Rome wasn’t built in a day

Pacing is still probably the hardest thing I face on a daily basis, even now. I’m sure I must have many talents, but patience is definitely not one of them. By October 2007 I was finally managing between six and seven hours a day at work. Although it had taken me almost 12 months to get there I could see that I had made huge progress, albeit it heavily focussed to this point on regaining my working rather than social life.

I had also accrued quite a lot of annual leave. Being one of those people who feel motivated to spend every day off ‘doing something useful’, I wanted to get away and achieve something with my holiday. I also really wanted to go somewhere rather sunnier and warmer than the UK (which isn’t difficult).

So my boyfriend and I took the plunge and decided to book a holiday abroad. I’d already had to turn down a skiing holiday earlier that year with a friend living in Switzerland. Not that I would have been any good, having never skied in my life and also at the time I was finding the simple act of standing for any length of time rather trying, but I like to think it would have been fun. Spending the day on the spectacular slopes, basking in glorious sunshine. Then apres ski, snuggling in a warm cabin with great food and wine.

The reality would of course have been more like this; me mostly sat on the floor nursing bruises on my arse whilst kids of five whizz down the slopes shaking their heads at the old lady who couldn’t find her balance. And that is before you factor in the ME. I suppose the added dizziness would have given me the perfect excuse to spend most of the day falling over. But then the fact that back in February I was only able to be upright for around 3-4 hours a day at most probably meant the trip wasn’t going to happen.

On checking out the best places for October sun we decided on Rome, a destination we’ve always wanted to go to and somewhere that would be warm, with good food and some culture to hold our interest. I in particular am extremely bad at not doing anything on holiday. In fact, spending all day by the pool is my worst nightmare, as evidenced by the one time I’ve tried a holiday like that. I think I resembled someone with ADD, unable to sit still and always getting up for a snack, or to get a drink, or to go for a short walk, or well, anything that wasn’t just sitting relaxing. I was so bad at it, it almost became kind of funny.

Of course, Rome is a vast place full of things to see and also a lot of walking. When your body is still reminiscent of a frail old lady, it may not be the easiest thing to do. Naturally I never do things the easy way and decided to see these things as a challenge rather than problem, so I told myself it might be good as part of my recovery.

Most people tend to spend only a few days in Rome, cramming in the sights and then returning home or heading off to another destination for some relaxation away from the hustle and bustle. But given my rather limited mobility and need for a good break, we decided to make it 10 days in Rome, building in an allowance for my rather useless body.

We rented an apartment not only as it was more cost-effective, but also because it would give us more freedom for days when I had less energy as we could cook for ourselves instead of walking around searching for an affordable restaurant. We chose a place that was around five minutes walk from the Pantheon; a relatively central area with good restaurants nearby, but not too noisy.

The flight there and connection from the airport pretty much took it out of me on the first day. We arrived late afternoon, so by the time we’d got the keys to the apartment there was time for some rest before going out for dinner. To the closest place we could find.

The next day I was left to rest and sleep in. We’d prepared well for the holiday, so my boyfriend had brought his Nintendo DS and a new Zelda game to keep him entertained during the times that I needed to rest. We ventured out at lunchtime and then walked to the Pantheon to look around. The piazza around it was filled with tourist cafes, pricy but convenient for a well-earned rest. Although it was only a short walk from our apartment I was cream-crackered for the rest of the day, so strategic use of cafes allowed me to regain a bit of energy for the walk back.

Over the next couple of days I was able to venture a bit further afield before the overwhelming tiredness came back. We made it to the Trevi Fountain and Spanish Steps; two more sights to tick off the list. Of course, as most who suffer from ME know, a day or two after you increase your activity, the payback kicks in. And as usual it did, so we then had a day in the apartment. My boyfriend bought groceries from a local shop so we, well ok, he, could cook for us without having to go out in search of dinner.

Rested and ready to embark on new adventures again, over the next few days we visited some more of the obvious major sights, taking one each day. We had planned it out so at the start of the holiday we were visiting the nearby attractions and ones that required the least walking or energy expenditure. Slowly but surely, I began to regain confidence and my body grew stronger. The twice daily trips to the local gelaterias were of course an essential part of this recovery.

Towards the end of the trip, we planned to visit the Vatican museum. Well known for its extraordinary wealth of artefacts, treasures and the Sistine Chapel, I had wanted to be as strong as possible to get the most out of it. We arrived just before opening in the morning, and incredibly spent the whole day there, walking around the exhibitions until just before closing. In my wildest dreams I had not thought that I would have been able to do that so soon, not even as the holiday progressed. The strength I had gained was quite astounding.

I’d like to be able to say that when I returned home I was significantly better, but reality can often be rather crueller than that. Back home I returned to work, and once again my daily energy reserve was being split between physical and mental tasks. But then as Rome wasn’t built in a day, or even ten days, then it was ok that I had returned back to pacing and once again focussed on recovery.

Red pill or blue pill?

This was going to be my last post for 2012, but my health kinda got in the way. Nevertheless here it is, if not a little later than intended…

A few years ago I went on a personal development course called Springboard, something that I was lucky to have the opportunity to attend through my employer. My manager asked if I wanted to go as there were a few places to be filled, and it sounded like it could be interesting so I quickly said ‘yeah, sure’. Although after agreeing I did start to wonder why I was put forward for it. Did my manager think I was as misguided as Dexter Morgan and needed help personally, or was it because they felt I was actually a budding Steve Jobs and this would help unleash my potential?  Then I decided I was over-thinking everything and should just get on with it, as either way it was a nice opportunity.

It was actually quite a gift to be able to spend three days thinking about myself and what I wanted out of life, as well as great to meet a whole bunch of other women from all types of backgrounds and aspirations. One of the things that became abundantly clear to me was that whilst I never feel like I achieve much, this is blatantly untrue. Through group exercises of talking about what we had done and enjoyed, I realised (helped by some blunt words from others on the course!) that I’m always striving to do things, achieving them, and then moving on to thinking about the next thing instead of reflecting on what I had been doing.

Perhaps this is a common trait in ME sufferers, similar to wanting to be busy and not slowing down. But it is a difficult one when you can’t live the way you would like to. Accepting that each step in itself is an achievement has been an important part of my recovery. After all, just because all of my old flat mates used to be busy every night of the week doesn’t mean that I have to be, or that in fact that it is ‘normal’ to live life at that pace.

So here is my reflection on 2012. You might need to brace yourself before reading; it’s been one of the most crazy-filled years I’ve ever had, that’s true. And even three years ago I couldn’t have imagined being able to do anything like this. Perhaps I can’t, hence my current state of health, but maybe, just maybe, I could do it again. When I was struggling early on to even make food and look after myself, I hoped I would be able to go back to living my life as I wanted again. Okay so that hasn’t fully happened, but I’ve been very lucky and have recovered sufficiently to live a mostly normal life again.

I guess my constant challenge now is to take time to slow down occasionally, to allow my body to catch up with me in between and above all listen to it when it’s telling me to stop.

*Deep breath* so here goes:

January-February
Went to a friend’s winter wedding and hibernated. Let’s face it, the time after Christmas tends to suck. It’s still dark all the time, cold and/or damp and there are no longer twinkling fairy lights to brighten the place up. Although when the snow hit in February I could be spotted playing gleefully outside donned in a rather fetching polar bear hat. That is until the snow melted. And no amount of going out with friends to support our local ice hockey team in their league matches could bring back the childlike excitement I get when it snows.

March-April
Redeemed the previous year’s anniversary present to my husband (paper!) and visited Anfield for a VIP tour experience and lunch, meeting with legends Phil Neal and John Aldridge. It had seemed like a great idea at the time and then I realised I would have to spend a whole day marvelling at football memorabilia. Dope. I’m not much of a footie fan myself, but it was actually really interesting and by the end I was really quite inspired! Who knew how much of an inspiration the boot room was, and how central it was to the club’s success?

May-June
Spent three weeks in Japan; a week’s conference for work with two weeks holiday tagged onto the start of it. My husband flew out with me for the first two weeks, using airmiles for his flights. I only got the go-ahead for the trip a few weeks beforehand, so the four weeks before we went were crammed full of researching, emailing and booking various parts of the trip, on top of the usual work activities. Planning was key since we knew when we got there we wouldn’t understand anything! We travelled around Tokyo, Kyoto and Hiroshima, with day trips to Nara, Hikone and Hakone. Highlights included visiting a stable to watch sumo wrestlers train, attending a cooking class and staying in a traditional ryoken. And of course eating by pointing to things or ordering ‘beef’ from the japanese-only menu as it was the only English word the waiter knew. Mostly it worked fine, except for the seemingly deep-fried fish brain and bone marrow; it was definitely not ‘shrimp’ at any rate.

Then it was back home for three weeks to fit in as much routine life and catching up as possible, with an insane amount of work on top.

July-August
On a cold and slightly drizzly day at the start of July it was a trip to Wimbledon for the fourth round matches. Then not long afterwards it was another work conference in Vancouver for a week and once back home attending a sushi making course. That was the first taste since Japan, as I’d been sushied out for a while!

After that it was Olympics galore! After spending more hours that I would like to admit and definitely more hours than I would like to know about on the London 2012 ticketing website, I had managed to finally get some tickets.

I had been really excited about the Olympics coming to London for some time, until I missed out on anything in the ballot. We had added a single first-round football ticket to our application for my husband, which as fate would have it was the only thing we received. To South Korea vs Gabon of course, which never sold out. To our dismay we later found out that the ticketing rules were being made up as time went along, and this now excluded us from all other rounds of sales. So I channelled my grumpiness into the ticketing website in desperation for resales.

Hour and hours (and hours and hours) of F5 pressing later, we were lucky enough to go to some badminton, volleyball, track cycling and athletics. The early starts, late nights, and vastness of the Olympic venues were enough to zap my energy, never mind the emotional atmosphere. And then there was cramming work in with as much catching up of the action on TV as possible, with an overall result of not sleeping much for two weeks and wandering around like a cheery crazy person on drugs. (In case it wasn’t clear, I love the Olympics, and always have done. It’s always so exciting to immerse yourself in a range of sports with rules you can’t follow, and occasionally have the person you are rooting for win a medal).

Not long after the games finished, it was up to Yorkshire for my Dad’s 70th birthday and the surprise party my family had been planning. And the inevitable lurgy my husband and I picked up from my niece and nephew which meant the following weekend, our anniversary and only time to really relax all year, was spent feeling terrible.

September-October
After traveling to Vienna and back in a day for a work meeting, September whizzed by and before I knew it I was in a musical month with live gigs for Radiohead and Bryan Adams. Then a morning indoor sky diving in Milton Keynes. That took a few days to recover from, I can tell you! Awesome fun though.

November-December
The final part of the year kicked off with a work trip to Washington DC, with the rest of the month focussed on trying to adapt to the new lack of daylight. As a result I missed a friend’s 30th birthday party and my work Christmas party, but I did make the work Christmas lunch and my husband’s work do. The rest of December was then spent in bed with a virus/flare up/relapse. Ho hum.

 

Now it’s not surprising that our savings have taken a harsh battering this year, but it was worth it for the once-in-a-lifetime opportunities. What is often surprising to others who don’t understand or know I have ME, is the toil things like this take on me. Reading the above you might get the impression that I’m fine, and not suffering from a neurological illness. Sometimes I tell myself that too. But what isn’t revealed is the fact that I spend almost every evening collapsed on the sofa in front of the TV in a stupor of tiredness, just to allow myself to do these things and to continue working. As the specialist at the ME/CFS clinic said to me a few years ago, it’s a lifestyle choice. And I choose to live and experience as much as I can; I guess whether that’s red pill or blue pill living really depends on what question you’re asking.