Taking Chronic Illness on Holiday

So, I have just returned from my summer holiday – which I was really looking forward to (10 days off work, yippee!), but also viewing with trepidation and worry about how I was going to manage as a person with a chronic illness (see this post).

We decided to take the kids ‘glamping’ this year.  They have been asking a lot about camping over the last year or so, but we don’t have all the paraphernalia needed for full on camping.  To be honest, I also like my every day luxuries (necessities to me!) too much to consider full-on roughing it as a holiday.  Add into the mix my difficulties with mobility and fatigue and I didn’t relish the idea of living, sleeping and ducking in and out of a little tent for several days.

Unbeknownst to me, Aidan had requested an accessible tent – which basically meant that we were situated close to the main leisure area and there was a ramp into the tent (this is where adaptations ended).  The leisure area had a communal campfire, simple play area for the kids and lovely ‘tea tent’, where we could sit and chill whilst enjoying a brew.  It was accessed via a bumpy track, which I managed to negotiate using my crutches, though I did rely on my wheelchair for days out.

So, how did I fare?  The kids absolutely loved glamping.  They made loads of friends and, for the first time, I was actually able to sit and read books without being interrupted every few minutes.  I know, the shock!  They got absolutely filthy and explored to their hearts’ content while we were able to sit back and have a glass or two of vino, so from that point of view it was very relaxing.

Me?  Well, Alex and Ava were very influenced by the other kids’ daily plans (Flamingo Land!  York Maze!) and were desperate for a couple of days out.  I don’t blame them; one of my favourite things to do when I was younger was going to amusement parks and attractions.  Before my MS symptoms increased and became a daily battle, a day spent out and about with the family was a sure-fire enjoyable way to spend time together.

Oh how I wish I appreciated those days when I had them.  The thing with chronic illness (at least in my case), is that the things you used to take for granted at being able to do are now tinged with a little bit of sadness.  Wistfulness, I guess.  Yes, you can still go on family days out and yes, you will still have a great time.  But will it be as good a time as before?  Maybe for some.  But for me the combination of not being able to fully join in due to inaccessible attractions and the knowledge that I would be faced with overwhelming tiredness by the end of the day (that would most likely spread into the following days) meant that I spent the days out feeling anxious about the symptoms to come and jealous of all the other women my age being active with their families.

Although holidays are a welcome break from work and precious time to spend with family, I  often still miss out.  Den building with the kids was a struggle due to the forest floor, going through the ‘the best thing ever’ at York Maze (a house of illusions) was impossible due to lack of wheelchair access  and exploring the woods with my family was a no go due to uneven terrain.

I miss out.  But you know what?  Alex told me on the last day of the holiday that it had been ‘the best holiday I have ever had’.  Yes, we could have gone somewhere a bit more accessible for me (5* all inclusive resort, perhaps?) but the last thing that I want to happen is for my children and husband to miss out on things that they want to do, just because of my MS.  Maybe the answer is that I need to just be a bit more prepared and do my research around accessible holidays.  And maybe I just need acknowledge that it is normal for a person with a chronic illness to feel envy over the people’s lives; that things are going to be harder than they used to be but that, hopefully, as time moves on, things will get easier to deal with, they will become ‘the norm’.

Holidays can still be relaxing and enjoyable, I just need to anticipate any accessibility difficulties, prepare for them in advance and ensure that time is set aside for naps.  Maybe that 5* all inclusive resort somewhere not too hot actually is the answer?  I really must start playing the lottery.