Aspies and change

One thing that people with Asperger's find hard to cope with is change. Well, I certainly went through a lot of that last year when I went into hospital. That was the first major change to my life. I think it helped me because I knew in advance (the day before) that I was going in, and I knew that I had to go as it would help me and my health. Then came more change as I went from one hospital to another to find out what was wrong with me. Again I knew it was to help find out what was wrong with me. I somehow managed to cope with all of that change until there was one change too many for me. I have described it my memoir like this

 I went from the quiet of ICU to the noise, lights and busyness of Doulton High Dependency Unit. The contrast was amazing. One thing us Aspies do find hard to cope with is change. This change was hard for me. I had coped well with going into hospital, then from one hospital to another and another, but this was something else. I think now it was that plus being in a strange environment that made me unable to sleep for three nights.

Once I got used to the routines and everything happening to me in that ward, I calmed down.

There was more change to come when I got home, and then Mum came home too. I shall tell you about that in the next post.

An Aspie in hospital - sleep

 I don't know about you, but I can never sleep properly in another bed. So being in a hospital bed was no exception. I didn't sleep too bad to start with despite the sensory challenges of noise and lights about me. I slept in normal beds with controls at the side in both Lewisham and King's which was OK. It was when I got to St Thomas's that I had problems. I was able to sleep on my side like I do here at home but when I was at St Thomas's I had a portable heart monitor wired to me which was connected to the monitors in the corridor outside. I was unlucky and got a faulty monitor. It kept on going wrong and the batteries kept running out, especially when I was in bed asleep. I was often woken up by a nurse asking me if I was OK as the monitor wasn't showing up. There was even a time when I was fast asleep and I was woken up about it. Yes, I was fine until you woke me up. Grr... There was a time that I slept so soundly that I didn't hear the blood transfusion IV machine beep to let me know it had either stopped or run out of battery. The lady next to me had to get out of bed and find a nurse to turn it off. I knew nothing about this until I woke up that morning.

Then I had my surgery, was in ICU (don't remember much about that, thank goodness), and moved to the High Dependency Unit. Oh my. The noise, the lights, the busyness, that bed. The strangeness of it all. I couldn't sleep at all the first few nights (more in my memoir to come). The bed was a special one that helped to prevent bed sores and went up and down under you. Not good when you have diarrhoea due to the antibiotics you are on. Oh, and yes the tubes all about me stopped me from lying on my side. I had to sit up, facing up to go to sleep. A position I wasn't used to. After the fourth night I started to doze off now and then and slept better. When I finally returned to the first ward I was in, I slept much better. No tubes, no monitors and quieter. I recovered more there as I was told I would do. 

But nothing is best than my own bed. Who agrees?

An Aspie in hospital - routine

One thing we Aspies like is routine. I certainly do. So when I went into hospital, that went out of the window, as they say. But...they do have their own routines, which in their way did help me cope.

Meals – The meals all were dished up at certain times of the day. If they were late, which sometimes they were, and I got hungry (hangry), then I'd be angry. At least I knew what time of the day it was. The meals I had is another post as I have various food intolerances.

Medications – This was one routine I had to get used to and accept. I had my own routine, especially with the two tablets for my IBS. I always took them as it said on the boxes; before a meal. Did that happen there? Nope. They had their own system, plus they had to order one of them in. I even had a go at one nurse about this and she had a go at me. (I wasn't the only patient to have a go at this nurse – she was an agency nurse not a ward nurse). That is another story. I came to accept the new routine but one thing I hated, or it annoyed me, was to be woken up at 10pm with 'Julie, time for your medication.' Hmm.... Grr.... And especially when I was about to get to sleep. This was the same for what they call Obs (observations) such as taking blood pressure and temperature. Another way I knew what time it was.

Nurse shifts – 8am and 8pm. This was the routine at most hospitals, especially in the High Dependency Unit at St Thomas's. When the changeover happened, I knew it was eight in the morning or night.

Lights out – When the lights either went on or out, I knew what time of the day it was. I could wind down in the evening, knowing I was about to sleep for the night. (Sleeping in hospital is yet another post).

All these routines helped me to cope being in what was a strange environment for me, especially in lockdown, and no one could visit me.

I am currently writing my memoir about my journey with endocarditis, including my hospital stays.

An Aspie in hospital

Two weeks ago it was my turn to be admitted to A&E. I suddenly got terrific pain in my left side, with a fever, feeling faint and being sick. It was a kidney stone passing down my kidney to my bladder that caused the pain (found that out last Friday) and a kidney infection. It was my first time in hospital knowing I have Asperger's. Here is how I coped or not.

In A&E I didn't think it was as noisy as I expected it to be. There was lots of people and light. From there I was taken to Urgent Care. I was in pain still and hot. There was a lot of people waiting. A couple of times I came over faint. When I was finally seen in triage, I was taken to Majors in A&E. And put into a cubicle. Comfort at last. And privacy as the staff closed the curtain. This helped shut out noise and lights. I saw staff go to and fro outside. I was mainly focussing on myself. Trying to feel comfortable with a dull pain, trying not to be sick and having to cope with nurses trying to get blood out of my right arm. Having been sick a lot, my blood had dried up and was too thick. I had to be put on a drip to get more fluids in. That was my left arm.

Then in the early hours of the next morning (just after 1.30am) I was wheeled into Clinical Decision Unit. What a difference! Even though it was early morning, it was darker and quieter, and I could only see one other patient there. I liked this, even though I was still not right and had a drip connected to me. The quiet calmed me down.

A couple of hours later I went for a CT scan to find out what was happening. I hated this as the corridors were dark then bright. Had to shut my eyes most of the time. The scan wasn't too bad.

My mum finally left about 6am as there wasn't any transport before that to get home.  A few hours later I went home in a hospital cab in one of their nighties and a blanket over me. Not very warm but was so pleased to get home.

Thankfully I am slowly on the mend now, and am back on my feet. I am taking painkillers to keep pain under control. I finished the course of antibiotics last week and was told that I don't need any more. I am limiting any foods with calcium and oxalates in as they are the two things that mostly form kidney stones. So nut products are limited as well as celery and berries.

Shopping as an Aspie

When I usually go shopping, I don't think about myself as an Aspie and how everything affects me. I just get on with where I want to go and what I want to get, then go home. But last time I went shopping, I took  note of all the things around me that could affect me as an Aspie. Here is what I thought.

On the bus going there, if I'm with my mum I will chat to her so I try to tune in to what she is saying and tune out others talking; but this can be hard when other people have v loud voices and shout to each other, and little ones crying. If I am on my own I usually look out the window and tune out other people talking around me.

Inside the shopping centre I noted all the lights and the music. The lights were quite bright and could really affect someone, esp a child, with a sensory challenge to lights. The music was quite loud in places, with different music coming from different shops at various levels. Can be a hard challenge to a child with major challenges with noise. I don't mind communicating with shop staff because I have to, but I try not to speak as much as I want to. One thing I don't like is having to go back and check something with staff in a shop eg being charged wrongly. I hate this as I feel that everyone is looking at me, and I hate confrontations.

So, here are my tips for shopping as an Aspie:

1. Write a list of what you want to buy
2. Put that list in order of the shops you need to go to
3. Try to tune out other people's chat on the bus
4. At the shopping centre, try to tune out the constant chatter and music
5. Concentrate on just what you want and where you are going.
6. If you get flustered, and have an Aspie card, and feel you might have a meltdown, then show it to people. Don't be afraid to do that.

So that is how I felt shopping as an Aspie and my tips for a good shop. If you have any more tips, please let me know.

Me & Asperger's - the RNA talk venue

I am now posting about what the venue was like as an Aspie. The journey wasn't too bad - there wasn't too many people on the train and tube when I went (different story coming home). I found the venue easily as I'd been there once before. Usually when I have been somewhere once and know I am going again, I remember the route. The talk was at the Sir John Balcombe pub in Marylebone. There is the pub upstairs with the function room downstairs. There was music going on in the pub but it wasn't too loud and you couldn't hear it from down below. There wasn't any music downstairs. It had twinkling lights on, so if you don't like lights then it wasn't for you. It was fine for me. No noise, low lights. The seats were spread about, so people talking didn't get too much for me.

All in all, except the travelling by bus, train and tube, the venue was OK for me as an Aspie. I will go there again.