Sun, sea, sand and symptoms

I’ve been lucky enough to go on two amazing holidays in recent months, thanks to weddings in my family being like buses: none for ages and then two come along at once.

I got married at the end of March. Our honeymoon comprised a week in Orlando and then a Caribbean cruise.

My brother got married in July. He and his now-wife chose Aruba in the Caribbean as the location for their sun kissed day, and I was among a small group of family and close friends invited to join them for a fortnight in the sun.

Both, in differing ways, presented challenges when it came to managing my symptoms.

Beforehand, I was struggling to wonder: would I manage to get through each day? How would I cope with the ‘excitement’ of Orlando? Would we get to do all the things we hoped to do on our honeymoon. And, for my brother’s wedding, would I manage to summon the energy to make it through the whole of their big day in such intense heat.

In summary, it wasn’t always easy, but by trying to be strict on myself, I did it.

One of the hardest things was listening to my body. For our honeymoon, we’d just got married – itself an exhausting chapter – and now here we were in an entertainment hotspot. I felt an obligation to not be a ‘burden’ on my husband, to hold him back from enjoying all this Floridian metropolis has to offer. Indeed, it was this self-imposed expectation and obligation that threatened to cause the most harm – as I am still not good at listening to my body.

In reality it worked out well. And there are some basic tips I thought I’d share with you.

First up, we planned nothing in advance. It would have saved us a lot of money to pre-book theme park tickets, for example. But I know, from repeated experience, that over-planning places a heavy burden on me which can exacerbate my symptoms. Instead we took it one day at a time.

On day one we did visit a theme park. We took it slowly. We felt no pressure to achieve any target. If it was one ride, that was fine. If it was two, that was great.

We managed a morning there, and then I spent the afternoon back in the hotel room laid flat, occasionally dozing, and then we headed out locally for an early dinner before an early night in bed.

That, broadly speaking, proved to be an effective template. For me, ever two or three days I didn’t feel able to do anything at all, so I stayed in the hotel or local coffee shop reading a book or a newspaper.

A couple of nights in the week we ordered takeaway pizza to our hotel!

I found, towards the end of the week, the thought of the crowds at a theme park simply too overwhelming. So, instead of a possible Disney day, we chose the much quieter Sea World. It worked nicely.

Our second week was what is fast becoming our favourite way to take a holiday: a cruise. This time the Caribbean. That template of a morning strolling around the ship or on a port day taking an hour or two ashore was ideal. We didn’t take any trips so I wasn’t locked into a schedule. After lunch I’d rest in the cabin. We’d do an early dinner and then generally sit quietly in a bar. A few times I really wanted to see an evening theatre show but it felt too much, so I simply didn’t do it.

Again, that guilt of feeling like I was holding back my husband’s enjoyment took over my mind – but his reassurance was just perfect.

As a honeymoon, it exceeded all my expectations. Interestingly, as a non-sun person, I found short bursts of sunshine physically restorative. It was quite noticeable and surprising. I’m not good with heat and humidity, but those morning outings – whether a short stroll on board or a trip ashore seemed to do me good.

And then there’s my brother’s wedding. A fortnight in Aruba.

He was brilliant at making clear he wasn’t expecting us all to do things as a group, so that Orlando template worked well again. A morning stroll to a coffee shop to read a book, perhaps an hour on a sun lounger. And then an afternoon laid on my bed, often including a doze, before an early dinner.

On a couple of nights I then made it out to join others for a drink. But most nights it was TV in our room!

Come the wedding day itself, the ceremony was 6pm followed by a meal and then drinks and entertainment on a nearby pier.

I made sure both the day before and the day of the wedding were even lower key – and I made it out from 6pm to 11.30pm, exceeding all my expectations.

The next day was a write-off and the rest of the trip was even lower key – but that was okay.

I ended the holiday in quite a lot of pain, from head to toe, and noticed my vision fading as I tried to read a book on the final day. But, on balance, not bad!

I can offer no useful tips about air travel. I’m not great at sleeping on planes. On the way home I even tried taking three Diazepam tablets, but that only knocked me out for an hour or two!

At the airport we took everything at half pace both heading out and returning home. There’s a temptation to rush from A to B but remember: your seat is reserved so there’s no need to pile on with the crowd!

My overriding take-home from both holidays is to banish expectation, banish plans, and absolutely listen to your body. There’s that in-built worry of letting others down, but that worry is pointless as it doesn’t change anything… so why do it!

I know that’s easier said than done, but it’s true.

This, of course, is my experience. Everybody is different. Indeed my own experiences will vary depending on where I am at with my symptom management. If either of these holidays were in the middle of my boom and bust cycles, it could be a different story.

I’ve found taking some trashy books with me to force me to try and stop and relax was useful, as switching off doesn’t come easily to me.

I’ve also found reminding myself of the restorative effects of the sunshine a helpful way of trying to appreciate any given moment.

And I took lots of pics on my phone along the way – a lovely way to replay the trip and re-ground myself in that different pace that comes with a break away from home.

The downside? That mountain of laundry!


  1. Sounds amazing! I can totally relate to your pace and pattern of fatigue & other symptoms. Your tips give me tremendous hope for the future as I am now fully embracing a loving relationship after being alone for a few years. Many thanks & huge congratulations!!!

    Liked by 2 people

  2. Thank you for your tips. I also feel guilty that I’m holding my husband back when we go on holiday, but pacing is crucial to not crashing badly during or after the holiday. I would love to go on a cruise but worry that the port days would be too much for me as I would want to see as much as possible of the places to visit but wouldn’t be able to walk too far. I’m pleased you were able to enjoy your holidays and congratulations on your wedding.

    Liked by 1 person

  3. aw this is a great post! I have been worrying a lot and not planning anything at all. Even the fear of going on a day trip somewhere prevents me from doing something. this has been very helpful. I will just need to make sure that whoever I go with is understanding as not everyone is….no matter how close they are to you…Congratulations on your wedding!!

    Liked by 1 person

  4. Hi Gary,
    You have no idea how your blog cheered me up this morning and I am so glad that you managed to enjoy your honeymoon and the family wedding. You seem to be coping with your illness in such a sensible way. When I find my “sensible head” I am going to try to put your tips into practice. I just had a holiday with my family and because I was trying to be the person I was before I overdid things at the beginning of the week and spoiled the bit that I was looking forward to the most. Next time I am going to have a little “Gary voice” in my head that says “slow down and take it in small chunks and you will get it done” 😃.X

    Liked by 1 person

  5. Hi Gary!🤗✨
    How fantastic to see a couple of your holiday pics and to hear how you managed ‘both’ holidays! I quite agree that it’s all about ‘pacing’ – everything is when you’ve got ME!…and you seem to be managing yours pretty well- so congratulations on that but more so for surviving the holidays/honeymoon ‘and’ enjoying them!lol! Thanx for sharing Gary and I’m loving ‘The ME show!’georgie xxx😘✨

    Liked by 1 person

  6. Just a little extra info for future travelling….
    I recently travelled to Guernsey from Birmingham to meet my new Grandson….. Normally I travel from Southampton which is such a tiny airport that I hadn’t considered the impact of a larger airport.
    I checked the disability policy and discovered they are able to offer assistance for hidden illness. I received a lanyard and a voucher for the priority route through security. Later on at the point of collapse I asked a member of staff if I could have their chair, no question asked I was given it straight away.
    On the way home I wore my lanyard on the plane and flight staff asked me if I needed assistance on arrival…
    It’s good to know!

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s