Mito and Me Uncategorized A well deserved holiday…

A well deserved holiday…

Sam in front of a Cruise Ship

My first holiday in years. My first holiday since my glorious honeymoon in Mauritius. My first ever cruise. My first holiday since being diagnosed with Mitochondrial Disease.
It's a big step, committing to a holiday. Especially when you're unwell. There's so much to think about before you even get to the exciting - and stressful - task of packing, and frantically turning your house upside down at the last minute, looking for your passport.
Travel Insurance. Let's get this one out of the way first. What a nightmare. If I had a pound for every transfer, and minute, that I was on the phone discussing Mitochondrial Disease with someone, then I'd have quite a few pounds and would be able to have a damn good takeaway!

Trying to explain face to face, let alone over the phone, about Mitochondrial Disease, is a milestone in its own right. As frustrating as it can be, repeating yourself over, and over, and over again, it isn't the persons fault that they have no idea what it is, and what it entails. It dawned on me that whilst I was explaining for the twentieth time what Mitochondrial Disease actually is, I was actually simultaneously raising awareness of the disease. Seeing as the person I spoke to had no idea what it was, and even the Insurance company's medical team had very little knowledge of it, I figured that they wouldn't forget me in a hurry, and I was doing my part as an advocate for Mito, by explaining what exactly it is. And just like that, my frustrations eased.

As expected, they couldn't just type in Mitochondrial Disease, or CPEO, and click on a drop arrow to add it to my insurance package. Of course not, that would be too easy in this minefield of Mito that I'm living in every day. I was told that I had to wait for their specialist medical team to call me back, and that I would have to go through all of the questions that I had previously gone through many, many times, once again. The medical team would then assess my answers, and symptoms, and choose a health condition that appeared closest in its description. Thankfully, as most should be these days, the phonecall was recorded, but I still double-checked that everything was on record, when I asked if I would be covered for my actual disease, and symptoms, even though something else was written into my insurance. They assured me that I would have no problems with this. Its a good job really, because they weren't able to add 'Mitochondrial Disease' to their lists. That would've been too easy.

I happen to pay for Worldwide travel insurance with my bank account, however, now having disclosed my condition to them, I was informed that I would have to pay a premium on top of what I already pay on a monthly basis. So basically, I'm now paying for Mitochondrial Disease to take a trip with me. The premium was close to £100. At the time, I was told that this premium, and the hundreds of questions and confusion that came before the final total, would need to be applied to every single trip outside of the UK. Thankfully, I have since been told that I can be covered on a yearly basis, for said premium rate, and just renew it every year. Which isn't so bad, considering.

Just when you think you can take no more of the seemingly endless phonecalls (because even talking on the phone is exhausting these days), your insurance is sorted, and you can finally tick something off your holiday to do list!

I’ve been trying to lose weight for some time now, and thankfully, I’ve succeeded in losing quite a substantial amount. There’s a lot more to go, but I’m on my way, and I’m happy about that.

There are a variety of reasons why I wanted to lose weight, with one of them being my health. Seeing as my organs are already working overtime because my Mitochondria aren’t playing ball, I thought I’d give them a helping hand by losing some weight, and taking the strain off them. Being overweight doesn’t cause Mitochondrial Disease, but it certainly doesn’t help your organs when they’re already putting in the hours fighting against Mito. So, every little helps, so says the popular supermarket chain that stocks my favourite chocolate.

Another reason is my looks. A vain reason, I know. But I’m only human, and I’m only thirty years old, and I want to be able to look in the mirror and say ‘damn girl!’, and feel good about myself as I proclaim this. This hasn’t happened yet, but I’m sure that one day, at some point, in the very distant future, I will be able to look in the mirror and be happy with what I see. It’s a work in progress, but with will power and determination (that need a little coaxing sometimes), I’ll get there in my own time.

But on the very top of my list, the cherry on top of the icing (mmmm icing!), the crème de la crème of reasons for losing weight, is having a baby. I currently don’t know what the baby situation is, or whether I can even have children, so that is something that is going to need to be discussed in depth with my Consultant and Gynaecologist. There are many factors at play here besides weight, including much medication, and of course, the elephant in the room, Mitochondrial Disease.
However, by losing weight, I’m giving my body the best chance at being as healthy as it can be to carry a baby for nine months.

My immediate focus for losing weight more urgently, however, was for this family cruise. I desperately wanted to look good, and feel like I looked good for this holiday. I was almost four stone down on the day of boarding, so there was nothing more to be done, except to enjoy myself, and ease the pressure off. Besides, the calories were screaming at me to stop being so restricted, and allow myself some much needed delicious, and guilt-free, niceties. The breakfast pastry buffet can certainly assure you that I took the pressure off. As can my double chin.

So, after losing a substantial amount of weight, I had to do a spot of shopping before the holiday arrived. I say ‘a spot of shopping’. What I really mean is a whole new wardrobe. I didn’t want to be wearing clothes that hung off me, making me look like a sack of potatoes, on my first holiday in years, and on a cruise, no less. After dropping four to five dress sizes, I wanted new clothes that were a little more fitted. Not squeeze-yourself-into-a-sausage-skin kind of fitted, but fitted in a way that celebrated my curves, and my new-ish figure.

It was a surprise to be able to have more choice of clothing in clothes shops that don’t necessarily cater for the larger woman, as well as smaller sizes in clothes shops that were directed at the more voluptuous. I bought new tops, dresses and trousers, even many, many pairs of new shoes. Did you know that feet lose weight as well? That was a very welcome bonus!
After much shopping and sorting out, I eventually came to the conclusion that I couldn’t decide what to pack on my week long cruise to Norway. So, I packed everything. I even had a separate suitcase for my beloved shoes, and a separate suitcase for my make-up, and hair supplies. I was serious about wanting to look good!

Armed with all of my medications, and the entire stock of anti-sickness tablets from my local Chemist, after packing like I was moving out, my husband had the joyous job of loading the car to breaking point, squeezing himself into the back seat - almost sitting on top of my dad - with mum in the passenger front seat, loaded up with her handbags and mine. A quick selfie, and we were ready to set off from overcast and chilly Wales, to slightly less overcast, but equally as chilly Southampton.

I’m the first one to offer to drive anywhere, mostly because I love driving (especially my car), but also because I don’t do too well as a passenger. In any form of travel to be honest. Think projectile, think The Exorcist. But equally, I’m the first one to admit that driving takes it out of me, no matter how much I love it. It’s exhausting, and I know when to pull over and ask someone else to take the wheel, and have a much-needed coffee break in an overly priced Service Station. However, no matter how exhausting it may be, I’m always proud of myself for driving. It takes a lot for me to leave my home, so I can’t give myself anything other than kudos for leaving my house, and travelling to Southampton, ready to embark on our first family cruise the next day.

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