working it out as I go along

I haven’t updated for ages, because it felt like none of my strategies were working and I didn’t have anything positive to report. But lately I have found some more strategies. They are more physical types of strategies, but they work well.

I had a screening test for Irlen Syndrome (scotopic sensitivity syndrome). I was shown diagrams in a book, such as a picture of an animal that is made from lots of little crosses, and I had to count rows of crosses and explain what I was seeing. The pictures made me dizzy, and I explained that the crosses moved around and some seemed closer than others, and I also had to answer lots of general questions, and then the woman said I definitely have Irlen Syndrome and that I would really benefit from Irlen tinted lenses. I haven’t got them yet, because I haven’t been organised enough to make an appointment, but I will. But, in the meantime, out of curiosity, I tried wearing sunglasses over my normal glasses. I never wear sunglasses, but I thought I’d try it, just to see the effect of a tinted lens. It is strange – it feels like a tangible relief to put the sunglasses on. Especially when I wear a baseball cap – the visor stops any light coming in from the top of the sunglasses. It’s like my eyes relax – I didn’t realise how unrelaxed they were before, but when I put on the sunglasses I realise. I wear them outside when I walk anywhere, and I wear them in supermarkets with fluorescent lights. They work really well in supermarkets – I can wander around and look in the aisles at my leisure without feeling dizzy and rushing to the checkout to get out of there as soon as possible.

So that is one strategy. When I am not being overwhelmed by visual stuff, then my brain feels more relaxed and it’s easier to be organised.

Another thing is working on my core stability. My doctor referred me to an osteopath, who told me that because I am hypermobile, I must work very hard at strengthening my muscles to stabilise my back, and he gave me various exercises to do to work on my ‘core stability’. I realise lately how very little control I have felt over my body – I am uncoordinated and I don’t have good proprioception and I’m always bumping into stuff (actually, Irlen glasses are supposed to help with this too). But when I do core stability exercises, I feel more in control of my body – I feel a centrality in my body which helps me to feel centred and able to organise my life more. I also have started karate classes, which make me more aware of how I move, and to feel more control. I have adapted what I learn to the way I walk in general, so I have learnt to walk in a more coordinated and efficient way – just as fast but using up less energy, and feeling more in control.

So, oddly, these physical things are helping far more than all the organisational strategies I’ve tried to put into place. I need to first feel a central stability in myself. It is hard to start organising anything when everything I see seems to be jiggling around and pulsating and making my eyes/vision/brain stressed and tired. And also hard to organise when i don’t have a sense of centre and strength and stability in my body.

In terms of helping me not spend hours on end on the internet, I’ve found a really simple solution. In my house is one room with an internet wire, and that is where my laptop is. Normally, when I want to use my laptop for study and not for internet, I disconnect it from both the internet and the mains supply and take it downstairs and use it for two hours, until the battery runs out, and then I take it upstairs to my internet room, and go on the internet again. Now I have taken out the plug to the mains supply and put it downstairs. So the pattern is reversed. I can spend hours on my laptop downstairs studying, and if I want to go on the internet, I take it upstairs and plug it into the internet and use battery power, which runs out after two hours.

I am still doing two Open University courses, and I’ve done the first two assignments of each. I am behind – I handed them in late – but I’m doing well, because with OU courses in the past, I’ve ended up missing assignments completely or quitting the course, because I was so disorganised. I’m also not panicking as much as I usually do with assignments. I’m not as organised as I could be, but I’m still systematic in getting them done. And I’ve told the OU student support about my Aspergers, and they are very supportive (unlike the crap college I’ve been attending).

I am now at a crossroads in my life. I’m supposed to be returning to college in September – if they will have me, that is. Which is unlikely as they think that because I’m sensitive to fluorescent lights and I get dizzy easily from travelling then I am ‘too disabled’ to have a job of responsibility in the NHS (well, they alternate between thinking this and then thinking I have no disability at all – basically, they do not want to make any accommodations for me, so they either say I’m too disabled to be on the course, or that it’s all in my head and I need to have counselling for anxiety). Well, whether they have me back or not, I don’t want to return to this college. But I do want to finish my training and work in the NHS, doing a job I feel sure I can do well. So I would like to transfer to another university, maybe starting the training all over again. But I am very uncertain about this – how on earth do I explain the situation without sounding like a whiner with a victim complex? I don’t know what to do about this, and it is making me feel tired. That doesn’t help with overall organisation – I find not knowing what I’m going to do is very distracting. And then sometimes I wonder whether I should change career direction altogether, but I’m not sure in which direction I should go.

So that is my update. There are positive changes but also I am stressed. A big trouble with me is that any little thing that goes wrong bothers me too – my brain doesn’t prioritise and say ‘Well, that doesn’t really matter’. So right now the full stop key on my laptop isn’t working very well, and this is worrying me to great degrees – I am imagining what will happen if it stops working altogether and I can’t end my sentences with full stops. Even though I know this is a silly thing to worry about, that knowledge doesn’t stop it bothering me. Another thing is that the hot water taps in my house are running hotter-than-usual water lately, and I’ve noticed in the past that this tends to precede my boiler breaking and there being no hot water and me not being able to have a hot bath. And the thing in the wall at the back of my house that holds up my washing line is swaying a lot and might come out of the wall and then I won’t be able to hang my washing outside. It’s daft – I know all these things can be fixed, but still they bother me tremendously, because I don’t want it to be necessary for them to be fixed. I want them to be working all the time! And my instinct is to say ‘Oh no – my house has stopped working – I don’t want to live here any more!’ which I know is illogical. I’m also aware that if I go to a different university, I’ll have to move and not be living in this house any more, and I may end up in a house or flat that has things that bother me even more! And of course there is the financial aspect – how am I going to afford it, and whether the NHS will give me a grant if I am switching from one uni to another. All those aspects are on my mind (if anyone wants to pray for me, I’d really appreciate it).