Wednesday, 15 July 2020

Shoes for People With Disabilities and Orthotics Wearers


Fitflop, Clarks Birkenstock, Hotter, Orthopedic, disabled, shoes, orthotics
Clockwise: Hotter 'Daisy' Shoes in Coral, Clarks 'Un Karely Sun' Sandals in Yellow Nubuck, Birkenstock 'Santa Ana' Nubuck Leather Shoes in Black, Fitflop 'Skandi' Waterproof Ankle Boots. 


Over my lifetime I have worn a number of different orthotics/leg braces and finding shoes has always been a stressful experience. To say 'limited options' is an understatement. Finding a pair takes a lot of research, trying on, ordering shoes off the slight chance they might fit and then sending back immediately. Even then I usually come up empty handed (or footed?). It can be hard to give or take advice on finding shoes to fit when you are wearing orthotics or leg braces. There are so many different kinds, everyones feet are different, we all have different needs/priorities not to mention actually liking the look of what you are wearing.

Whilst I can't say that I have a great deal of luck in finding shoes, I sure do have a lot of experience. So for anyone who is struggling here are a few places where your chances of finding something will at least be optimised! 


Fitflop

Fitflop are the main place I go to buy shoes and have for years. Designed to be ergonomic without sacrificing aesthetic, I have consistently found they are the best shoes for me. The cushioning impact of the Microwobble board soles has really helped my joints over the years, as well as improving my gait a little. Many of the styles have had removable insoles giving a little more space for any inserts or orthotics. Whilst not perfect, they have felt like the most 'normal' shoes I have ever been able to wear. Whilst I try to reject the ableist associations of specialist shoes being 'frumpy' it is still frustrating to be a young women unable to engage in this aspect of fashion in the same way as able bodied people. Whilst there styles are getting more diverse and sadly over the years I have had less luck finding suitable shoes, it is still one of the better companies for finding more accessible shoes. They can be a little on the pricier side generally (although not in comparison to many specialist shoe brands) but they always seem to have a sale on and offer pretty good discounts for first time shoppers. This month they are also donating 10% of the purchase price of their shoes to the charity Beauty Banks, who work to eliminate hygiene poverty.  


Hotter shoes are another company that offer a wide range of shoes suitable for people who struggle to find suitable footwear. They offer a wide range of fits and styles and the staff in their shops are very helpful. Not all of their options are for me but thats true of any brand! If you have a dive into their website you can find some really nice options that are in line with current highstreet trends and they offer standard, wide and slim fit on their shoes which is really helpful! When looking at the product details section on a selected shoe it also tells you if they have a removable insole which is something I find particularly useful! 


Clarks have been a brand I have worn since I was a child and were always one of the few place I could find shoes. For a long time my association with Clarks and school shoes (just me?) made me not really engage with them but in recent years I have noticed they make some really good contemporary style. Clarks has a range of shoes called Ortholite, that are designed with a cushioned footbed (great for anyone with bad joints or walking triggered pain conditions) and their website also lists whether they have removable insoles. 


Birkenstocks are famous for their classic two strap sandals and how comfortable they are, with a particular resurgence in recent years. I haven't has much luck with their classic style personally but they also do a number of different styles which feature their cork-latex footbed/sole. Many of their shoes also feature a removable footbed and as the brand is focussed on comfort can be a good place to look for shoes suitable for orthotics wearers. 


Have you tried any of these brands or have any recommendations of your own?
Let me know in the comments!!








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Wednesday, 1 July 2020

Mario Badescu: Best Products for Oily Skin


Mario Badescu Oily Skin Acne Products Drying Lotion Oil Free Moisturiser Rosewater Facial Spray aloe Enzyme Cleansing Gel

Mario Badescu is a brand I have tried quite a few products from before. They are affordable and easily available, both online and on the highstreet. However, my skin has definitely gotten along with certain products better than others. I have quite oily skin and suffer with fairly bad cystic acne, my skin is also quite red and relatively sensitive, meaning finding products that suit my skin is not an easy task. 

About a year ago I started using the Enzyme Cleaning Gel because although my skin needs quite a bit of exfoliation, I was finding specific exfoliators too harsh. I realised that instead of a harsher treatment product (i.e one I would use once or twice a week) I needed to incorporate something much gentler but that I could use every day. I had previously had a sample of the Enzyme Cleansing Gel and whilst I liked it, there wasn't really enough to see significant benefit. However, having gone back to it and bought a full sized bottle, over the past year I have really noticed a long term difference in the quality of my skin. Firstly it is much smoother, to the extent that it is visibly noticeable and my foundation generally applies much more evenly. Secondly, I have also seen a small reduction in the amount of acne I have been getting. I have also noticed a significant reduction in the size of any clogged pores that tend to gather around my nose. Unfortunately I think my acne is hormonally related so no product is going to to cure it but I do believe through the gentle but increased exfoliation it has contributed to a reduction in the amount of cysts that have been able to form. 

In order to tackle the acne that does still push its way to the front, I have been using the legendary Drying Lotion, which really does live up to the hype. I don't need to sing its praises too much because its efficacy is hardly a secret amongst skincare enthusiasts but it really is worth trying if you haven't. It's recommended to use it at night and generally reduces the size of my cysts overnight, if not completely shrink them. Although it contains Salicylic Acid, which is a common acne fighting ingredient, I think it is the Sulphur and Zinc combo that really does the job. Coupled with the Enzyme Cleansing Gel my skin is the clearest it's been in about a decade! 

After cleaning, I then use the Facial Spray with Aloe, Herbs and Rosewater, both very soothing calming ingredients for skin and I notice a little less redness after application as well as a bit more hydration. I have used straight Rosewater on my skin for years and made a few of my own toners before using it as a base as it is a very effective natural ingredient for redness. I will admit that if my bank account is a little empty this is the product out of the four listed that I will skip if needed, but it is pretty affordable and does keep my skin a bit more hydrated and soothed. 

Whilst the other three products listed here I have heard a lot about before, I have never really heard much about Mario Badescu's moisturisers. Trying to find a moisturiser for oily skin is always challenge and I have never really had much luck with finding one. However, considering I hadn't heard much about it before, Mario Badescu's Oil Free Moisturiser is really great. It is one of the few I have found that doesn't break me out or irritate my skin but still gives just enough to keep my skin in good condition. It is quite a light, thin formula but it balances the need for moisture (because it's still super important for oily skin) without being too heavy to absorb fully. I would definitely recommend giving it a go if, like me, you have always struggled to find a moisturiser you get along with. 


I hope this was helpful oily skin friends! I
f you try any of these products let me know how you get on!



 









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Friday, 22 May 2020

The Best True Crime Podcasts of All Time.


The Best True Crime Podcasts of All Time. 

Criminal - Criminal is one of my favourite podcasts of all time. Each episode is about a different, interesting occurrence that is either criminal in nature or relates to criminality. Its a broad scope but it allows for the most interesting stories to be told. Every episode is interesting, well researched and informative. The host Phoebe Judge, has the most soothing voice I have personally ever heard and manages to get the best of every case. 


Someone Knows Something - Someone Knows Something has just recently come back for another season and I'm very excited. SKS is one of my favourite of the bunch not only because it covers very interesting cases but also because of the production value. David Ridgen, the creator, is such a great story teller and really has the ability to transport you to the environments he is examining in an almost hypnotic way. Combine this with true crime and you have a surreal but seductive combination. 


Let’s Go to Court - Let's Go To Court has been going for a few years now but I have only just started listening over the past few months and already sailed through most of the back catalogue. It tells the stories of the interesting, ridiculous, funny and down right ludicrous court cases that have seen their way through the U.S justice system. The hosts, Brandi Egan and Kristin Caruso are hilarious and always manage to inject humour without overshadowing the cases involved. I love listening whilst doing household chores as it makes the time fly by. 


Death in Ice Valley - Death in Ice Valley investigates the very famous case of The Isdal Woman, an unidentified person whose body was found in 1970 in Isdalen in Bergen, Norway. There are many strange circumstances surrounding her death, including a clear effort to hide her identity, which has led many to speculate wildly about her death and perhaps more importantly her life. Death in Ice Valley conducts a thorough investigation into the circumstances surrounding the Isdal Woman whilst cultivating an almost Twin Peaks aura of calm and serenity amongst the chaos. Highly enjoyable, strangely soothing. 


The Shrink Next Door - The Shrink Next Door is, at first glance, one of the outliers on this list as it isn't immediately clear what crime has taken place. It documents one mans relationship with his therapist and how it drastically changes his life and ultimately his own sense of self. It's difficult to describe without giving too much away but if you want an example of a master manipulator playing the long game, this is it. 


Lost in Larrimah - Lost in Larrimah is another one that is a bit of an outlier on this list but it really is a wonderful podcast. It sets out aiming to investigate the disappearance of a man from a rural (and I mean rural) Australian community but becomes so much more than what it starts out as. Part true crime, part psychological delve into the paranoia, jealousy and cabin fever that can set in when you are truly a thousand miles away from civilisation and everyone in town hates each other.  


Your Own Backyard - Your Own Backyard is another relatively new podcast by Chris Lambert, who seemingly with few resources (sorry Chris if that's not right) carries out a great investigation into the disappearance of Kristin Smart, a student from California Polytechnic State University, who went missing in 1996. It's officially unsolved but Lambert lays out a very reasonable, convincing case that the culprit is in fact known.


Accused - Accused is a podcast put out by the folks at the Cincinnati Enquirer, examining cases that officially are solved but there are clearly red flags. With podcasting having a lot of amateur and armchair investigators (not knocking them, many have done great work) its refreshing to see a newspaper putting the time and resources into good old fashioned investigative journalism, especially in such an innovative medium. The cases on Accused are always investigated very well and it feels almost like a behind the scenes look at investigative journalism. 


Hide and Seek - Hide and Seek explores the disappearance of Nancy Moyer, a mother from Tenino, Washington who has not been seen since 2009. Her disappearance was very out of character as she was a dedicated parent, however she was recently divorced and dating again meaning her social circle had widened and her family wasn't aware of all of her new friends. The case has recently seen some activity due to the podcast so give it a listen. 


The Shocking Details - A new podcast hosted by Joe from the now defunct Thinking Sideways podcast (RIP) and film maker Vincent Caldoni, if you liked Thinking Sideways (again RIP) you'll like The Shocking Details. It examines strange cases across the spectrum from true crime, to paranormal activity, to historical events. I really like TSD as the hosts are both very knowledgable and informative and give a balanced perspective. I am not really into supposed paranormal events all that much but the hosts apply a lot of logic and reason to strange situations, whilst staying very open minded and creating interesting theories. This is definitely the podcast for you if you are into the 'unexplained' in all forms.  


In the Dark - In the Dark is another podcast by investigative journalists and similar in someways to Accused.  I would highly recommend their second season about the case of Curtis Flowers, a man who has been tried the most times for the same crime in U.S history. The people at In the Dark do a really good job of investigating and laying out the case and their has recently been some movement in it.  


The following is a list of podcasts that definitely deserve to be in this list but I wrote about recently in my Best True Crime Podcasts to Self-isolate To, so I won't repeat myself and just link you to that!


Root of Evil 
The Lady Vanishes 
The Teachers pet 
Serial 
Bear Brook 



Are you a true crime podcast fan? 
Have you listened to any of these?
 Let me know!


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Monday, 20 April 2020

Jealous Sweets || Grizzly Bears Review.

Jealous Sweets Grizzly Bears.


I have been vegetarian for about a decade now and eat about 90% vegan diet, as well as having been completely vegan for several significant periods. However, something I have never been great with is checking whether the sweets I am eating are gelatine free/vegan. It's always been the one thing that has slipped through the net of my otherwise string vegetarianism. This year, though, I have made a real effort to actually check and be more conscious about it. This, has been made significantly easier by the introduction of Jealous Sweets into my life.

I picked them up on day in Asda, along with a few other vegan brand sweets and was pleasantly surprised by how much I loved them. I love gummy bears but most of them aren't veggie and a lot of veggie/vegan ones I have tried in the past I haven't been keen on the texture and the flavour has always been very lacking. So when I picked them up I didn't have particularly high hopes. BUT I WAS WRONG!!!

The flavour of the Grizzly Bears is spot on. Really fruity, well balanced flavour and the texture is also really nice, still gummy and super satisfying. I really like the four choices of flavour, Lemon, Orange, Apple and Strawberry, they mix really well if you wanna just shovel a load down but all individually have a lot of flavour. They are some of my favourite sweets I have ever tried and it is really nice to have a basic sweet like gummy bears easily available. | think the packaging is really cute but still slick and they are also at a really good price point. Bonus points for being available in supermarkets too! I also recently bought a case of them online (because quarantine right now, don't judge) and they actually lasted me a decent amount of time, without feeling like I was in anyway rationing them.

Overall would highly recommend if you are veggie/vegan or just trying to be more conscious about your food choices!! Jealous Sweets also have a good few other varieties that I can't wait to try soon!

Have you tried any Jealous Sweets yet?




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Thursday, 9 April 2020

Dr Jart | Dermaclear Trans-foam Clay


Dr Jart || Dermaclear Trans-foam Clay. 

So, I have been using the Dr Jart Dermaclear Transfoam Clay for a couple of months now and in a bid to sort out my hormonal cystic acne that has plagued me for years. Happy to report I have seen some decent results!

My skin is definitely oily, not extremely so, but by the end of the day noticeably so. I always struggle with balancing it. Whilst I love clay masks in general, especially the Aztec Healing Clay mask, I can't really use them consistently as my skin is also a little sensitive. I also really struggle with finding the right cleansers for my skin too but recently have started using the Mario Badescu Enzyme Cleansing Gel in the mornings. I really like the light exfoliation as its pretty gentle but definitely needed something more to balance out the oils on my face.

Enter... the Dr Jart Dermaclear Trans-foam Clay. Although its a mask, it foams out into a cleanser and I have been using it nightly as such. It does a really good job at keeping my cystic acne in check but is also gentle enough that it doesn't irritate my skin at all. It comes in three different varieties, Calming White, Refreshing Green and Moisturising Pink. I have tried all three and whilst there is a slight difference between them I generally reach for them all equally and like having the set of three so I can swing between them.

All in all, I would highly recommend them if you are looking for a gentle but effective cleanser/mask if you struggle with acne and oiliness. I have actually tried a number of Dr Jart products over the past few years and been really impressed with them.


Have you tried any Dr Jart products?

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Monday, 23 March 2020

Best True Crime Podcasts to Self Isolate To.

Root of Evil. 

This is a list of long format (single case) true crime podcasts to listen to if you are self isolating/social distancing at the moment. As a disabled person who often has to spend long periods social distancing for physical and mental health reasons I thought I would share some of the podcasts I listen to.

I really like true crime podcasts, particularly single case one's, because they are so engrossing. Although they can be a bit intense when things are bad (and boy are they right now) after a while of trying happy distractions I find they lose their potency. After a while or constantly trying to bring your mood up it can become more tiring to maintain. Distraction via a well produced, thorough and intriguing podcast is the perfect antidote.


Root of Evil 


Root of Evil is an intense podcast to say the least. It is not for the faint of heart. Centring around the Hodel family, it explores horrific abuse, it's legacy and a very very compelling connection to one of the most shocking killings of all time. It is engrossing as hell and such a deep insight not only into a case but also a families attempts to survive and heal.


The Lady Vanishes 


The Lady Vanishes is an Australian true crime podcast and is probably one of my favourite of the past few years. It explored the case of Marion Barter, a teacher who went missing from Queensland in 1997. Her disappearance however was incredibly complex and it was initially believed she has left of her own free will. However, her daughters refusal to give up searching led to 7 News in Australia beginning an investigation into Marion and finding some truly bizarre details. 


Bear Brook

Bear Brook is an exploration of a very famous case that has intrigued the internet since the beginning of online true crime communities. In 1985 a barrel was found in Allenstown, New Hampshire containing two bodies but very little answers. In 2000, 15 years later, another barrel was found. That should be enough to get you hooked.


The Nighttime Podcast (Emma Fillipof is Missing)

The Nighttime Podcast by Jordan Bonaparte explores a number of different themes and cases each episode. However, a little while back, after covering the case of missing person Emma Fillipof, Bonaparte continued unravelling the case and created a separate feed for the episodes. The case of Emma Fillipof is a very interesting one with numerous theories regarding her whereabouts and possible demise.


In the Dark 

In the Dark focuses on a new case each season the first being the case of Jacob Wetterling, whose disappearance remained a mystery for 27 years and the second is the case of Curtis Flowers who has been incarcerated since 1996 for the shootings of four people and tried six times for the crime, believed to be the most in U.S history. The two cases are very different but the team at In the Dark do some great, detailed investigative work into both cases and is definitely for you if you like getting down to the finer details.


Missing & Murdered 

Missing and Murdered is a Canadian podcast that each season has focused on the case of a missing or murdered indigenous person. Although wildly underreported, there is a shockingly high rate of murdered indigenous women in Canada, and M&M not only does great investigative work into the case it features each season but also highlights and educates listeners on a long standing but ignored social travesty.  


The Teachers Pet 


The Teachers Pet is another Australian podcast that surrounds the case of Lynette Dawson, a missing women since 1982. Dawson's disappearance also intersects with institutional abuse, how abusers can hide in plain site and how systemic it can all be. If you like a really in-depth investigation that surrounds a case from all angles, The Teachers Pet is great. I don't want to give too much away but the podcast's investigation has been so successful that major headway is made. If you don't like spoilers don't google the case or read any summaries!


Let me know if you have any recommendations for me!

Take care! x






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Saturday, 22 February 2020

Best Vegan Food In Brighton (2020 Update)


As we are in 2020 now I thought I would do an updated list of the best places for Vegan food in Brighton. I eat out way too much. Completely unjustifiably. (Seriously, check out my instagram stories, my shame is all there) But it does mean I have a reasonably good gage on where is good!

So without delay or too much rambling here is the good stuff;


Pompoko


Chilli Tofu Don - Pompoko

Pompoko is amazing. I don't think a thing has changed in about the last 8 years I have been visiting here. Including the price. It's affordable with friendly and fast service. Not a great place for large groups of people as it is small and I don't think they take reservations, but worth a shot as they are always willing to accommodate. Personally I go for the tofu, which is cooked perfectly (crispy on the outside but soft within) but they also meat and an array of options so a good place to go with non-vegan/veggie friends. Would highly recommend getting the Yubamaki, as I've never had or seen anything else quite like it as well as the chilli tofu don pictured.




What the Pitta!


Vegan Kebab, What the Pitta!

Don't leave Brighton without trying What the Pitta! All vegan, they started out in London before coming to Brighton at the end of 2018 and I believe they now have a few more outlets in London. The bread is freshly made, doughy and soft, the salads and sauces are all really fresh and tasty but their mock kebab meat is truly something else. Even their fries are really good and they recently started doing chicken nuggets too. I never have enough room for everything but somehow I still always try.



Carlito Burrito




IMO Carlito Burrito does the best Mexican food in Brighton. It's somewhere I eat at/order from a lot and have done so for years, even back when it was a food truck, because it's so tasty. A lot of bold flavours that all blend perfectly, that are really fresh and even after probably eating too much, there is so much veg that I don't feel too bad. Vegan cheese is also available as on option on burritos as well as a vegan cheese quesadilla. They also make some of their own sauces, which are really good as well great different cocktails, particularly their variants on Margaritas, like the Hibiscus Margarita shown above. Bonus points also for their interior design, if you are in Brighton, very much worth a visit.



Beelzebab @ the Hope and Ruin


The Norm Dog, Beelzebab. 

Beelzebab, I believe, started doing vegan kebabs from a truck/stall but have grown a lot and now have a permanent kitchen at The Hope and Ruin. They now do hot dogs, loaded fries, vegan chicken kebabs, desserts. Great vegan junk food and once a month they hold a burger night and always have a hot dog of the month, making some truly unique creations. Check out their insta for a taste.
Also bonus points for being super near the train station, ideal for anyone visiting Brighton or just passing through.



Green Kitchen


Green Kitchen Meat Free Rashers

Green Kitchen is a great breakfast spot, serving classic British cafe food but veganised. They do a range of options but their fry up is really great and they make their own vegan bacon rashers. Which are so good in fact they are now sold in other shops in the local area, with a percentage of every sale going to The Retreat Animal Rescue, to help pigs live happy lives at their sanctuary.  

Purezza "The One With The Tomatoes" with Seitan Salami, Potatoes, Sundried Tomatoes & Olives.
Like What the Pitta! Purezza started out in London and made such good food they now have a few branches one of which we are lucky enough to have in Brighton. Purezza make excellent pizza's. They have a number of different bases inc. a GF base and are all vegan and their vegan cheese is homemade. They do some interesting choices but all of their basics are great and you can build your own. Definetly somewhere I take people visiting Brighton to show off Brighton vegan food.




Honorable Mention:


This place isn't eat in (as far as I know) so not ideal if you are just visiting Brighton for the day but if you are a resident, this place will satisfy your vegan chinese cravings. They do lots of great vegan options but are famous for their vegan chicken balls and vegan duck.


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Wednesday, 19 February 2020

How I Got Diagnosed with Ehlers Danlos Syndrome



Like many with EDS, I didn't have a particularly easy journey to getting a diagnosis. EDS is a rare inherited disorder that affects connective tissue in the body, caused by different genetic defects in collagen. There are different subtypes of the condition but the most common and the one I personally have is Hypermobile EDS or hEDS. People with this type typically experience some of the following symptoms, 




I have experiences most of the issues listed above all of my life to a greater or lesser extent, as the disease is progressive they have steadily gotten worse as I have gotten older. However, due to a number of reasons my diagnosis did not come until only a few years ago.

I started showing symptoms that something was going on when I was a very young child and learning to walk. I had some minor issues that continued as I grew such as a slightly odd gait, constantly falling over and generally not being able to keep up physically with my peers. So I spent a number of years from ages 5-10 occasionally seeing consultants, who referred me to physiotherapists, who referred me to Orthotics for leg braces and splints. I think it was assumed that I would grow out of these issues as I got older and neither me not my family being the sort to make a fuss it was not a process that we pushed too much.

When I was about 11 after years of ducking and diving between different departments and consultants and a worsening of symptoms, as well as increased fatigue, I was sent to a neurologist and diagnosed with a different condition Charcot Marie Tooth disease. CMT is a disease that affects the nerves, ultimately causing muscle weakness and wastage. (More info here if you are curious) This felt like real progress. Even at a young age I was very aware that some people thought I was faking, or attention seeking or just generally did not take my concerns very seriously, especially a lot of doctors I saw.

However, it just didn't really fit with a lot of my symptoms. Some it explained perfectly, such as why my achilles tendon was so weak, an early sign of the disease, but many others were pretty anomalous. CMT is usually diagnosed in adults in middle age and for some one so young the symptoms should be very mild. For instance CMT also causes stiffness and rigidity in some joints, whereas I was the complete opposite, forever twisting my ankle or having my knees buckle and bend backwards. But the diagnosis is conclusive and easily proven via genetic testing and nerve conduction tests. So that was that. I had some minimal support such as adapted orthotics etc but as the disease is incurable it was all about management and getting on with it.

When I was around 13 my health, both physically and mentally took a pretty sharp nosedive. I had always experiences gastrointestinal issues but they quickly increased in intensity. My fatigue got much worse and I started vomiting uncontrollably. At first I assumed I had a virus but after a few weeks of throwing up everything I ate it became apparent something else was wrong. During this period of time my homelife was in an incredibly chaotic state and I had a lot of deeply stressful family issues going on. I had also had some anxiety issues all my life so it was assumed by consultants that this was simply stress, my fight or flight instinct was causing this and the problem was entirely phycological. This seemed pretty logical to me and my family so we didn't question this at all. But then it continued and continued. Months went by without it showing any signs of stopping. It was affecting me badly at school and making me quite weak in general. It also wasn't like normal sickness. It didn't hurt to be sick, I wouldn't gag or wretch at all it was just like swallowing in reverse.

After sometimes when we realised that this wasn't going to stop we went back to the sadly familiar rigmarole of being passed from doctor to doctor, department to department, hospital to hospital. After some minor investigations and medications when nothing was apparent, I was told yet again it was just psychological. This went on years. Over the years I learned to control the sickness a little better and just didn't eat for extended periods in order to manage it as best I could. But it never went away and no doctors ever really showed much concern that this was happening for such a long time. So, I learned to live with it. (Obviously that is a massive simplification, it led to a pretty bad eating disorder but that's another story)


Throughout my teens and early I kind of just managed all of these things, with the addition of increased joint pain, random injuries to my joints that happened with minimal impact, increasing gastrointestinal issues etc. I would sometimes see consultants that would indicate my issues were not consistent with CMT but no one would ever take action on these things. I had a diagnosis of CMT and that was that, really. But more and more it didn't make sense. A young person with CMT shouldn't be exhibiting these symptoms. The first person to really indicate to me that they believed something else was happening was a physiotherapist who specialised in Neuro-rehab. She pointed out the issues such as my joints being far to flexible in ways not consistent with CMT and started using terms such as hypermobility to me a lot.

I had already known of a few people with EDS and it was something that had come up during google searches of my symptoms, so when hyper-mobility came up it wasn't that surprising. My physio however was never exactly explicit. She seemed to be dropping pretty big hints about what she thought might be the issue without actually saying it. I felt like she was only a small step away from winking and nudging me, telling me to google it and look into it but was clearly didn't think it her place to say. When I would say I've brought these issues up to consultants before and been met with nothing more than a a shrug, she would look exasperated but never directly question them. This is something that was a big issue for me in getting diagnosed. No one would ever question anyone else directly. Sometimes, like this instance, physiotherapists, nurses, orthotics specialists, occupational therapists, would all seem dubious, but never willing to question consultants. Time and time again, I felt like there was something they wanted to say but never would and I could take guesses. I had guessed people were talking about EDS in the past, I was very aware of the condition but that didn't do me much good if the consultants were resistant.

So, you might be asking how did you actually get diagnosed. Well, a few years ago I started going to the National Hospital for Neurology and Neuroscience to be part of a study for my other condition, CMT. Being part of the study would really mean for me that I would be examined and tracked by some of the best experts in the world in that condition. My CMT isn't particularly severe although it does cause me many issues but the treatment under the NHNN is far superior to anywhere else, and helped a lot with things like orthotics etc and managing the condition. When my consultant started looking perplexed as to certain symptoms I had and the way my body moved, stating this was not at all consistent with CMT (and she would bloody know) she wrote to my GP to ask for him to refer me back to rheumatologists. Obviously this process takes months, sometimes it has taken over a year in the past but knowing that an expert finally took me seriously and took the time to examine me carefully and acknowledge these issues gave me to confidence to say 'Fuck it, I'm over this being polite shit' and push.

I love the NHS and we need to protect it at all costs but it was failing me big time. I really didn't have the money to but I went and saw a private rheumatologist. My thinking being that someone out of the NHS might not be bound my some weird concept of 'no one can question anyone else's diagnosis' and actually look at the facts. And they did. The doctor examined me, using the beighton score, did a medical history and looked at all my symptoms as a whole, joint, gastro etc. Within that first appointment he said that without a doubt I have this, I scored 9/9 on the hypermobility test and all of my other symptoms considered I very obviously have EDS. He didn't understand how this could have been missed for so long.

I only had one appointment with this doctor (couldn't afford any more) but was then referred to another NHS rheumatologist who concurred with his diagnosis. From there I was then referred to the Royal National Orthopaedic Hospital (which is fantastic and if you have EDS and can get there, get there) to see specialists in EDS and they too agreed with the diagnosis. My consultant there actually chuckled when she examined me saying how apparent it was, she could tell immediately. She recommended me for a three week inpatient rehabilitation course which I should be attending at some point this year to try to help manage symptoms.

In its own way it's a happy ending. The sadness and humiliation I felt all those years being ignored or essentially told I was exaggerating hasn't ever gone away. I don't think it ever will really. I grew up with it and it has shaped me in ways I don't even fully know about. There is a sense of vindication in it, but still a lot of anger and sadness. If I had been taken a little more seriously early on, I could have managed or prevented symptoms from worsening and that is incredibly frustrating but in all honesty it pales in comparison to what it has done to me mentally.

To everyone out there that is or has been in a similar situation, because I know sadly there are plenty of you... fuck politeness. For years I held doctors in such high esteem, they know best, what do I know? I didn't want to push out of fear I would be seen as not only a hypochondriac but also as a pain in the arse. But they are only human. They make mistakes. There are so many amazing doctors out there that give there lives to helping people and some are just not on it, like any other sector of the populace.

Trust yourself. Advocate for yourself. You are not being a pain, you are IN pain. It is reasonable to expect reasonable help, respect and care.





Sources used:

https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
https://www.nhs.uk/conditions/charcot-marie-tooth-disease/causes/
https://www.ehlers-danlos.com/assessing-joint-hypermobility/


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