Coping with chronic & mental illness oh and a cat…
Hi, I’m Chloe, I’m 28 and my life’s not exactly how I thought I would be at this age. I have a connective tissue disorder, Ehlers Danlos syndrome (EDS). My joints dislocate a lot, I have chronic pain, fatigue and my digestive system is a mess.
This is just a page for me to rant about my health problems both physical and mental, trying my best to make light and laugh at the tragic situations they get me into.
Ingredients 1 Large white onion cut into rings (I found batter sticks better to white than red onions) Vegetable oil 85g GF plain flour 1Tsp baking powder 1/2 Tsp salt 1/4 Tsp chilli powder 1 Tsp cajun seasoning 50ml almond milk 50ml water 1 Tbsp cornflour
Method Heat up enough oil in a pan to completely cover onions when dropped in. Mix together flour, baking powder, salt, chilli powder and cajun seasoning in a bowl. Add almond milk and water to form a thick batter that sticks to the back of a spoon. Put cornflour in a food bag with sliced onion and shake until onion gets a slight coating on. Shake off any excess flour. Dip the coated onions in the batter until generously coated. Add coated onions to hot oil and fry until crispy (depending on pan size you might need to repeat this process more than once until all onions are done). Drain off the excess oil, I used kitchen paper. Serve as a starter, side dish or a snack and enjoy!
Ingredients 300g/2 boxes of gluten free HobNobs or similar 175g butter/dairy free alternative 400g of condensed milk 3 egg yolks 4 limes 300ml of dairy free double cream (trying to reduce the lactose levels but normal cream is fine) 2Tbsp of icing sugar
Method Heat the oven to 160*C fan/140*c Smash up the two packets of HobNobs until they are crumbs. Melt the butter until it is liquid either in a microwave or a pan. Add the butter to the crumbs, making a sticky mixture. Put the mix into a loose based tart tin, making sure you fully line the base and sides. Bake in the oven for 12 minutes, remove and cool. I cooled mine in the fridge. While base is cooling put egg yolks in a bowl and whisk until they are thicker and foamy. About 3-4 minutes should be enough. Add the condensed milk and whisk for a further 3 minutes. While whisking juice and zest the four limes. These should slowly be added to the mixture as the whisk runs for a further 4 minutes. Pour the mixture into the now cooled base, put back in the oven for 15 minutes. Cool and then chill in the fridge for approximately 5 hours or more. When ready to serve whip up the double cream and icing sugar with a whisk on a high speed. Once thick enough consistency, use to decorate top of tart. Remove from base, slice, serve and enjoy!!
Ingredients For meringue: 300g caster sugar 6 egg whites For topping: 400g of strawberries 150g of dairy free white chocolate 50g of dark chocolate 300ml of dairy free double cream
Method Preheat oven to 140*C Cover two baking trays with grease proof paper. In a mixing bowl whisk egg whites for about 4/5 minutes until a white fluffy foam is achieved. Gradually mix in the caster sugar about a tablespoon at a time until a white glossy consistency is achieved that forms stiff peaks when the whisk is removed. Split the mixture between the two trays, shaping into disks, with a thicker outer rim so they can be filled. Bake for 45 minutes – an hour. Bake until the meringue solidifies and is crispy on the outside, be careful it doesn’t burn. Allow both meringue disks to cool on a wire rack. Once cool, take one disk, top with half the topping ingredients; cream, strawberries, and melted white and dark chocolate. Then top this with the second meringue disk and top with the remainder of the toppings and serve immediately! Enjoy!
Ingredients 50g dairy free spread 95g GF plain flour 200ml water 3 eggs 3 tsp caster sugar Pinch of salt 110g of dark chocolate 400g of dairy free double cream (whipped)
Method Preheat oven to 200*C. Line baking tray with grease proof paper and grease. Sift flour onto a plate with sugar and a pinch of salt. Crack eggs into a bowl and beat. Melt dairy free spread on a low/medium heat and add the water. Bring pan to the boil. Remove from heat and add the flour mix, stirring together at a very fast pace. Return to heat and stir vigorously for 30 seconds until a dough like consistency. Remove from heat and allow to cool slightly and add the eggs, ensure the mixture is cool enough or you will essentially cook ans scramble the eggs. This will form a thick smooth paste. Pipe or use two small spoons to make a small ball of dough on the baking paper about 5cm in diameter. Repeat making even sized balls, spread out on baking paper, until all dough is used. *if dough is not thick enough, you can use baking tray for cakes/muffins to pipe the mixture into* Bake for 20-25 minutes until golden brown. Remove from oven and cool on a wire rack. Prick each profiterole with a thin skewer to allow steam to escape. Wait until chilled. Whip cream with a whisk until thick consistency achieved, can add icing sugar to sweeten. Pipe cream to fill each profiterole. Melt the dark chocolate on a plate over boiling water or more easily in a microwave but be careful not to burn it. Dip each profiterole into it. I also added edible glitter for extra decoration! Once chocolate is set, serve and enjoy!!
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!
Method Preheat the oven to 180*C/160*C fan. Add all the above ingredients in a bowl, sifting the flour in and then mix with an electric whisk or with the paddle attachment of a stand food mixer on a medium speed for 2-4 minutes. Make sure ingredients are completely combined and you have a smooth consistency of the mixture. Separate mixture out evenly into paper cake cases. Bake for 15-20 mins in the center of the oven until golden brown and they feel spongy to the touch. Leave to cool for 30 mins and then decorate as you like.
Decoration I decorated these cakes using Betty Crocker Vanilla buttercream icing and some sugar paper unicorns I got from B&M, but feel free to decorate yours however you like!
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.
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.
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.
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.