I’ve Got to Get Out of This Place: Holidaying with M.E.

Having M.E., you live in a self-imposed bubble. A self-imposed bubble but equally a bubble over which you have no control of its size. For some its radius is a mere few metres, for others it is several miles. This is however always an almost completely translucent bubble, few from the outside can see it and although you are always aware of it, from the inside you too can only sometimes see it and you can easily allow the very existence of the bubble to slip your mind.

You can considerable expand your bubble by using the power of adrenalin. Adrenalin pumps up the bubble considerably, enabling you to walk further or stay more active longer. Adrenalin however fundamentally weakens the structure of the bubble. Adrenalin does not add extra material to your bubble, your bubble just becomes thinner and thinner and thinner. While it will for a long time remain intact, prolonged expansion using only adrenalin means that its walls become weaker. It may seem like you are coping with the expansion from outside of the bubble but in the inside, you are feeling weaker and weaker as everyday goes by. Ultimately adrenalin can be a destructive force. Allow it to keep expanding your bubble synthetically and one day it will suddenly burst. Without the safety of your bubble, you absolutely collapse, unable to complete even vaguely what you could have completed prior to your bubble expansion.

There are things you can do to try and strengthen the structure of your bubble: you can rest a lot more, you can go to a spa but ultimately these are just sticking plasters. If you continue to do more than your bubble makes it safe to do, your bubble will burst.

This was my experience of holidaying for the first time with M.E. For 10 days I did so much – I walked 2 or 3 times further than I should have, I sat for dinner for two hours every night and socialised, I lay on a sun bed ‘resting’ surrounded by the chatter of other guests. I knew I was taking a massive risk by doing this so tried to counter it by ensuring that I rested in our room during the day, I went to the spa every day, I went to bed about 8 every night. My bubble still burst and it burst in quite a dramatic way. I went from one minute feeling fine to the next minute barely being able to walk across a room and desperately nauseous at the sight of food.

What was the catalyst that lead to this collapse? I simply wrote for just a little bit longer than I should have. The catalyst wasn’t that I walked too much around town or went out dancing at night. You could argue that there wasn’t really one catalyst to that collapse but actually very many – what about the walking too far every day for 10 days and the socialising over dinner for two hours every evening? You would of course be right. When you are having a lovely time, it is very easy to allow yourself to believe that just because you feel okay at that very moment or even that you feel okay the next day, that prolonged over-exertion won’t lead ultimately to a collapse.

This is the power of adrenalin. Adrenalin masks how your body is feeling; it tricks you into thinking that your body can do more than it actually can. Adrenalin takes no prisoners however – when it decides it is time to disappear, it will disappear and what’s more it will take your energy with it.

Am I then advising against holidaying if you have M.E.? No, not at all. I am however advising that if you are to do it, you don’t forget that adrenalin may well cause you to do far more than you really know inside your little bubble, you should do.

I reached the point after about 5 months of being ill where I was desperate to get out of the house, out of Stratford upon Avon and go somewhere new. I wanted to see new people, new places. I wanted to eat new food. I wanted to wake up in a new bed. I just wanted everything to be different. Throughout my illness I never suffered from cabin fever. Normally during half-terms and summer holidays I would come down with cabin fever within a week or so. I knew I was very ill because I never felt that way. Yet I was still desperate to get away and to be in a different environment. I never felt bored just sick of being in the same place all the time.

It is very depressing to hear your husband and friends and family tell you all about their great holiday or where they have been for work. We normally went on holidays three or four times a year so the concept of having months stretching ahead of me with no plans did get me down.

We hummed and ahhed about how we should go on holidays. Initially, I thought an all-inclusive resort somewhere would be perfect. I wouldn’t ever have to leave the hotel unless I wanted to and was able to. We had, however, never been on such a holiday. We always liked to travel independently. The adventure of searching out where to stay and where to eat was all part of the holiday. This time however we knew that that was not going to be possible.

The other draw back of course to going on holidays to some hotel somewhere was simply the process of getting there. We knew that Chris would have to carry all of our luggage as I was no longer able to do this. We knew that just getting to the gate in an airport might be enough to cause Post-Exertional Malaise, never mind adding in a flight and then transfers after that. It seemed therefore that a hotel someplace warm was probably out of the question. We had also learnt that a hotel in the middle of a city was also out of the question, having experienced the repercussions of this after our trip to Cardiff.

What then was the solution? A year earlier, in desperate need of a holiday, we had gone on a very last minute six day cruise from Barcelona to Dover. It had been perfect for what we needed – a few days away where we had to think about absolutely nothing. We decided that while cruise ships tend to be inhabited by residents significantly older than ourselves, it provided the perfect compromise that we so desperately needed. 8 months after I got ill, we sailed from Southampton to Norway, Iceland, the Faroe Islands, the Orkney Islands and back to Southampton. In many ways it was the perfect holiday although if I was to do it again there would certainly be things I would bare in mind.

I hadn’t read much about other people’s experiences of holidaying with M.E. and indeed in hindsight perhaps I should have. Do I regret going on holiday? No, but I really wish I had known to consider certain things before we left. Would I do things differently if we were to go again? Of course.

As always, it seems that holidaying with M.E. is all about trying to balance the practical management of this illness and the emotional desire to ‘be on holiday’. Without a doubt this was a balance that 80% of the time I got wrong. Except for one day, I got it wrong on every port day. Sea days were slightly easier to balance. The question was always, ‘is this activity worth the potential pay back?’, ‘is the payback going to worsen my illness or is it just going to be temporary?’ There were a million decisions to make every day that had a direct impact on my health. Of course what I didn’t consider at the time (and I don’t understand why) was that even a seemingly temporary impact on my health actually contributed to the overall state of my health.

Being ill at home is so much easier. You learn what the particular parameters of your illness are – you understand what your bubble really is. You know just how far you can push things. You know just how far away something is when you set out for a walk. While after a week of my holiday, at least when it came to the ship, I could answer some of those questions, it was the added peripheral stresses that were often unpredictable. You may be able to walk to the coffee shop fine but it seemed there was no real pattern to how busy or noisy it would be. So one day you would walk there and there would be plenty of seats, even seats away from the rest of the cafe. The next day, at the same time, it would be filled to capacity but there would be one little seat in the centre of all the noise. The next day, at the same time, there would be no seats so you would have to walk further than you intended so you could sit in a different seating area. All of these things were an unexpected drain on me.

In addition, we never really considered the location of our cabin, except that I requested it was close to a lift so I wouldn’t have to walk far. It was and that was great, except what about the 800 steps that were needed to walk to the restaurant every night and the 800 steps back? Luckily, the spa was almost directly over our cabin so I didn’t have to walk far to there. What about the library that was my quiet escape often during our holiday – well that was probably another 500 steps there and back. In relative terms, nothing practical that I wanted to do was close to my cabin. When I left, every second day I would take 4000 steps, on holiday I took anything from 6000 – 10000 a day. An amount that was absolutely unsustainable.

Consequently throughout our holiday, I was very fatigued and spent much longer lying in bed than I normally would – but it was the only place on the ship I could lie in silence. Equally, as I said above, I don’t think I really understood the extent to which my body ran on adrenalin, day after day. In your little safe bubble at home, you get used to understanding whether today should be a gentle day or not because your body tells you so. At home however your body rarely runs on pure adrenalin. Your body once you tune in to it and can hear it, will more often than not tell you straight up what it needs to do or not do today. Adrenalin however masks this.

So, if you are the sensible one and feel you should research holidaying with M.E. before you do so yourself, here is my list of pros and cons about holidaying but in particular cruising.

Pros

1. Embarkation and disembarkation in Southampton meant no flights or transfers.

2. Luggage was collected straight from the car and placed in our staterooms – no dragging of bags everywhere.

3. Having arranged Priority Embarkation, there were no long airport queues. The whole process from car to being in my stateroom took about 15 minutes. Although my dignity didn’t allow me to use it – I could have been wheel-chaired on and off the ship – this I regret not doing – it would have at least reduced my energy requirements on two occasions.

4. One of the most important pros was the onboard spa. I may not have been able to use any of their treatments but the combination of their hydrotherapy pool and heated stone lounge chairs rescued me from collapse on many, many occasions. It also gave me somewhere very tranquil to lie still and meditate all day if that is what I wanted or needed.

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5. I registered myself as disabled. Among the staff that needed to know there was an awareness of my illness and people were extremely kind to me.

6. On days where I couldn’t go to the dining room to eat, staff would arrange for my meal to be sent directly to our stateroom. I spoke to the Head Waiter about this on our first night.

7. I told the Maitre-d about my illness and how having somewhere in the restaurant a little away from the crowds would help. We were given a table that backed up to a window – I could sit with my back to the window – therefore reduced somewhat the noise around me.

8. Room service was included in the price so if my health dictated it, I would never have had to leave my stateroom. I had breakfast there almost every morning and had dinner there 5 times.

9. Every day the ship was on the move, so everyday my view changed. I didn’t have to sit bored by the same pool every day.

10. There were very few children on board so I never had to deal with screaming kids and tantrums. The atmosphere was continuously tranquil!

11. On sea days there was a multitude of activities on – while I wasn’t able to partake in most of these, it did give something for my husband to do while I rested.

12. We either docked or tendered in the centre of most of the towns we stopped at. This reduced walking distances and allowed some very limited investigations of where we stopped.

13. The ship provided excursions that were ‘low activity’ – most of these however were still quite long – 2 – 4 hours.

Cons

1. Although I requested a cabin close to the lifts, I hadn’t really considered just how far I would have to walk to go from one end of the ship to the other. This meant that from leaving my stateroom to going to the dining room and back, I would have to walk about 0.25 mile. This had to be done several times a day. Consequently, I went seriously over my step and distance allowance everyday. It was only because I rested as often as I could, used room service and used the spa that I had only one very serious collapse. In hindsight, I should have asked for a room midship – this at least would have reduced my walking distance slightly.

2. We had chosen a cruise that mainly went to small towns quite deliberately – this enabled me to be able at least to see the town from the ship. The reality was however that I was doing so much walking around the ship, I wasn’t really able to do much walking around the town. This was a real shame as some of the places we visited were just so beautiful.

3. Excursions provided by the ship were often very long and often quite expensive. While you could choose excursions with a limited amount of walking, there weren’t many that were very short! We only chose two excursions and both were over 4 hours long. By the time we got back from the first, I was in a very bad state, very very close to collapse. I still consider it worthwhile however as I wouldn’t have been able to experience the stunning scenery of Norway without it.

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Our second excursion was on a Super 4×4 Jeep in Iceland. Oddly, although it was very long, my body didn’t react against it – that could of course have been down to adrenalin.

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Excursions therefore were all about trying to balance the advantages and disadvantages.

4. We booked an inside cabin because it was cheaper. In hindsight, we absolutely should have booked a balcony. This would have enabled me to sit somewhere quiet and private and watch the world go by. It would have made eating in the stateroom very comfortable and therefore not something I did just because I didn’t feel well. Eating more in the cabin would have enabled me to walk less.

So will I go on holiday with M.E. again – you betcha! In fact, we have already arranged a weekend away in Wales at the end of August. This time however I think I will be a little more cautious about what I do. I think I will listen to my body more but also listen to it with a touch of suspicion. I will be keeping a firm eye out for adrenalin telling me all is okay. Allowing my bubble to be slightly expanded by adrenalin every now and again is no bad thing, I will just need to ensure it thoroughly deflates to its normal size before I try expanding it again.

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5 thoughts on “I’ve Got to Get Out of This Place: Holidaying with M.E.”

  1. This is the first time I’ve read your blog and it is a timely post for me as I’m about to holiday for the first time since getting ME. I’ll be mindful to try to not to let my bubble burst however think it may be stretched to it’s limits with a young family – have deliberately chosen a v quiet area to go to so I’m hoping I’ll keep the bubble in place!

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  2. The bubble analogy is brilliant! And so true!

    I too took a cruise with ME and loved it.. We are going on another in the autumn. Outside cabin booked. 🙂

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  3. Karen, this is only the third time I’ve read your blog – very interesting! I have found this one particularly useful. I have had moderate M.E for over 3 years now, and we have a holiday booked in Devon. Your experience has made me think more about how to use my energy bubble, when I’m away from the sanctuary of my home. Thank you.

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    1. My pleasure. Yes really plan it and plan in way way way more rest than you imagine you’ll need. Being away is tiring in itself so you will need more rest than you would normally. Assume you are over estimating your energy not underestimating how much you have!

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