Just a quick post about what happened over the weekend that has led me to be admitted to Frimley again. Mainly for my family and friends as I'm finding it hard to talk at the moment due to breathlessness, so by writing this I can just send you guys the link and you'll know what's going on :)
From Thursday I started to feel a little worse each morning. On Friday Judith, Emy and Charissa from my CF team came to do a home visit to see how I was getting on. My lung function was good at 39%, weight a little down but overall I was good and they were happy. I had my bloods done and they could see how I was coping at home. My parents and Al were around and all my animals were there to say "hi!" haha. Judith, Emy and Charissa were pleased with the amount of support I have from my family and the organisation, cleanliness and efficiency of the home, which was lovely to hear. It was so nice to have them over, like friends coming over for a cuppa! It really meant a lot and they are such wonderfully kind people who go above and beyond in their work for their patients. I am truly lucky to go to Frimley and receive such brilliant care!
Saturday was a bad day health wise and I needed a lot of support from my parents and my lovely aunty Zena came over with a big bowl of delicious soup for me and Al, who was also ill with sinus problems and a migraine. Regrettably, I had to miss one of my bestie's birthday :( I have a few extra special friends who are literally one in a million and Ash is one of them! So understanding of my circumstances and always there for me when I need her. This was no exception and I am so grateful that she has the patience of a saint and understood that I wasn't well enough to attend. I WILL make it up to you babe!! <3
In hindsight, it was a very wise decision not to drag myself up to London for Ash's birthday. That night I was very unwell with breathlessness, coughing, being sick, and just generally very uncomfortable and unable to sleep. By morning I was even more exhausted than I was before bed and called my parent's at 7.30 to ask them to come over. Al and I were meant to be visiting London Zoo with Al's family, but again, unfortunately we had to cancel. I wanted Al to go anyway but he is too loyal for his own good and wouldn't leave me. Once my mum arrived I ask her to call the CF Unit to see if there were any beds. You know I'm bad when I actually WANT to go to hospital! Sweetie, one of my favourite nurses, was on duty and said she could get a room for me on the unit. I just needed to go through Frimley A&E as it was a weekend and there are no doctors on the unit on the weekend.
By 8.45am we were in Frimley A&E majors. I can honestly say Frimley hospital has the best A&E department I have ever been in, whether as a patient or a visitor. Other than loosing Alex for an hour, everything was brilliant: the docs were great at getting my veins; the nurses were so attentive; I must have seen about 7 doctors, all of which were lovely and reassuring and when I was having an allergic reaction to one of the meds they wouldn't leave my side and kept me calm. I can't thank them all enough. By 1.45pm I was less breathless and on my way to the CF unit. Sweetie accessed my port and Al and my mum got me all settled in. Bless them, they were exhausted from the day! They went home to get some much needed rest at about 3.30 and my daddy was up with me from about 6.30. He was his usual self, creating lists of things we could do to pass the time in here (this is where I get my list making obsession from!) and helped me get ready for bed before leaving around 9pm.
I am a lot weaker than I have ever been and need support for almost everything from going to the toilet to setting up my nebs. During the night, after one of my many toilet trips and coughing fits, I felt a lot of pain in my right lung. I have been extremely lucky in my life not to have really ever felt much pain from my CF. Recently though I have been suffering from a lot of back pain and this added lung pain last night made getting comfortable very challenging.
This morning I was back to square one with breathlessness, coughing loads, in lots of pain, feeling sick etc etc. Just overall feeling rubbish. As ever, the team around me have been exceptional and my consultant prescribed me co-codamol for the pain. Ahhhhhh I feel sooooo much better now; I can relax! My heart rate has come down due to not having to be so tense from the pain all the time too, which is great. I've just had an x-ray done of my abdomen to see what's going on in there as I get very bloated and uncomfortable after eating, so once all that is sorted hopefully no more pain and discomfort for me. Then just need to tackle this bloody infection again. My CRP had shot up to 166, so it's no wonder I'm feeling the way I do. I'm in the right place though and just have to fight through it again.
My birthday is in 11 days, but to be honest it's the last thing on my mind; I just want to get better. The only thing I want to be out for is my birthday treat from my aunty, uncle and cousins on 24th Sept, which is a visit to Buckingham Palace and a trip to Phantom of the Opera, complete with a backstage tour as my aunty has contacts ;)
Oooh and tomorrow I start my hypnotherapy! The hypnotherapist has VERY kindly offered to come up to the hospital to start my sessions; I'm so grateful to her as I really need to get on top of this needle phobia once and for all.
In the next few days I am planning another post. It's something I need to write about. I'm only just feeling ready to write/talk about it properly, but I know it will do me good to be open about it.
So until then! xo