This week I’ve been struggling with hip pain and fatigue so much so that I burst in to tears in college after doing an hours work.
That aside, Thursday I felt like I was 15 again! I had tonnes of energy, very little brain fog and I felt so positive! I was even able to stay up till 10pm. Best part of my day was talking to my friend sally who runs wheeling along 24 and also has ME so it was nice to swap tips, stories and most importantly rant!
Whilst family support is lovely, having a friend who knows what you’re going through is great.
Needless to say, Friday I was exhausted and in pain again but that’s the roll of the dice.
So that means I have to skip my boyfriend’s first football match tomorrow (Swansea Bravehearts) and I feel like letting him down but who knows? At the last minute I may feel up to it.
Still no news on new chair despite me ringing. Plus the dreaded catheter change on Wednesday…
Weirdly, the carers service want to supervise a bathing session just so they can put it on a report. (Even though they wouldn’t help normally because of the lifting). We’ve decided to decline the service as their always late and by the time my parents are home and helped me. They won’t cook food my mum has prepared and set aside due to health and safety, they’ve left the front door open and twice have pulled my catheter without apologising and they struggle to follow specific instructions like ‘go to the third cupboard along by the sink and please get the jug to empty the catheter’ They bring a vase, my mum’s peonies have never been the same since. Also, they can be quite patronising!
Meanwhile the search for the PA continues!
Meanwhile Swansea has agreed for me to proceed with my uni application now I’ve submitted ‘evidence’ that my body doesn’t function. It would be easier if it was a stand up/ fall down test. (My mum actually did that once when the DWP demanded I go to their offices to prove my disability.. SPOILER ALERT: I fell but my mum caught me…always)
There you go, there’s you update!