Hi Dad
Mum said I need to explain to you why the bit of light coming round my door bothers me so much. I'm writing you an email because I find it much easier to articulate myself this way than out loud.
I'm sorry if some of this is stating things which you already know. Mum said I needed to explain why the light is an issue, and I don't know how much explaining is needed, and I'd rather not have to come back to give additional explanation if something isn't clear.
I will clarify that it's not always an issue. It depends on whether the lights are on outside my room, and if the lights aren't on then it depends on the sunniness of the day and the position of the sun in the sky. But when these circumstances align badly (which they seem to have done a lot recently), there can be quite a significant slice of light coming into my room around the top and the side of the door.
It's a two-pronged issue.
Firstly, it's an issue when I'm trying to sleep. Even seeing that bit of light makes me feel too awake when I need to sleep. And I often need to be able to sleep during the day, because my body seems incapable of maintaining a consistent sleeping pattern.
Secondly, it's an issue when I'm awake but trying to relax in my room - or conversely, when I'm trying to focus on something. With the way my brain is affected by ME, even little sensory things like a bit of light or a noise take up a lot of space in my brain. So if i'm trying to, for example, concentrate on something, having that light coming through makes it a lot harder to concentrate. And when I'm trying to relax, it's likewise an issue because the light is coming through at the side of my vision and constantly stimulating me.
If we don't do something about it, it will cause even more of a problem to me in the summer, when there's only a few hours in every 24 where it's dark outside. But furthermore, in general I struggle to cope at all when the weather is hot. Heat makes my body extremely uncomfortable far more so than it did when I was healthy, amplifies several of my symptoms, and makes my brain work worse. In hot weather my sensitivity to light is much worse, and the light coming round my door may be unbearable.
I feel sure that there didn't used to be so much light coming round my door. I think the door must somehow have become less snugly fitting in its frame over time.
I ordered the insulating foam strips because my research suggested that this is probably the simplest way to block light out around the door. I asked in an ME forum and other patients have found this method successful. One guy also mentioned that he'd previously used this to create a darkroom for photography.
If you have an idea for a different method, I'm all ears, but really do need *something*. And, given the weather warming up, really need to get something sorted by the end of May at the latest (but preferably well before then as it's already causing me problems).
Thanks.
Sarah xx