Holidaying with Ehlers Danlos – disabled travel diary 2 – Lassi, Kefalonia

For my most recent holiday I visited a place called Lassi in Kefalonia. I must start by saying that it is a beautiful place, very picturesque with scenic views for miles. We stayed in the Mediterranee Beach hotel, situated right on the seafront with its own relatively secluded patch of beach. In September the temperature was upto about 26 degrees C, which was perfect for me as I could lie in it and the heat does wonders for my joints.

The hotel. It was a lovely hotel, we had a ground floor room which was excellent for me, no waiting around for lifts or climbing stairs. On the whole it was very accessible within the complex, there was even a lift down to the beach. It had a cute little pool to lie around that you could always get a sun lounger by. I find there’s nothing worse than standing around in the heat, PoTS going mad and desperately needing to sit before you go all dizzy with just a floor as an option. The situation was the same on the private beach with the exception of a small charge to have a lounger and umbrella. The restaurant had enough space to get around with a walking stick which is always a bonus, sometimes I find it gets in the way when really it shouldn’t, everything should be accessible.

Hotel negative: it’s down a steep, steep hill. I missed this bit of info when booking. Luckily for me I was only on a stick and not in my chair, there is no way anyone could have pushed me up there night after night. We like to explore as a family and find different tavernas and bars of an evening and if I was in my chair this would not be possible. I’ve been working really hard to increase my leg strength but I had to stop several times on the way up and down with my stick.

The food. As you may or may not know, I have gastroparesis and a lot of problems with my body reacting to certain foods. Gluten being the main one so finding places to eat that are allergen friendly is a big thing for me. We were half board so we had our breakfast and evening meal included in the hotel restaurant. At breakfast there was not a great deal I could eat so I mainly had protein bars that I’d brought from home. They did do gluten free toast and eggs but I try to only have a small breakfast. The food in the hotel had a clear marking system on the evening menu of which items were gluten free. The evening menu was put up every morning, from this I determined whether or not I wanted to eat in the hotel that night. (I’m also quite a fussy eater so going out for a meal happened on more than one occasion, you can keep your seafood and the lamb thanks). It was a self serve buffet and the menu had everything from salads to fish, meats, veg and potatoes. It wasn’t 100% to my taste but there was always an option there, I think Greek may just not be the cuisine for me.

Outside of the hotel, (once you’ve near killed yourself getting up that stupidly steep hill) there are a few lovely tavernas and restaurants lining the main road. We visited several of these, especially at lunch time. There’s a lot of pita bread going on and not a lot of separate allergen menus, therefore I’ll start with the restaurants I found to be the easiest to navigate the gluten free options.

Da Veronica.
This was for me the best restaurant we visited. The menu had a gf symbol next to all the items that did not contain gluten which made up a large proportion of the menu. We got the halloumi in balsamic vinegar, mushrooms in a creamy sauce and sausages in a spicy vegetable sauce/stew to start. It’s unusual on holiday for us to be able to share three starters so this was amazing, I also could have ate them all day they were that good.
I was predictable as ever for my main and got steak.

Best starters ever 🤤

Sirtaki Taverna
I really struggled finding gluten free pizza and pasta in Lassi. I know I should be busy trying all kinds of meat stews etc, but I just love my carbs.
This was the only place I found that did gluten free pasta, I was so excited to try this place and it did not disappoint. We shared halloumi and stuffed peppers as a starter which were pretty tasty and then for the main I just had a tomato pasta. I know sounds boring, but it’s one of my favourite things, plus after craving it all week, it was so much more delicious!

The other restaurants were a lot more difficult to figure out the menu, a lot of them didn’t exactly fill me with confidence in ordering. I asked in one place if they had gluten free pizza and the response I got was, ‘pizza is pizza’. I must admit I spent most of my time ordering chicken gyros which are just like a kebab. I just ordered them with no pita, it seemed to work out fine (even if the odd pita bread still came with them).

Overall I really enjoyed my time here, it was lovely and relaxing. I would advise this place to anyone who has a decent level of mobility or someone who wanted to spend a lot of time in the hotel. It’s just not the most accessible place, that was the only disappointment for me as I probably would have liked to have seen more of the island. Too many hills and mountains, with no easy access up them. I did get to visit Argostoli by bus which was easy enough to do. Here it was a lot flatter here and easier to navigate around and there were lots of bars, restaurants and shops.

On the bridge in Argostoli
Church in Argostoli

My invisible illness and disability are just as valid as a visible one… so why do I feel as though I have constantly validate it to complete strangers?

Since being diagnosed with Ehlers Danlos Syndrome I’ve had to overcome a lot of challenges and massive lifestyle changes. It’s been really hard for me to go from the girl who works/studies full time, runs several times a week and goes skiing, to needing assistance with day to day life and requiring the use of mobility aids. It’s taken me a long time to adjust to needing crutches to get around and a wheelchair for longer distances, but as it turns out, self acceptance is only half the battle.

I’ve recently got back from a holiday to Kefalonia in Greece, flying from Manchester Airport. I received an invisible disability lanyard on arrival, this signaled to staff that I needed extra help. Personally because of my hip pains and my PoTS I struggle standing in queues, I get really dizzy and have previously had to sit on the floor so I don’t risk falling or even fainting. The lanyard also meant that I could get a wheelchair to get me to the gate as some of them are a long distance away from the lobby hall and shops. This was amazing, the staff were so on the ball and I would recommend one to anyone with an illness/disability.

Me in my sunflower lanyard waiting for the plane

As I’ve said previously I couldn’t fault the staff at either airport, other passengers however are a different matter entirely. Being pushed through the airport by my Dad while carrying my smart crutch, people showed complete disregard and awareness for me sitting there. Barging in front of me with prams and cases, at one point I almost took a handbag to the face. Like hello, human being down here. Apparently some people have clearly never seen an ambulatory wheelchair user, as I got shot a few looks as I got out of it and dared to walk a few feet with my crutch. News flash: I’m not faking I only need a certain level of assistance. This was all nothing in comparison to the trouble I had waiting for my return flight.

Kefalonia airport is only small and so upon check in I put my lanyard on and walked with my crutch into the terminal. The rep seen me and took me to one side to the assistance desk to get checked in. On arriving to the assistance area, all the seats were occupied and I was clearly struggling standing. The rep asked who was there for assistance and half of them obviously were not. On being asked to move to some different seats outside, one man gave both her and us a glare and said it was too hot outside and he’d rather sit in there. Eventually he moved after some grumbling and groaning and looking at me like I’d threatened his family or something. Such an inconvenience to have to move for someone with a disability, when maybe your common decency should already be hinting for you to do that.

As usual people in the queue are not happy when our bags get checked in first. As the airport is so small and crowded, I thought I’d leave getting a wheelchair, find a seat in the departure lounge and just walk with my crutch. My Dad was going to get us some food from the cafe while me and my Mum waited, not one single person had the common decency to offer me a seat. My crutch isn’t small, it’s big, bulky and near impossible to miss. To add insult to injury a seat in front of me became available, as I hobbled over a woman about my age ran in front of me and took it just turning the other way. Now while I may not look that sick, I am and constantly in pain, surely having a crutch is an obvious symbol that I might need to sit down more than you. My Dad did make a comment, but she just couldn’t care less.

Finally boarding the plane, anyone with pushchairs or needing assistance to board is called first. I go over and join a queue of wheelchairs/walking sticks, as I get to the front, a woman shouts the queue is over here. She’s signalling to a sea of fully abled bodied passengers in a line. She half laughs sarcastically, at which point I start panicking and questioning myself as to whether or not I need to be in that queue. Do people think I’m faking and pushing in? I start showing her my crutch, but really why is any of this anyone else’s business?

I’ve had people make comments and question me previously if I actually need my crutch because I’m young or don’t look sick enough, but this genuinely made me feel the most uncomfortable I had in a while. It was to the point I wanted to leave the queue. You wouldn’t question someone who was older, so why do you find it acceptable to question me? Just because I don’t look like the image of a sick/disabled person you incorrectly have in your mind. Disability comes in all shapes and forms, we all require different levels of assistance, please stop making us feel like we have to justify ourselves to you.

I’ve lost count of the number of times I have been asked what I’ve done to myself to injure my legs. It’s frustrating being asked by the same person on more than one occasion when you’ve explained to them you have a medical condition. Different days require different aids, I have bad and better days, I’m not any less sick for not needing my chair, maybe my pain levels are just a bit more manageable. No it’s not miraculously going away, so will you please stop asking me when I’ll be well again. I’m not too young to have this condition, it didn’t ask me for ID. I am happy to discuss my medical ailments with people to some extent, I’m always trying to raise awareness for Ehlers Danlos, but at the same time it’s my body and my business. Especially when it comes to how much I’m willing to share with you. I shouldn’t need to talk in depth to strangers, discussing my issues to get your help, understanding, a bit of compassion and human decency.

Brain fog life 🧠

As with many chronic illnesses, one of the lovely things that comes along with Ehlers Danlos is brain fog. Throw some drowsy meds in the mix and I can literally forget what I’m saying mid sentence.

The last few weeks have been particularly foggy thanks to having to increase my Gabapentin. I have a really bad back at the moment and I’m awaiting some MRI test results that may take a while. In addition to this I’ve been really suffering with nerve pain in my stomach known as Allodynia, sometimes even my clothes touching my skin physically hurts.

One of the suggestions given was to increase the Gabapentin to a higher dose. I gradually upped it over a period of two weeks until I was pretty much at the maximum dose. It all seemed fine at first until I started noticing myself staring blankly at walls in some kind of weird trance. I would be talking to my Mum and then mid sentence would have absolutely no idea what I was saying or what the entire conversation was about. Luckily due to an increase in physio and exercise, my pain levels are at a more manageable level and I’ve been able to reduce the Gabapentin back down to my original dose.

Another thing that exacerbates my brain fog is daring to leave the house and have a life. I end up with severe chronic fatigue from overdoing it, I struggle to know when I’ve been out long enough. Sometimes the fatigue and brain fog is so bad I’ll spend days afterwards in bed watching mind numbing TV. My most recent binge was new episodes of catfish. (seriously who has the energy to live a second life? I barely have enough energy for living my own)

I always have brain fog to some extent. When it’s particularly bad I’ve found I couldn’t possibly read a book without going over the same sentence about 10 times because I’m not taking it in. I can also never remember if I’ve taken my meds, my Mum has to sort them out into pill boxes for me so I don’t get mixed up.

My brain fog has made me say and do weird and wonderful things, I have thanked a cash ATM machine on more than one occasion. Quite recently I managed to put my coat on inside out and walk around the shops. It probably wouldn’t be so bad if the lining wasn’t a different colour, with all the stitching hanging out.

I think sometimes I can come across quite rude when I’m having one of my foggiest days. I can be listening to someone talk and my brain takes me off somewhere else mid serious conversation and I’ll just say something along the lines of, ‘oh that’s what I needed to do, go and brush the cat.’ It’s not that I’m not interested, my minds just floated off of it’s own accord.

The other really annoying symptom is forgetting what I’ve walked into a room for/forgetting what I’m doing in the middle of doing it. After using a lot of energy climbing the stairs, it’s really frustrating not knowing what you’ve actually climbed them for. Especially when you get back down, it comes back to you and you have to use even more of your already minuscule amount of energy on a return trip.

I may say the wrong words a lot and have no idea what you’re talking about even though I was definitely there, but I promise I’m trying to listen. It’s probably a hell of a lot more frustrating for me than it is for you, so please if you could just have a little bit of patience, that’d be great.

Things I took for granted before I was chronically sick. Number 1: shopping

I’ve always had a love for shopping, in uni I could often be found on long breaks in Liverpool city centre trying on and buying all kinds of new clothes. I used to love hitting up the sales of a weekend to find something cute with high heels for a night out or even some new gym gear.

Alright so I shouldn’t always be shopping, when I’m having a bipolar manic episode I tend to go on shopping binges and spend all my money. I have to be careful and try to figure out what mood I’m in before I begin (easier said than done). I recently spent £80 in the range on arts and crafts supplies I didn’t need and my Mum had to come with me after work to take them back.

I’ve never really been a fan of making online purchases because I can never gauge the sizing. My legs are never the right length in jumpsuits and I end up with a massive camel toe or my boobs are too big for the size of my waist. It’s always been a sending back nightmare, there’s nothing worse than companies that charge you for the privilege of making returns with their poorly made/sized items 🙄.

So recently as my health has deteriorated further and I have a lot of time on my hands, a few times I’ve thought to myself, ‘jump in the car and go for a shop.’ As you will know if you’ve read my previous posts I require a mobility aid to get around. This can be more of a hindrance than I ever imagined.

If I’m just using a regular walking stick or cane, I can get around quite easily and can use one hand to look at clothes or food I want to purchase. However, if I use a stick for long periods of time my hand, wrist and back start to ache.

I generally need my smart crutches. I took them into Liverpool with me over the weekend for the first time properly and realised how hard it is to shop with them. I can’t reach up to the higher racks without them digging into my arms. They are bulky and get in the way, I caught clothing in them while browsing and pulled things off the coat hangers without realising. It’s embarrassing and a struggle to pick them back up off the floor. I had my parents with me which kind of helped, but they obviously can’t browse everything and know what I want.

Trying on shoes is frustrating as I need to try and balance my crutches somewhere while I sit down. My bad days are especially hard as I struggle with bending down. I’ve realised wearing lace up trainers is a no go when shoe shopping, it’s too painful to keep trying to open them, I end up with a bad back and stiff and painful fingers.

This is the same for food shopping, I’ve done it both in my wheelchair and on my crutches. In my wheelchair I literally can’t see anything higher than my eye-line. With being gluten free I need to be able to reach the always high up bread and it’s impossible without having someone to help me out. On top of this I can’t push a trolley and balancing a basket on my crutch is all well and good until it gets heavy and puts my off balance.

My crutches are too bulky for my car boot and so have to go on the back seat. If someone parks too close to my car I can’t get them back in. This sends me into a bit of a stress and panic frenzy. My blue badge got refused and I’m waiting to re-apply. I’m hoping that I’ll be able to get a car with a larger boot at some point soon.

That aside, I can’t drive anywhere if I’m taking morphine or my shoulder is bad, finding someone to take me until recently has been such a difficult task. My Mum has now given up work to be my full time carer and without her I’d literally be housebound and have no freedom at the moment.

I’ll never take the little things I can actually do for granted again as you never know when they’ll be taken away.

Becoming a babe with a mobility aid

Over the last 18 months I’ve found my mobility to be deteriorating at quite a fast pace. I’ve found it really hard to accept that I now need to use mobility aids to get around.

I’ve always been one of them girls who loves to dress up, do full make up and wear the most fabulous high heels I could find. For my university graduation my parents even bought me a pair of Louboutins. Now I live in trainers and flat shoes.

I’ve never really thought of myself as a vain person though. I was forever going into lectures with unwashed hair and no make up on when my fatigue started to get the better of me.

My pains have reached new heights which means I completely rely on the help of mobility aids most days. When I first realised this, I struggled a lot with leaving the house using my stick, if I was getting a picture taken I would hide it. I felt some sort of strange unfounded guilt that I was too young for a walking stick and that I shouldn’t need it at the age of 26-28.

I worried that because I don’t need them all the time people would think I was faking it. I felt like people were looking at me if I could walk a few feet without them. Eventually I reached a ‘f**k it’ mentality in regards to using them, it’s nobody’s business but mine.

It took me a long time to realise how amazing these things are and embrace them as a part of me. I wouldn’t be able to get out half as much as I do without a mobility aid. I looked for fancy walking sticks for ages online but failed miserably. It appears disabled people can’t have much individuality or express themselves when it comes to their mobility aids (we want to feel pretty too). It’s like they’re all aimed at older people. Pretty shit but I’m sure someone will rectify this soon (I’ve seen a few companies that look as though they might soon be making them 🤞🏻).

I found one walking stick that has a glow in the dark handle and another with cats on. I have my zebra print smart crutches and most recently I’ve acquired a wheelchair.

Though I am completely confident in using mobility aids I still get the odd set back. Sometimes you hear the odd person comment stupid things like, ‘she’s too young/pretty to need that stick.’ If you could all just mind your own business people, that would be nice. Illnesses don’t discriminate on age or looks and if I want to put a pretty dress on to myself feel better, I shall.

I feel a lot more like myself now using them. I can feel beautiful with a mobility aid, you can still be disabled and sexy or cute. They’re like an extension of me that gives me so much freedom and I take one with me wherever I go! They even help me to balance doing physio and pilates around the house.

If you go down to the woods today, remember where the bloody hell you left your car.

On Sunday it was a lovely morning, not too hot for my PoTS, so I decided to go for a walk in Delamere Forest in Cheshire with my parents.

I used to adore hiking so it felt so nice to be able to go for a stroll in the fresh air and escape the four walls of my house. My joints and muscle strength has really improved due to all the pilates I had been doing, even though I was just coming out of a two week gastroparesis flare, I felt good.

My family, me and my walking stick set off about half 10, parked the car on the road and started strolling. When I got tired we stopped off at the visitors centre for a quick coffee, which we found with ease.

From here things slowly started to go downhill. We walked off thinking we were heading in the general direction of the car, we followed a route so thought we would get back straightforwardly. That was until the visitors centre and a Gruffalo statue reappeared about half an hour later and we realised we were literally walking in circles.

Me and the Gruffalo the first time round before the pain set in.

We changed direction and passed a swamp we’d never seen before and that was when I knew the situation was slowly deteriorating. My back, ankle, hips and hand were now hurting at this point from walking with my walking stick and covering too much distance. I’d spent the last two weeks like a wrapped up lemon on the couch, ‘help me’ was slowly running through my mind. Panic about my stomach also set in at this point as I’m still on a lot of laxatives and an accident in that department would have just been the icing on the tragic cake.

Me and my Dad thought the car was in opposite directions and then we somehow ended up on the main road… not the one we were actually parked on.

My legs were now weak, I was starving and my back was flaring. We walked about another 20 minutes, I technically stormed it hobbling like a woman on a mission until we got on the right road. I was by this point huffing, swearing under my breath and wishing my Mum would hurry up so we could get there quicker. I knew if I stopped it was game over, my water had also ran out and my PoTS wasn’t exactly happy with how hot I was getting. We got back to the car and I physically collapsed like a sack of spuds in the front seat.

Thanks to me accidentally overdoing it, I’m in a full blown pain flare. I have heat packs on, with a fan on me and a cooling headband on my neck. It’s so bad I’ve had to take morphine and I can barely walk with the agony in my back.

Life lesson: if you’re chronically sick, put a marker on google maps as to where you parked the car you fucking moron 😂.

Curing chronic illness boredom

Being at home all day is an actual struggle. There’s nothing worse than staring at the same four walls all day, every day. Often made even worse by people saying stupid shit like, ‘I’d love to have your life’ ‘it must be so nice to not have to get up and go to work’ etc. Fine mate, I’ll tell you what, let’s see how you feel waking up every single day in pain, feeling nauseous, being constantly tired, with stomach cramps from hell and that’s just part of it, let’s see how you get on 🙃.

Here are a few of the things I personally use as both pain distraction techniques and things to keep me busy so my minds not going insane. Focusing on something really helps me during a manic episode, it takes my mind off me wanting to self destruct.

1. Jigsaw puzzles. Sounds boring and like something that just old women do, but I absolutely love doing them. It keeps my mind active and it’s also pretty good to keep my mind from focusing on how much pain I’m in for a short while!

To increase difficulty levels get a cat. Mine loves to pull it apart.

2. Reading. Okay so I can’t always read because my mind doesn’t want to focus. I love a good book but I also love a good trashy fiction novel I don’t have to fully concentrate on. I have an array of books that’s focus level dependant (obviously once I start one I have to try and stick with it). From classics, to self help books, to the absolute bizarre.

These are a selection of my most recent purchases.

3. Painting. As you are about to see I’m no Picasso. I just find brush strokes very soothing.

Shit art all the way!

4. Sequin art. Turns out when you’re in a lot of pain sticking pins in things works wonders to take your mind off it.

Here’s one I made earlier..

5. Pilates/yoga/stretching/any exercise. I know not everyone can do a lot of exercise and I’m not advising it for everyone but honestly a little bit goes a long way for me personally. I feel so much happier, full of endorphins and like I’ve achieved something!

6. Animals. Finally if you have a pet, they can really be the best therapy. I feel like my cat can sense when I’m sick and always comes and sits with me, giving me some much needed comfort and attention. Plus they never judge when you can’t get out your blanket or your bed. She’s saved my life a few times by just being there and calming me down so for her I’ll be forever grateful 💕

Love her more than life itself.