Living Without HepC

This is a brief New Year’s Eve post wishing everyone a successful and healthy 2005!

Since Monday the paralysis in my face has begun to ‘thaw’. My eyelid only seems to get ‘frozen’ when I am tired in the evening now. My mouth has also thawed and I can just about manage an even smile (if I try hard). This is really great! The Bell’s Palsy websites I checked out suggested it could take 3 months, sometimes 6 months for the paralysis to clear. I can soon escape the nightly requirement to tape my eyes shut.

Carol has been giving me Reiki treatments - I have left each one with a sense of well-being and confidence that my body is healing itself in conjunction with the pegylated interferon and ribavirin.

BUT, the nagging nerves!!! The inflamed nerve causes a pain behind my ear. This is not too difficult to bear but over hours the muscles in my neck nearby begin to spasm. I just caught myself - about to descend into a minute description of my pain and suffering. Suffice to say, after a fortnight of this particular pain (which Paracetomol won’t touch) I am ready to move on.

Carol has offered to give me a reflexology treatment which could help ease the pain. I don’t really like having my feet touched but I am sufficiently keen to move on I will risk my discomfort if it will help.

Despite the pain (and the complaining) I went to work this week. I am aware how tired it has all made me.

So Carol and I are seeing in the New year quietly at home - if I stay awake that long!

Yesterday I felt ‘wrong’ when I woke up and this continued through most of the day. Just a feeling of not being able to get anything together or wake up properly or feel positively about any of it. I couldn’t say there was anything which set this off. I did however feel like moaning about any slight discomfort - for example, the pain from the inflamed nerve behind my ear is still driving me mad.

I am beginning to become aware of a pattern that each week after my interferon injection I seem to have one day where everything seems ‘wrong’ to me - not a good day for no apparent reason.

Over the past few weeks it has become apparent that I don’t suffer a weekly ’bout of flu’ following each injection. Before treatment I had expected this but I feel very fortunate not to have to go through it. Over the weeks, I think I have found and maintained an equilibrium. I am aware of, and can sometimes physically feel, the strong pharmaceuticals in my system and I feel the side-effects, but I don’t feel overwhelmed with these. All the things done by Carol to support my healing help me remain in touch with that equilibrium. I am referring to the liver-friendly diet, the Reiki, the aromatherapy and the all round supportive care she gives me.

I am not ‘fighting’ the pharmaceuticals - I think I would have done two years ago. I want the pharmaceuticals to work - I want the virus gone! I expect and accept there will be side-effects. I try to work with these and find ways to cope with whatever limitation presents itself. I suppose the ‘off’ day I had yesterday becomes part of the side-effects and I need to plan as best I can and deal with things as they come.

I have had a look today at the National Health Service Hepatitis C Awareness website and see that my weblog has been featured there twice - in the Links and in the Information/Treatments section.

So welcome to those of you who have arrived here by this route! I hope you check back again and also leave a comment or two!

I also see there are a number of visitors from the Hepatitis C Association based in New Jersey USA - so welcome to you too!

I actually had to count the ’splotches’ on my stomach and legs today to ensure I was going to do my injection in the right site! I am sure it is the way the hospital counts the weeks that is confusing me - or is it just me ready to be confused and in a brain fog?

So far, I have not admitted to having brain fog - as experienced by most ‘Heppers’. This is some impairment of concentration and memory caused by the HepC, and experienced by most HepC+ people to a greater or lesser extent. I would like to think to a lesser extent in my case but I do experience difficulties from time to time.

This is the 8th injection - as it is the beginning of Week 7. I am certain this is correct but my mind is slowing down and I have to puzzle through the simple logic of this system each time to get it right.

I have also noticed that as this treatment goes on and I am doing less (not working full time, not going out socially much, not getting a lot of exercise, not doing a lot of shopping, etc) that my world is becoming smaller. The features of my illnesses and treatment become more significant for me and I am pre-occupied with them.

I suppose some would say this makes sense - interferon and ribavirin are fairly potent drugs which have a significant impact on my body, particularly my immune system.

I remember my Consultant Hepatologist, Professor Graham Foster, saying at the start of my treatment that approximately 20% of patients have an easy time of it on treatment, 20% have to give up near the beginning as they cannot tolerate it, and the other 60% just struggle through it.

I now have only 40 more injections to go. I remain optimistic that my blood tests in Week 12 will indicate a substantially lowered viral load and I can continue to complete the course because the treatment is working.

MERRY CHRISTMAS TO EVERYONE!!