Mito and Me Uncategorized A Sailors’ Life for Me…

A Sailors’ Life for Me…

New Blog Entry - A Sailors' Life for Me

I’m not a very good traveller at the best of times. Car – I have to sit in the passenger front seat, if I’m not driving. Dose myself up with sickness tablets, and have the aircon on full blast, even during freezing temperatures in winter. Train – I have to sit facing forward, and switch when the train decides to go in the opposite direction. Again, I have my sickness tablets, and I sit by a window, making sure to look at the furthest thing away from us on the horizon. Aeroplane – this is the toughest of the lot. I’m to the minute when taking my sickness tablets, I have to sit next to a window, as close to the front of the plane as possible, and I require every passenger to donate their sick bags.

I’d never gone on a cruise ship before, but I had gone on a ferry, and that is an experience that I would very much like to forget. How wrong I was to compare a cruise ship to a mere ferry. It made the ferry look like a dinghy!
Boarding was fine – if a little terrifying, because the ship was so big, that from the boarding station, I couldn’t see the top of it when looking up! Boarding for a cruise is a little similar to boarding a plane. You check in, go through security, and wait at the boarding seats to be called. The only difference really, is the size of the building. Whereas I need assistance to navigate an airport these days, as I can’t manage the walk anymore, I was ok navigating the cruise boarding, just by holding onto someone’s arm.

Let me tell you something… when you step onto that cruise ship, all notions of it being a boat, and how does it manage to float, and how can it hold so many people, etc etc, go out of the window. You are stepping into a completely different world. There were the most beautiful display of lights hanging from the ceiling of one of the top most floors, cascading down to the lobby into which we entered as we boarded. I’d never seen anything like it. There was a red carpet guiding us, much like the yellow brick road, to where we were supposed to be, being met on the way by the ships’ photographers, who wanted to photograph us for a family portrait. Being our first cruise, we of course obliged (and then I later bought all of the images to keep forever!).
There were grand pianos adorning the marble floors, and plush sofas and armchairs surrounding a gleaming dancefloor, where a jazz band were set up. This was still in the lobby! We were guided past jewellery shops, handbag shops, essentials shops, perfume, chocolate, alcohol, shoes… the list is endless! There was even a library!
Our cabins were located through the Art Gallery, so it was lovely to be able to admire the different artists and exhibitions every day as we made our way to and from our cabin.

Our cabin was small, but with enough room to fit a double bed, two bedside cabinets, a desk and fridge, wardrobe, and small en-suite. We had a window cabin too, because I thought I may have less chance of feeling nauseous if I could see outside. I was expecting a porthole. I think I had stereotypical ideas of what ships were supposed to look like inside. And to be honest, my only experience of a ship, was watching Titanic. But I was pleasantly surprised to find that our window was above our bed, and was actually very large. Almost the width of our cabin. It provided us with the perfect view – we could see the sea for miles, in all its deep navy glory, and at times, it was so still, it was like looking at the most beautiful shade of glass. Our small cabin very quickly became our cosy bedroom, that I looked forward to being in every night for the next seven days.

Our first stop on our cruise to the Norwegian Fjords, was to be Stavanger (pronounced Stav – Anger), but it would take two days at sea before we even arrived at the Fjords. That was fine by me. The ship was a huge treasure trove of experiences, just waiting to be discovered. And finally, I could experience something new, and exciting, for the first time in years, and still be able to conserve my energy, and not push myself past breaking point.
I made my way around the cruise ship by always holding onto someone’s arm, and thankfully, there were elevators everywhere. Although on the odd few occasions that we had to use the stairs, it was only one or two flights, and I was always helped. I wasn’t ashamed to be given help, or to take my time. This was my holiday as much as anyone else’s on that ship, and I quickly got over the need to justify why a young woman needed the assistance of her husband, parents, or brother, when walking, using the stairs, getting up from a chair, and generally just being.

That is something I struggle with daily. The need to justify why I can’t walk on my own for very long, or very far, or why I can’t do things that other people can do, why I can’t open my own bottles, or why I’m exhausted and in pain all of the time. But then the frustration kicks in, and a part of me believes that I have to justify myself to no one. This is my disease, and just because I may look fine most of the time, it does not mean that I am fine. Far from it. That smile you see on my face is often to hide the embarrassment of having to live with mito, but at times, that smile on my face is genuine, when I’ve accomplished something that I never thought possible, even if I have had help achieving it. So, you can guarantee that I spent the whole of our cruise holiday with a giant smile on my face.

There were bars upon bars, cafes upon cafes, and restaurants upon restaurants. I still haven’t been to every bar or restaurant on that ship! We initially decided to take out a drinks package, thinking that it would save us money in the long run, as I drink quite a lot. It’s important for us to keep hydrated without having mito, but with it, it’s even more important. So, we didn’t want to be paying over the odds for all the drinks that I’d be racking up. Unfortunately, there was a condition in the drinks package contract. If one member of your cabin chose a drinks package, you would automatically have to choose the same drinks package. There was no sharing of drinks packages allowed, so you couldn’t get away with only having the one drinks package and saving a bit of money that way. Here’s the difficult part though – I don’t drink. I don’t like alcohol, but more importantly, for some reason, my body doesn’t tolerate it, and after one or two sips of something alcohol, I’m paralytic, and like I’ve been on the pop for a solid week! So, I steer clear of it completely. My husband, however, does drink. There was an option of the Ultimate Drinks Package (which included all drinks up to certain price – alcoholic, soft, hot), and there was an option of a Soft Drinks Package (just soft drinks, and hot drinks, but excluding anything that comes in a can). We had discussed my needs with the cruise company direct, and they assured us that we would be to have one drinks package of our choice, each, considering the circumstances. However, this changed dramatically when we went to sign up for our packages, as the ships hospitality manager refused to give us this deal, as it wasn’t written into the original contracts. We explained about speaking with the cruise company directly, but he wasn’t having any of it. So, we decided we’d give all drinks packages a miss, and see what the damage was by just ordering what we wanted, whenever we wanted. And guys, it worked out much cheaper for us that way! Even with all that I drink! So, if you’re going on a cruise, consider not having a drinks package, because you may be able to save yourself some cash. It’s definitely something we’re going to do on our next cruise.
Anyway, back to the main story – I was starting to sound like Money Saving Expert, Martin Lewis, back there, trying to save you all money with top tips!

There were three main pools, children’s pools, and two Jacuzzi’s for every pool. And over one of the pools, there was an outdoor cinema! There was even a golf course on the top deck! I couldn’t get over this other world that I had stepped in to! And there were seats everywhere! So, I could literally go anywhere I wanted on the ship, and then sit down and relax, and have a rest. It was the perfect first holiday for me to go on after being diagnosed with mito.

There was the most beautiful spa, and I’m not afraid to say that I indulged in a gorgeous facial, and a full body hot stone massage. Why not? I think under the circumstances I deserve to treat myself! Don’t forget that! If you’re able, give yourself a treat now and again. If you’ve done something you’re proud of, or if you’ve achieved something you didn’t think you could, or even if you just feel like a treat would make you feel better, then do it! Book a massage, or buy a new outfit, or make-up, books, DVDs… whatever you consider to be a treat to yourself, if you’re able, then do it. We all deserve this.

The ship was equipped with a state-of-the-art gym, although I had no use for this, my husband, dad, brother, and his partner, made use of it frequently. Wasted time, if you ask me, when you could be sitting on the top deck watching out for whales, and just taking in the vast expanse of the ocean with a mocktail in one hand, and ice-cream in another.

They had a west end type theatre, with shows every night, from Motown Hits, to magic shows, to music of the decades. There was a casino (that I may have visited once or twice, or five times, just to see what it was like), they had karaoke, bingo, quizzes, tribute acts, musicians. In fact, you name it, they had it. They even hosted The Captains Ball, which saw me and mum glam ourselves up like nobody’s business, and the men all dressed like 007. Very, very suave. I even managed a little dance with my husband at the end of the evening, and I was exceptionally proud of that.

So, after two days at sea, exploring the ship, taking it all in – of course, there are still parts of the ship that I haven’t seen, but I had to choose what I wanted to do, and what I wanted to see, in order to be able to rest and experience the holiday as best I could – we finally reached the Fjords, and oh my goodness, there is nothing like it. Sailing through the Fjords was like nothing I had previously imagined it would be. I thought I had seen beauty whilst travelling in the past, but this was on a different level. It was awe-inspiring, and I urge all of you, if you can, to get yourself onto a cruise and head to the Norwegian Fjords.

We docked early on a Monday morning in Stavanger, and had to be ready to meet our respective excursion guides pretty much as soon as we were tethered. My budding-Bear Grylls-husband wanted to climb a mountain. Clearly this was not the excursion for me, so I went with my parents to take in the best of the Stavanger countryside, stopping at Fjords, famous landmarks in Stavanger, and of course Norwegian Lapper. What is Lapper? I hear you ask. It’s basically a huge, thick and fluffy pancake, that it eaten with jam, and sour cream. It was delicious! The best type of pancake, and pancake accompaniment that I’ve ever had! And what made it better, was that we had stopped at a candle workshop, whose owner had spent years digging into the side of the cliff face, and had created the most atmospheric, beautiful, underground restaurant that I’d ever seen. Not that I’ve seen many underground restaurants hand-carved by a single man. Continuing our tour after our little stop, we even saw boulders that were the size of houses! All of this was by coach, so, armed with my sickness tablets, that I was taking at every specified hour, it was a great way to experience Stavanger. We made the few stops to see breath-taking landscapes and famous landmarks, but it was mostly sight-seeing from the coach, with our tour guide giving us detailed information on Norway, its traditions, its history, and so forth. It was wonderful, and possibly my favourite excursion out of the lot of them. Quite possibly this was because by the end of our first excursion, I was so exhausted, that I could barely see straight, which had a knock-on effect when it came to our other excursions. Mum and dad wanted to have a little wander around the town where we were docked, but I was struggling, so I ended up back in my cabin, and in bed. It was a much-needed rest, and whilst I wasn’t able to go exploring the little town with mum and dad, I didn’t feel like I’d missed out, as I’d seen so much on the coach tour, and experienced some Norwegian culture. Plus, having a rest meant that I could attend dinner that evening.

Dinner was wonderful every evening. We had the same table, with the same waiters and sommelier every night. They got to know us, anticipating our drinks orders and food orders before we even knew ourselves. When I had had a few sips of my water, one of them would be there ready to top my glass up. When my brother asked for another scoop of ice-cream, they provided us with extra bowls of ice-cream for the rest of our stay. They even had the chef cook us samples from any meal we liked the sound of, but didn’t want to commit fully to. They were truly wonderful people, and we thoroughly enjoyed their company and service. And the food! Oh, the food! I may have been trying my hardest to lose weight before the cruise, but the ship’s food made me forget any semblance of a diet! But that was ok, because like I said, this was my first holiday in years, and I wanted to experience everything I could manage, and enjoy myself. So I don’t regret having one scoop of ice-cream too many, nor do I regret drinking copious amounts of J20 and mocktails! It’s all about balance. I was too hard on myself before our cruise with regards to losing weight. Too hard, in fact, that I found myself under the care of another heath specialist, battling with new disorders that I didn’t think would ever happen to me. But that’s something I’ll address in a later blog post. For now, back to the cruise!

Overnight, we sailed to Flam (pronounced Flom) for our next stop, and our next excursion. This time, me and Mr. J went on our own excursion, to experience Flam in our own way. We decided to take a scenic Railway Journey through Flam, past the most beautiful waterfalls, and through the most breath-taking mountains that I’d ever seen. The train was known to travel the steepest track up the mountains, and once we got to the top, surrounded by snow, it was like something taken from a postcard. And you’d think that surrounded by snow in the mountains would be a tad chilly, but it was twenty-two degrees, so we didn’t need our coats, or scarves, or gloves! Mr. J went full Norwegian experience, however, with walking boots, walking poles (that are actually extremely handy to support me when walking, if there is no one’s arm to hold onto for support), rucksack and woolly hat. After our ascent into the mountains, we experienced a traditional Norwegian lunch in a local hotel. Now, I’m extremely fussy with food. I don’t mean just a little bit, or that there’s a couple of bits that I don’t like. I mean extremely fussy. My diet is mostly beige, and I can’t tolerate some foods being in my mouth due to their texture. It’s all a bit complicated, and there’s no quick fix for it, if there’s even a fix at all. So, I found a lot of the traditional food quite unappealing. But it went down a treat with Mr. J! There was different meat (some of which had no labels), different salads, vegetable dishes, potato dishes and pastas. So, I was quite limited on what I would actually be able to tolerate. However, after the lunch, we all piled onto a coach to start our descent back down the mountain and back to the ship. The descent included over twenty hairpin turns down the side of a mountain, in a coach, so I’m sure you can imagine my horror at this, when every turn looked like we were about to drive over the side! But the drivers of Norway are skilled at what they do, and we reached the bottom safely, although it took us what seemed like hours to get there! Once I knew we were off the mountain, it was as much as I could do to keep my eyes open. I was fighting a losing battle, but there was so much left of the excursion that I wanted to see. It was about a three-hour journey back to the ship, with scheduled stops for photographs and taking in the views. Our tour guide told us stories of Trolls and Norwegian myths, and as fascinating as they were, they next thing I knew was being woken up by Mr. J in front of the ship. I’d missed most of the entire journey back, and I felt so disheartened and guilty for not experiencing what I so badly wanted to see and learn about. This was only our second excursion – we had another two to go, and the evenings on the ship to enjoy. I was worried about how I would manage. The one thing I never worried about, however, was whether or not I was enjoying myself. I was loving life at sea so far, no matter how exhausted or unwell I felt!

Another overnight sail saw us dock into Olden in the morning. There’s something about sailing through the Fjords that’s just magical. Especially waking up to find that you’re in a new and exciting location. Our excursion was one that I had been excited for, for months beforehand. We were going to see Glaciers! It was another long trip by coach, however, and as soon as I sat down, I could feel my eyelids getting heavy. When I usually go on holiday, I lie by the poolside reading and sunbathing, having a bit of a dip now and again. That’s how I like my holidays to be. Complete, uninterrupted relaxation. But Norway was so different for me. I wanted to explore, and experience everything I could. I was doing as much as I could by signing up to excursions, so I just needed to stay awake to actually get the most out of them. Once again, our tour guide was brilliant. Perhaps the best out of the lot. He was such a good story teller, regaling us with tales of Trolls, traditions and legends. Plus, his name in English translated into Justin. And his last name was Bieber. So that gave us all a bit of a laugh! We stopped by a Glacier museum on our way to another hotel for a traditional lunch, so we were able to learn a little more in-depth information into how Glaciers are formed, how they move, what to look out for etc. The physics behind it all was fascinating. And I did a little better with lunch this time, as there was more meat, and less salad. When we stopped a couple of hours later, we were able to admire a Glacier sitting on top of the snow on a mountain, and fixed into position down the side. We could even see the hues of blue throughout the ice, and although it wasn’t the Glacier we were admiring, we heard a clap like thunder from the distance, which Justin explained was another Glacier cracking, and falling down a mountain. It was incredible, and the sound was ear piercing. It sounded like a gunshot, and it wasn’t even near to us. I can only imagine what it would’ve sounded like if we were watching it crash to the ground! Unfortunately, once again, on another long journey back to the ship, I wasn’t able to fight my fatigue any longer. I couldn’t even get off the coach at the scheduled stops to take photographs, even with Mr. J’s help. My body felt stiff, aching and painful. I couldn’t even will myself to lift my arms as I sat slumped in the coach seat. I missed beautiful sights on the way back, but thankfully, Mr. J filled me in, and had taken some photographs. I was just thankful that I had managed to see the Glacier!

Our final Norwegian destination, was Bergen. This was my least favourite of the places we had stopped so far. Still as beautiful as the others, but perhaps feeling so unwell and exhausted had finally taken its toll on me, so I wasn’t feeling much like a seven hour excursion. That is one thing I will say for the excursions – whilst there are wonderful landmarks to be seen, and so much to do and see in Norway, the excursions really do not have to be five hours plus. We should be able to enjoy the landmark or sight that we want to see, and then head back so that we can have our own personal time to explore the location, if we so wish. Our last excursion was to see a huge waterfall. And not only could you see it, but you could walk behind it! For months before the cruise, this was the one sight that I was most looking forward to, and I loved it. But it only took about an hour or so to get there, we saw the waterfall, walked behind it, and took photographs. We didn’t need to spend another five or so hours on the coach with a tour guide who had about as much oomph in her as a soggy lettuce leaf. Saying that, I didn’t feel too bad about sleeping the whole journey back to the ship. I didn’t feel as though I’d missed out on her stories, because unfortunately, she didn’t really tell any. And any scenery that I wanted to see, Mr. J had taken photographs of to show me. So, after a few hours of sleeping on the coach, I was able to muster up enough strength to enjoy our evening meal and have a drink in the beautifully decorated, and named, Planet Bar.

We spent another day and a half sailing back to Southampton, and it was as smooth a sail going home, as it was sailing to Norway. We spent our time enjoying what the ship had to offer, and relaxed with mocktails and spa treatments. Which at this point, were very well earned, and deserved. I even treated myself to a couple of handbags, and a rather expensive facemask (the hard sell in the spa worked a treat on me!). In fact, I still haven’t used it because it was so expensive! I’m used to a Garnier Tissue Moisture Bomb mask!

The final evening on the ship didn’t quite go as I’d planned. I’d wanted to stay up with my family, and Mr. J, having drinks and enjoying the casino (whilst losing at Roulette. Again). But it wasn’t to be, and if I’m honest, I know deep down that I did really well to last as long as I had. Minus the involuntary sleeping I was doing on the coach trips.

Our last night saw me clutching the toilet bowl in my cabin like I clutch a Mars bar when I’m dieting. The vomit comet was well and truly underway, as was the dizziness, pain, Migraine and complete and utter weakness. When I felt it was relatively safe to come out of the bathroom, I climbed into bed and just let my body sink into the mattress. When I’d mustered up enough strength to lift my hand, I switched on the TV and settled down to watch Life of the Party. Ironic, eh? Mr. J was with me, and the rest of my family came in to sit with me, but I insisted on them all going back to the bar to enjoy their last night on holiday. I was fine resting in bed with a good film.

I had the best week I’ve had in a long, long time when I went on that cruise ship. It didn’t matter that I slept every afternoon, and through the excursions, or that I was unwell, and couldn’t manage to spend my last night with my family. I’d done far more than I ever thought I could, and as unwell as I felt, I remember telling my mum that I wish we were on the cruise for another week. I loved it so much, that me and Mr. J are definitely going to do another cruise at some point. Who knows when, or where though? And I would tell anyone with Mitochondrial Disease to consider a cruise as a holiday. You don’t have to sign up to excursions – you can explore at your own pace, in your own time whilst docked. Or you can even stay on the ship! There’s always plenty going on! The ships are wheelchair friendly, and the staff are on hand to make everything easier for you. It can be as relaxing, or as active as you choose to make it. But it is do-able, and it truly is a must for anyone who has never experienced it before.

Mito may be strong, and it may win some days, or most days, but it didn’t stop me from sailing to Norway, and loving every single damn minute of it.

Bergen Waterfall

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