Gran Canaria, Meloneras

I’ve recently just got back from a family holiday to Gran Canaria which was amazing but was obviously not without it’s problems. I highly recommend going with family/friends/partners who fully understand your illness in depth and what can go wrong. There’s nothing worse than being unwell in a foreign country and having no one to help you out. I always end up taking at least one trip to the pharmacy or doctor, because I’m fucking tragic, this time it was for pain patches which are literally 10 times better than anything you’d get over the counter here. I meant to bring some home with me but left it last minute and the pharmacy was closed.

Flying is never great when you have joint problems as being cramped in a small space unable to move about, for me personally, causes a lot of issues. It’s a 4 hour flight so for starters there’s the pain side of things. My hips are bad and holding them still for too long or sitting in the wrong position causes so much pain, that by the time I get off the plane I’m struggling to walk on my own without my stick or a crutch. We paid for extra legroom seats so I could move about a bit and stretch out. This is great, however, these seats are usually near to an emergency exit and if they see you have reduced mobility they won’t allow you to sit there. On the way out we had no issues, but on check in on the return flight they spotted my crutches and said we may be asked to move. This resulted in me stealthily putting the crutches as small as they would go and sneaking them on. We were walking as normally as possible for three people walking too close together with the bloody things wedged between us. Luckily it worked.

Apparently if you can’t eat gluten, on some planes, you’re just expected to starve for the duration of the flight, so I strongly advise taking your own food or eating the lovely overpriced food in the airport. I’m not sure with other airlines but all Tui had was a tiny bag of popcorn, thanks guys! If you’re like me and need daily laxatives I don’t advise taking them the day before or the same day you fly as no one wants to be fighting to get in one of them small cubicles in a hurry, or stinking out half the plane haha. Sometimes it literally just can’t be helped, my bowel randomly kicks off, but I always try my best to reduce the risk of that situation. For my irrigation system the hospital issued me with it’s own ‘passport’ to make sure we got it through without a problem, also tablets kept in the boxes so they can see what it is you’re taking and you don’t look like a smuggler. I clearly look like one anyway as I always get my hands and hips swabbed for no reason haha.

It seemed the best idea to get a taxi to the hotel from the airport avoiding sitting for hours on one of them stupid transfer coaches that wait for what seems like an eternity for other flights to land.

We chose the resort of Melanores in Gran Canaria as we’ve been there before in a different hotel. The ground is flat and well paved which is great so I can get around easily and if I needed a wheelchair we still could have got out to the beach, the restaurants and the bars. We stayed in the Lopesan Baobab resort where they honestly couldn’t have done more for us. They gave me a full (random) breakfast and had a full gluten free menu for me to pick my evening meal from that changed daily. I live for pizza and that was always on there with whatever toppings you wanted. They always gave you far too much but it was so good! The only down side was that a lot of the sunbeds are on gravely sand, so they’re a bit tricky to get to with reduced mobility but someone does come around to take drinks orders so once you’re settled on a sunbed, there’s not much need to move.

I actually took a trip to the waterpark which I must admit I was slightly shitting myself going to incase I popped a joint or just landed at the bottom of a slide in a destroyed heap. I found the slides you sit in an inflatable of any type were fine but I took all the skin off my elbow on one without and I could feel my joints slowly taking a beating. Even they did a gluten free hotdog and there were cats everywhere which always brightens up my day.

Aqualand waterpark

The sun is a great healer of all things pain related I find and I literally wanted to be left there to start a new life in the sun. My PoTS can be a bit of a pain, but I make sure I drink water with a hydration tab in (pictured below) and at least 2 bottles of water a day to stay hydrated, especially when consuming a lot of alcohol. Otherwise I’m dizzy 24/7. Some tablets can cause increased sun exposure which I learnt the hard way the year before. Only putting factor 20 on lead to me burning the whole of the back of my body. It blistered from my shoulders to my legs and I ended up full of scabs with me running into shady patches for the rest of the week looking a right dick, even the sun on my clothes absolutely killed.

Hydration tabs

I had the most amazing time and would recommend there to anyone! We went out almost every night and though I was on my walking stick most of the time it was so easy to get around. If I just said ‘sin gluten’ in 90% of the places they could cater for me and were completely clued up on allergies/intolerances. The pool was huge so I managed a swim most days which kept up my exercise regime and my mood.

Dating with an invisible, chronic illness

Dating in this day and age is hard enough without dealing with a chronic and mental illness. I’m chronically single to go along with it. Not that I haven’t been on a few dates, but lack of understanding because my illness is invisible for the most part fucking sucks. Warning this contains a fair bit of bowel talk so now would be a time to stop reading if it’s too much information for you.

I play down my symptoms a lot because I feel shame I really shouldn’t feel or I’ll pretend I’m fine and not tell them too much info about my illness because it’s the first time meeting them. (probably stupidly a bit scared they’ll think I’m a trainwreck and steer clear)

So let’s start with an example date:

I make a plan to meet someone, I have to plan how I’m getting there. Can I drive or am I on meds that forbid it? Am I well enough to get the train? Do I need my crutches? Should I shed out for a taxi? I’ve previously had an incident on the train where I’ve really needed to go the loo and the boy didn’t believe I needed to get off the train and it resulted in an accident with me legging it home from the station, greaaat.

So say I’ve got there and we go for food. I can’t have gluten so is the place gluten free safe? Been on a date and accidentally ended up with gluten in my food, swelled up like a balloon and looked six months pregnant. Couldn’t stop vomiting and had to rush home. Sometimes my gastroparesis flares up, this means I can’t even eat at all, so let’s do something else.

Instead maybe do an activity. So instead of me being completely honest I sometimes end up in situations doing activities I really shouldn’t be doing. Let’s go rock climbing and bamm I’ve dislocated a shoulder or I’m just in bed for the next few days with pain and fatigue. Sometimes it’s worth it, but not when you’ve just met someone. I do love doing stuff like this, it just needs a bit of planning. Probably not go hiking either.

Drinks. Well yes we’ll just have a couple. There’s a slight problem with this in the fact it can trigger mania in my bipolar and I’ll start refusing to stop drinking and go home. Best case scenario, we have the best night full of laughter and drunkeness, worst case scenario, I run off somewhere with a head full of mad ideas, they leave me to it, put myself in danger and my Mum has to come and fetch me hahaha. I’ve told boys before about this and they’ve bought me too many drinks anyway. I don’t have the capacity to say no, as it always seems a great idea to me.

So if I’ve been dating someone a while and they want me to stay over.. For starters we have the issue of my medication, real problem if I don’t have it with me. I need to take my meds regularly for pain, my stomach, my head, my bowel. This is just a days medication:

Then we move onto my bowel. It’s slow and doesn’t move on it’s own. I take tablets for this that are included in that photo but I also have the hell that is my irrigation system. I have to use this once a day to manually get my poo out haha. There is no way I’m taking this bad boy out with me:

Obviously I’m not saying it’s impossible, but dating was so much easier before all this came along. It makes me miss the simplicity of my old life and realise the concerns I used to have are completely irrelevant and menial in comparison. I know I’ll get myself back out there one day but jeez it’s hard to be completely honest to strangers and guess what their reaction will be.

I’m well aware there’s someone out there who’ll completely accept me, but it’s just weeding through the ones that don’t understand the fact I’m too tired some days to go out. That I can’t do everything they can do, even if I look like I can. Just because you can’t see my illness doesn’t mean it’s not there and I’m not sat in pain, I’ve just got really good at faking being fine.

Unfounded doubts I have about my chronic illness…

Living with a chronic condition is hard most of the time, even harder when for years doctors have doubted you and told you things like, ‘it’s all in your head.’ Coping day to day is a struggle, without the added pressure and annoyance of people saying things like:

‘When will you be well enough to go back to work?’ ‘It can’t be that bad.’ ‘People have it worse.’ ‘Have you tried yoga.’ ‘Eat some kale.’

I’ve comprised a list of doubts I have within myself day to day, that I can honestly say are complete nonsense. I think it’s a way of somehow beating myself up for being sick and needing to take time out for myself. Going from being such an active person to being stuck in the house a lot of the time is still taking a lot of adjustment and I’m constantly questioning myself (even though I haaaate being home all day).

  1. Am I actually as sick as I think I am?

The answer to this is yes. I sometimes sit and overthink every little thing that happens to me illness wise. I will analyse every symptom and question if it’s as bad as I think it is. I question whether I’m being weak and if anyone else would cope with it better. I’ve popped out a shoulder in my sleep and been like ‘have I somehow done this to myself’. The answers no, I take a hell of a lot of shit from my illness and my body is constantly falling apart, there’s nothing I can physically do about it.

2. Would my symptoms improve if I had a better diet?

It wouldn’t be a normal day without someone asking me this question, it’s a very valid point that I don’t mind explaining but it does make me doubt myself. Half of the time I can’t eat and I’m on a liquid nutrition based diet. I don’t pretend in any way that I eat remotely healthy, sometimes when my stomach is bad for some weird reason the only thing I can eat without puking is a McDonald’s burger with no bun. I have a very restricted diet, with no gluten, no wheat and minimal dairy. I’m on a low histamine diet which is absolute hell, avoiding like 50 things. In terms of eating more veg the answer is a strong no from me, I used to love some veg, but I can’t eat much of it now as I don’t digest it. So unless I want to be shitting whole chunks of pepper for a day I think I’ll give it a miss.

3. Am I actually well enough to go to work?

Sometimes managing a full day out the house raises this question in my mind. I walked around Cheshire Oaks outlet village for several hours the other day and managed to go for a meal after it. This is the first time in a while I’ve been able to do this, so would this mean I could manage a day in work? Well, since then I’ve been back on my crutches, barely mobile and spent a lot of time in bed catching up on game of thrones. There is no way I’d be able to do two consecutive days at anything. It is so so frustrating when people make you feel like you’re some sort of lazy scrounger. I loved the job I was doing and studying my post graduate diploma, so why the hell would I choose to be home all day bored and hungry. STOP DOUBTING YOURSELF CHLOE.

4. Should I be doing more exercise?

I swim a lot when I can, but there’s an issue with having bipolar for me and doing exercise. Last week I swam at least 70 lengths 3 times after not swimming for months. I get too into it when I’m manic and I can’t stop pushing myself too far because I am convinced it will take my energy away and help me calm. Having both a chronic and a mental illness makes life so hard for me and my mind and body are never in sync with tiredness. I have chronic fatigue which often makes it a struggle to even get up and get dressed, sometimes that’s enough of a challenge without forcing myself to get up and overdo it.

5. Do I need all this medication?

This is one of the things I question the most, part of this is because of the way chronic pain patients often get treated. I worry about taking morphine because it’s addictive and my GP surgery have tried to take it off me a few times. This means I will literally sit there in absolute agony or take ibuprofen which really aggravates my stomach before I reach for proper pain relief. I also wonder whether or not I actually need all my daily medications. Thinking about this logically, they have been prescribed to me for a bloody reason. I’ve tried stopping tablets myself and ended much worse off. So really stop being an idiot and listen to the doctor is my message to myself here.

Overall I think I need to be kinder to myself and have more understanding when I’m incapable of doing the things I used to. I’m trying my best and that’s literally enough. Be kind to sick people we’re doing what we can.

For the love of swimming, pilates and physio

From a young age I’ve always been quite an active sporty person, give or take a few things. PE in school in the cold outside was a personal hate of mine, mainly because everything hurt for no reason but I never understood why or that no one else felt like their joints were on fire as they slowly turned blue across the hands. I swam most nights after school and competed at weekends until the age of 14 when I dislocated a shoulder boxing… I went on to find boys and alcohol.

Since my illness has deteriorated and I can no longer run 5K and 10K four times a week I’ve rediscovered my love of swimming. Swimming is a good form of exercise as it does not put too much strain and pressure on the joints, plus sometimes it even helps me to click them back into position.

For me, I personally think I’m quite a decent swimmer. When I’m swimming I feel normal for a change, like I can fully do something the same as everyone else. I’ve been asked why I don’t compete anymore as a disability swimmer but my illness isn’t covered by a specific category and I could no way put in the amount of work it takes. After a swim I always feel great, it lifts my mood and helps clear my head.

I do reformer pilates once a week usually with a trained physio in a class with other people who also suffer with joint issues. I absolutely love it as I feel like I’m flying on the reformer and again it’s something I can keep up at. Physio is painful don’t get me wrong but at least this way I can enjoy it and have a laugh with other people about our problems.

I wish I could exercise all the time as it makes me feel amazing but the truth is I can’t. These last few weeks have been tough on my health and my fitness has taken a tumble. I’ve been non-stop vomiting and have excruciating back pain. Now when I get back it’s like starting all over again because I’ve lost muscle mass.

I love going hiking and walking when my pain levels are low, especially on holidays. For some reason when I’m abroad I seem to be in a lot less pain once I’ve gotten over the flight. I love to go exploring places and climbing up stuff where I can. Walking is one of the things I get most upset when I’m unable to do, yeah my crutches are great but I feel like I’m missing out on seeing the world sometimes and it bloody sucks.

Seeing the funny side..

Right, introduction time. I’m Chloe, I’m 28 and live in Liverpool in the UK. Over the last few years my life has changed quite drastically, I went from normal, slightly tired, party girl, uni student who just got sick a lot, to spending 70% of my life in a blanket on the couch. 18 months ago I was diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS for short).

I really struggle with my illness most days, it takes a toll on me mentally as well as physically, I suffer with bipolar/mood disorder alongside this, yay. I’ve written this blog to help myself to see the funny, lighthearted side of life with a chronic & mental illness. I’ll be sharing my life alongside embarassing and funny moments that you may or may not relate to, chronic illness or not.

So hEDS. It’s a relatively rare genetic condition that causes issues with connective tissues. Unfortunately this isn’t just in the joints as you might originally think (just the joints would be enough), it also effects my internal tissues too. I have a lot of problems with my bowel which has now been classified as functional bowel disorder/gastroparesis.

It’s an invisible illness so a lot of the time my sickness and pain isn’t visible on the outside. We women also have the wonders of make up to aid this, so don’t be easily fooled. Having my crutches often makes it more obvious, but that limp isn’t the full picture.

I have a chronic illness in this photo
and I have a chronic illness in this photo

As you may imagine with a bowel disorder along comes some pretty grim stories.. I’m probably not for you if you’re easily offended. I’m a fan of a good unhealthy coping mechanism too, alcohol features heavily in these stories, but more about that in other posts.

My cat will definitely be a focal point in a lot of posts as it’s me and her against the world. This is me anyway, if my posts make another person other than myself laugh, then I’m happy with that.