I Actually WANT to write…finally!

Today I had an hours extra sleep because I felt too tired when my alarm when off. I didn’t have breakfast until midday. But all of a sudden I was just listening to a podcast and playing a game on my Ipad when I thought I actually want to write something.

This is the first time I have had this feeling for as long as I can remember.

I haven’t written anything on here in way too long but there has been, what feels like, a lot going on for me.

I have been job searching, I have been having tests to find out what is causing me to be ill and, of course, I have been ill for about three months now. However, I feel like I am getting to the end of this stage and moving into the next.

Let’s talk about my illness first.

After accidently eating something containing Lactose a few months ago I bought some apples and was eating one a day but I wasn’t getting better, I was still having attacks. I stopped eating the apples and the attacks stopped but other symptoms lingered. After many a night of being in pain with my belly and being very fatigued I called the Drs. I have ended up having to have blood tests, send a couple of samples off and see a gastroenterologist. But I finally may now what’s causing these issues.

One of my samples showed that I have an irritable bowel disease, most likely some form of colitis. I am just waiting on a final appointment, where I just need a small procedure done and then should get my official diagnosis, and then I can start on treatment. The best news from all of this? Getting the correct treatment will mean that I will be able to eat what I want without any more attacks. That’s right, folks, I will be able to eat anything containing lactose, I’ll be able to have cheese, I could eat a proper curry for the first time in my life!

This is huge and could completely change my life.

The blood tests also showed that I am severely deficient in Vitamin D so I have been prescribed super strong tablets for 20 days and then I have to take a particular type of other-the-counter vitamin D for the whole of winter. The tablets I am on are so strong that I have already noticed the difference. I am not nearly as fatigued as I have been and I have started getting urges to do things.

And that’s why today I actually felt like I wanted to write. Ok so on the other hand I was meant to go to the shops today but I didn’t feel up to it but that’s because my body has other female-specific things happening that is preventing me from being able to go out today.

A big indication that these tablets are working is because I went to the shops the other morning and I came home and didn’t crash. I got the shopping put away and then I did some filming and editing for my YouTube videos.

All of this is giving me some startling revelations as well. When I have been employed but have felt exhausted over the winter it might not actually be because I am overwhelmed from being exhausted, it actually might have been because of fatigue caused by a vitamin deficiency. This is going to help create a massive change in my future. So what if I have to take a vitamin a day over winter when it means not feeling rubbish every single day and not feeling like I am fighting through sludge whenever I am trying to do anything.

So let’s get to the job section of this lovely ramble.

I have been getting fantastic support through Reed to help me get back into employment. My work coach helped me write up an up-to-date CV, helped me choose jobs to apply for and also reinforces that I don’t need to just apply for jobs willy-nilly but to be pickier and to only apply for things that I know I would be capable of doing.

This brings me round to yesterday and I actually had a job interview.

I am trying to not get my hopes up too much because I actually would love to do the job and think it would be perfect for me. It’s working in a very large charity shop in the fashion department and the majority of the job will be working in the back (not on a shop floor) sorting through donations, quality control etc and typically working on my own. That would be great for me and I also think I could contribute to the store in this role.

So that’s it, a whole round up of what’s been happening with me recently, why I haven’t been writing and why I am writing today. Don’t forget if you want to keep up with what I am doing you can subscribe to my YouTube channel for weekly videos – https://www.youtube.com/channel/UCUVDox_MJVMPOmYxqbaSdGg/


Adult With Autism: I’m I’ll and I could have prevented it

I didn’t manage to post last week as I was feeling terrible but that’s a whole different kind of illness than what this post is about.

I know that my being ill this week has been my fault, hopefully accepting this fact will mean I actually start doing something about it. But, forever being the I’ll do it tomorrow woman that I am, I haven’t convinced myself so far.

This week has been a bit of hell with illness.

The main thing was getting Chinese take away a few nights ago and eating one of the chicken balls my boyfriend had ordered. Of course I’m lactose intolerant and batter has milk in it so why I thought I wouldn’t be affected is beyond me. Even though there are things I have been able to eat without incident in the past I also know that more and more things are now causing me full blown intolerant attacks. I’ll spare you the details on what these attacks are like, if you have had one then you’ll know, but it does cause crippling pain. The doubled over, can’t even put one foot in front of the other pain.

Usually, when these attacks happen, I’m fine (if a bit tender and weak) the next day. This time has been different and I’m still suffering days later.

The night of the lactose-gate (as I am now going to chose to call it) I spent sleeping sitting up on the sofa as I felt like I was going to vomit whenever I laid down.

This is where the second it’s my fault I’m I’ll comes in.

The next day my boyfriend and I had planned to get out to the shops for a bit. There were things that were needed but it was extremely essential to go and I should have postponed and rested. Instead I decided to go. And I exhausted myself. I walked around far too much while my body was trying to recover and have ended up not only prolonging the illness effects but also causing pain to my legs and feet. An added sensory irritation I could do without.

That night came about and I was so exhausted I fell asleep about 9pm, a rarity for me and one I knew would bring it’s own set of consequences. I woke up at 3am and managed to get an hours nap at around 6am. My boyfriend had slept on the sofa as I, apparently, had managed to hog the whole king size bed my 5foot tiny body and he didn’t want to disturb me (yes, I know how lucky I am to have this man).

I spent the next day attempting to rest and recover. I still couldn’t eat much (not like me) and my food had to be as bland as possible. And then I started getting painful cramps again as I was attempting to get settled in bed. This time I hadn’t had anything that could have caused it and it wasn’t painful enough to be coming from anything I had eaten, I think it was just from tiredness or over exerting myself. So another night was spent on the sofa sleeping sitting up (this was last night as I am writing).

And I know some of this could have been prevented. I know that a lot of the stomach issues I suffer with can be prevented and yet I can’t seem to motivate myself to do anything about it.

I spend the majority of my day getting everything done from the comfort of my bed.

I’m extremely inactive.

I don’t drink enough.

I barely eat fruit and veg.

And these four things are contributing or causing a lot of the problems I’m having. I know this and I tell myself I’m going to improve on it and I never do.

But this time I’m determined to make a change, one small step at a time. I’ve told my boyfriend that on his days off he has to make me leave the house and just walk around with me for at least 20 minutes. On the days I don’t go out for a walk I have gotten some small exercises from the internet to do just to move about a bit more. And these exercises really are small. They’re called 5 in 5 and you pick five different exercises to do and do each one for a minute. Very simple but it’s a start to just get my body used to exercising.

The only thing I can do about drinking more is try it but this is the part I could do with some hints and tricks to help me. I’ve gotten some reusable straws so I can lazy drink and not even have to pick anything up but I also need to find cheap, decent tasting drinks to mass consume.

Fruit and veg? Well that one can just stay as a future goal for now.

Adult With Autism: Sleep Problems

I have had problems with sleeping my whole life, it’s something that is one of the few constants in my life and I’m pretty sure it’s something that is going to always be a part of my life. I have gotten used to it and the persistent state of tiredness. Mix that with (currently undiagnosed) ADHD and you have a recipe for disaster.

Well, not disaster as that would mean actually having the energy to create something diastrous!

My current phase of sleep is that I am not tired at night (or my mind is refusing to admit I am like some 5 year old fighting against bedtime) so I don’t get to sleep until around midnight. Then I wake up anywhere between 5am and 7:30am. 7:30am is when my alarm is set so I at least know I am not going to oversleep. Then I spend all of my day feeling exhausted, not getting much done, not being able to concentrate on anything etc. Seriously, I nearly poured half a bag of sugar into my cup of tea instead of filling up the sugar pot a couple of days ago and then I got myself comfy and ready to attempt some writing, went to drink my tea but it wasn’t there and I had actually left it in the kitchen. These little incidents happen nearly daily for me now.

And the problem with me actually getting to sleep is something I have struggled with all my life. I appear t be the only person I know, although I don’t know a lot of people, that has to concentrate to get to sleep. I envy those people that can just shut there eyes and drift off, the people who are asleep within a minute of closing their eyes. My boyfriend is one of these people and, during moments of sleep-deprived jealousy, I have often felt like flicking his nose or something to wake him up. If I can’t sleep then you should keep me company! (I joke, I would never do that, he needs his beauty sleep).

My method for getting to sleep is something that has evolved over the years from an exercise I remember my mum helping me with (I’ll have to ring her and clarify when she taught me this as it is a distant memory). I have to close my eyes and concentrate on blocking out any background noise so that I am forcing myself to hear nothing. Then I needed to think about something that made me happy. It’s a more detailed, slight variation, of counting sheep. Instead of the counting, which would make me more awake, it’s remembering something happy and going over the details of the happy memory. At the time, as a young child, all I thought of was birthdays. I have always enjoyed birthdays because I got cake, would see all my favourite people, and do what I wanted practically all day and then be exhausted at the end of it and be able to sleep. So thinking about a day that would exhaust me also made me feel exhausted and I would be able to get to sleep. Somewhere along the line the memory disappeared and I end up picturing a black background and the word ‘birthdays’ instead. I have to concentrate on this to be able to get to sleep, without doing so I can not sleep at all.

Then we move onto when I am actually asleep. My mind doesn’t shut off like a lot of peoples do. This means when I am sleeping it is still firing away as though I am half awake, resulting in bizarre dreams and, even worse, terrifying nightmares. Some nights I am lucky and I don’t have either of these but that’s less nights than when I actually do have them. Sleeping doesn’t provide me with the amount of rest I need meaning I usually need to sleep more than 8 hours to be able to get anything done in a day and I am tired constantly. I can’t actually remember the last time I didn’t feel tired.

At this point in my life I haven’t found a viable solution. One previous visit to a GP had them contact the sleep centre and I was sent some very strong tablets. I never tried them as I needed to take a week off work and have someone with me for as much as possible as the side effects when first starting them could be quite severe and I wasn’t able to do that at the time. No other solutions have ever been given to me despite my many conversations with various Drs, counselors etc. I have looked into the possibility of taking melatonin and I actually meant to mention that to the Dr last time I spoke but, in a wonderful storyline plot twist, I forget because I was tired!

For the moment I enjoy the days I am in so much pain that I need to take co-codamol as they are so strong they make me fall asleep without having to try or the nights when my anxiety is high so that I can take one of my anxiety meds and that helps me fall asleep. I hope t have some update in the future that will include a breakthrough moment and I will have this sleeping malarky cracked.


This weeks One Awesome Autistic YouTube videos:

An update vlog as thinks are starting to happen in my life: https://youtu.be/ryuaznZ-59U

Previous weeks videos:

Getting to know me vlog, I answer 10 questions: https://youtu.be/RViPjlVohsY

All about Echolalia: https://youtu.be/IYtsJz55lhs