Did not sleep so well - kept waking up but did feel refreshed by morning. Felt heavy and a bit dizzy.
I am keeping at work during my treatment - people at the focus group I attend say that working helps, if you can manage it. I seem to be able to cope, except I do feel strong irritation bubbling inside me when I come across nonsense or short-sighted behaviour. I have to tell myself to count to ten and not fire from the hip!
Attended my monthly focus group this evening. I am not able to say anything specific about this except to say that it is a tremendous support group, organised by the Heptatitis C Trust, which does a fantastic amount for Hepatitis C sufferers in the UK on very slender resources. The composition varies each month but there are always regulars and people who come from time to time. The breadth of experience is very wide. Several types of Hepatitis C are represented, the most common being the hardest to cure, genotype 1 - like mine.
Among the people I have met with Hepatitis C over the last few months there has always been a debate about whether or not to have treatment. The Interferon and Ribavirin combination affects different people in different ways and some would prefer to tackle natural palliatives, such as herbal treatment, or to wait until a more assured, and less body battering treatment comes up, especially for genotype 1. There are strong hopes for the VX950 experimental treatment right now - having met someone who successfully cleared genotype 1 in only a few weeks, and who reported a strong success in the trial, I am very optimistic about this. I was not prepared to wait. Treatment though is an invidual decision.
The Hepatitis C Trust offers support to everyone and not judgemental about whether or not to have treatment. One facility the Trust offers, which is very comforting, is a patient advocacy service. I know that my treatment will be reviewed after three months. The current National Institute for Clinical Excellence (NICE) guidelines say that this should happen. After three months there is a qualititative PCR test, which is a viral load test to see if treatment is working, in terms of lowering the viral load. It is if there are any question marks in this area that the advocacy service could be a great help. But for me that is still some way off.
Several people I know with Hepatitis C suffer terrible itching. There are various remedies, well documented on the Hepatitis C Trust website (www.hepcuk.info), but ones I have heard recommended by word of mouth include a product called Oil Ulate, which you put in the bath. Also lavender oil in the bath is recommended. One remedy I am keen to try at some stage is shey butter, a West African remedy from the shey tree. My itching is just minor and a dab of antiseptic cream seems to do the trick at the moment.
I have debated with myself whether or not to take the herbal remedy Milk Thistle, which is good for the liver. There is information from herbalist Claudia Lauch and others on the Hepatitis C Trust site. I have decided not to use it at present during treatment but to re-evaluate this decision in the future.
One food that I have tried to have a lot of is smoothies. I am trying to ensure I am getting plenty of natural Vitamin C - and making up a smoothie on the blender is a good and very palatable way of doing that.
It is very sobering but of the people I have met having treatment I certainly seem to be suffering the least, which puts everything in this blog into perspective.
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2 comments:
I've noticed you are taking your riba late. Are you eating food when you take them? it can help.
Don't often comment, but do check on you each day:)
Thank you Carol - yes, I always have my Ribavirin before going to bed at night but make sure that I have something to eat with it.
Comparing my experiences with others at the monthly focus group of Hepatitis C people, I seem to be getting off very lightly so far!
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