We have been so busy though. My husband and I are not good at sitting around and are always either looking for a project, working on a project or having days out to interesting places because we don't currently have a project.
I don't seem to be spending quite so much time in resus or on the hospital ward so far this year which is good, and it leaves a lot more time to get things done.
Six months ago I was given the go ahead to start a drug trial for something called Omalizumab (or Xolair) which is made by a big pharma called Novartis. I have an injection in to each arm every four weeks and it biologically modifies me! It is an anti Ige treatment and stops my body giving me what looks like allergic reactions. It was very scary to start with and I had to sign a legally binding form at the hospital agreeing that even if it worked amazingly well and changed my life, that I accepted formally that I may never be allowed the treatment again once the six month trial came to an end. Hm. Having been immune-suppressed for many years this was a less potentially risky treatment to try so I went with it with my husbands full agreement.
Yesterday I had what could be my very last injections. It made a massive difference to me over the months and I've definitely had more of a life, but a few weeks ago I was told by my pharmacist that they could no longer get a special antihistamine called Rupatadine. This works in a different way to the more common antihistamines and it is very clear to see that, unfortunately, it was a combination of the Omalizumab and Rupatadine (amongst other drugs for other things!) that was keeping me human. Without the Rupatadine I was slowly turning into a fried, puffy zombie again. I sit with my hands like claws as they burn too fiercely to use - opening bottles and holding pens just too painful - and were covered in a multitude of hives. I have been back to kind of squeezing my eyelids out in the mornings so that I could open my eyes more easily. I've been bloated and uncomfortable. So today I started taking the immunosuppressant drugs again. My hives are dissipating already which is amazing. I now have to wait and see if my amazing, and absolutely life changing allergy consultant (a fabulous human being called Dr Wagner!) can swing it for me to carry on getting the injections as we know that the immunosuppressive drugs on their own aren't enough to keep me out of resus.
While we wait there are things to do though! We recently did a refit on a gorgeous 43ft narrowboat called Eve and it is so very cool to see the new owners are enjoying taking her out! The interior was very dated and had been untouched for many years. There were dirty carpets glued to the lower walls throughout (a popular trend back in the day!) which Mr LFCC finally agreed had to be ripped off and the walls underneath dealt with. There was a nasty dirty leaky shower with a horrible curtain in the bathroom. There was a horrible kitchen with very little storage and what storage there was was tricky to use.
What did we do? Well.... We put new cladding on the lower half of the walls where the carpets had been stripped off. We fitted a stunning black gloss kitchen with real oak worktops, we tiled, we fitted a practical and gorgeous sink with mixer tap, we sanded and painted throughout to brighten and lighten the living space, we fitted an amazing shower with glass doors and a gorgeous modern bathroom sink, and we made the bedroom like new! I made new curtains for every room which helped with my style idea of a kind of tropical beach theme. With dark wood, slightly aged white paint, soft sandy tone curtains, light eau de nil accents, and some of my vintage-esque creations it came out rather nicely even if I do say so myself!