Autism and Chronic Pain In Winter

Hi reader,

Today I'm going to be talking about what it's like living with autism and chronic pain, managing the sensory issues of pain and how I've learnt to cope with it. But first let's go back to before I knew what as "wrong".

It all started when I was about 6. All the other kids in my class would run around at break and lunch, but I didn't have the energy for it. I was told I was lazy, boring and rude for not enjoying playing like everyone else. But that wasn't the case, I just couldn't do it. By lunchtime my whole body hurt, my legs, arms, chest and on bad days; even my hair. I remember one time after school I got into the car and just started sobbing, saying "My hair hurts, why does my hair hurt Mummy?" and it kicked off the hunt for answers. Obviously I didn't know that at the time, but I do now.

Skip forward a couple of years and I've just had a blood test done and we get the results. It showed I have Gilberts Syndrome (a liver disease), but this is often accompanied by chronic illnesses so my mum does her research. I get some physiotherapy, a few doctors appointments and some extra help in school. After all of the tests and appointments, we have the diagnosis'. Autism, Fibromyalgia, Anxiety and Depression. All of this at the age of eight (8). Now that's a lot for anyone, let alone an 8 year old, but I was okay with it for a while. It explained why I felt how I did, why I was in so much pain all the time, why I was so tired all the time. Everything seemed to make sense in my world.

And then it didn't, it was a really cold winter and my fibro flared up horrifically. I couldn't think, playing wasn't fun, I was exhausted, I was in pain and the world seemed darker. I now know that my flare ups worsen my depression because I can't do as much as I normally can, but younger me didn't know that, and thought her world was caving in. Over the years I've learnt to manage the depression though, it still hits just as hard but each year I fight back a little bit harder.

Below is a list of things I've learnt to tackle those winter flare ups:

• Warm drinks; I know it seems silly but it really helps. My personal favourite is hot Ribena. Getting your core temperature up will help you get the energy to warm up the rest of your body and battle the aches and pains.

  
  

• Weighted blanket; I love having my weighted blanket over me in the winter because it keeps me grounded and distracted from the pain the cold brings. It also isn't too hot, because heat is a massive sensory issue of mine.

  
  

• A pet; my best friend and old lady cat, Domino, loves to cuddle up to me. Even more so in the colder months, and she's a great source of both comfort and tolerable heat.

  
  

• Warm lighting; I find that having nice warming lighting in my room helps me stay calm, warmer and more grounded. I'd rather have 2/3 lamps on than the big light, it just makes my space feel calmer and more like me.

  
  

• Letting yourself rest; I know it's a cliche and anyone who's disabled or has a chronic illness has heard it a million times, but it's something I'm still learning and it has massively helped me. I used to feel guilty for my nothing days, sometimes I still do, but when I let myself rest guilt free, I find it much more regenerating.

  
  

• Good food; well, kind of. Yes diet is important and you should be eating well but we all know that when we are struggling, it's easier to just eat comfort food. A few treats during the harder months is much better for anyone's mental health than forcing yourself into sensory overload.

  
  

• Finally, sleep; When all else fails and you're still over-whelmed by the cold, sleep through it. Get into bed with a blanket or two, put on your favourite show or film, and get some shut eye.

Dealing with my pain has bought on a massive list of sensory issues I didn't even think of before trying to manage it. But it's also taught me ways to work around my issues and personal restrictions. I've found tools I never would have been told, but work wonders for me. If I could press a button and get rid of my pain forever, I would do it, but I'm grateful for it at the same time. I've learnt so much about myself in the past year or so while figuring out what works for me and what doesn't. I've still got a lot to learn, but with time and trial and error, I know I will be able to figure it all out.

I hope some of what I've spoken about today can help you, Reader. Remember to look after yourself, eat well, take your meds and drink water.

From my story to yours - Fable xo