Sally's World

Seeing as it's after three o'clock in the morning and everyone else in the house is sound asleep. It seems like a good time to tackle the issue's surrounding insomnia. I have no hope of getting to sleep next to Dave's freight train like snoring anyhow. It wouldn't be so bad if there was something decent on the telly at this time of the morning...there never is, although I am now somewhat of an expert on African and Indian wild life.

Insomnia is something that I have suffered with for so long now, that I don't even think anything of it anymore. And this is a problem I share with several mums and dads I know. It seems to frequently go hand in hand with having special needs kids.

I know exactly why it began; Aaron had sleep disturbance from day one, he never slept more than 2 hours at a time no matter what, so I had to get used to having short bursts of sleep whenever he did. Of course the other children came along and it was no longer possible to do that, and Dave was working full time, so I never expected him to do the waking nights (besides it would have taken a small explosion to wake Dave once asleep) so I just got used to having less sleep.

Although this may be a major factor in my extreme clumsiness of course!I was always, stumbling out of bed, stubbing my toe, tripping down the stairs, and the kids learnt some rather choice words too.

I guess my body just trained itself to adjust, I got into a routine of four hours sleep and that was that. Of course when Aaron became oxygen dependant, he needed someone with him 24 hours a day. He needed suction, percussion physio, and of course he was tube fed, so it was an every minute job. A family support worker we had recently met did come and see us, and was clearly shocked at how shattered I looked ('you look shattered' I believe actually translates to 'good god woman you look rough')and so she arranged for a nurse to come and sit with Aaron three nights a week for six hours at a time.

So that's when I slept...from midnight to six am on Mondays, Wednesdays and Fridays. I was up every minute of every other day. I did doze of a couple of times, once while I was actually standing up doing the ironing would you believe and another time while I was in the middle of changing a nappy (just a wet one luckily). But I got used to it, and I valued those precious hours in bed.

So I guess my insomnia is self inflicted in some ways, and I now find it impossible to sleep normal hours. It's not my brain or my body's fault, I've deprived it of sleep for so long, it's getting it's own back now.

Besides, you don't really want to be in the same room as me if I've had more than four hours sleep, I'm a nightmare, I bounce off the walls and run around like a Tasmanian devil on acid. Dave and the kids joke about not sitting still for to long in case they get dusted, polished, painted or tidied.

But on the other hand, I don't think I'd get everything done if I had to take four hours out of my schedule. I need another three hours in the day as it is! Twenty hour days seem extreme, but I think my life's pretty extreme. There are too many things I want to achieve to spend too much time sleeping I suppose. of course, the odd lay in would be good.

Night night, sleep tight!

Sal x

I really thought we had it sorted. I thought that today, the results would be in my hand and we would be planning the next step…But once again, I was wrong.

Deion had several appointments yesterday, it was an afternoon of it, we went down to the chid development centre with an extra large picnic hamper and some books and a pack of cards, and just camped out.

First he had his multi disciplinary with his paediatrician. This is an hour long appointment where we talk about all aspects of Deion’s care, weight, height, discus any changes and so on. Obviously the lack of results after Deion’s tests came up and the doctor made a phone call then and there (excellent) he was told he’d get a ring back.

The doctor knew we would be in the building for a couple of hours, so he was going to come and find us when he knew more.

Then we saw the community nursing team, discussed Deion’s pads e.t.c

Then we saw the speech and language therapist…not that Deion has problems with his speech…far from it, but she is also the person that deals with the problems Deion has with chewing and swallowing his food and drink.

Then we saw the dietician where we have to go through Deion’s food and drink and make sure he’s getting a balance as there are many things he struggles to eat now.

And after all that, we still didn’t get a call back. I heard our doctor leave all my numbers, and his own mobile with the relevant person; I heard them promise to call him back. And I really thought that because it was another professional, and not merely a neurotic mum (yep! that would be me!) that they would have called him back.

I guess we’re back to the kneecapping option then!!!!