Today I've just got back to the ward after spending a couple of days at home for Christmas. I had my lunch and then had a nap. It's the evening no and I'm really looking forward to bedtime!
Christmas Eve I just tried to settle back in at home with my daily plan. In the evening my Uncle and his girlfriend came round and we played and game.
Christmas Day I got up and had breakfast then we opened gifts and then I got ready to go to mum and Fred's house. We did gift opening and then had dinner and dad picked me up so I could go home and rest. I had a nap for a little while. In the evening one of my other Uncle's drove down to see us.
Boxing Day I just rested and tried to get back into my routine. I spent my activity time making cards for letter writing to pen pals and utterly wore myself out. In the evening my stepmum's family came round. I only stayed to eat; I found the noise and business really started to flare up my symptoms so I retreated back upstairs to my room with my noise reduction ear plugs and noise cancelling headphones. I also made sure I had everything packed.
There where some challenges and there where points where I go upset as I just got so tired and worn out or overwhelmed but I tried to focus on the positives of my time at home like spending time with family, spending time with Flop and playing lots of games.
There's a quote my friend says: "Just keep swimming and if you can't swim, just float."
Having my daily plan that I have on the ward helped give me direction as to when to rest, wash, do and activity etc. Unfortunately I wasn't allowed a lay-in except my 15 minutes from to get myself awake ready to go and get breakfast. There was also physical challenges such as the stairs at home - I defiantly did my daily physio! I also struggled not having alarms or people reminding or ding my medication for me.
Back on the ward things are slowly progressing which is positive. When you're in the midst of something you get so wrapped up in the moment that you forget to look at how far you've come and that comes with mixed feelings. Happiness on the forward steps you've made but also fear as you're stepping into this unknown zone. (One big fear from me is losing the care package I literally just got before I came here which I fought 6 years for).
One positive is that we're going to ask my local CCG for extra funding to extend my stay here for 6-8 weeks to continue with my rehab.
I'm trying to just focus on on day; one hour at a time. Now I am writing a blog post; next I will get my 7pm snack, now I am having my snack; next I will rest and so on until I go to sleep.
Even though I am progressing it's all still very difficult physically and emotionally. I'm still experiencing constant and persistent symptoms all the time, even when resting, these can rate from just one storms to experiencing numerous symptoms all at once. This obviously makes sleep and rest difficult as I find it hard to settle down and recharge because I'm almost in a battle with myself, my body and my mind. I keep being told things will get easier soon but it's been 10/11 weeks and there's still no relief from my symptoms. I'm just thankful for my medication as I'm sure my symptoms will be a lot wore without them.
I'm now in my pj's (I own far too many thanks to my mum who's bought me a lot of pairs recently) including the ones I've got on now which I got for Christmas and I just want to settle down for the evening. I've asked if my night meds can be given as soon as possible so I can get off to sleep hopefully by 9.30pm.
My sleep time is 10pm and I wake up at 8.45pm so I do get a lot of hours in of "sleep" but (a) often my sleep is pretty broken, I can struggle to get of, often because I'm overtired and (b) I've found with the amount of activity I do in a day and the reduction in day time sleeping that I need more sleep at night.
I think that's all for now. I will keep you updated about funding. I'm looking forward to a quiet-ish weekend and then the following weekend I'm going to see a special gala production by the Northern Ballet Company's for their 50th Anniversary.