It’s that time of year again. Christmas is over, and we are starting to think about the year ahead. New Year’s resolutions (if you ever make them), are quickly discarded to be replaced by daydreams of holidays and days out with warmer weather. If you are lucky enough to be able to afford a holiday this year, you might start to look at possible places to visit or stay. Covid, without doubt, will factor into this plan. For me, however, my MS will be the major consideration.
In the past (pre-covid, pre-MS, pre-medical retirement … another lifetime ago!), we would pack our suitcases and all head off to a Greek Island, France, Italy, the Canaries, even the odd trip to America. But with my mobility issues now, we quickly found air travel to be challenging to say the least. Factor in the fatigue and suddenly any type of travel proved to be tough; both mentally and physically.
But I was determined that, as holidays were an important part of the ‘old me’, this was something I wasn’t willing to forego due to MS. Plus, I felt it would be yet another thing my family would have to sacrifice. I started to look at holidays, and heat, differently.
A holiday now isn’t my old ‘fly and fry’ trip to the 40-degree Greek holidays resort (sorry Greece – I love you, but July is too hot!) For a start, anything over about 23-degrees heat makes my legs stiff and I am unable to walk even the shortest distance. I can’t function in high heat. I get brain fog. I feel sick and tired. My left-hand side goes numb, and my feet BURN! This burning lasts well into the night and keeps me awake. Many UK summer’s days have been spent lying in bed with the fan full on, me staring out the window at the sun and dozing. Yes, I did say in the UK. Even the heat here knocks me out.
Two things occurred to me about this:
How could I have a vitamin D deficiency when I spent most of my adult life lying in the sun at every opportunity? I often used to joke, “I’ll look 80 by the time I’m 50, thanks to the ageing effects of the sun!”
How frustrating it is to spend hot, balmy summer days lying in bed looking out of the window, thinking about all the things I would be doing, but couldn’t, thanks to MS.
In the early days of my diagnosis, I remember inviting our ‘almost-grown-up-children’ over for a BBQ on Father’s Day (mid-June). But I had a bad MS day (they come out of no-where) and was lying in bed listening to the family laughing and chattering, the smell of the BBQ drifting in through the open window. It made me angry, resentful, and tearful. I felt MS had taken family days and sunny days away from me.
So, I had to re-think my approach to these things and adjust my mindset. Firstly, I now accept mid-summer in the UK is as hard for me as mid-winter. I can see a pattern in the extremes of weather and the impact on my MS. I function better in temperate weather, spring and autumn are my new favourite seasons. I now know and accept this. So, if I am in bed during the hot days of summer, that’s fine! It’s normal. Let’s face it, the heat in the UK comes and goes, so the occasional day spent in bed due to the heat is okay. It won’t last forever. I no longer mourn for the things I could have been doing, but instead do other things like doze, read, write, or listen to audiobooks. Sometimes I draw. All things that are low energy but productive.
Plus, as a family, we have discovered a wonderful place to holiday now … it is called the UK! I didn’t realise how much we had missed here in the UK by jumping on a plane at least twice a year. This country has so much to offer, and each area is rich in history, beautiful landscapes, galleries, museums, entertainment, and (of course) shops. The bonus is I get to choose where we go, when we go and how we get there! Because my MS is still very unreliable in terms of my fatigue, we can change our plans at the last minute, and often do.
A few years ago, I invested in an electric scooter to help with longer days and trips to places that require a lot of walking. Once I’d got over the embarrassment of scooting around, running over small children and bumping into dogs, I found myself enabled, rather than disabled. We now take the mobility scooter with us everywhere, and it is clocking up miles throughout the world as well as the UK. To date, we have visited Kent, Cornwall, Devon, Dorset, Surrey, Hampshire, Somerset, Wiltshire, Derbyshire, Wales, Yorkshire, plus, pre-covid, New York, Cape Verde, Germany, Poland, Iceland, Spain, and Italy. With a bit of research, we find wheelchair-friendly venues, factor in rest-days and short, low-energy activities. Two hours in the morning is about my limit. I now accept I might need to change my plans if, and when, the MS fatigue kicks in.
I no longer feel angry and resentful as I once did on that Father’s Day a few years ago. It took a while for me to adjust, but I now understand and accept that life is different from what it once was, pre-MS. I avoid extremes of heat, use mobility aids, travel to places that are accessible, and factor fatigue into my plans.
I’m looking forward to spring, summer, and autumn this year, and have already started planning and researching new places to visit, covid allowing. I’ve discovered that, even with MS, holidays and days out are still a big part of life I relish and haven’t had to give up. I hope you can do the same… Enjoy!
Hi, I’m Tracy. I was diagnosed with RRMS in February 2016 following an incident of optic neuritis in August 2015. However, I think my first CIS occurred in 2014. I’m married with 3 adult children. Since medically retiring I enjoy hobbies including studying, reading, crafting, gardening, and baking.