Thursday, 10 October 2013

Making up for being able to eat ice cream

Not sure why some of the dates of my posts are coming up earlier than they were actually published. Strange. Perhaps it's with using mobile app and it goes from the date I start writing a post? Anyhow, looking back on last week, when I was away in Kos I am made up with how well I did. Further proof that I do need to move abroad. Or more accurately to Kos. It is after all the island of Hippocrates.

Of course I was very weary of how much activity I could do and was being cautious. Afterall a 4 hour flight is a long time. If I'm honest probably too long. I was worried about it for a long time beforehand. As I have said before though I weighed it up with how well I knew the place and people and knew that it was a really relaxing place. Plus I probably would have been so upset not to have gone. But being wholly honest it was a long time. Probably too long. Especially when you're terrified of flying as well.

On the plane I was sat for the majority of the time sideways with my legs up on the seat. This was great for the legs but that night and the next day I had loads of pains in my side. This was due to leaning against the arm rest. Unfortunately the arm rest by the window doesn't lift up. I did try to cushion it with my coat but clearly it didn't do much cushioning. Before I went away I was taking approx 4 paracetemol and 4 tramadol a day but because of the increase in pain I was taking more. Luckily I was prepared for this. Sometimes with ME you really do prepare for the worst. You can often be pleasantly surprised then. 

My mistake though was not taking a hot water bottle. Yes, I know that sounds ridiculous going to a hot country. Not usually top of the packing list alongside your bikinis. At home I live with a hot water bottle literally strapped to me. I find heat to be a great pain relief and comforter. But with going away somewhere hot I thought that the natural heat should be enough. But by the end of the day after the flight my sides were so sore and tender. I was cursing leaving my bottle at home. But now comes the part where knowing the people comes in very very handy. I asked the lady that owns the restaurant where we eat (right next door to our hotel, convenient but also scrummy) whether they had hot water bottles in Greece and whether you could get them in the giant supermarket. She went one better and went downstairs to were they live to get one for me. That is what I call customer service.

Furthermore on the excellent customer service front. To get into the inside part of the restaurant, where the toilets are, there is a single step. Any time I needed to go inside the owners or waiters would always come and help me up. Even when my Mum was there helping. One night the owner came out with a tape measure and measured the width of my chair and another ladies (she had MS). Why was this? Well because he wanted to build a ramp for us to get into the inside. Just wonderful, wonderful service. It really touched me. I hear that in Greece now all the new buildings do need to have easy disabled access. So they're catching up on the pc front. Unfortunately it didn't arrive until our last night but at least they have it now and what great customer service.

Whilst I am on the subject of the restaurant and to explain the title of this post, according to the scales I have put on a stone on holiday! I haven't noticed any changes in my body or clothes which is strange given what the scales say. Perhaps they are wrong. Not that I particularly want them to be wrong as the pre holiday figure was shockingly good. Anyhow I'm not upset by it. Why? Because it was fantastic to eat 3 meals a day for the whole week. Something that hasn't happened for quite some time. As I have said before this is majorly an issue with sleep. More apptly an erratic sleep pattern that often disturbs my eating times. However whilst I was away I got into a good routine. Usually it was similar to this:

8.45 wake up

9.30 breakfast

10.00- 13.00 sunbathing, reading with naps after 20 minutes of reading

13.00- 14.00 lunch

14.00-16.00 inside nap

16.00- 17.30 sunbathing, reading, maybe a trip to the amazing duty free supermarket

17.30- 18.00 shower (sit down), get ready to go out

18.45- go out for dinner (in restaueant next door)

18.45- 22.00 dinner, talking

22.00 reading then sleep

Of course there was exceptions. A later night to celebrate my Dad's birthday. And and early night on the day when I managed to walk to the restaurant. Coinicedentally that was also the day that I woke up disorientated and accidentally took the amitriptiline that I usually take at night in the morning. Oopsie! I only realised I'd done this a few hours later too and only knew for sure by counting the doses that I had left. And generally just dependant on my fatigue and pain levels and trying to do what was best for me. But all very compatible to eating more healthily. Well maybe healthily might be pushing it a bit. Most mornings I had a croissant for my breakfast because it was the least fiddly and I didn't have to use a knife and fork to eat it. I felt a bit embarrased about needing to be fed in public. Drinking tea through a straw was odd enough to explain. My arms were more achey in the  mornings so an easy breakfast was helpful and less painful.  I love their Greek breakfasts (no not coffee and a cigarette!) Boiled eggs, toast and honey but that was far too much arm faffing.

 I did enjoy some yummy desserts too, not for breakfast though. Although my sister told me off for having a chocolate and banana crepe for lunch. Hey I was on holiday and wasn't snacking during the day. I mentioned in my post on healthy eating that ice cream gave me stomach problems. Yet I don't have an overall dairy intolerance. I have found that some ice creams don't bother me though and that seems to be the case with Greek ice cream :-P haha. There were just so many yummy combos that I had to test my intolerances. Please note the 2 spoons in the photo too ;-). I am glad though that my stomach decided to behave. Always good when you don't have something else to contend with.

The only other contributor to my symptoms was the cold wind that we had for a few days and nights. In the day it was okay as the pool area was shelteted from the wind and was actually quite warm. You could sunbathe in your swimming costume. It was just as soon as you went up the hill to the street that you needed a fleece. See a coat might not have been much good for cushioning the  armrest but useful against the bitter wind on our travels next door. This change in weather really effected my myalgia pains. I felt a bit like the tin man.   

The colder days didn't really lend themselves to a dip in the pool. The pool is generally quite cold as it is anyway. However earlier on in the week I did manage to get into the pool. Not to swim mind. That would have been too much energy and no one wants to run out of energy in a swimming pool. So I got someone to put a lilo by the ladder then I sat down on the top of the ladder and pulled the lilo in front of me so that I could just flop onto it, keeping my legs in the water. Then to get out I somehow I managed to get out up the ladder with the lilo. Hard to explain, funny to watch.

The flight home was interesting. We got onto the plane in the lift using my wheelchair. On the van/ lift they had a small a wheelchair that is able to go down the aisle of the plane. I didn't use it though as I thought I would be okay with boarding the plane at the back, closer to the special assistance seats. This was true but unfortunately this time there was still a lot of people stowing bags etc. The plane was also fuller and there was people sitting in the special assistance rows. Luckily though me and my Mum did get an extra seat so that I could put my feet up. Otherwise I might have struggled more. 

I was already quite scared before the flight. Ever since that bad turbulence in May I have been even more scared of flying. Again it's the lack of control and not seeing ahead I think. You'd think for someone with ME I'd be used to not to having control. But when that's also 35,000 feet up in the air it's fear upon fear. 

Usually I'm not too bad on take off. I can look out of the window and enjoy the aerial view but this time as soon as the plane left the ground that was the last thing that I wanted to do. I felt like my head was going to explode and like their was a huge wait upon it. I also felt quite nauseous and hot. The take off was quite steep and at an angle too, so I don't think that helped. My instinct was to shut my eyes as I tried to take deep breaths but that just made things worse.I tried a technique I learnt when I was suffering from frequent panic attacks, which was to cup my hands over my mouth and nose and take a few deep breaths. This means that you are breathing in the carbon dioxide that you have exhaled and somehow slows down your breathing. I don't know the science behind it but it does help. Once we'd leveled out the pressure in my head disapated a bit but I didn't feel much better. I was having frequent hot spells too. I think I had used up most of my packet of face wipes by the time we landed to try and keep cool and help me feel better. I was tired and couldn't relax as much so I suffered quite a lot. I just wanted to burst out crying. Well really what I wanted was to be off the plane. The not so bad thing though was that I put my cushion from my wheelchair against the armrest, so no crazy pains in my sides. 

So there we go. My time away. I'm so glad that I got to get away and also that I didn't suffer too much whilst there. It was lovely to relax, read and talk to lots of lovely people. It's nice to relax and enjoy being sociable everyday. I misd that back at home. And thank goodness for special assistance for making things even easier. I just wish I didn't have to fly to get there. I am going to work on putting some tips together for going away when you have a chronic illness. Any tips that anyone else has would be greatly recieved. And any tips for nervous flyers!


  1. I hope you had a lovely time. Thanks for posting about how you got on. I hope to be able to manage a foreign holiday again one day so it's helpful to see how others get on.

    1. Thanks Anna. I did thanks. I'm not going to lie it is difficult and involves a lot of planning but it is possible and there is help out there. I am so lucky to have found a place and people that make me feel at home otherwise I think it would be much harder. I suppose the same can be said for going places over here.
      I was speaking to the woman that had MS and her and her husband are regular travelers. They visit the same place as us once a year but also try to see different places. They said that they felt it was important to their wellbeing. Of course it must also be nice to be able to afford it.
      I hope you get the chance to get away abroad sometime.
      Sian xx

  2. The tin man....yep I know that feeling all too well. This is a great post and so good to hear you managed to make the most of your time away and enjoy your holiday despite ME. I suffered really badly with dizziness and pressure in my head on take off and landing when I flew in the summer too so I totally sympathise on that one. It was terrifying. Your ice cream looks amazing, dairy hates me now, but in my pre ME days ice cream on Greek family holidays were a staple! Don't worry about the scales, just relish the fact that you were able to control your ME enough to enjoy all that yummy food. Hope the post holiday recovery isn't too hard on you. Thinking of you. Jess xx

    1. Jess, on both flights I was thinking about the awful time you had had on take off and landing. All I could think was what if I suffered from the same. Hopefully it was just a rough take off. Bumpy runway and the angle of the plane. Has your experience put you off flying?
      I'm not doing too badly. Upped my amitriptyline and got some more tramadol after foolishly running out, so they are helping. Been well behaved with my resting. Only just beginning to feel the cabin fever sensation and want to get out, so that's good.
      Sian xx