness, meditation.  Stop telling us about it.

It is unpredictable…

We’re sorry that we cancelled on your birthday party/hen do/Saturday night cocktails/shift at work/cat sitting/cinema trip/being able to wash the dishes – we we’re in pain.  We can’t know when we accept the invitation or make the plan that we will be in a lot of pain that day.  Often, we can’t even know if we’ll be in a lot of pain in the next few minutes let alone the next few weeks.  And this may come as a surprise to our friends/family/customers/bosses but WE HATE IT WHEN THAT HAPPENS TOO!  We hate cancelling, we hate phoning in sick, we hate missing out and we hate putting our lives on hold to deal with a pain crisis.  But we have no choice.  People think that chronic pain means not only constant but constantly the same and that’s not true at all.  It fluctuates, it moves, it changes patterns and some days it, even though it’s not actually much worse than normal, we just can’t handle it.  Constant doesn’t mean consistent, unfortunately.

But…we are still people.

Yes, we have terrible pain all the time and that means we can’t do some stuff, but we’re still people.  We want to be invited – just think about what you can do to make it accessible for our needs and make us know we aren’t letting you down if we can’t make it.  We want to come to things – just bear in mind that we may need to cancel last minute if we’re in agony.  We need human interaction – even if you just come over to binge watch OITNB and eat crisps, we will appreciate it.  We still like all the fun things you do – we just sometimes need to do them a bit differently.

Thank you all for reading.  I hope if you’re a fellow chronic pain sufferer you recognised some of yourself in this, feel free to drop us a comment on things you might want to add (or even things you disagree with, though I may cry!) and if you aren’t then I hoped you learned something about your friends who are.

*Spoonie is a term for people with chronic illnesses.  The term originally derived from the Spoon Theory which was used to explain the effect of chronic illnesses on everyday aspects of life.  It has since been co-opted by many online groups as a bonding and activism tool.

 

F R Kesby is a blogger over on Spoons, Loons and Toons as well a poet and storyteller.  She lives with fibromyalgia, chronic back pain and complicated neurological issues, among other things. You can find her ranting on twitter at @FayKesby or find Spoons, Loons and Toons on Facebook.  She is also chair of Leeds Savage Club, who are on Meet Up and Twitter at @LeedsSavage. 

 

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Cerebral Palsy and Migraines

As I write this I have a pretty rotten headache. It’s not quite crossed the boarder into migraine city yet, but I wouldn’t be surprised if it does. The main bulk of the pain is nesting in the nape of my neck, so I think I must have been sitting in a weird position.

I don’t get migraines too often now, but I feel like I had them every day from the age of about 14 to 16. They used to make me go dizzy and fall over.

When I was 14 I started getting horrible shoulder and neck pain. This was back when I was still knock-kneed, and stood with one knee behind the other. I did this so much that my kneecaps had rotated so that they faced inwards instead of outwards.

In other words: my posture was poop, and the way I stood back then gave me migraines. My doctor gave me some stronger painkillers, and my physio at the time tried some intensive therapy on my shoulders to lessen the pain, but we all knew that there wasn’t much we could do until I’d finished my GCSEs and could have operations to reset my knees.

Once I had my hip surgery and the muscle-lengthening surgery afterwards, the migraines went completely. I Hardly even get headaches any more. I’m so, so lucky. I wouldn’t wish them on anyone.

Pain Update 10/08/17

Hey guys,

My pelvis pain finally seems to be settling down. Well, by settling down, what I actually mean is the pain isn’t constant any more and is a lot less intense most of the time.

That said, when it’s bad, it’s pretty freaking bad.

Short bouts of intense pain is something I’m used to dealing with. I usually have a low level of pain on a constant basis, and the bad days are getting more and more frequent. I feel like I’m starting to get the hang of dealing with them.

What I don’t think I’ll ever get used to is intensely painful nights, and my pain is always, always worse at night. I put so much pressure on myself to try and get a good night’s sleep. And, there aren’t as my distractions.

Things are much, much better than they were a few weeks ago though so I can’t complain.

If anyone has any advice on dealing with bad pain nights, I’d love to hear it!

How are things with all of you?

 

A low pain weekend!

Guys, I am so happy right now. It’s Sunday evening and I can honestly say that I’ve had the lowest pain weekend that I’ve had in a long, long time. It feels so amazing to be able to say that after so many bad cerebral palsy days.

Honestly, I don’t think I can remember the last time I had so little pain – probably because not all that long ago, my day-to-day aches and pains were easy enough for me to push to the back of my mind and not really notice.

God, I miss those days. I hate to say it, but I think Bad CP Days have become my new normal. Let’s hope it’s just a phase. I keep telling myself it’s just a phase, but to be honest, I feel I’m in my embarking on a long-term relationship with bad CP days for the moment.

I’m mentally preparing to be in it for the long haul. The thing that people never tell you about pain is that it’s perhaps even more emotionally exhausting than it is physically exhausting, but this weekend has given me a much needed glimmer of hope that I’ll get through this – whatever this is – and manage to get my old mental and physical self back.

The only time pain has really, really bothered me this weekend was on Saturday night (thank you, Left, Hip. I love you, too) and the rest of them time I’ve felt like I have been the one in control of my CP.

I feel so empowered and optimistic. I’m looking forward to the next few days, rather than dreading how tired I’m going to be, and that is how life used to be. How it should be.

I’m going to count this as a victory.

The Unlimited Company Leeds Store Opening Day

Disclaimer: I have not been paid to write this post. I was invited to attend this Bloggers  Breakfast event by The Unlimited Company from Simplyhealth, where I was given food, drink and a free opening day goodie bag – more on that last part later!

I’ll admit that I had no idea what to expect when I accepted the invitation to go and see the new The Unlimited Company Store in Kirkstall Bridge Shopping Park, Leeds. I came away feeling really impressed and encouraged by what the future could hold for me as a disabled person.

Not only did they sell items that would make life easier for people with all kinds of disabilities, not just physical ones like mine, but they have a sensory room and a huge disabled toilet with a hoist, adult-sized changing table, and movable sink. And we all know how I often have some strong opinions on disabled loos.

I think the thing that appealed to me the most was that the shop has a resident Occupational Therapist who is on-hand to offer help and advice to anyone who needs it. She spent ages showing me a lot of things they had for people to look at and try out.

There are just so many things that I didn’t know existed. They have an adapted kitchen to show people what they can do now, and just how stylish they are. It didn’t have a ‘clinical’ feel to it at all, as many of you probably agree some of these things do have. I felt really optimistic about what my ideal home could look like in the future. Well, if I ever manage to get on the property ladder, that is. That’s a debate for another time.

Remember that rant I had about clothes shopping with a disability? Well The Unlimited Company even had that covered too, because they stock clothes from a company called The Able Label. I’ve never heard of these guys before, but I’m definitely going to be checking them out. They make clothes with velcro instead of buttons and zips! How amazing is that?

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Talking to in-store OT Rachel about The Able Label: photo courtesy of The Unlimited Company from Simplyhealth.

If all of this wasn’t enough, I was lucky enough to be able to meet members of TeamBRIT. I’m not going to lie, sport would not be my strongest subject on a quiz show, but I have to say that car looks very cool. And people were impressed by how my walking frame Ivy and I had managed to colour-coordinate with it. I wish I could say I’d planned it that way all along, but I’m not that good.

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Meeting TeamBRIT – photo courtesy of The Unlimited Company from Simplyhealth.

My goody bag had a TeamBrit cap in it too, (and they gave me an extra one for Rob, thanks guys) this totally makes me an honorary member of the team now, right? Right?

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I suck at selfies

They also gave me a really cute mini-hot water bottle which will be a huge help with my pelvis pain, or any other pain for that matter.

And what was the hashtag of the day, I hear you ask.

#nolimitsjustliving

Speaks for itself, doesn’t it?

 

FIND OUT MORE:

If you want to find out more then I’m going include social media links below:

The Unlimited Company

Facebook: https://www.facebook.com/TheUnlimitedCompanyUK
Twitter: https://twitter.com/theunlimitedco
Website: http://www.theunlimitedcompany.co.uk/

Simplyhealth

Facebook: https://www.facebook.com/simplyhealthuk
Twitter: https://twitter.com/SimplyhealthUK
Website: https://www.simplyhealth.co.uk/

The Able Label

Facebook: https://www.facebook.com/TheAbleLabel/
Twitter: https://twitter.com/theablelabel
Website: https://www.theablelabel.com/

TeamBRIT

Facebook: https://www.facebook.com/TeamBRIT/
Twitter: https://twitter.com/TeamBRITracing
Website: http://www.teambrit.co.uk/

 

 

 

 

Blogging about your own life is hard

This might seem like a really obvious thing to say, but blogging so openly about my own life with cerebral palsy is hard.

One of the most important things about this blog for me is that I keep as honest as possible. It’s not easy for me to admit that getting on buses scares me because of the disabled access, that I can’t tie my own shoelaces, or, that on occasion, I have fallen over and wet myself on the way to the toilet. And yet, here I am, doing just that.
People who read this blog now will probably have a very different opinion of me from those who have been reading since the early days.
This makes me sad.
I worry that people will see me as someone who can’t, rather than someone who can do and does do.
When I first started this blog almost a year after graduating from my multimedia journalism degree, I worried a lot about how this blog would look to potential employers. I worried about whether or not my inability to tie my shoelaces might come across as an inability to perform work-related tasks, like sending e-mails. I worried about whether or not I should mention that I like to go to the pub with my friends.
Then people started to read it. People with CP, loved ones of people with CP, or people who just found my blog interesting. These lovely people left comment after comment and I realised that a lot of them had to deal with things that I do.
I started talking about my bad days, my pain management  (which I’m pretty good at most of the time) and the surgeries I’d had as a teenager. People responded. People related. People cared.
Worries about what employers would think faded away, I stopped paying attention to my stats. I was being me. I was having fun.
People were grateful for my posts, especially parents of children with CP. Even if the posts weren’t always happy ones, people kept commenting. Your comments and support have kept me going over many a bad CP night.
Talking about my mental health was harder. The day I came home from the doctor with antidepressants I cried. I was so very ashamed. I’d struggled with my mental health since childhood. I felt like I had truly failed at life.
I didn’t talk about it for a while. I didn’t think anyone would read or understand-  but they did.
They still kept coming back. You still kept coming back.
My posts have not been regular lately, I know that. People still keep subscribing to it via WordPress, even though the mood of this blog has changed.
I’m going through a rough pain patch and a rough mental health one too. I’ve recently upped my meds again and I’ve just had a x-ray to see if that will tell us anything about my pelvis pain.
My long-term physio has just retired so I’m on the waiting list to see a new one.
My therapist has just referred me to another  one because he felt that I needed to ‘step up a level’. Yup, that means I’m on another waiting list.
My circumstances have changed a lot in the last four years. I’m still looking for permanent work. I have freelance work, but nothing full-time, which is what I want, need and am capable of.
I was apparently written off when I was younger, but got a first in my degree. I was born at 26 weeks gestation, 26 years ago and still survived. My parents were told I’d walk around a supermarket ‘at best’.
I walk round supermarkets for fun. While using a walking frame and carrying a basket of shopping.
I’m both sorry and not sorry that this blog isn’t showing the best me at the moment, but that doesn’t mean I can’t be that again.
With a job to distract me from my pain, a good medical team, and understanding people around me, who knows what might be possible.
Thank you for all your support,
Nic