Open Writing

After our hour's relaxation in Reeth, we decided to move on to Grinton, our destination for the day. Although Grinton is a mile or two beyond Reeth and is slightly off the Coast to Coast route, Tom had decided that, as there is no Youth Hostel in Reeth, we would have to go off route to find the nearest centre of discomfort, and that was the hostel at Grinton. Fortunately, following the disturbed night at the Keld Youth Hostel, I was to stay at a B&B.

We said our farewells to Don, who we would not now see for three days and it seemed a pity after spending most of that day with all five of us walking together. On the other hand, I knew that Don had some thinking to do and that could have been one of his reasons for choosing to walk on in solitude.

'How are things at home, Al?'Tom asked.

'Okay' I answered, thinking this is my opportunity to dump on Tom for being careless with his choice of question. There was no point though. He knew already that things at home were not okay and hadn't been for several years. This was one of the reasons I was here and not away in the Canaries or some other sunny part of the world with Suzanne. The problem was that she has been suffering from one of those chronic fatigue illnesses for years; the sort of illness that doctors have little clue about. They can't pinpoint a cause and certainly can't suggest any treatment.

'Is Suzanne no better?' he asked, knowing the answer.

'No,' I said, 'I don't know how she copes. It's impossible to imagine feeling exhausted every hour of every day, week after week, year after year, getting no restorative sleep, waking up each morning feeling just as tired as when you went to bed the night before. Add to that the constant pain and discomfort of aching muscles and fibres, knowing that lifting your arms to hang out washing or fold a sheet or even wash your hair will hurt like hell. Then, if she has to carry shopping even a short distance, she'll be in pain for two or three days.'

'It must be awful,' he sympathised, 'and, yes, it is impossible to imagine.'

'One of the worst parts of it for her is that people don't seem to accept that she's ill. Even friends. I think the trouble is that she looks normal and people forget everything they've been told, so even friends will expect her to do things without help. When they visit, they'll let her make tea without offering help and they'll outstay their welcome so she's almost falling over with exhaustion by the time they go. They have no idea. Then they'll phone and suggest going out somewhere as though she can do everything they can do without it having any effect. The trouble is that she can-do everything they can do - it's just that she suffers for it afterwards. They don't see the effect and it's this lack of understanding or acceptance that frustrates her most.'

'But what about you?'Tom asked, even though he had listened to most of this before.

'It's difficult for me as well,' I said, 'I try my best, but I don't think she thinks it's enough. And anyway, it's hard to strike a balance. She's determined not to give in and lie in bed feeling sorry for herself, so she keeps going however tired she feels. I want to do what I can but, at the same time, I know that she wants to do some things herself. The result is that if I leave something for her to do, she bollocks me for not doing it and, if I do it thinking I'm helping her, I get bollocked for doing it.'

'I sympathise,' he said, although the broad grin on his face told me otherwise.

'I can't do right for doing wrong,' I said, thinking I sound more like my grandmother every day.

'Have you done any rustling lately?'Tom chuckled.

'This is not funny, Tom,' I replied. 'How would you like it if Pam told you off for making too much noise every time you read the paper? The problem is that her illness has enhanced her senses, so she seems to react to the slightest noise. I tried on a new shirt the other night and left it on whilst we watched television, but she complained that it made too much noise every time I moved, so I had to take it off. And I got another bollocking for making too much noise taking it off.'

'The curse of the creaking shirt,' he laughed, with no pretence of sympathy. I had noticed before that he thought my tales of woe were hilarious, which I did not find supportive.

'It's not just her hearing either. She's sensitive to light as well, so we've had to have 'black-out' blinds fitted behind the curtains in the bedroom,' I continued, to Tom's obvious amusement. 'When I get up in the morning, I stumble about the bedroom in the dark, afraid to switch the light on, and being careful to make as little noise as possible. When I go in the bathroom, I close the door behind me, as quietly as I can, waiting until I'm inside before I put the light on, have the quietest shower and shave imaginable before creeping out. I sneak across the bedroom on tiptoe and as I reach the door, I hear a voice from under the bedcovers:

'It's like Piccadilly bloody Circus in here.'

'It's not funny,Tom,' I said again, as he doubled up in laughter.

'It's entertaining, though,' he said 'in fact, they could make a good television comedy out of it.'

'Maybe, but it's not funny when you have to live with it. What I have to remember is that it's much worse for her than for me. I think I'd be much more irritable than she is if I'd woken up every day for the last five years or more feeling as though I had a really bad dose of flu.'

'Is she coping while you're away?' he asked, more serious now.

'I think so,' I replied, 'I phone every night and she seems alright. In a way, it's good that we spend a bit of time apart. It's difficult for us to go away together very often because it's such a big effort for her to prepare herself for the journey, and I think she quite likes to have a bit of time on her own now and then.'