It's been a little while since I've done a spoonie update so I thought that I would do a little update for you all cause a couple of things happened. Big interesting change....we've been waiting since January for a neurology referral that was cancelled back in February despite the letter not stating this and the specialist hospital trying to put the blame on my GP (honestly if banging my head on the table wouldn't bring on more head pain, I'd be doing that right now). I finally got re-referred to neurology in October but have been told there is now up to a 12 month waiting list to see them and I've gone onto the wait list for a cancellation appointment.
Last week I saw finally caught up with respiratory consultant and finally saw an OT as my of the pain clinic. As part of having bad asthma, they now also believe that I have vocal cord dysfunction which could be causing some of my symptoms and is apparently very common for symptoms to overlap and people to have both conditions at the same time so I've been referred to ENT to get it diagnosed and treated so that we can hopefully get somewhere with my asthma. In the pain clinic, I've mainly seen the pain consultant and the physio but it was recently suggested that see one of their occupational therapists of the pain clinic team and after having the first appointment where the referral it stated I was a type-a person and highly motivated person in my mind but struggling with it physically due to my complex health conditions. Originally I was referred to my lovely OT for helping with pacing but after doing an initial assessment, we are going to start from the beginning and see where we can add in any additional support so at the minute we're focusing on sleep because let's face it's bad sleep causes issues with everything else afterwards when you wake up.
From previously working in ITU then going straight into private nursing, I'm not used to working with OT's so as soon as she asked occupation, her immediate response was that she is going to change my impression that OT's are all about equipment so it'll be interesting to see how working with an OT goes and I'll be sure to keep you all updated with it and on my progress. I have also made the decision to reduce my working hours even further as due to my sickness from my complex health conditions I was given a final written warning (which was I won't lie was quite confusing and is a whole other story). There's has been a lot to juggle whilst working 30hrs a week and having a handful of complex health conditions so I'm hoping that reducing to working 3 days a week might help to give myself more time off during the week to try and help manage my health conditions, pacing myself as well as juggling the million and one different medical appointments that you have to go too.
How is everyone doing?
Speak to you next time!
