Tag Archives: friends

114/365 – 36 hours in Paris

We are finally on the overnight bus back to London. This is after a two hour wait for a new bus to come when the one we were meant to be getting was deemed unfit for purpose. Apparently there was an issue with the windows – that’s why we were left sitting on the ground outdoors at Port Mailot bus park until 12.30am. Thankfully the weather was clear and it was still quite warm – we also had some good chat and shared beers with fellow frustrated passengers.

Excluding the second eventful Megabus journey in two days, I had a lovely time in Paris and felt great for relaxing in the sunshine. After the delayed start and on-off sleep during the journey, I was expecting my symptoms to increase. Thankfully my body worked with me and I felt strong throughout the 36 hour period. 

Day one

After we got freshened up in our chic hotel, we made our way through the salubrious streets of Pigalle to the Moulin Rouge and then climbed to to the Sacre Couer (below).  

After wandering in Montematre village, we headed towards the Eiffel Tower. Sarah climbed it while I found a spot in the grass to read and relax. The tiredness began to set in and I realised I was ready to go back to the hotel for a rest – plus there was a bath in our room which had my name written all over it.

After soaking in the tub for a long time, I emerged to find my travel buddy passed out. A bit of Iggy Azalea soon woke us up as we took our time getting ready for our one and only night in Paris – the half bottle of red wine I had treated myself for a whole 3 euros was getting me in the mood for more. 

We headed back towards Moulin Rouge and, as Sarah was keen to try some French cuisine, we chose Le Chat Noir which had all the must try’s – escargot, frog’s legs, duck confit and steak tartare for me.  


  
Meeting a lovely couple from Sheffield, we nearly ventured with them to Bastille but it was already midnight and we had our eye on somewhere near by…a karaoke bar. And so that’s how we passed the next three hours – singing and dancing to many classics (and some unknown French songs). We each had a solo, Sarah with Like a Prayer and me with a bit of Shania Twain. Then collectively we killed Stevie Wonder’s Superstitious but had a blast doing it. The evening was topped off with Sarah blasting out Eminem’s Lose Yourself. We were singing all the way back to the hotel.

Day 2

Lying in as late as we could to make breakfast, Sarah opted for longer in bed and I demolished fruit, yoghurt, pastries and crepes. I knew I would need lots of energy as our main plan for our second day was exploring on foot.

We started at the Jardin de Luxembourg, exploring one of the most beautiful gardens I’ve ever visited. 

  
We then walked through the Latin quarter to the Seine along to Notre Dame. After a quick queue, I took a seat with a view of the main altar and considered all those who have come to worship and admire with hope in their hearts over the several hundreds years. Again it made me think of all the things people with myasthenia can learn from religion. 

From there we walked back along the Seine to the Tuilleries, out into Plaza de Concorde and then along the Champs Élysées to the Arc de Triomphe. The sun was high and warm, so I was making sure to cover myself up completely and keep in the shade as much as possible. 

By the time we reached the Arc, it was almost time to head back to pick up our bags. There was just long enough to admire the intricate friezes of classical rulers who inspired Napoleon.   

As only to be expected for those familiar with the company, there was an issue with our Megabus on the way home – as there had been on the way. This meant we ended up having an hour and a half picnic on the Tarmac of the bus ‘station’ with some fellow passengers – Snow White from Disney land Paris, a New York musical theatre fan and an Orcadian freelance journalist heading home to cover the election. 

After a difficult night of on and off sleep, we got back to London at 9am and headed straight home to bed. It was only when we woke up after the nap that we were able to speak about the fantastic time had. Believe it or not, we even said we would consider doing the megabus again because at least we had plenty stories to tell. 

While I couldn’t do it regularly, making sure I got enough rest in the build up to Paris and taking time to relax meant the overnight journies didn’t affect my experience. Paris j’taime and I won’t leave it so long next time. 

  

16/365 – The right person

I touched on it briefly in yesterday’s post about Stephen Hawking, but one of the challenges of living with a condition like MG or motor neurone disease is the strain it puts on romantic relationships. In my experience, both partners in healthy relationships tend to be equally comfortable in their own skins and put feeling good about themselves first. If they don’t feel strong in themselves, the relationship suffers. Feeling this way with a condition like MG can be a challenge.

Any disease that changes you has the power to destroy self confidence. The eyes are believed to be the window to the soul, so when mine became affected I started to believe people wouldn’t be able to see me as anything other than ill. This initially crushed my self esteem.

When my myasthenia started to show through my eyes nearly 2 years ago now, it came on out of nowhere.

My other half and I had been watching Oz the Great and Powerful at the cinema not long after my 26th birthday, when I realised I was having to shut one eye to stop my vision from being double. My right eye had gone from normal to squint and, having never had any problems with my eyes before, I panicked. Thankfully Elaine had previously worked in an opticians and was still good friends with an eye doctor. Back at hers, she called the optician friend and he recommended I go to Moorfields Eye Hospital accident and emergency the following morning.

My eye took two weeks to go back to normal and, at that point, the doctors had no clue what had caused the temporary squint.

During that time, I shut my other half out emotionally to the point where I couldn’t look her in the eye. She was working away from home and I spent most of the time, when I wasn’t working, on my own. I was hiding myself away and waiting for the symptoms to pass. I wanted to do it on my own – thinking I would come back to her when I felt better about myself. When I felt more in control and able to be the strong person she knew and loved again.

Although we were friends for years first, my partner and I had been together for a less than nine months at this stage. That first year, often regarded as the honeymoon period, is a formative time for any relationship and I hated that I was adding such a condition into the mix.

One of the healthiest things about our relationship was how strong we were as individuals – I liked that we had our own fulfilling lives yet we sought to make space for each other. But what I hadn’t realised was that I had been shutting her out emotionally long before the MG – I thought I needed to be consistently strong and to keep a wall around any of my less attractive emotions.

With MG, I no longer felt like the confident, outgoing and independent individual she fell in love with. But instead of showing her this vulnerability, I hid it, and myself, away.

Elaine came with me for that first set of tests at Moorfields and has offered to come along with me to every scheduled appointment since then, without fail. She was there when I finally got the MG diagnosis, after 6 months of on and off symptoms, and held me as I cried in one of our favourite restaurants.

She told me never to repeat what I’d said when I suggested that she would be better off finding someone else during the days of limbo between diagnosis and treatment when my speech and swallowing also started to be affected.

Some time during this period I realised that if I didn’t let her in, I would be pushing away the best person for me. Not only that, but it would be my fault when I was alone and full of regret. I knew that if our positions were reversed I would be hurt that she didn’t feel she could be vulnerable with me – I knew I had to trust that she could still love me.

Myasthenia changes you physically and, if you let it, it has the power to change your personality too. I’ve been incredibly lucky to have a wonderful woman by my side who has supported me endlessly, loved me even on my darkest days and never allowed me to think less of myself because of my condition.

Don’t get me wrong – there are days that she’s ready to throttle me, we still have our stubborn independent moments and our ability to give each other space has saved many squabbles. But, when either of us are having a tough time, we no longer feel like we have to hide the more vulnerable parts of ourselves away and, as far as it’s healthy, we help each other when we’re not feeling at our best. In fact, the mutual knowledge that we will take care of each other has given us a much deeper connection.

I write this not because I don’t think there will be tough times in the future, but because I know that I’m with the right person to weather those trying days, weeks and months ahead.

For anyone not sure about whether to open up and trust – the worst thing that will happen is you’ll get hurt and then you’ll move on knowing that you tried. If you don’t give someone who loves you a fair chance, regret is a lot harder to get over.

Today’s photo is Elaine and I in our thermals before going to see a Premier League football game today. I’m not sure how she does it, but she manages to look glamorous in Lycra here.

10/365 – Planning for a night out

Last night was my best friend’s birthday party and the first time I’ve had alcohol in 10 days. Read on to find out how I look this fresh, if a little tired-eyed, today?

Since moving to London, I have made the trip up to Edinburgh for my pal’s birthday every January. Two years ago, I got a megabus up on the Saturday morning, went straight to my friend’s flat for drinks, stayed out all night dancing, and then killed time in the casino with the birthday girl, and her patient boyfriend, until the first megabus back in the morning. I spent a grand total of 12 hours in the city…Needless to say, times have changed.

The secret to stopping significant decline in my condition from a night out is preparation and recovery. Time is essential for this and so 12 hours really wouldn’t cut it anymore (nor would being cramped on the Megabus for 9 hours each way)

Travelling up by train on Friday night, I had a long sleep on Saturday morning to ensure my energy levels were high leading up to the big night. Getting enough sleep is a key consideration for me now and I find not getting 8 hours for a few nights in a row makes a big difference. The next day I made sure to have a long sleep and did very little to ensure I got enough rest.

Eating well is another key consideration for me and so I made sure to prepare my body with healthy food. The following day, I ate healthily again with lots of fruit and vegetables as well as loading my body with multivitamins.

Finally, I chose drinks I’d enjoy savouring – a delicious Chilean Cabernet Sauvignon and my favourite Jamaican lager, Red Stripe. The fact that I was savouring each sip stopped over indulgence.

Thanks to the preparation, and knowing there was time to recover the next day, I was able to make the most of the evening with my favourites. Getting to spend time with my best friends is a rare treat as we live nearly 400 miles apart. My aim whenever I see them is to make it memorable and try to be fully present in the moment.

By the end of the night, I could feel the MG tingles in my mouth and my eye ptosis got more pronounced. However, I was able to put this to the back of my mind due to being busy dancing, singing, hugging, chatting, snapping pics and laughing with my favourite girls. I hope we’ll be the last ones to leave our favourite haunt, singing and giggling our way out of the door, for years to come.

Here the birthday girl and I are mid dance:

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2/365 – Friends old and new

Today I met the baby daughter and partner of a friend of mine for the first time. While it sounds exciting, this kind of situation creates certain challenges for someone with MG.

Firstly, when being introduced to someone you become more aware of your appearance. Add to that mix the symptoms of MG and an uncomfortable self consciousness kicks in.

Secondly, children can often be intimidated at first when my eye symptoms are flaring up. There have been times I have looked at kids and they’ve either been frightened or started crying (and once a rather deranged man on a bus told me I was cursed but that’s another story). They don’t have the social awareness that most adults do and, no matter how much you laugh it off, it can still hurt when your face makes a little person react this way.

Thankfully both Baby Lyla and Cecille were warm, friendly and appeared unfazed by my continuing right eye tosis.

Here I am pictured with Baby Lyla, my good friend Steph and proud nana Lizzie.

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