Wobbly and working away

Wobbly and working away

When you are diagnosed with MS you suddenly see yourself in two ways ‘ pre-MS diagnosis’ and ‘post MS diagnosis’. Pre my MS diagnosis I worked in Visual Merchandising, climbing up ladders, painting window displays, dressing mannequins – not very disabled friendly work! I used to work away a lot and do a lot of overtime. One Christmas it all got too much and I worked around 14 days in a row with only Christmas day off, I’d had enough and decided to look for another job!

I have worked in my current job for around 3 years pre-diagnosis and a year and a half post-diagnosis. Luckily after my diagnosis, a position came up which meant I could work from home half of the week and my life with MS become 10 times easier! There have been a few positions and promotions I haven’t bothered to apply for post-diagnosis because everything in my life was already just a bit too much!

But then a role came up on our internal system which I thought I’d be good at – it was just additional to my full-time role and just enough for me to feel passionate and make a difference within the company! So I applied and I got it!

A very last minute trip – nearly

I knew that my new role would require the odd quarterly meeting, but what I did not expect with the pandemic was for this to be in person! I had just had two weeks off work after my tonsillectomy (see previous blog) and logged on to multiple emails asking me if I needed a hotel for the meeting next week….hotel?? next WEEK?? I’m sorry? What’s going on!

After catching up, I realised the first meeting for my new role is not only in person, it’s overnight, it’s in London and it’s in less than a week!!

I have a short panic and I think long and hard about all the things that could possibly go wrong but I know I can do this, so I accept all the calendar invites and confirm my hotel reservation and book my train! My MS has been pretty bad the last few months, I’ve had a relapse and then I’ve had my tonsils removed so I’ve really missed out on so much – why should I miss this opportunity too?

I send over my accessibility needs, something I have never had to think about before really. I need a low floor or lift access as I can’t climb many stairs alone, a seat on the train as I struggle to stand for long periods of time and a fridge in my room for my Copaxone injections.

I google the hotel a million times, I google the 10-minute tube journey I will have to take a million times and reassure myself a million times that I will be okay!

When will the stairs end?

I log off my computer 2 hours before my train, as it’s prebooked by work I do not want to miss it! Of course, I arrive at the train station an hour early. Seeing as I’ve had optic neuritis I struggle to see, especially with bright lights and a lot of things going on around me so it takes me a few minutes to clock the train and the platform I need. I have gotten into the wrong ubers and booked trains in the wrong direction before because of my eyesight…

I arrive in London but then I think oh my god…there is one thing I forgot about London and the tube – THE STAIRS!

First I tackle the stairs down to the tube from Kings Cross, it’s very busy and I have a suitcase. I hold onto the handrail even though I cringe about the germs. I just remember to take my time but it’s hard with all the people around me!

I finally get on my first tube then tackle the stairs and long corridors to get on my next one – I’m really multitasking here. Carrying the bag, walking, looking for signs to the right platform. It is a STRUGGLE.

Finally, I get to my final destination, but at this station, they are doing building work so it’s an extra lot of corridors and an extra lot of stairs. I’m hot and blurry and 100% regret wearing this very fluffy scarf but I’ve made it!

Checking in

I arrive at the hotel and meet some work colleagues but why is it so dark? Literally the hotel lobby is basically in the pitch black to me and I don’t even see my colleagues until they shout me. Great start and great first impression!

I get my room key and head up, I’m relieved that I’m on the first floor. I did check on the website that there would be a fridge in the room for my injections – I find the tiny fridge and unpack everything! It’s already been such a long day but we have to head out for welcome drinks and dinner. I take an extra few gabapentin’s to hold me through and keep my nerve pain away.

After dinner and drinks, I head back to the also very dark hotel room – no matter how many lights I turn on I can still see very little. I fall asleep very quickly and I’m rudely awoken by my alarm to go down for breakfast.

I make it through the long day of meetings and training and head home late but wow I am very tired!

Life after MS diagnosis and work

One of the hardest things about having MS is how unpredictable it is. Some days you will feel fine and a little like your old self pre-diagnosis and some days you feel so awful and so far away from the ‘old you’. I have a habit of taking the ‘feeling fine’ feeling too far, doing too much and then feeling really awful the week after.

I have definitely lost some of my confidence since my diagnosis especially at work due to having sick days, asking for time off for lots of appointments and asking for special requirements. But if you have MS you have just as much of a right to progress at work and to have the adjustments in place which allow you to continue working.

If anything we should be twice as proud of ourselves because when you have MS everything becomes twice as hard. Your legs are heavier, you have to concentrate harder, you’re twice as tired, even putting my shoes on some mornings leaves me in absolute agony – but we continue to fight through and we should be very proud of that!

Safe to say I’m looking forward to my next big work meeting next month, but I’m very relieved it will not be in London and I will not be getting on the tube…but even if I was, I know I can do it now!