General update

My health is worse in some ways than it has been in a long time. This is primarily due to the fact I was served notice by my care agency and had less than 2 weeks to recruit. I’ve been going week by week sorting my care, and alongside actually getting used to and training new people as well as a totally different format of how I receive my assistance, it has been utterly exhausting. I am hopeful to keep doing things the way I am, but I just don’t know as I am waiting for a care plan. I could end up back with the same system that kept me in fight or flight (not that I’ve successfully left fight or flight entirely anyway).

I trialled the ketogenic diet for 2 months. Dr Myhill had recommended it twice by this point. I’m sad to report that it’s just another thing that made something worse. My heart would randomly becoming tachycardic, or just generally have a big heart rate increase as soon as I tried to do anythng. I’m currently struggling to work out how to increase my carbs without adding in too many things that hurt my gut or make the fermenting gut worse. So far I’ve been having butternut squash, 90% dark choc, carrots, oat cakes, and dried figs. I would like to stop the oat cakes and minimise the butternut squash….but it will be tough getting enough carbs in to stay out of ketosis. I’m not sure what my future plans are with Dr Myhill. All I know is I’mnot well, and the last two things she’s recommended have done more harm than good. I don’t know whether to get back to her asking for advice, or just go straight on to getting tests ordered. She wants to test for EBV. I don’t know if I had a viral onset. Yes, I did have viral symptoms when my health crashed in March 2010 which I originally saw as the start of my illness, but EBV NHS test was negative (apparently that’s not too uncommon). I also want to try and treat the fermenting gut with herbs instead of antibiotics. I’m scared though after what happened with the antibiotics. The pain in my hands and elbows has decreased a lot recently, but it’s still there. I still feel like the antibiotics did some damage. I don’t believe it is just a ‘herx’. This would mean Uva ursi and plant tannins but the plant tannins Dr Myhill recommended contain casein so I don’t know if I should go with those or switch to a similar one without which does not advertise itself as having the same affects on the body. It is very confusing. Perhaps I should consult dr Myhill before starting. Right now part of me feels like just doing it alone for a bit.

I emailed my GP 10 weeks or so ago about my bowels. He has finally gotten back to me and we are just trying to work out a date for him to come out with the district nurse. This scares me. There are several health issues that if I had a supportive team, I would bring up – but I don’t feel like I do, so I keep quiet about important issues. I just hope they will be helpful about my bowels, and also that they won’t be pushy about why I’m not moving forward. I’ve had an awful year if I’m honest. I’m always hopeful that this will be the time that I have the energy to give towards workign on sitting up, but then it is taken up by something care related usually. If I can get my current PA care system working long term, then I think it will really help me heal – although right now I’m so damn exhausted that I just don’t know when that will happen.

This week’s drama is that my bed is broken and need replacing. Problem is that I can;t get out of it. I’ve been so thankful to have PAs and not carers at the moment because the chain of events that needs to happen to get me in a new bed is so complex. It involves:
District nurse prescribing a new bed and mattress
Community equipment store providing the bed and mattress + setting it up alongside my current one.
999 being called and asked to come and move me in the next few hours (apparently this is the only way).
The equipment store coming the next day to pick up the old bed.
I just hope it doesn’t affect my health too badly if I’m honest.

Anyway it is very late at night and I really should try to sleep.

I have some things in my journal that I have thought I would like to share, but then again they feel too personal. It’s difficult to balance this blog and how honest I want to be.  I will at the least post some poetry soon.

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