Day 44 – What a sodding rollercoaster

You’ve got it, a bad day. Well a bad few days really, but they’ve only actually started to get me down today. I know it’s all about me being so impatient and wanting to be well before time, but no matter how much people tell me it will take time, it is so hard sometimes and gets me down so much.

The history: well after a busy weekend, this week hasn’t felt too busy at all. I got a sleep on Tuesday morning; Wednesday a friend had the kids all day and I slept for 5 hours; Thursday I slept for 2 hours in the morning, sat in the local park for an hour and then went to a friends with the kids in the afternoon; Today, got a 2 hour sleep, a friend made the kids lunch and then we sat in a soft play area all afternoon. Oh yes, and last night I went to bed before the kids at 6.45pm and slept till 7am!!!

The reality: I still feel absolutely, ridiculously tired! More than I have done for ages. I don’t think it is helped by the fact that my neuropathy in my feet has got worse too….my toes feel like they are broken/ thawing from snow chill.

I am so tired I just don’t understand it. I had moved on from needing to sleep all day when I stopped all my medications….so why do I seem to have gone about 5 steps backwards? That’s what it feels like anyway. And people keep saying that it is my body telling me what I need…well that’s just great, but I don’t want to need that…I’d just got used to the idea that life was starting to move forwards, that I could look after my own kids for at least some of the day, and that we could see the light at the end of the tunnel. Life was looking positive. And now it doesn’t feel quite so positive. Don’t get me wrong, I know it will get better (well the sleep issues will even if the neuropathy doesn’t) and I know one day, hopefully in the next couple of months, I will feel like life is more like normal, but I need that now.

Today wasn’t helped by my gorgeous girl. We were lying down on the bed talking before she went to bed and she asked me if I would always be poorly….that she didn’t want this to have happened to us…..and words I can’t bring myself to put down about basically me not dying. The poor thing had me burst into tears on her and hug her so tightly. To which she just calmly told me not to be sad and hugged me back, smiling the cutest smile. How do they pick up on these things? I had to tell her that I would always be poorly but hopefully wouldn’t have to always go to hospital and that the reason I had gone in was so that it would hopefully be a long time before I’d have to go back and stay there. God I so hope that I am right and that I don’t have to go back for a number of years…it has obviously hit her somewhere in her little calm exterior. So that is probably why I am now blubbing my eyes out writing this…in fact probably why I’ve blubbed lots all evening. Me being stuck in bed tired, makes life so much harder for them. So much less normal. And that is why I want it back to normal NOW, and not in the 8 weeks everyone is telling me it will take. That is why it doesn’t matter what anyone says to me, it makes me feel rubbish to be so tired and incapacitated. That is why I feel so sad tonight.