Progress Report - March 2002
It's not always easy to remain as positive about living with ME as I so boldly claimed when I first set up this website. It is now exactly ten years since my health degenerated to such a degree that I could no longer work. I have now been retired for as long as I worked, and there's no getting away from the fact that I have virtually lost a decade of my life: a decade when, by all the laws of culture and society, I should have been getting married, having children and/or carving out a career for myself.
I try not to dwell on these facts, instead I try to live my life quietly, on a day-to-day existence, with the occasional 'adventure' which gives me a goal - something to aim at and achieve. I feel better about myself if I can do this, and if I don't worry about what the future may or may not hold. There's no point worrying about something which is basically out of my control.
Re-reading the earlier pages on my website helps me to realise that I have come a long way since it was created. My self-expectation is higher than it was a year ago, because there have been numerous goals achieved in the last year. I'm still too weak to even consider returning to work; I still can't achieve many of the things that I set myself; I still get lots of headaches and lose my voice for a while everyday, but I know that physically I can do more, and my recovery time from exercise has improved enormously.
Higher expectations can be a reason for dissatisfaction, of course. I still have to be careful not to reach too far. Having come this far, I do not want to go backwards again. Patience is a virtue they say - and for those of us with ME/CFS, we know patience is vital to our well-being.
I am still making regular visits to a spiritual healer, and continue to experience steady progress as a result. Progress isn't something I can measure or see on a week-by-week basis, but once in a while I will walk a little further than usual, walk up a slope without pain, climb a staircase without pausing and come back down without hanging onto the bannister rail, and I realise that I am doing something I've not been able to do at any stage during the last ten years.
When I completed the first pages of this site, I had just graduated from the Open University, and was looking forward to travelling to some concerts. My weekend in Harrogate in July 2001 was a great personal success, though a tiring time. For the first time since becoming an invalid I planned to be active on three consecutive days - travelling from Gloucester by rail and a concert on the Saturday, a second concert on Sunday evening, and the long journey home Monday. It was nine years since I'd even gone out on consecutive evenings, let alone attempted three active days in a row.
I couldn't have managed the trip without Ros who organised rail tickets, fetched teas, carried my bag, and sorted out alternative plans as three out of our four trains were delayed. On the return journey she even had to put up with my running commentary of the Wimbledon final, as I listened to the radio coverage!
The journey aside, the weekend was wonderful. I caught up with friends I'd met at previous Michael Ball concerts, and met other e-mail friends for the first time. The concert hall was adjacent to the hotel, so many fans were staying there - what a relief to be close enough to walk from my hotel room to the concert hall without the need of transport! It was the largest hotel I'd ever stayed in, and I was on the ninth floor. A year ago the size of the place would have been daunting, but I was able to get around without resting, though I always carry my folding stick/seat with me, just in case.
Katy and Marilyn helped me climb the spiralling slope which led to the hall itself. It was a rather long and winding climb for me. I had to pause to ease the myalgia in my thigh muscles. I know that I could now manage that climb without too much of a problem.
We took our seats, and then the fire alarm rang - so back out again whilst the firemen checked that it was a false alarm - it was - so back into the hall. If all this was meant to exhaust me, it didn't work! I had taken extra royal jelly so that I would be able to cope with the exertion the concert would require. This, topped with adrenalin is what gets me through concerts. The show was wonderful. Michael Ball was in great voice, and he treated us to a show packed with fun, romance and drama, and we thanked him with well-deserved standing ovations. I applauded so much that I broke two rings - knocking them against each other - one was so badly misshapen, I could hardly remove it - the other one has a section missing!
Back in the hotel after the show, a group of us talked into the early hours. I don't think I'd talked as much in years as I did those two evenings at Harrogate. With the adrenalin still flowing I didn't get much sleep, but still got up in time to breakfast with Katy and Marilyn the next morning. After only a few hours of sleep I was tired, and determined to take it easy until that night's concert, but I was able to talk and walk quite normally. A year before I would have been unable to get out of bed after so little rest. I would have been too exhausted to move properly, let alone speak and make coherent sentences.
It was more difficult to recover from my next afternoon nap. Once I'd got to sleep on the Sunday afternoon, I found it very hard to come around, and was almost late for the concert. The second dose of royal jelly for the day gave me a much needed boost, and I lasted well past Midnight once again.
After some emotional farewells the next morning, Ros and I had a couple of hours to wait until we could catch our trains. It proved to be a very long and tiring day. More rail delays and not being able to see the televisation of the Wimbledon final added to my frustration as I tried to listen to the Radio 5 Live commentary, which kept disappearing as we travelled between embankments. At least the delay at Leeds meant I was able to hear the entire fifth set uninterrupted.
I fell asleep on the journey home, and by the time we reached Gloucester I'd stiffened up. We have a particularly long platform at Gloucester station, and the train pulled in at the point furthest from the exit. I began to walk but it was very difficult, and I could feel myself slowing up. Luckily, my parents had come to meet me, and Dad fetched the station wheelchair to take me to the car. That was the last time I used a wheelchair.
The next concert of the summer was at Audley End in July. This entailed another long journey by rail, and more delayed trains. Ros once again was there to help me, along with her daughter Laura - always useful to have an extra bag-carrier! What would I have done without you two?!
The three of us arrived at our lodgings the day before the concert. With such a long journey, we had decided to stay two nights instead of just one. This had the benefit of making sure I had a good rest the day of the concert, and that Ros and Laura would be able to meet up with friends in the afternoon. Unfortunately, it meant that we had to endure two nights in the Pub from Hell! Next time, we will do more research before we book our accommodation. Enough said! You don't really want to know about the stains and the mould, and the strange smell emanating from the wardrobe.
At least the Queen's Head was close enough to Saffron Walden centre for me to walk to the shops. The day of the concert was hot and sunny, and I was strong enough to walk around the shops with Ros and Laura - another first for me. Saffron Walden is only a small place, but I can actually say that I walked around town.
Ros and Laura went off to join the queue for the concert. As this was an open air, no seating concert, they wanted to be sure of being near the front of the queue to get a good position. After lunch I took my nap in the pub accommodation, propping open the sash window with a bottle of water so it would stay open - I needed the fresh air you see, what with that smell from the wardrobe.
I'd arranged for a taxi before my nap, knowing that I'd be voiceless after my sleep. The taxi driver dropped me off at the entrance to the grounds of the stately home, quite some walk away from the concert ground. Not a problem! I rested a couple of times, but really was able to walk quite well. When I got out of the car, I could hear the rehearsals in progress, though it was out of sight. Michael was rehearsing his rock and roll medley, and I walked towards the voice!
There were lots of people already queuing, many of whom I recognised. I joined Trudy and Hugh, who once again looked out for me, just as they had done at Cardiff the year before. When the gates were opened, Trudy ran for a good spot, and Hugh carried the picnic table and food. They were already beginning to get settled by the time I reached them. We settled down for our picnic, and an hour later, people were still streaming into the grounds. Turning around there were picnickers as far as the eye could see.
Once again, Michael was in fantastic form, and put on a great show. The sound was perfect, and his clear powerful voice filled the night air. The evening was rounded off with fireworks and a struggle to get out of the car park. Hugh and Trudy had kindly offered to take me back to my lodgings. I begged them not to drop me off at the Pub from Hell, but they insisted.
After being served mouldy toast and scummy tea the previous morning we decided to skip breakfast and headed straight for the railway station. With no cafe at Audley End station, and no trolley service on the first leg of the journey, we arrived parched and starved at Birmingham where I bought an overpriced hot tea. More delays in the hot and dusty station, and I was tired, by now. I am not overly fond of New Street station.
Both of these concert trips tested my physical abilities to the limit. I ended both trips more tired than usual, but I had no lasting ill-effects. If I had thought that I was pushing myself too hard, I would not have even attempted the trips, but I knew that I could cope, if I was careful. I didn't talk or walk when I didn't need to, or didn't feel that I could, so I wasn't straining my muscles, or wasting energy. I stayed within my limits, and discovered that those limits are not as constricting as they once were. For the last 18 months or so I've been pushing my old boundaries, and finding that I can pass them. Every so often I need to explore the new boundaries, and see what happens.
Family holidays with three children under ten could be quite a test. Eight of us rented a house in Woolacombe last summer, overlooking the bay. It was frustrating not to be able to join them on the beach, and whilst the rest of the family could walk down the steeply sloping garden, through the garden gate to the village, I had to be driven, even though the shops were literally a stones throw away. I stayed in the house and rested on the patio whilst the family went down to the beach. Or I would be dropped off at the cliff-top and could watch them playing, but that just makes me feel like an invalid spinster aunt, and I don't want to think that way.
I was able to join them for some trips. One of our favourite places
to visit is Lee Bay, a few miles up the coast. I've been visiting
Lee regularly since I was ten years old. The last coastal walk
I took was to Lee from Woolacombe, eleven years ago, but I've not even
been able to walk from the pub to the beach - until last summer.
We all had lunch at the Grampus Inn, where the girls are able to run around
in the garden. Then we walked down to the front. Dad was going
to drive me, but I was determined that I should try the walk. If
it proved too difficult he could go back and bring the car as close to
the path as possible. It's not a long walk, not by most people's
standards, but it proved quite a milestone for me. I rested a couple
of times, but the myalgia was not severe and soon passed, so I was able
to continue. The road passes close to the slip-path, so it's
easier walking access than most of the beaches in the area. I reached
my goal, and walked onto the beach.
An important day for me was the one when I went into Gloucester on my own for the first time in over ten years. 'On my own' means no wheelchair, nobody else to decide where I will cross the road, or to pay at the counter for me. Just me.
I knew the Park and Ride in Gloucester would be easy to use, so long as I could park fairly close to the bus stop, so reducing the amount of walking required. I would be able to get to the nearest shops to the main town centre stop.
Dropped next to Boots, I crossed Eastgate Street. Last time I did that, the road hadn't been pedestrianised. Mum had wheeled me around the cobbles countless times, but I'd never stepped on them before. No traffic coming. Walk right across. I can't emphasize how strange such things are in a place that was once so familiar.
Imagine how tempting it is to buy meaningless rubbish just because you can - Oh, I know we all do that, but walking into a shop is a real novelty for me.
Seats in the middle of Eastgate Street offered regular rests for my legs, and I had my trusty stick for emergencies. Into Dixons for some tapes, which I didn't buy. Instead I watched a disaster movie unfold on the banks of television sets at the back of the shop - a disaster movie without a hero, who should have been there to save the world. After a while I had to tear myself away. After all, life does go on - at least those who weren't caught up in the attacks.
Back in the street, shoppers were carrying on as if nothing had changed. They didn't yet know. A Big Issue seller stopped me - not to sell but to talk. He'd heard the news on the radio. Such a tragedy has an equalizing effect on humanity - we reach out to talk to strangers to try and voice what we cannot comprehend.
Quite a day. One small step for this woman; one giant leap backwards for mankind.
Loads of Michael's fans recognised me at the Donmar. I'm sure I must have known half the audience on one of the nights I was there, because of the contact we have on the Internet. Amazing what renown a website can bring!
I was back in London the next Monday, taking advantage of a ticket bought by an American friend, who couldn't make the trip. I took a gamble on my energy levels and travelled there and back the same day - three hours by coach each way. I slept on the journey between Cirencester and Heathrow, so I was just 'coming to' when I arrived at my friends' hotel. Pat Boyd and Susan Hammer met me with a wonderfully warm greeting as I stepped out of the taxi. We joined up with Chris Kitchen and Trudy Bradburne to squeeze into a taxi to take us to Covent Garden.
I walked across the Garden - a real milestone for me. It was there, in February 1992, that I collapsed with exhaustion, just finding enough energy to get myself home. That is the day that marked the beginning of my invalidity. I felt that I needed to be there again. I still try not to look ahead. I can't plan for anything. But I can't help feeling this is a circle which is slowly drawing to a close. Whether it will ever fully close, no-one can say. Not yet.
After the show I made some hasty goodbyes so I could rush back to Victoria to catch my coach. I didn't get home until 2.30am, so it was a very long day. The return was a difficult journey. Sitting up for so long, I found that my legs were jumpy with twitching muscles, and pain in my knees - all feelings I'd not experienced for some time. This was obviously one step too far. So that told me where my new boundary lay. Thankfully, there were no long-term repercussions.
So I was able to go back to London four days later! Was I obsessed with this show? Yes, see my other website! Yes, another trip to the Donmar. Such an amazing show. I couldn't resist one more chance to see Michael, and to meet up with more friends, some for the first time, including Barbara Uram, my fellow Alone Together webmaster.
The next morning several of us met at the British Museum - another notable step for me - walking into the museum. The only previous time I'd been there, had been in a wheelchair, unable to get into some of the galleries which contained artefacts that were part of my studies.
A year ago, I couldn't have imagined walking in, let alone walking the length of some of the galleries. With a few rests, I gave my friends a history lesson whether they wanted one or not. I'd spent a lot of time studying Greek sculpture and I wanted to show off! We did take some time out of my lecture for more important business - to look at some newly developed photos of Michael, the man who'd brought us all together.
A rest from adventures and a chance for my purse to recover before a trip to Bournemouth. My friend Margo is living in Bournemouth on a practical year out from college, so a Michael Ball concert at BIC gave me the perfect opportunity to pay her a visit. Trudy's friend Jan was able to get us front row tickets - thank you, Jan! For the first time ever, the great seat, and my energy levels allowed me to get up and dance a bit. That was in spite of the great amount of walking I'd done that day. I'd booked into a hotel which claimed to be adjacent to BIC. Hah! Adjacent? They need a dictionary.
We did some shopping in the morning, then had lunch - a lot of walking - and Bournemouth is built on hills. Not long before this, I had a really hard time walking on even the slightest gradient, but for the first time I found myself walking up and down steep roads - still with some difficulty but easier than it had been. Margo supported me as my knees gave way on the steepest paths. We'd been told that the lift up the West Chime would be able to take us back up close to the hotel, but it doesn't operate out of season, so I had to climb up the steps. I still can't believe I did that!
A few days later I was back in London to see Michael's last Christmas concert, at the Dominion Theatre. I stayed in Bedford Place, which gave me a marathon walk to and from the Dominion. That was a bit of a struggle, but I managed without repercussions. Another wonderful concert from Michael. (I have reviews of these two concerts at Balliosi's Place and About Michael.com.)
The following morning I spent in and around Trafalgar Square - the Portrait and the National Galleries, and St Martin-in-the-Fields. So lovely to be able to walk around the galleries! I could have entered the National Gallery in the flat entrance of the Sainsbury Wing, but I love the old portico entrance - I'd been denied that for too long.
I had to wait until March 2002 for my next big adventure - a journey and overnight stop in Sheffield - to see - guess who? No, Kenneth Branagh! I see this trip as another major step towards closing that circle. I've seen Ken on stage several times, the last four occasions all have associations with deterioration and progression of my illness. On 2 October 1989, I felt well for the first time since the onset of ME about six months before. I was in London for the day, on business, but had enough free time to see Ken being interviewed at the National Theatre. It was a lovely October day, and it just felt good. I felt good, and I can't say that too often.
The next time I saw Kenneth Branagh was in May 1992 - Coriolanus at the Chichester Festival Theatre. I had already been off sick from work for several weeks, and was very ill indeed, but we stayed at Chidham, near Chichester for a couple of nights, so I could rest between the journeys and attending the theatre, and I was driven door to door. It was such an exciting production, that there was no chance of me dropping off half way through, though I was sick on my return to the guesthouse - a result of forcing my body to do more than it should have done. In December of that year I went to the Barbican to see him in Hamlet. I'd retired two months earlier, but could never have imagined that I'd still be so ill when I booked the ticket. I was still determined to go. I arranged for a porter to collect me in a wheelchair off the train and take me to the taxi rank, so I wouldn't have to walk across the Paddington concourse. So the only walking I had to do was within the Barbican complex. I saw Hamlet again the following April, and another interview on stage, at Stratford. Again I was driven door to door, so the walking was minimal.
With hindsight I realise that those trips to London and Chichester probably had a severely detrimental effect on my health. At that stage I didn't know that over-exertion was the worst thing I could do. It's good to balance determined effort with sensible behaviour. I was definitely determined, but not very sensible. Trying to walk just a few paces, when you really should be sitting down is not wise. Imagine walking in chest-high water, with seaweed tangled around your knees. That's what it's like.
So Sheffield to see Richard III was very important for me. I knew that I could cope with the journey, and could once again sit in a theatre for a few hours without problems. My hotel was close enough to the Crucible to walk both ways. But I never imagined I'd be able to walk as well as I did that weekend. As the coach drew into the station, I could see the Novotel up the road, so I decided to walk instead of catching a taxi, which had been my original plan. But it was up hill. I didn't realise quite how steep until I was too far to turn back. I am very pleased to say that I experienced no myalgia whatsoever.
From the hotel, I went straight to the Crucible to meet Pat Stearman, who had organised our tickets. We are on a Kenneth Branagh mailing list, and a Q&A session was organised for our group. The director, Michael Grandage, and two other actors from the company, Jimmy Yuill and Gerard Horan, joined Ken on stage, and took questions for an hour.
Back to the hotel for my nap and a snatched bite to eat, before the play. So good to see Ken on stage again after such a long gap.
And so good to be able to walk down-hill without my knees collapsing beneath me! The walk back to the bus station the next morning was a doddle! A ten-minute walk, down-hill - down a steep hill - with a suitcase on wheels - and a walking stick which I didn't need. It was in the way. For the first time I really didn't need it. I was perfectly well balanced and I felt healthy. I was not in the slightest bit tired, despite all I'd done the day before. I couldn't find a way of attaching the stick to my case, so I had to carry it.
When the coach dropped me off a few minutes from my home, I decided to walk rather than wait for Dad to arrive to take me back. The coach was early, so I had ten minutes before he was due to meet me. So I carried my stick again, pulled the case, and walked home. It's been a long time.
I don't think I'm anywhere near ready to throw away the walking stick yet. I've been out of the house a couple of times without it, and left it in the car when I've walked into the local shop. There is still a very long way to go, but things have definitely improved.
I didn't mean to write so much. Serves me right - I shouldn't have left it so long before updating the site. I don't suppose many people will read this far down the page. If you've got this far, congratulations and thank you! I hope I haven't bored anyone. It's been a cathartic exercise composing this page - almost a diary, really - good to concentrate on the positive times.
My next updates will hopefully be shorter and more frequent - depends what I have to tell, I suppose. There's lots to look forward to over the next few months - meeting more email friends, some for the first time. Josie is coming to London from the Philippines, Rebecca coming to live and study in Oxford from her home in Connecticut, and Sue Kilner WILL be well enough to attend Michael's Fan Club birthday party in June! And I haven't talked about how this picture came to be, yet.