The last few weeks have involved lots of me gritting my teeth.
I eventually stopped throwing up every evening but I was still spiking a temp. Sometimes it would go up to 37.9 but never over the magic 38 which is an automatic trip to hospital.
I’ve been really struggling to eat and drink and of course that in turn has made me feel extremely weak and fragile.
In the end I felt so awful I contacted the hospital. I went in for a review to the day unit. They were their usual brilliant selves. My long suffering partner managed to walk into a lamp post after dropping me at the main entrance. She phoned to tell me this and my lovely nurses said for her to come to the Unit and they would sort her out. They cleaned and dressed the wound and even got a dr to assess her. What a brilliant service. They are worth their weight in gold. She is now the proud owner of several steri-strips and a bit of a black eye. What an eejit! Lol.
Getting back to me, the bloods showed the infection and inflammation markers were coming down. Sadly my HB was also falling. The doctor thought I had reacted to the antibiotics and that made me feel bad on top of whatever virus I had. She wanted to see me again in a week.
Since I saw the doctor my temp has settled and I no longer have been having those spikes. I’m drinking better and have slowly increased my food intake. It’s still not back to normal yet but better than it was. I guess the dietician will have something to say in clinic this week.
One of the things that has persisted is very itchy skin. It drives me to distraction. If I dare scratch it, it makes it 10 times worse. I’m sure having to wear all these extra layers to keep warm isn’t helping. I’ve been given a tablet but it’s not helping. I wonder what on Earth is causing that.
I need to concentrate on getting my strength up because I’m as weak as a kitten. I also need to work on increasing my food intake. I’m working on the little and often method just now. That seems to be helping. It’s such a weird feeling when nothing tastes right and you just don’t fancy dinners. I still struggle to find drinks I like the taste of too. I’m very pleased I can drink water again but I can’t take my tablets with that because I can taste them. Every morning and evening is a real struggle to swallow a plateful of medication. I so can’t wait to reduce all this medication. I’m sure that will help with the nausea.
Before I had the transplant I was thinking about all the things I’d be able to do once I recovered from the transplant and got back to normal. Now I’m 16 months post transplant I’m wondering if I will ever feel normal again. It seems to be dragging on and on and on.
I guess the important thing is that I don’t lose hope and I keep going. I’m sure at some point things will change. In the meantime I have to be patient and just keep putting one foot in front of the other.
Thank you to all of you who are in my corner and who offer me words comfort and support. It means a lot and makes a difference. I may Be physically frail but I am a spiritual warrior. I might not be able to do loads but I can still listen and I can pray and I can hold hands and I have an endless supply of hugs. As you think of me, do let me know if I can do anything for you.
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