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.

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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.

Holidaying with Ehlers Danlos

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.