Sunday saw not only the usual PV activities but hubby's parents in a flap over me as my breathing had gone to pot. I couldn't even stand up to go to the loo without them fussing over what was I doing and where was I going.
It's lovely that they care so much but when you're feeling rough all you want to do is curl up on the sofa under a blanket and slob out. They were talking about staying an extra night just in case I end up going back into hospital on Monday and they would take me in.
Between hubby and me, we kindly persuaded them that all would be well and I promised that I would take things easy so they packed up their things and headed off to meet friends for lunch (en route to their home).
Nothing is pretty much all I did. Hubby wouldn't let me cook, clean or lift a finger around the house, so a just had to chill out and relax the best I could.
Monday morning saw me getting up with hubby as usual to see him off to work and start the usual PV bits and bobs. Mum phoned from her work at 8.30 am wanting to know if i'd called the Brompton yet...which I hadn't, so she then started going on about what I need to tell them and I was to call as soon as she hung up. Mother i'm 34 years old not 16, i've made phone calls before...lol
I left it until 9 am before I called and spoke to Millie my CF nurse who has a chat with my CF team and decide to put my steroids back up to 20mg!!! Oh great....now it's gonna take me even longer to get off of these "make me look fat and bloated permanently" pills BUT if they make me feel better I guess it's an ok trade off.
Millie tells me to take 20mg for 1 week then step down and to call on Wednesday to discuss my progress.
She also tells me that on the syrup prep of Itraconazole my levels are now good and the aspergillus should be getting under control. Then why am I feeling so rubbish when everything indicates it's all going well?
Anyway, I spend the rest of the morning getting washed, dressed and tidying the house which, by the end of this, i'm doing a very good impression of a fish out of water.
I call mum and ask if she can go and put in a prescription for me as i'm just too rough to go out and do it. 30 minutes later her and Bob arrive and chat about what Millie said and what I need from my GP's. They head off and I wait for the benefits that 20mgs of steroids are supposed to give.
Tuesday felt a bit better. Even managed to do a 1 hours cycle on the exercise bike....things are looking up.
Dee came over and we drive over to the Pottery cafe in Hythe to collect our pots. We've decided to finish them at home as it's too dusty for both me and Dee and the baby to do there. So I now have a large box filled with glazes, brushes, mixing pots, sponges, pencils, sanding paper AND 2 large pots sat in my dinning room waiting for a masterpiece to happen...lol
We pop by mum's to see if she is OK? Bob had left to go out to their holiday home in Cyprus for the next few months (mum couldn't go because of issues with her work, but is going out in a few weeks time for a month) and she was being Mrs mop cleaning the house.
After an afternoon of girly chat we all go our separate ways and everyone's feeling happier that I'm finding things a little easier.
Spoke too soon. Tuesday night was an absolute nightmare. Was in so much pain and real problems catching my breath. I called Millie again 1st thing Wednesday morning and she is concerned and wants me to come in to out patients ASAP. I really want hubby to be with me which means the earliest he can take me is next Tuesday. Millie agrees on the proviso that if I can cope or things get worse I call and come in sooner. I kinda feel a sense of relief that i'm going back to get things sorted but also scared that there is something else causing these issues.
I decide i'm not going to give into this and feel sorry for myself so I let mum and Dee both know that I would still like to come shoppping today BUT I may need to be pushed in my chair for some of it. They say no problem so off to Folkestone we go. I managed to walk around half of Asda before i'd had enough and went chair side.
We had to stop off at Starbucks (such a shame I know...lol) so Dee could feed Isabella. Gave me the excuse to treat myself to one of their scrummy hot chocs topped with whipped cream....well whilst on steroids...lol
The rest of the shopping trip involved a bit of spending in a couple of clothes shops, an absolutely amazing cook book from Waterstones and a new DS game called Prof Layton....something or other (which isn't a bad game actually). So an enjoyable afternoon was had by all.
Breathing wise I should be on top of the world with all the meds i'm on. In reality I'm pretty close to the bottom of it. I hope Tuesday will see some light (or at least breath) at the end of this tunnel.
Blog more soon
PS. Does anyone else have a link on their blog to the Organ donation people? I applied and they've sent me a link, but I can't get Blogger (add a gadget) to accept it. Any help or suggestions would be greatly received.
Rest in Peace Aunt Marybeth
1 year ago