Caitlyn has for the last 3 years or so had a problem with being tired. It’s ruining her quality of life. And it’s something I can’t let be brushed off any more.
About 3 years ago, maybe more she started being extra tired, at first I thought it might be related to puberty or laziness. But gradually it got worse to the point I thought she might have narcolepsy but then she didn’t just fall asleep whilst walking, it was whenever she sat down, movement as on a bus, train etc. And also I noticed if she laughed a lot she would fall to the floor with her mouth twitching. Well there is a disorder called cataplexy which is linked to narcolepsy so it made sense. Armed with this data I took her to the doctors and I described her symptons to the doctors, who then referred her to have an EEG as they thought it sounded more like epilepsy.
An EEG and a MRI later Caitlyn was indeed diagnosed with epilepsy [right temporal lobe with a tendency to generalise epilepsy] she was started on medication and that was that. I assumed that the epilepsy was making her tired. But with the meds it got a little worse, I told her consultants so her meds were upped. Nothing changed, but it was ridiculous the amount of time she spent sleeping.
Since we’ve moved she has seen a new consultant who said he can’t explain the tiredness, he ran some tests on the meds she takes to see the ‘base’ levels and all came back normal. He can’t explain why she sleeps so much. The end.
But that’s really not good enough. It really is controlling her life. Everything she does, is ruled by if she can have a sleep, or if she will be too tired. Her school is really understanding. She has a bedroom at school with a proper bed for when she needs it. The thing is with Caitlyn’s tiredness, she can get quite angry/aggressive if she hasn’t had enough.
At the weekends, if we do something it has to be timed around whether she can have a sleep before we go or when we come back. If we catch a bus anywhere, she will sleep. She falls asleep at the computer. Whilst watching tele. It’s unfair. I would say she spends about 15 hours of the day asleep. 15 hours!! That is a hell of a lot.
The last week or so I have been researching online, and all I can seem to find is Chronic Fatigue Syndrome and reading up on it, this could be what she has. But why has no one raised this before? I have taken her so many times to the doctors about her tiredness, they just dismiss it. She has always suffered with her bowel too, had to be admitted to hospital to literally be flushed out [TMI?] she suffers with sore throats all the time. So maybe it could actually be this?
But now I feel between a rock and a hard place. You see, I hate HATE taking her to the doctors, all her life we have been in and out of doctors/hospitals and I sometimes feel like I make this stuff up. But this can’t continue. Something needs to be done. We all love to sleep but when it starts to take over your life, you really need to question it. I just want my energetic girl back. I’ve not seen her for over 3 years. So I guess I will make an appointment and be quite adamant that I want something to be done. A diagnoses, tests or whatever they need to do. Maybe it’s linked to her chromosomal abnormalities. Who knows. But that’s the point. No one does. I just know I don’t want to be palmed off. As we have been so many times before.