Hidden sensory problems

 Many people with and without autism have sensory difficulties, often the result of a sensory processing disorder or a sensory impairment, and I have a few.

But the one I want to focus on today is the internal senses, the interoception sense. This sense helps us understand our bodies internal senses things like hot, cold, hunger and thirst. I am no expert in this sense, that is probably all I can tell you about it, I am not a doctor or scientist but I have been told I have problems with this sense and the last 24 hours, without me even realising have been a prime example.

Yesterday evening my dog (a seizure alert dog) was a bit over alert in his behaviour and towards bed time he alerted me, around 11pm. I was already upstairs in bed watching some TV so I stayed where I was and yes he alerted correctly and I had a seizure. I assumed it might be due to the adrenaline rush and emotions of the day having sat an assessment over the last 2 days (more about that in another post). So I didn't take any additional medication which is an option for me if I have seizures I just continued to watch TV in bed.

I woke up this morning around the normal time of 6:45am and had another seizure. Nothing concerned me, seizures on waking are not abnormal for me, it's one of the reasons why I set my alarm a good 2-3 hours before I have to leave home or be ready for something every day. I stayed in bed, my PA phoned me like she does every morning to check I'm ok, remind me to do / check I have done my meds etc. And I stayed in bed for a bit as I know I would be speaking to another friend in about 30-40 mins and I could do my meds then. Spoke to my other friend, got up, went downstairs to the kitchen, took my meds, made a drink and the dog alerts again. So I go and lay on the floor of the living room.. And yes another seizure. I start thinking to myself, maybe I am getting a cold? Or is it because of all the emotions and anxiety around my assessments? It's odd. Anyway, once recovered I get up and go back to the kitchen to make some breakfast but decide to empty the dishwasher first. I get a oven dish out and notice it has a bit of food stuck to it still so I pop it in the sink to soak and as I run the hot tap I realise there is no hot water. I look to the boiler, no light is on. I touch the hot water pipes and there is no heat. I turn the heating on in the hall and whack the thermostat up to 30 the boiler doesn't kick in. And the dog is alerting me again! Once that seizure is over I check the room temperature it's 12 degrees. Bingo! We know what has caused the seizures. But when did it stop working?

Now looking back, the room temp in my spare room / office was low yesterday and I had to pop a hoodie on a couple of time. I just thought it was on the cooler outside but expected my heating to respond as that is what it is set to do.

You see, I cannot easily tell if I am hot or cold or regulate my body temperature. I have had a body temperature of 34.2 before and felt no different really (apart from a headache) to when I have a fever!

So, I have had a few seizures because I don't feel the cold and can't regulate my body temperature. Now, it is May it is not freezing out but because I didn't know the heating wasn't working I have been walking around comfy, in just a long t-shirt and underwear. I have not worried about leaving the back door open for 5-10 mins while the dog is out there.

Now I know I have contacted my landlord and am waiting for a gas engineer to come out. I have put extra clothes on and I have taken my body temperature to help me warm up but not overheat myself by wrapping up too much.

It's all a bit of a faff! And has messed up my morning. It's also made the situation of my PA not calling me last night worse because I would have probably mentioned the dog was being odd and we would probably have had the conversation of "do you have a headache? Are you feeling unwell? Due on?..." and maybe I would have looked at the temperature of my home. Maybe I wouldn't it's definitely not the first thing I would have thought of. I do have room thermometers in my rooms for this reason, but I only tend to look at them when I am working on the computer in the spare room where it is right in front of me, or in the kitchen because again it is right there. And I don't check my own body temperature as much as maybe I should (according to professionals) but that is just me being lazy and wanting to get on with things.

On the plus side, I can play in the snow in a bikini and don't get cold. I can lay on the beach and not get hot. When I went on holiday to a cold country I could enjoy the cold a lot more than others! So everything has a plus and minus. Hopefully my heating will be fixed today.

Sitting, waiting, wondering

Every evening one of my PA’s phones me to check that I’ve taken my medication. It’s important that I take my medication because obviously it helps to control my seizures. Tonight, and I have no idea why, they have not phoned. And I’m really quite frustrated because it might only be a brief “hey how are you, have you taken your meds? What have you been up to today?” Chat But sometimes there is the only times I speak to people with my voice in a day so they mean a lot to me.

Today, I have spoken to people over zoom as I had my last Makaton Tutor assessments but I really wanted to try saying to someone “I did it” and try and be / feel proud. I’d practiced saying it, without stuttering and feeling awkward. But I didn’t get my chance.

I did worry they were not ok to begin with but then I saw them laughing and joking on Facebook so I know they are!

It also angers me as H does nearly all of them and a couple of others do a few. And H made me promise if someone can’t do one of them or doesn’t do it, I have to tell her because she doesn’t want me going without speaking to someone or missing my meds. I never break a promise so I tell her and she ends up checking on me even when I tell her I’m fine!

I’ve just realised... I’m calling one of my PA’s H and it’s making me think of line of duty!! That’s made me chuckle.

I won’t let it get me down that my PA didn’t call but believing in myself, feeling proud or confident are things I really struggle with. Being praised, being told I’ve done well. It doesn’t feel natural to be told those things, I don’t know how to react. I don’t know how to express those feelings or sometimes even allow myself to feel them. And it might sound little or silly but I worked so hard to say I’d done well, to be confident and now it’s wasted. I have waited up till 11:30pm for my 9pm call. But I’ll still try and feel proud. It’s just hard when you’re also feeling forgotten.

So, my point to this post is to remind people sometimes it is hard to feel good about yourself. And sometimes you want to but don’t know how to say or express it.

It sucks to be forgotten especially when those people know they are the only people you may speak to that day. Sometimes having a disability can be quite isolating.

And today has been good. I’ve spoken to my awesome Makaton tutor / mentor and done my assessment. I’ve not had any seizures and I feel ok. But, it could have been a very different day where I needed that call.

This is most definitely not what I wanted my first post to be about but, as things happen in life it’s useful to write them down in the moment when the feelings are there.

Off to bed now, hopefully nearly a Makaton tutor! A dream, an ambition and a massive achievement. And yes I am smiling :) 

Welcome to my blog

 Hi! I’m Xander.

I like horseriding, going for walks with my dog, drawing, seeing my friends and watching TV.

I have autism and epilepsy and aim to give you an insight into living with these conditions to help you understand them from my perspective.

Everyone is different and I can’t (and would not) comment on someone else’s epilepsy autism or communication difficulties. I am sharing my stories, past and present, so you can understand how my experiences have shaped my life.

Why Satellite X? The X is for me, Xander. And Satellite because there have been times in life where I felt on top of this world as the saying goes.

And I hasatellite because there have been times in life where I felt on top of this world as the saying goes. I know of cheap things, been heard, met fantastic people and have been on awesome adventures. It’s an amazing feeling. But also, because there have been times where I felt isolated or sent a message and it’s not been heard. Times where I have felt like I was looking at life but not actually taking part. So a satellite seems like an appropriate thing to represent all this. 

I hope you enjoy reading my blog.