A Crip Trip to London - Part 2

I used to be a huge fan of the show Kids from Fame. I had the albums and the legwarmers! I used to pirouette around the house with all the grace of an elephant imaging myself winning a place at the New York School for Performing Arts. There was a line at the beginning of the song Fame spoken by dance teacher Lydia played by Debbie Allen that said something along the lines of 'this is where you start paying in sweat'. Well I got back from my trip to London two days ago and I'm paying in pretty much the same way.

I have several medications now that I have to be very careful with. I have a controlled release morphine drug, a pre-gablin 300mg, and amitriptyline. If I miss my amitriptyline I don't sleep at all. If I miss pre-gablin it only takes about 2-3 hours for the black dog to descend and everything that looked rosy when I first woke up soon looks bleak and difficult. If I start sweating the culprit is usually morphine; either I have taken it later than the 12 hour window or I have taken too much. As far as I am aware I have taken everything on time, even when in London, so it seems unlikely but I have certainly been sweating. It only takes the slightest thing to set me off when this starts happening. Usually I take the meds and then until the next dose puts me back on course I start to feel sick, and then the sweating starts. I get hot and the heat whooshes from my chest right up my face into my scalp. Then the roots of my hair prickle and start to get damp. This feels weird because I become aware of cold air around my head as my scalp sizzles. Then the hair at the nape of my neck becomes wet and then slowly drips down to my shoulders. It pisses me off because my hair starts to curl weirdly and looks all damp at the ends. My face is usually red and I have to sit down until I cool. All I can do is drink water, sit in the shade or indoors, fan myself and wait for it to pass.

The lobby of the V and A

The first sweat started at the V and A on Wednesday. We were booked in for two exhibitions: Italian Fashion in the morning and Wedding Dresses in the afternoon. In between we went for lunch at the cafe, but as we stepped through the doors the temperature was ridiculous. I couldn't understand how people were eating in the heat - inexplicably some were eating soup!! Outside seemed even worse. Sunshine everywhere and not a square foot of grass free to sit in. We decided on indoors in the coolest corner we could find and I bought a cool can of coke with my lunch just to put on the nape of my neck. It worked but all afternoon I could feel the sweating creeping up on me again unless I sat down from time to time. This was difficult because there was nowhere to sit in the whole of the downstairs section apart from a two foot long bench in front of a film of royal weddings that was constantly occupied by OAPs who were not going to give a seat to a fairly healthy looking, but sweaty, 40 year old woman. Upstairs we had better luck, but all the way through shopping I could feel my hair dripping and I was desperate to go back to the hotel and get a shower. I felt completely grubby. That night all we could do was get a cool shower, put clean PJs on and go straight to bed. I was asleep by 9pm and only woke at 11pm to take my tablets.

On Thursday we visited the National Gallery to see the Virginia Woolf exhibition which I loved. We browsed the shop and then decided to spend the rest of our day at Liberty's before returning to the station for our 6pm train. Thinking Liberty's was only a short walk from the NPG we set off working on the side of the road in shade, through Leicester Square and through some back streets over to Carnaby Street and in the back entrance of the store. This turned out to be further than we remembered, with a lot of sunshine and my feet seemed to be swelling all the time. I was so tired I was tripping on kerbs and cobblestones. I could feel the ankle strap on my shoe digging in but we kept going. At the store we headed straight for the cafe and spent some time enjoying their pink lemonade and having a cheese board. I felt a little recovered from the walk, but had the same feeling of damp hair. I didn't dare touch it because I knew from experience that only made things worse. After a little spree in the haberdashery we got a taxi back to the hotel and on to the station. Usually we book assistance for trips and report to the information desk to have our bags carried and a porter see us on to the train before anyone else. This may seem a little bit precious but people have no scruples when running for a train and having been trampled before I know my limits. This time though, for some daft reason, we hadn't bothered. We'd booked the tickets in a bit of a hurry because there was a really cheap fare on a website and we wanted to take advantage. As the booking went on there was no place to ask for assistance and I thought we could maybe ring after the fact but it didn't happen. We were on our own.

Tea at The Sanderson

Sometimes, using a bit of charm and flashing a disabled railcard can get them to tell you which platform the train will be going from so you can get there early. For some reason they were messing with the platforms and he couldn't tell us. We sat in some chairs and had forty winks and then went back. They only gave us 3 minutes notice to get to the train and not being able to run we were struggling to even catch the train, never mind get there early. We realised that if we didn't get on the train we would be left behind so we jumped on where we were, struggling with our luggage and decided to get to our reserved seats on board. After travelling through coach F the train began to move sending me onto a strange man's lap (this is better than the time I sat on a man's head - see other blogs). We were meant to be in coach B and passed an uncomfortable time dragging our cases behind us in a packed and sweaty train for several more carriages. It was so hot that the sweating began again, both the normal stuff and the new, horrible kind and my hair was wet. Then we reached coach C just as the guard announced that they were sorry but the air conditioning had broken down in C and they would be giving out free water. This meant that every other carriage was packed full and that someone would be in our seats. We finally reached them and negotiated with the people in them. I had found a few square inches of space in the luggage rack for my case and abandoned it a carriage away. Sadly Mandy's ( the bigger one) was still with us and we had to lift it into the overhead rack that took a lot of effort and muscle strength. With spaghetti arms we wedged ourselves into our seats and I fell asleep again.

Three hours later we were letting ourselves into Mandy's flat. I felt exhausted and grubby because I'd been wet through several times and had dried again. My legs and feet were throbbing and I had no strength at all in my arms. I took off my shoes and noticed one foot much bigger than the other with large red marks round my ankles and what looked like a large circular bruise on my heel. It was red and blue, with a white centre and looked extremely angry. I was very surprised to find it was a pressure area. My feet had swollen so much and pressed against my shoe. After a few days with my feet up it subsided.

Yet, I am still feeling the after effects of the trip. This week I had a fairly quiet weekend crafting with friends and then saw a client Monday morning and I was exhausted. I fell asleep for 3 hours. Then Tuesday night I slept for 13 hours and woke up at 1pm! I used to be able to offset my illness after a trip with how fab it was to be there. Although the trip was fabulous, I'm not sure it was worth feeling this poorly. I have to find a different way of taking trips like this so that the weeks afterward are not so difficult. The problem is that once you start adding carers into the mix it becomes very expensive. So far I know to always book assistance, take enough money for cabs and don't try to walk anywhere. I shouldn't go in the middle of summer so maybe restrict visits to the cooler months and really try to stay off my feet as much as possible. I will get there, because I have so many things on the bucket list to do! For now I'm having a restful week with family, full of reading and lounging and hopefully will regain a bit of energy.