Living Without HepC

It’s almost 7 pm and I am sitting here still in my bathrobe having lounged about all day not doing much of anything. When I woke this morning at 8 am, I felt very fed up – with ‘my limitations’. I thought I have no energy or enthusiasm for doing anything. Could have been going for a walk in the nearby country park, to the Summer Exhibition at the Royal Academy in town, to the cinema – or even doing some painting at home or cutting the grass and some household jobs. But I couldn’t be bothered to push myself or get myself together to do any of these things. All of it such an effort. At the same time doing ‘what I feel like’ (not much) seems such a waste of time – this is the only time I will have this day. I feel frustrated this is all I want to, or can, do with it – sit about being tired.

So I did some Reiki meditation and then felt more centred and relaxed about the day. I visited the blogs this morning – doesn’t it now take ages to catch up with everyone’s news as the blogging community has grown! It is inspiring to hear how everyone is coping with this treatment. Then I fiddled about online, researching and planning for the portal website I have mentioned recently in the Forum – and talked to Ben about some of the technicalities.

After lunch I decided to go back to bed – something I haven’t felt like doing in the middle of the day for weeks, doing a few Sudoku puzzles (brain exercise at the very least) and fell asleep. Decided I didn’t feel like going to yoga. So I guess I have been pottering about for the rest of the time.

I read somewhere recently people discussing the enjoyment of just pottering about. I agree there is some pleasure in ‘being in the moment’ and ‘going with the flow’ – enjoying the activity whatever it is, instead of being filled with feelings of what I ‘ought’ or ’should’ be doing. Yesterday I had an aromatherapy massage from Carol which did leave me feeling both energised and relaxed – so pottering was enjoyable and acceptable then. But – and there is a but, I did spend yesterday doing just this and now today – how much time can I potter away? I haven’t been out of the house for two days – as I haven’t felt like it.

I am aware that my 3 evening a week job did leave me tired this week – I guess I have not previously really realised how much energy it takes out of me to join ‘everyday’ life and perform at my best over this time. I admire those on treatment who work full time, especially in stressful work environments – don’t think I could do it. And I haven’t been sleeping the long hours I was previously, for some reason, so I suspect some of this weekend’s tiredness is to do with that.

A couple of hours ago I received an email from Martin, which he ended by asking how I am as he observed I sound a little flat since I have come back from Spain. In part, it is about being back from Spain – it certainly feels easier to be on treatment in a warm sunny climate where the pace of life is inherently slow and laid back, and free from the practicalities of everyday life (work, household jobs, finances, etc). If it was practical and possible I would go back tomorrow for a long stay.

I feel I have reached a kind of plateau stage in my treatment – where I am relatively free of big side-effects and now just live within the limitations of treatment. For the most part, I think I have come to terms with and accepted living within these limitations. Today, though, I am not feeling so accepting of the limitations – although writing all of this down enables me to see and feel that the constraints are not so great really.

And I can recognise that what I have written could border on ‘giving myself a hard time’ – when there is really no need. I can sense there is a chemically induced buzzing and twitching below the surface pushing me emotionally and causing me to feel fed up, frustrated, restless. And at the same time no energy or enthusiasm to do much. Strange stuff these drugs. But re-reading all this makes me feel the day hasn’t really been a waste – relative to other days on this journey through treatment. I have survived the perverse emotional push and pull of these drugs and done enough to make me appreciate I have lived this day, Sunday 5 June, and learned from it.

My server was down yesterday afternoon and evening – and my ISP had a problem with the BT platform on the weekend, so I have not been able to get online much over the past few days.

I saw Mynurse yesterday for my monthly appointment. I guess it was evident I was having ‘one of those’ days, so she commented I wasn’t very talkative – and I agreed. Not ‘up’ nor ‘down’ just un-focused and quietly drifting along – not even grumpy. Everything seems ok and no new issues or problems to discuss with her.

Amongst other things we discussed my viral load count – the tests that were taken on 8 Nov when I started and on 31 January. My count in November was 153851 IU/ml or 5.19 Log IU/ml. In January this had dropped to <2.3 Log IU/ml and <200 IU/ml. PCR negative.

Apparently no tests exist that can count below 200 copies per ml at the moment – but there may well be in future. This led me to ask what my Hepatitis C status could be in the future if I clear the virus next year. For example would I still have to declare I have HepC as there could be some virus although undetectable? Seems a difficult and unclear area which Mynurse didn’t have a specific answer for – other than to point out patients could and should take this sort of issue forward for clarification by the medical profession.

Today, I am feeling slightly achy in some of my joints and muscles. I am looking forward to my weekly massage from Carol. I was recently asked if Carol does massage for anyone else beside me. Yes, she practices a range of Complementary Therapies (Reflexology, Aromatherapy, Reiki, Indian Head Massage and Holistic Massage). She has other clients (besides me) with blood borne diseases – Hepatitis C and HIV, as well as more general clients. She can be contacted regarding treatments using the email link on the side-bar. She practices from our home in West London.