I’ve decided to share with you some of my simple, easy to follow gluten free and almost always dairy free recipes. (I will also be trying to add in some vegan alternatives to egg where possible) I try to only use basic ingredients that are readily available in local supermarkets, using mainly GF plain and GF self raising flour, as I know a lot of people don’t have in or struggle to get hold of other weird and wonderful varieties. I absolutely love both cooking and baking and it has been a big part of my life over the last few years.
As I struggle a lot with standing around and bending over due to my chronic illness, I thought I’d also add in a few tips for those who, like me, struggle with basic day to day tasks.
I try to bake a couple of times a week (illness dependent) and keep the tasks and processes involved to a minimum. My first handy tip is definitely to keep a chair/stool/anything that you can sit down on handy. If it’s high enough to still reach the work surfaces it’s an added bonus. I spend a lot of my time sitting down and resting or actually weighing out my ingredients from my stool. If near a plug, I can even plug in my heated back pad.
For mixing my ingredients together, my Mum and Dad bought me an amazing stand food mixer for Christmas (Kenwood multi one) that literally does everything. From mixing my cakes, chopping up veg and even grating cheese. It has made my life when baking 100% easier. These are quite pricey so if that isn’t an option for you, I would definitely recommend an electric hand held whisk/mixer which I previously used.
Finally there are also all kinds of cool gadgets out there you can get to help you in the kitchen such as adapted knives, tools with better grips on and things to help out with cake decorating. I use cake tins that have removable bases, so it’s easier to get the baked cake out without having to tip it as this can be difficult, especially if heavy. My last little saving grace came around because I personally struggle using a piping bag as my fingers often get stiff and sore. I bought myself a solid plastic desert decorator from Hobbycraft in the sale, you only need to push a button down on the top to pipe the icing out. It’s saved my hands from so much unnecessary pain.
These are all my little tips and tricks to help you out in the kitchen. I hope they’ve been helpful and happy baking!
Living with Ehlers Danlos is never really easy, for me it involves a lot of different aches and pains. This can be anything from stomach pain, to joint pain, to non specific widespread chronic pain and anything in between. I try to avoid heavy opioid painkillers like tramadol and morphine as best I can for a few reasons. Firstly they make me terribly drowsy and unable to concentrate, preventing me being able to drive and taking away some of my independence. Secondly they slow down my bowel even more than usual and can increase my nausea. Last but not least they are addictive, my body gets used to them and after a while they don’t work anymore but my body is convinced they’re still doing something. This is not me saying don’t take them or passing any judgement, it’s just what I’ve found in my own case. Plus I still use them if I dislocate a joint or in any other short term extreme pain cases. This means I’ve had to find alternative treatments, therapies and remedies to get me through.
Heat pads etc My main lifesaver recently has been using a variety of different heat pads, wraps and water bottles depending on the location of the pain. I have two different heat wraps; a shorter one that can either cover my lower back or stomach and then a full back one that goes right up to my neck. They plug into the wall which unfortunately means you can’t walk around in them, however they do stay warm for a long time and you can just velcro yourself in and out when you need to move. The full back one I got in Lidl for £14.99 which was quite a bargain. I find it a bit more uncomfortable to sit around in than the smaller one, but if my whole backs aching it’s much more effective. As I can’t really go to bed plugged into the wall I have a standard hot water bottle I use on my stomach when things are bad. It’s in a tigger teddy cover to prevent me burning myself, though most of the time I feel like I’d be better just boiling my stomach alive the pain is that severe.
Lotions and potions I think I’ve pretty much tried every single pain relief cream and gel that is out there, everyone is different and reacts differently to them, but these I’ve found are the most effective for me personally. 1. Tiger Balm – available from most pharmacies and some super markets. There are a few varieties but I use the red ointment. It is a natural pain relief remedy made up of camphor, menthol and other ingredients used to help treat muscle aches and pains. Not a miracle worker but I find it works a lot better than the other natural, over the counter balms out there. 2. Biofreezeor deep freeze. Alternating between hot and cold treatments for pain is supposed to be more effective than just using one alone. In combination with applying heat, this gel works to cool and soothe aches. 3. Deep Heat spray – the opposite of the biofreeze. It warms up the painful area, however, it really stings my skin after a few applications. If you have sensitive skin it might not be for you. 4. Volterol – I find this only really works well on my shoulder. It comes in different strengths so I always ask the pharmacist for the higher one. 5. Nurofen medicated plasters – these are ibuprofen containing pain patches. As my stomach can’t handle NSAID’s such as ibuprofen, I find these a stomach safer alternative. Only downside is that they can only be worn for a few days at a time. They also can’t be used in combination with the volterol so I tend to alternate.
Box of braces Depending on the joint that is in pain, I can be 90% sure I have a brace to hold it in place and help it heal without me hurting it every time I move. From ankle to shoulder I’m pretty much covered. If I don’t have a brace for it there’s always kinesiology tape to strap it up, this is usually saved for back and hip pain/injuries.
Tens machine The tens machine is a small battery operated device that sends electrical impulses through small sticky pads (electrodes) that you attach to your skin in the painful area. You can increase and decrease the frequency to different amounts to find what works for you. The tens machine can vary with the number of sticky pads, mine has four. I’m not 100% sure how they work but according to the internet they interupt and reduce the pain signals travelling to the brain and spinal cord, reducing the amount of pain you feel. It does tingle and feel funny on your skin but it definitely does something to reduce pain levels in me.
I wouldn’t say any of these items work miracles, but if they can each reduce my pains by 5% that’s 5-25% less pain. This may not sound like a massive amount but with a combination of all the above I can really get on with my day so much better. If it saves me from having to take my morphine and be a zombie, I’m pretty happy.
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.
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.
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.
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.
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.
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 😂.
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 💕
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.
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.
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 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.