Monday 24th June
Not much to today and pretty uninteresting.Had Bluebird for a couple of hours and we did our usual Monday things - hoovering my bedroom, dusting, getting a shower. I was pretty exhausted so my carer made my some lunch just before she left so I could stay laid on the sofa.
Trying to keep cool to prevent any POTS moments.
Tuesday 25th June
Had home physio at 11.30am. I'm really glad that I switched to home physio. A) it is a lot easier as I don't have to bother with patient transport. I can have a nap as soon as my physio has left and B) it's been good to get a new perspective as over the years I've always had the same physio at the hospital.Today my physio brought me different sets of exercises: gentle exercises for bad days, a little bit more challenging exercises for bad days, sitting exercise, easy exercise for an okay day, exercises for a good day and standing exercises. We also have our goal from last week like being able to stand to make a hot drink and being able to push myself more in my wheelchair but I haven't been out the house but I'm hoping to be well enough to go out with Bluebird on Thursday so I can have a go at pushing myself a bit more, but break it down so I push myself of a bit and then my carer will take over and then I push myself for a bit and so on so I don't crash but also so I can build up my muscle strength and give me some more independence.
We're going to meet up again in a few weeks to see how I've been getting on.
I called up Bluebird to book and extra 2 hrs next week to go to the Autism Café. One of my Bluebird carers last week suggested to me about Bluebird taking me so I will feel safer should I have a seizure/fall/faint eat but also just to give me a bit of confidence, so I've done that.
I'm now just waiting for my carer to come at 2pm and it's now 1.36pm.
Had a nice ½ hour with my carer.
Spent the rest of the day resting, watching TV and doing a little college work.
Wednesday 26th June
I was meant to have a GP and then a nurse appt this afternoon but the computer system is down so my Dr's appt has been cancelled which is a bit annoying but I still have my nurse appt.Went to my nurse appt, as my asthma's been worse I have to go back to see the nurse practitioner. I managed to rebook my GP appointment.
Got home and had something to eat. I watched TV and had an accidentally little nap. Came up to my room and did some college work but I was still feeling tired so I slept until Dad woke me up for tea. After tea I watched TV for a bit then had a quick bath and into my pj's.
Coin out the bathroom I had a few seizures. Exhausted I crawled into bed and nodded off.
Thursday 27th June
Had Bluebird 11am-1pm today. We went to Tesco's to pick a few bits up and I came under budget. Got a drink as I was thirsty and forget to bring one with me. We then headed off to get my bus pass renewed. I've only used my previous one which is valid for a year once or twice but it's handy to have one just in case, such as if I need to use Phone 'n' Ride.Home I got some lunch and I'm just putting some mail together but I'm getting tired so I may have a quick tidy and then go lay on the sofa.
Managed to get some college work done this evening but I'm was getting a headache.
I'm having a bad evening pain wise and not much seems to be helping.
Friday 28th June
It's just gone midnight and I'm still awake with high levels of pain and I just can;t get comfortable to fall asleep and even though I'm tired the pain levels have turned me onto 'awake mode'.Had a restful day. My mood started to wobble in the afternoon; not helped by the stress of my holiday and rehab. I found out that the local CCG are only holding my funding for 6 months and if I don't go into rehab n that time my application for funding has to be redone! So that takes me up to October which might clash with my holiday at the end of November as rehab is a minimum of 12 weeks.
I wasn't't sure what to do - move my holiday or get more expensive travel insurance that covers cancellation should I end up in Leeds. I went for the latter and after I while I was happy with the decision as the Summer holiday a) I didn't fancy and b) where more expensive so I've saved money by opting for the more expensive travel insurance and if I do go on my holiday it will be a themed week I'll enjoy (Historical Landmarks).
Saturday 29th June
Stayed in my pj's until about 2 then went to get a wash and the hot water tank is broken!Forgot to pace myself and ending up crashing on the sofa, and then my step-mum's sister and her family came round as it's my step-mum's birthday so there was 3 very hyperactive noisy children running round the house - not helpful at all!
My Dad and step-mum went out for dinner so it was just me and I was not feeling well at all and ended up having a fall went I went to the loo (when I'm not feeling well I either glue myself to the sofa or my bed) so I let CareLink know I'd had a fall but I was okay fall wise but I wasn't feeling well that evening.
I'm now back in my pj's and in bed.
My thoughts are racing a bit as they do time-to-time. I get frustrated with being so limited by my health this is where social media doesn't help at times, but online it's a extremely selective glimpse. It's just a shame as when you're so isolated, sometimes online interaction is all you have.
Sunday 30th June
Slept better-ish, took a while to drop off, but not as long as other nights and I did wake up around 3.30pm but after a while I nodded back off.
I forget to set an earlier alarm clock so when my alarm went off at 9am I turned it off with the intention of being away and getting out of bed, unfortunately I nodded back off, fortunately I have my second alarm which went of at 9.30am and this time I did get out of bed.
I got dressed, had my meds and breakfast and decided to take my morning coffee out into the garden to drink. I felt okay so wen to church with Dad.
Since I've been home I've been on my laptop but I'm getting a bit tired so I'm going to make myself a coffee and settle down on the sofa.
Managed to get some college work done before having an episode of seizures and spasms.
I then laid in the quiet until Dad and my step-mum wanted the TV and then I came upstairs and I had to redo the communication cards I'd started doing on my laptop.
I'm not exhausted and ready for sleep. Not sure what I'm going to do about my Monday shower with Bluebird as we still don't have any hot water.
Managed to get some college work done before having an episode of seizures and spasms.
I then laid in the quiet until Dad and my step-mum wanted the TV and then I came upstairs and I had to redo the communication cards I'd started doing on my laptop.
I'm not exhausted and ready for sleep. Not sure what I'm going to do about my Monday shower with Bluebird as we still don't have any hot water.
Video Description:
- Monday: Pushing down the plunger on my cafetière travel mug
- Tuesday: Writing a letter
- Wednesday: My watch changing the time to 10am and the alarm going off
- Thursday: Peeling a sticker off my colour-by-number book
- Friday: Putting the final stick on my sticker-by-numbers picture which is of a peacock
- Saturday: Turning on the tap in the bathroom
- Sunday: Opening my denim medical filofax
