Week 41: Wednesday
I have come home from a long weekend in Brighton feeling more exhausted than when I went – for a rest. I wasn’t surprised that I was pleased to be back in our friend’s flat by early evening each day to just sit quietly and go to bed early. However I was surprised to be so worn out by a two hour stroll around the marina and harbour breakfront on Sunday morning. And all the other wandering around we did in Brighton itself. By Monday morning I was feeling nauseous and unsettled enough in my stomach I didn’t want to eat any lunch – a first experience.
I think it must be the case that the latter stage of this treatment brings residual effects. It seems to take me more energy to do the things that even a few weeks ago wouldn’t have been tiring. And the little things seem to throw me off equilibrium – the seagulls waking me up and keeping me awake. The air at the seaside was damper than the city – and I wanted a woolly jumper on while the locals were comfortable in shorts and t-shirts. Etc. And it takes me longer and longer to recover when I go off-kilter.
However, none of these things deter me or keep my spirits down for long. They just seem more minor impediments to be coped with inside this reduced life on treatment. Soon I will be starting the countdown until our next trip away to Spain – aware this time that my reduced lifestyle will continue to look approximately similar to the ‘manana’ and ‘siesta’ culture prevalent there. So my pace will fit in very well with the lifestyle there.
Yesterday morning I received my papers from the General Social Care Council confirming I have been admitted to the register of social workers. I had been vexed about this application earlier in the year when I had to declare my HepC status on the form. The question they asked on the form was “Do you have a physical or mental health condition that may affect your ability to undertake your work in social care?” I wanted to answer “No” – as my HepC has never interfered with my work. But I discovered the helpful instructions required me to declare any “serious communicable diseases”. To me this is a double-bind question. I have it in mind to raise this issue with the GSCC now that I have been registered but cannot say I feel I have the energy to do so at the moment.
There are more positive uses of my time and energy. Having established that, I am off to the garden to spend some time in the sunshine before I go in to work this afternoon.
August 18th, 2005 at 4:11 pm
Ron, Treatment is sort of a toxic tsunami. I think a lot of us go through it and don’t realize until it’s over that we have to just ride that wave and expect the unexpected. Some of the effects are just not a mind over matter thing, except the place that you can come to of ‘acceptance.” Even after treatment during recovery there were many “aftershocks” for me. So many times I thought (and still do) that it’s completely over. Then I’m overcome with some limitation that I have to deal with and accept. Learning to go with it and pace yourself…it’s hard, sometimes seems impossible. I’ve been following you blog since you started it, in my last months of treatment when my mind and body were completely saturated and my functioning level had become nil. I expect you will recover much sooner than I did. But just giving you some pearls of advise from being there myself.
Nadine
August 19th, 2005 at 7:34 pm
Hi Rone,
Welcom back from your trip to Brighton. i am back from Cardiff. i was very tired too but i thought atleast i enjoyed some kind of rest and holiday.
my tiredness has nearly gone i hope you alright soon.
with best wishes,
Ijaz
October 10th, 2005 at 9:54 am
HI Everyone
I just want to tell all of you, those currently on treatment, and those about to take it, not to give up- keep going. My husband has been given the all clear after a really really tough 2 years (1 of treatment, 1 of waiting for the results)It was so hard for us as we had no support, the treatment changed his personality and it was a very difficult time for us both. He was told that that he had only a 1 in 3 change of being ‘cured’ because he had a particular rare strain to treat.
Obviously everything is worth it in the end and we’re both really relieved. But I really felt we were the only ones in the world, even though we told all our friends, no one really understood, they just thought he had a cold. Even our GPs had no idea!
I think this site is wonderful! Good luck to all of you, my thoughts are with you.