Since the UK first went into lockdown, I’ve been really weary and cautious about the places and scenarios I put myself in. I haven’t been completely shielded, however as someone with a chronic illness I am vulnerable and ‘at risk’. I would literally only go into shops at like 8am when I knew they’d be empty. Finally, last weekend, I decided to be brave and re-introduce myself into society by going out for food on the Friday night. We visited Ego at the Punchbowl in Sefton and I must admit it really has reduced the anxiety I feel about visiting restaurants in the future. This will cover a little about Coronavirus measures and then obviously the amazing gluten free food.
Health/safety/cleanliness Before arriving at the restaurant, I must admit I had quite bad anxiety on how the new procedures would be put into place to protect customers and staff and whether or not they were being monitored and followed throughout the night. As soon as I arrived it was like a huge sigh of relief seeing one staff member completely cleaning and disinfecting both tables and chairs in between customers. The tables were spread out to a safe distance and there was a lot less loitering about as drinks were table service only, no people queuing or chatting at the bar. Drinks were delivered to the table on a clean plastic tray, you took them off their yourself, so staff aren’t leaning over you and touching the glasses and then they took the tray away. Food ordering was pretty much the same as previously, but with staff taking extra precautions staying a safe distance away from the table.
Gluten free choices Onto the good stuff, food. I must really begin by mentioning that Ego has one of the most varied gluten free menus I have seen. Don’t worry if you don’t live locally to Liverpool/Sefton, as they have a chain of restaurants scattered around the country. They are a Mediterranean style restaurant so the menu has everything ranging from pastas, to Moroccan mains, fish courses and steak.
Starter For my starter I got Chorizo Frito Al Vino. This was chorizo in red wine, garlic, rosemary and thyme. It was absolutely gorgeous, literally some of the best tasting chorizo I’ve ever had. The portion size was just right for me. It was even served with toasted gluten free bread, which I used to mop up the sauce as it was so good! A few other starters to choose from included a vegetarian goats cheese starter, chicken liver pate and they even had vegan friendly options of soup or garlic mushrooms.
Main Course This was a very tough choice for me as their are so many mains to choose from, but I went with the hanging piri-piri chicken kebab, with a side of skin on fries. I was not disappointed. The kebab contained chicken chunks, onions, courgette and peppers all skewered together and char-grilled served on a bed of salad. It was cooked to perfection with a lovely char-grilled aftertaste, would definitely recommend. Fries were nice and crispy, just how I like them. Once again the menu not only catered for gluten free, but covered gluten free vegans and vegetarians with dishes such as a vegetable paella and Moroccan falafel. If I visited again I’d definitely try a pasta dish or steak, other people’s meals coming out the kitchen looked amazing.
Dessert For dessert I went with my general go to when I see that it’s on the gluten free menu, warm chocolate brownie with vanilla ice cream. It was so rich, gooey and delicious, I feel like I could have ate another and felt sickly all night, with no regrets haha. They had a selection of desserts available on the menu including creme brulee and eton mess, both of which I love, but I’m such a chocolate fiend that nothing could sway me.
The experience overall I would say has put me at ease when it comes to dining out in these times of a post covid lockdown, ‘new normal’. The food here is absolutely worth a try as I cannot find fault in any of it. This is a restaurant I would definitely visit again and would have no issues in ordering a different meal on 3 or even 4 visits, without having to order the same thing over, as the gluten free menu is so big and varied.
First note I must add: sorry this is months late going up as it is from Feb/March but my health has recently deteriorated and I needed a break to rest and recover. My latest adventure was a cruise around the Caribbean with Marella who are part of Tui. It was my first cruise in years and I have to say that I absolutely loved it! 5 of us went, my Mum and Dad and two of their friends. I was wary at first, visiting so many places when my chronic illness could flare up at any minute. We had lots of trips planned from different ports and I didn’t want to let anyone down, especially if I didn’t have enough time to rest when we got back on the ship. Turned out I had plenty of relaxing time in between ports and of an afternoon.
So I’ll start by listing the destinations I did visit:
Boarded in Bridgetown, Barbados
St. Georges, Grenada
Castries, St. Lucia
Bridgetown, Barbados (we decided to stay here for 4 nights but decided to do a separate blog post about this hotel etc)
As always the staff in Manchester Airport could not have been more helpful in assisting me, the sunflower lanyard system, put in place to be able to identify people with hidden illnesses and disabilities, works amazingly. Meaning I don’t have to stand in long lines risking my PoTS kicking off and my hips becoming painful before I’ve even got on a plane. Upon landing in Barbados you and your suitcases are taken directly to the ship, this avoided all the usual messing about in the airport getting cases, finding transport etc, when all you want to do is get started with your holiday. The bus was on the runway near to the plane, which was great. Upon boarding you are informed that your cases will be dropped off at your cabin. This gave us time to figure out the layout of the ship, find out where everything was and to get a much needed snack and a cocktail in the Caribbean sunshine.
The ships decks are all pretty much flat meaning they were very easy for me to navigate my way around with my walking stick and limited mobility. There are a number of lifts throughout the ship to get to different floors and we never really had a problem getting one at any time of the day to change decks. Upon arrival I was pleased to find we had been assigned a room near the lift as per request on booking. The pool deck had enough space to negotiate your way through rows on sunbeds using my walking stick with ease. I cant say I found any mobility related issues on board, which I was surprised at as I had a misconception in my head that on a ship things would be more cramped together than they were. It was actually quite the opposite. It is literally like a big floating holiday resort. To add to my love of it, the explorer 2 is adults only, no offence to your children, but getting round a buffet restaurant on a walking stick with small children running around is really difficult. I don’t have the best grip strength on my plate as it is, someone knocking into me is likely to end up wearing some of my dinner haha.
Excursions I would recommend Rhum Runner 2. Probably my favoruite excursion, in St. Georges in Grenada. It started off with a shortish sail, while a steel band played Carribean music, to a lovely picturesque beach. From the time you first set sail until the time you arrive back you receive complimentary rum punch, probably not the trip for you if you don’t drink alcohol. Once you reach the beach you can get off for a couple of hours to sunbathe/swim in the sea. A member of the crew comes round a tray of rum punch, so you can have a refreshing drink whilst floating about in the sea. After this you get back on the boat to a more party atmosphere for the sail back, they had everyone up dancing and even held a limbo competition, (obviously limbo isn’t my forte) but everyone seemed to enjoy it. Probably my favourite day.
Wacky trucks in Dominica. This is another I would definitely recommend, it is great for those with limited mobility. You get to still see the island but from the ‘comfort’ an open topped 4X4. You could also swim in a waterfall from the film ‘Pirates of the Caribbean’ unfortunately I had to give that part a miss due to hip pain flaring. My Dad swam in it and said it was amazing though.
Activities onboard I recommend Mini golf, located on deck 15. It is like golf with a view, especially if the ship is docked in a port! We absolutely loved it for a laugh of an afternoon. You do have to climb a set of stairs to get to it, so while not entirely accessible to all, on a good day, I could manage.
White party. The white party night was amazing, they had a Robbie Williams tribute act on the week we were sailing. He was really good and had everyone up dancing on the pool deck and the deck above. I would suggest getting there early as to make sure you get somewhere to sit as it got extremely busy.
Silent disco. There was also a silent disco night on the pool deck which was hilarious. It was on quite late so everyone had had a couple of drinks by this point, it definitely had a good party atmosphere with a lot of laughter going on.
Board games in coffee port. If you fancy something a bit quieter, located on deck 7 in the coffee port, there are board games you can play at no extra cost. They did the best coffee on the ship, they also do specialty drinks (I personally prefer my coffee flavoured). Sometimes it’s nice to get away from the hustle and bustle of the rest of the ship for an hour or so. It was always quite quiet when we visited.
Quizzes and poolside activities. If you’re like me and you like to bask in the sun like a lizard by the pool, there’s always something going on. From Bollywood dance classes to random general knowledge quizzes over the tannoy. Never a dull moment. Sometimes I prefer to just lie there blasting music through my headphones. I couldn’t hear anything going on around me with them in, so if that’s more your thing, there’s something for everyone.
Gluten free food. Firstly I must say that the staff onboard were excellent when it came to attentiveness and ensuring you were catered for and well looked after with a dietary requirement. The restaurant manager was straight over to us if he spotted us walking into Marketplace (the buffet restaurant) to ask if there was anything in particular I needed. There were hand sanitizing stations available as you entered a new area/restaurant which was something that I found an added bonus, especially in these germ filled times. Breakfast Of a morning we ate in Marketplace and in the main restaurant depending on the time we got up. There was something to eat in both restaurants. The highlight for me in Marketplace would definitely be the gluten free pancakes. You did need to order these a day in advance with the chef or restaurant manager but they were honestly worth it. In the restaurant, I always went for the option of the omelette with gluten free toast. You could add whatever fillings you liked from a list to the omelette so it was to your taste. All gluten free options are clearly marked out on a menu card in the main restaurant so it makes it much easier to order. Lunch and snacks Of a lunchtime we tended to only visit the pool snack bar or the Marketplace restaurant, however meals are available in the main dining room. In the buffet restaurant the gluten free choices were varied, with each food item marked up as to if it contained gluten or not. I could always find something to my liking, that filled me up for the rest of the day. However on days you were just sunbathing and fancied a snack by the pool, I found to be quite difficult. The only hot food available from the snack shack was fries. Cold food wise they had a couple of salads that were GF. I had read online chicken wings were available for coeliacs, but I was disappointed when this was not the case. A food highlight for me was definitely afternoon tea in the buffet restaurant. They had a wide variety of sandwiches, biscuits and cakes, all gluten free to select yourself. It was lovely to sit out on the deck, with a cake and a cup of coffee to break the day up. Dinner time/evening meal Of an evening we generally went to the main dining room, which was separated over two floors into Latitude 53 which had your classic dining style of food, or Vista which was essentially contemporary Italian food. A gluten free menu was posted to the room each morning to select the food you wished to eat that evening. It had to be handed back in at reception once complete, first thing of a morning. The food was incredible and most nights I had three courses. In latitude 53 a lot of the dishes were local to the islands you had just visited, so it was cultural as well as being delicious. I literally have zero faults to pick with the main dining room as it was spacious, beautiful and spread over 2 floors. The other restaurant we frequented on more than one occasion was Nonna’s Italian. It served pizza and pasta dishes, both available as a gluten free option. This was a great restaurant for me as you could personalize the dishes to your taste by selecting your own ingredients if you wanted. I am a massive pizza fan so had a pizza piled high with my own chosen toppings on more than one occasion. One final point is that there are other restaurants on board available, that are not included in the price. However we personally didn’t feel the need to visit them as their was always something I wanted to try in the previously mentioned restaurants. The gluten free is also clearly marked out on these menus to check out before you book into them.
On a final note, I would definitely recommend a cruise to anyone, young or old. I am not the best person on boats for sea sickness usually but I had no problem at all with this once onboard the ship as you could barely feel it moving. If you are worried about getting about on a ship with a disability or chronic illness, I would say they have it all covered. I found no problems at all getting about with limited mobility and I know there are specially adapted cabins available at request for wheelchair users and those with less mobility than myself. Finally as you have seen being gluten free or having dietary requirements is more than catered for on board and I did not have a single issue food wise other than a lack of poolside snacks, more of a personal preference thing though than anything else.
I loved the Marella Explorer 2 for my first cruising experience and I will definitely be going cruising again in the near future!
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 💕