The last four weeks have been mentally, physically and emotionally draining. I've gathered a lot of bits for my book!
But in all seriousness it's been full on. We've had a lack of rest from Ethan which has resulted in one incredibly worn out mummy. Everyone says how well I look on no sleep. Well for the first time i'm sharing pictures of me exhausted just to show i don't always handle it well.
Ethan had a week of seizures where he needed me throughout the night to get up hourly with him to help deal with the seizures. He had a few days off school from this which is always full on as he needs to be watched constantly. This is not only physically draining as he needs moving regularly so he doesn't get sores or painful muscles but also emotionally draining as the constant fear of what if is always there with every seizure.
Ethan sleep patterns are always all over the place which doesn't help anyone!! If I know what the night would be like then I could be prepared but every night is so different. The last few weeks he's been struggling to settle at night meaning he's not going to sleep until 11 most nights after lots of settling from us or trying different things to guess what's wrong with him. This means we never have an evening to relax or time together which is really hard. Then who knows when he will be awake! Then the alarms go off for seizures or low batteries etc! He's also struggling with sore legs still at night and as he can't move himself if he's moved one leg he can't get it back to the right position which means he gets upset and needs us to move him back into a comfortable position.
Ethan also loves an early morning!!! Anytime from 3 is a great time to get up and party!!
Ethans only done one full week at school since Christmas as he's either been poorly, had a couple of inset days randomly in the middle of the term and had a few appointments. We had a trip to Bristol for a VNS vamp up. This takes up a whole day and is incredibly draining on us. Even though the appointment was only 20 minutes we have to leave with plenty of time to get to Bristol with allowances for when Ethan needs feeding (which is every couple of hours!).
With all of this going on our respite time without Ethan is incredibly important. We are used to having Ethan every other weekend giving us a break after 2 full on weeks of care. Now as I've mentioned before we're lucky to have this but it reflects in the little extra care we are given from social and county. We haven't been to the hospice for 7 months which has a big effect too. When we go without care of any form it reflects on us and our health. Unfortunately I am prone to exhaustion. After tests for ME and fibromyalgia it was diagnosed as chronic exhaustion which will flare up when I'm run down. Having been let down with lots of care this year already my exhaustion has kicked right in and after a full on four weeks I'm suffering badly. We obviously know none of this can be helped but that doesn't make it easier.
My body starts to unwind before a long period without Ethan. I begin to start preparing myself to hand over Ethans care. So when at the last minute care gets cancelled it's hard to come back from that and to pick yourself back up again and carry on with the day to day care.
Here's to a better February!!