For the last two years I seem to have been lying low, coping with everything MS had to throw at me.
I didn’t realise just how much the parameters of my life had altered until I went to London on Monday.
I wasn’t particularly worried beforehand – I’d lived and studied there for a couple of years, I loved the buzz, the people, the sheer energy the city pulsed with. So I trotted off, took my seat on the train and prepared to reignite my passion for the city.
The first inkling things weren’t quite the same as before happened seconds after disembarking at Paddington. Where had all these people come from? Oi, why did you just barge in to me? Where did I put my ticket? Help.
I was swept along by an unforgiving tide of people to the tube station, buffeted from all sides, whimpering, with panic levels going through the roof. What was wrong with me? I used to do the exact same journey with a howling baby, pram and suitcase in tow.
My legs had turned to jelly, my face was bright red with stress and heat as I tried to quell the rising anxiety. I collapsed on to a seat in the tube train, a chattering bunch of Italians clutching maps and water bottles swaying into me every couple of seconds.
After my meeting (which was brilliant), I did the reverse journey in the same disheveled state. I needed to get home. By teleportation if possible. Or helicopter. Over lunch before getting back on the Cardiff train, I discussed this with my friend. ‘I don’t understand!’ I wailed, picking at my fish and chips in a ye olde English pub. Had I really changed that much? Out of my five-mile radius comfort zone, it appeared I had. Gone was my fearlessness and energy. I knew my energy levels weren’t the same as before, but had they really plummeted so low?
Finally, I made it home. I was a mess. Every nerve was trembling, I was exhausted and mentally shattered. It took me a whole day off work to recover, where I hid at home, coming to terms with what had happened. Reality smacking me right in the face.
I’m shocked. I knew things were bad, just not that bad.
Welcome to the real world!!! welcome to the rat race in the capital, there are no medals for them just the rush and perhaps clasping a coffee they must get to where they’re going. Them imagine what is like sitting in a wheelchair surrounded by all those people, fighting to get where they’re going. Do they care, do they say sorry, answer is no. You are small and an inconvenience to them. You just might be fortunate and meet one person who will ask are you ok do you need help. Time for coffee said Zebedee as you climb off the roundabout.
Hope you have recovered from your experience, you deserve a double xx
Very true! Didn’t realise how comfortable I had been by not straying too far from home. Very sobering.
Would not like to take a wheelchair through London. In fact I don’t think I saw one that day.
A whole day I’m impressed, with that adventure I would take 3 to4 days to recover.i find planning my days out also include the days after. Two events together is a no no for me, all sent to try us, my life now is like one of those world war 2 movies where every event takes months of planning. I of course play the rugged hero who end up with an heroic limp 🙂
Meanie boss wouldn’t let me take any longer off, but honestly, have not really recovered since Monday. It’s been really quite depressing.
And to think I’m taking the Teenager to Manhattan for five days next year, meh.
Planning is key to going anywhere with MS. Takes a lot to get used to!
What you experienced with the panic – I experience that when I’m in the supermarket and can’t find what I’m looking for because the supermarket is so big and I am so small and help! totally different but just saying I understand the feeling. A bit of the panic is all in your head so in addition to planning, you have to tell be more calm about it all, you know? I can also relate because I don’t work in the city anymore and don’t think I could. Too stressful and too quick.
BUT YOU’RE COMING TO NYC!!! You’ll have to get through customs (stressful) and then the actual city. There are a lot of people here and they all have somewhere to be 5 minutes ago but that depends on the neighborhood. Either way, maybe go back to London when you have the time to recuperate to just practice for your trip. I don’t know if that’s a good suggestion but give it a whirl.
Don’t be down about it. Major cities are stressful for a lot of people and that’s okay. 🙂
Yup, it’s exactly like being in a big supermarket, with everyone pushing and shoving. I never thought about that before, but that’s why I now get home delivery as it was too stressful. I mean, I can stand for ages in front of the pasta and just have a complete blank about which one to choose, lol. MS brain.
We’re back to London in October (with the car this time) so will dip my toe back in again 🙂
Funnily enough, I have ordered a wheelchair for going through customs as I don’t think I could stand up for too long, plus we’ve ordered a town car already!
you’re quite right, planning is essential with MS.
last time i went to London i had a similar experience and thought how completely inaccesible it was – but as far as New York is concerned, that was the only city I’ve been in where people have noticed my walking stick and have given allowances (moving their kids out of the way for example) – when we went, cabs were dirt cheap too so we just used them!
Yup, was surprising how absolutely no one gave allowance for walking stick. Mind you, I remember the same thing happening when I had a pushchair.
Next time I go anywhere, I’ll plan things a whole lot better!
Very much looking forward to New York and have roped a friend in to coming with us.
My sympathies. It does hit hard, those little reminders, don’t they? In another life, I used to spend weeks at a time in London. Those were the most exhilarating times of my life. I used to travel on the Underground from one end of the city to another, and walk… and walk…for miles. And it was energizing. My last time over was 12 years ago, at the beginning of when my health went spiraling out of control. At the time, I was in terrible pain, but hadn’t yet completely lost my stamina. I remember fumbling with my painful, clumsy hands for change at a market, and the look of irritated hatred on the look of the person behind me in the queue. Things weren’t the same anymore.
Nowadays, back home in rural California, I can barely leave the house. One trip to the store and back using my blue parking placard is exhausting. I look at the photos I took when I once walked all over London, and it’s like looking at someone’s else’s life. It’s like a dream to ever imagine I was ever that person. The last time I had to go to San Francisco (another walking-centered kind of place, especially in the area I was staying in), an irritated clerk at the hotel informed me, when I asked where I could get some coffee, that the hotel cafe had just closed. But there was a place really close. “An easy walk just a few blocks away.” I looked down at the direction she was pointing. It might as well have been three cities away. I burst into tears.
I hope you’ve recovered. I’ll bet a day off didn’t feel like nearly enough after all that!
Stamina – that’s the word!! I don’t seem to have any.
Sorry to hear you’ve had such unhelpful experiences. Think this time was just a huge wake up call for me. Like you, I used to walk all over London quite easily, up until a few years ago.
I actually thought I was doing pretty well after my treatment, but perhaps I was fooling myself a little. The exhaustion doesn’t help though.
My son’s away (in London!) for the weekend, so hopefully by the time he’s back on sunday, I’ll be back to normal :-). What’s normal any more???
It’s times like that when reality really hits. Pat on the back though. You did it! New York how exciting. It’s years since I was last there and my daughter is desperate to go. Think I’ll wait till I get my Travelscoot though. Trying to find out if our health coverage in Belgium will maybe contribute a bit to the cost. If not I’ll just start selling stuff on ebay again.
It was exciting when we booked it, lol. After the whole London thing, I’m now eternally grateful my friend’s coming along.
I actually lived in Manhattan for a while years and years ago, so at least I kind of know what to expect and it shouldn’t be too hot at Easter! But fingers crossed it should be good.
If I’m still blogging by then (hopefully!), it’ll make for some fab blog posts…
It’s usually not too hot in April. It’s usually 50 – 60* Fahrenheit and maybe rain depending on how much of a break nature wants to give us.
That sounds just about right! Kind of what we have here at the moment, not too cold, not too hot.
As long as it doesn’t snow!
This is a great reminder to enjoy what we CAN do, now. I think I took for granted my recent trip to Positano, where walking is pretty much the only way to get around.
So sorry you had a stressful trip, but very glad your friend was with you!
I was pretty lucky as initially I thought I’d do it on my own, no problem. Then I thought, oh, it’d be nice to have some company.
Well, I think I would probably be a collapsed little heap by the Thames if I’d gone on my own….
I do the same journey as you as I live just outside London and my mum lives outside of Cardiff. I visit her approx every 6 weeks and the bit I hate is the London Underground. I make sure I never travel during rush hour and always get in the last carriage of the tube train as it’s always the emptiest. Once I’m on that train to Cardiff though, I just sleep!
This morning I went into London with a friend by car, came home and went straight to sleep. Also going out tonight and I’m sitting here panicking that I won’t have the energy to be entertaining…. 2 outings in one day is almost unheard of these days!
You did well though. You came out of your comfort zone and you made it. Next time will be easier as you’ll know what to expect and remember that no-one in London takes a blind bit of notice of you. You could be naked and they would ignore you. For some reason that makes it easier for me. I just carry on in my bubble x
Funny you should say that!! When I lived in London, there was a guy who walked past starkers outside the petrol station I was walking past. Very odd.
And you’re right about being in a bubble. It does help. I just panicked. Badly.
Having read your post and the comments I thought I should tell you that I feel exactly the same about trips to big cities and I don’t have MS. I believe it’s called getting old(er) there’s nothing wrong with that. My company is exhibiting in central London next month and I am dreading it.
Many years ago I used to dream of living in London with all it’s hustle and bustle but feel just the opposite now. We went for New Year three years ago with some friends and came back exhausted. OK that did include some late nights but you see what I’m saying, it’s just natures way of telling us to relax, take it easy and live more gently.
Oh dear – maybe it’s all to do with age then!! I don’t think my symptoms flaring up helped though, lol.
I’m all for taking it easy and living more gently and in a strange kind of way, MS has made me do that. I was a very happy bunny when I arrived back in Cardiff. Still a big city, but a gentle one.
A friend recently invited me to a VIP shopping night at our local shopping centre, loads of discounts, competitions, food, drink, and CROWDS! She thought it was right up my street – it used to be but the thought of weaving in and out of all those people while trying not to barge into the displays at the same time as looking for bargains and holding a conversation with my friend is all a bit too much – too many messages for my brain to compute all at once!
Physically I’m still fit and active but once all my senses are “multi-tasking” I feel totally drunk/spaced out. I’m ok if I shop during quiet times of the day, especially if its a shop I’m familiar with but busy unfamiliar places scare me a bit.
Hope you’ve recovered ok, maybe next time it won’t be quite so bad. Try not to keep up with all the hustle and bustle, go at your own pace and stop for a few coffees along the way maybe.
That’s exactly like me! We have a fantastic food fair down the Bay here – but the last time I went, the crowds just made me totally spaced out with stress and heat. Never really connected it to something like a trip to London!
Amazing how many things you need to approach differently. And plan differently. I rarely go anywhere spontaneously any more. Meh. And I plan lots of stop off points!
I went to Lakeside shopping centre yesterday which is pretty big, I don’t usually go on a Saturday and it was heaving!
I was on my scooter looking up at the crowds who somehow seemed oblivious to the fact that I was right there. I rolled along at minimum speed but had several near misses with those who were obviously far superior than me and felt that it was their right to suddenly change course and cross my path with no notice and that it was my duty to avoid running them over, even though it would have been their fault!
I can no longer go to craft fairs because it is too difficult to negotiate through a crowd, and that makes me sad, I used to go often.
I do find people generally helpful and polite away from crowds, but I think they have a sense of ‘not my responsibility’ towards me in busy places because if no one else is bothering why should they?
Have you looked at travel insurance yet, I wonder if/how ms affects that?
I know what you mean, even though I don’t use a wheelchair. Craft fairs are a nightmare. I get all stressed, lol. I avoid things like that now, plus if I need to go to town, I go in the early morning or early evening as a lot of shops here are now open til 8pm.
I also used to walk for hours through London, but that’s not a distant memory. Meh. So much has changed!
I haven’t looked at travel insurance yet – too scared. Someone said I could declare MS but choose not to be covered for it, but as I’m going to America, I think it’s best to be fully prepared?