Role-reversal

There’s been a bit of a role reversal going on in my house this past week.

My little sister Sophie injured her knee (she’s fine btw) and had to walk around on crutches with a leg brace for a while.

It’s been a strange time for both us. I’ve had to watch her getting used to finding ways to walk and down the stairs, and I’ve had to get down on the floor on my hands and knees to pass her things because she hasn’t been able to bend her knee.

I also had trouble getting up and down the stairs in our house after having my hip surgery at 16, so this situation has brought back lots of memories for me. I mentioned to Sophie the methods that I used to use to get up and down them in my bottom, but  she found her own way regardless. She did it pretty quickly too. I am a proud big sister.

In some ways, it’s actually been really nice for me to be do all of this for Sophie, like she has been doing for me all her life. Obviously, I’d rather that she hadn’t been in so much pain, but she coped with it really well. I think constantly  asking how it felt for me to do doing to for her probably helped her a bit too. It was like looking on the bright side almost.

I guess it was probably good for the two of us to go through this role-reversal for a while, but hopefully Soph will be back to her normal self soon

 

 

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I wrote a guest blog for Scope

Hi guys,

Some of you might have seen already that I’ve written a guest-post for the charity Scope about society’s views on disability sex need to change.

If you want to read it, you can do so here.

I’ve had a lot of lovely comments from people about this, so thank you for that. This is a subject that I feel conflicted to talk about for reasons I explain in the article. I’d love it if you could give it a read and let me know what you think.

Much love,

Nic

 

 

Guest-Post: why being autistic is like having a manual gearbox by Alan Borgars

The majority of people, or more specifically neurotypicals (NTs, those who are not neurodiverse) generally have no problem adapting and reacting to social situations and contexts instinctively. Autistic people, however, do not have this natural advantage; I am one of the UK’s 600,000-strong autistic population.

If you think about it, humans and cars share some similar core features. A human has a brain in the head in the same way a car has an engine under the bonnet, almost always at the front (which is where the human brain would be if humans walked on all fours). That engine has with it a gearbox, an oil filter, a battery, pipes, wires, coolant, brake fluid, and water. The human brain needs equivalent things to function and not shut down. If the engine ceases to function, so does the whole car; the same is true for the human body.

NTs can be said to have an automatic gearbox because their brain works in such a way that they can automatically react to social situations and conversations without having to think about it or use any pre-recorded scripts. A car with an automatic gearbox does not have to change gears except when climbing the steepest hills; it automatically shifts as it speeds up. However, being autistic is like having a manual gearbox; even autistic people who manage to develop reasonable and reliable communication and social skills generally have to consciously think about what to do and how to react to situations. It is as if there was a clutch to depress in the autistic brain before pre-recorded scripts could be changed or new situations could be dealt with. And just like cars with manual gearboxes, autistic people like me can sometimes ‘stall’ in awkward encounters or when particular sensitivities are triggered.

However, cars with manual gearboxes tend to have more power and more potential because they have more specialised ratios, which is lacking among the vast majority of automatic cars. My own brain’s ‘gearbox’ has more ‘speeds’ than a neurotypical person’s ‘gearbox’ meaning that when on form, I can achieve a lot of tasks in my specialist areas to an ability beyond that of the vast majority of humans and in an interesting way as well. The same goes for autistic savants past and present.

You can follow Alan on Twitter @GreenAlanB

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. 

 

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.