Apologies for sharing this post not on my usual Tuesday posting day. It's taken me longer to write this than planned.
I generally share topical posts but every-so-often I do share life updates and I haven't done one for a while and there's been a few bits going on in my life so I thought now would be a good time to share a life update post. There's a lot to update on but I'll try and keep this post as short as possible whilst still trying to fill you in.
So for a while now I've been waiting for orthopaedic surgery on my toes but due to my EDS (Ehlers-Danlos Syndrome) local anaesthetic has little effect on people with the condition so I'm going to have my toe surgery under general anaesthetic. I could have had it done about a month ago but I was taking antibiotics at the time as I keep having reoccurring infections on one of my toes and I had to be 3 week clear of antibiotics to have my surgery. So anyway I got a call from the orthopaedic admin lady and she explained that she'd been thinking of me over the weekend (which was lovely to hear) and rather than waiting for a slot she decided to book me in so I could have my surgery as soon as possible. Unfortunately the date she booked me in for was the 16th June - the day before my birthday 😕
It's Tuesday (15th June) now - I'm writing this post in littles bits giving little updates (I normally compare blog posts in little bits here and there anyway). I'm just waiting for my PA. The plan today with my PA is to pack an overnight bag to take into hospital 'just in case' as if I was to be admitted due to COVID no one would be able to bring anything to the hospital for me.
So I've had my surgery, unfortunately I had to stay in over night which was my birthday so it was a bit rubbish having to spend my birthday in hospital. The surgery went okay though there where some complications plus I was a 'complex case'. The anesthetist was lovely and spent a lot of time with me and use the smaller paediatric equipment to avoid dislocating my jaw and he really really listened to me about my illnesses and how they they affect me and also how they will affect my surgery such as managing my pain post-op and and reducing my dislocations etc.I was quite poorly in theatre recovery but I was well looked after. I now have the district nurses coming to do my dressings which helps me out a lot.
I got home from the hospital around 7pm and I still felt nauseous from my surgery so I didn't feel up to eating my special birthday tea (bangers - aka sausages, mash and beans) but I did feel up to eating a little ice-cream as my throat from being intubated in theatre. Mandy had found some salted caramel vegan ice-cream (which was very yummy by the way and you can find it in the co-op). Whilst we was eating the ice-cream I opened my gifts from my Dad, Mandy and my brother.
Then the next day, Friday (18th June), I had a restful morning and I opened the gifts from friends that day and I was filled with so much gratitude and love at how carefully chosen all my gifts where.
One life positive is that I now have a PA; she started at the end of April so we're in a nice routine now and the help is fantastic and we get on so well. We can have a laugh but she's very professional and supportive and is great with dealing with everything.
I'm also awaiting for an assessment with adult social care and I'm really really hoping that I can be given some sort of a care package. I did get given a care package back in 2019 just before I went to Leeds but when I got discharged and reassessed last year it was taken away and I never even started using the care package. I've tried several times in the past to get a care packaged but I never even got an assessment so fingers crossed and I know that my current PA will support me as much as she can which she's said she will do as she can see how much I'm struggling what with her being the professional who sees me the most.
So all-in-all health wise I'm struggling. My health is worse especially my M.E which my neurologist thinks that lack of care both due to COVID and also not having a carer where two bit factors but I have his support and now my PA too.
My extended birthday has been enjoyable and Mandy made me pancakes for breakfast (today is the 23rd June) so I said that it was a belated birthday breakfast and made up for my birthday tea.
I find special occasions like birthday's hard as it feels like another year passed in which I've been ill and all that comes with it and another year ahead of the same challenges but I'm trying to focus on the positives as much as I can though I do sometimes especially at the end of the day feel down and 'sick and tired of being sick and tired' but my friend Ruth has a lovely quote "just keep swimming and when you can't swim just float" and I know that it's okay to float for as long as I need to and that I have some amazing people in my life now that I've come to know who also having health challenges that I can turn to.
I've been making thank you cards for everyone who's sent me cards and gifts so that's kept me occupied as does my letter writing. I'll leave this post here as I think I've given a sufficient up date.