EDS Awareness Month: Stupid Injuries

EDS awareness

Prior to being diagnosed with Ehlers-Danlos Syndrome, I had a bit of a reputation of being a clumsy child. When I was in secondary school, my mum used to challenge me, at the start of every school term, to try and stay out of the local minor injuries unit and A&E majors and the trauma unit. I never succeeded. My PE teachers would despair each time I sustained a new injury, the school matron was sick of the sight of me and I’m fairly sure that I had my own supply for ice packs, because I went through so many.

Now that I have been diagnosed with EDS, the catalogue of injuries has grown but people are a little bit more understanding, although I do have to remind people that actually, I’m not clumsy, my body is just a bit wonky – I’m more prone to joint dislocations and broken bones – and sometimes, I’m simply very unlucky!

It would be a physical impossibility for me to go into all of my injuries. The nature of EDS means that I suffer from dislocations or subluxations every single day, often by doing nothing. I asked my mum for help when writing this because my memory isn’t the best at the moment. Her reply was “God. I don’t know, Laura, there is. So. Bloody. Much!” Instead, I’m going to explain some of the more memorable injuries that I’ve experienced in my twenty-five and a half years on planet earth. Looking back on my collection of injuries makes me incredibly grateful for the NHS and all of its fabulous staff.

I snapped the tendons in my little finger moving a piece of drama equipment in an after school drama club. I have no idea why, but I swear finger injuries are some of the most painful that I have sustained. This was my first finger injury and I found it pretty traumatic! I showed my friend my very very wonky and misshapen finger, whilst trying not to faint, she got the drama teachers to help and all I can really remember after that is being carried out of the drama studio, with my drama teacher singing songs from Oliver! as I continued trying not to faint. A senior member of staff offered to put my finger back into the joint, which I declined.

My friend dislocated and snapped the tendon in my index finger in a year 11 French lesson. I have talked about this injury in a blog post already and I can confirm that my poor friend is still teased endlessly about putting me in hospital and I still remind her of this injury when I want her to buy the first round of drinks in the pub.

More recently, I snapped the tendon in my index finger again, by picking a towel off the bathroom floor. You can imagine the looks that I received from medical staff in the minor injuries unit when I explained to them how I sustained this injury. Because picking up a towel from the floor is a very very dangerous exercise. The injury was more complicated than initially thought, meaning that I needed my whole hand splinted as it was the main tendon that I snapped, not the tendon at the tip of my finger. On reflection, I’m lucky that it has healed as well as it has done, because the injury wasn’t treated quickly, meaning that surgery was likely. As always, I like to prove people wrong!

A couple of months ago, I caught my little toe in my duvet and it dislocated. Not only did I managed to dislocate my toe, I somehow sustained a hair line fracture in my foot at the same time. I honestly have no idea how this happened.

Last year, I went to see Russell Howard on tour with one of my close friends. He was hilarious, I love that man. And I laughed so much that I dislocated my top rib on the right hand side of my body. It wasn’t especially painful but it put quite a bit of pressure on my lung. Unfortunately, I didn’t have enough sense to see my physiotherapist as soon as possible after this happened, so my rib ended up moving and sticking up, underneath my collar bone, which made relocating it difficult.

Speaking of ribs, there was also the perilous massage, that I experienced a few weeks ago. Never. Again.

Three years ago, shortly before my EDS diagnosis, I damaged the lateral collateral ligament (LCL), which runs down the outside of the knee. This resulted in me needing to wear a hefty leg brace for around three months. I’ve had issues with my knee since the age of ten, but this injury wrecked my knee pretty badly and I now need to have on-going physio treatment on my knee to keep it working as well as possible. How did I sustain this injury you ask? I was moving my bed side table [not heavy!].

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On the same theme of The Right Knee, I dislocated my knee, standing up, after sitting weirdly on the floor for a long period of time. From memory, I think I was w-sitting, which is a sitting position which many people with EDS find comfortable. It’s also very bad for the joints!

Shortly after I came out of my knee brace, I went to Portugal with a friend. I decided to make the most of being injury free and we went on a high ropes obstacle course. The end result of me living wildly was that I somehow damaged my shoulder badly and needed surgery in the summer of 2015 to repair the rotator cuff and tighten the muscles, ligaments and tendons to stop my muscle from popping out of the joint.

Last summer, prior to being diagnosed with vasovagal syncope and mild POTS, I fainted whilst walking upstairs and hit my face on the bannister. The following day, I was rushed to A&E with a suspected fracture in my cheek bone and potential damage to my eye. Thankfully all was okay! My poor cat was also squashed during this episode and it stopped him from being my little shadow for a few days. Poor puss.

Linked to me being a little bit fainty: during a PE lesson in my GCSE years at school, we were having to do shuttle runs, starting in press-up position. My body couldn’t cope with the change in gravity, resulting in a blood pressure drop and me falling to the ground, via my shoulder and breaking it. I was banned from shuttle runs after this.

I’ve talked a lot over recent months about on-going gastrointestinal issues and how this has resulted in me being sick numerous a day. This has caused various issues, as you can probably imagine, not least numerous dislocations of my jaw and damage to my “sick muscles” as my physio very scientifically called them.

As I said at the beginning of this post, this is by no means all my injuries, I’ve missed out the broken bones and other operations that I’ve had and I’m sure there are other injuries that I have forgotten about. EDS doesn’t just affect my joints, it is a multi systemic condition, affecting all the connective tissues in my body, from my head to my toes. Life with EDS can be hard and it’s often very misunderstood by people, but when it comes to injuries, I have the attitude of “if I don’t laugh, then I’ll cry.” It helps that my way of dealing with pain is pure hysterical laughter, which can be confusing for the medical staff when they treat me.

If you want more information about Ehlers-Danlos Syndrome, you can do so here.

 

 

 

 

EDS Awareness Month: A Week in the Life

EDS awareness

 

As part of Ehlers-Danlos Syndrome Awareness month, I thought I was share a snippet of what my life is like, in the form of a week in the life. This week is pretty average in terms of appointments and I’m not having a flare-up of symptoms, which has allowed me to carry in as normally as possible.

 

Monday

Today is mostly being spent recovering, following a weekend staying with my best friend. It wasn’t a wild weekend, of any sort, but unfortunately, I need a few days to recover after doing something. The travelling, in particular, has taken it out of me a bit and as a result, I am in more pain that normal. My right knee is very swollen, due to a mild dislocation from walking too much. My back is also more painful than usual: coach seating and underground seating isn’t ideal when you have back problems!

A while ago, I got myself a “Please Offer Me A Seat” badge, which is issued from Transport for London. This means that I’m able to ask people for a seat on underground trains when it’s really busy. The badge isn’t always well received: on the surface, I look like a healthy young adult, meaning that I have to tell people that I have a hidden disability. Sometimes, I can’t face having this conversation, so I stand. This makes me feel very dizzy and I am unsteady on my feet as it is. Throwing a moving tube train into the mix means that I resemble Bambi on ice. Eye roll.

Overall, today hasn’t been too bad in terms of dislocations. My fingers have been a bit free-spirited, as has my wrist but nothing too alarming.

Dislocation Count: Two

What: Right wrist and fingers

How: Cleaning my cat’s litter tray and making my bed

 

Tuesday

I have been dreading today. This morning I forced myself to go swimming, following advice from my physiotherapist to try and slowly introduce exercise back into my life, to see if it helps with my motility and general mood. Having endorphins zipping around my body has definitely made me feel a little bit more positive about life. Exercise is also allowing me to reconnect with my body and feel in control, at a time when I feel very out of control. My physio has given me some hydro-therapy exercises to do in the pool as well. with the aim of building my my core muscles and strength – my muscle mass as greatly reduced over the past few months, which has had a knock-on effect on how well I control my EDS symptoms.

This afternoon I had an appointment with gastroenterology. When I last saw my gastroenterologist, I took my Vomit Queen status to a whole new level, so I was aiming low in terms of this appointment: as long as I managed not to be sick, it would be a success.

In terms of managing not to be sick, the appointment was a complete success. In less positive news, I was officially diagnosed with gastroparesis this afternoon. I feel a bit emotionally numb about the diagnosis, it’s basically confirmed something which had been suspected since the beginning of the year but my consultant told me, very simply, that I will never have a normally digestive system again and aiming to live without vomiting is something that is incredibly unlikely. That sucks a bit, but I’m trying to focus on the fact that now I have a formal diagnosis, my medical team can start to formulate a clearer plan in how best to treat me.

Dislocation count: One (I think)

What: Rib(s)

How: Being sick

 

Wednesday

I had an appointment with my therapist over lunch today so we took advantage of the timing and did a supported meal. Well, she had a meal, I had a supplement drink, but that still remained a challenge, as I have hit a bit of a wall in terms of managing my intake through liquid nutrition drinks.

We also talked through my appointment from yesterday and how I’m feeling about what was said. I’m still feeling pretty numb about things, although the overarching feeling is relief more than anything. I suspect that in time, once the reality of the situation has hit home, there will be some tears and swearing. In general though, I’m feeling calm about things.

I went swimming again this morning. Whilst exercise is helping me mentally, I think that I might have overdone it slightly: my shoulder is very painful. I’m trying not to move my arm too much as movement makes the pain worse.

Dislocation count: Two

What: Thumb and toe

How: Picking up a box and walking

 

Thursday

Blood test this morning, to check my inflammation markers, as my last blood tests, run by my GP, showed that my C-reactive protein (CRP) was raised. I think a full blood count will also be checked; I normally have a full blood test every three to four months. As usual, there was a slight issue in finding a vein, I’m 99.9% sure my veins know when they’re able to be stabbed and go into hiding. I’m grateful that the nurses at my GP surgery know me well and remember that I’m a bit of a bleeder.

My aim had been to have a rest day today but that ended up not happening.

Dislocation count: One full and one partial

What: Shoulder and jaw

How: Taking a jumper off and yawning

 

Friday

Back again at my GP surgery, this time for an appointment with my GP. We talked through the medical side of my gastroparesis diagnosis – my consultant wants me to try some different medication, so my GP prescribed that today.

I feel really really tired today, partly because it is so warm at the moment. Not working does have a few benefits though and one of them is being able to sit in the garden and enjoy the rarity that is the sun in Great Britain. Lots of people have asked me how I keep myself entertained as I’m not working. The answer is simple: reading! When I don’t have the concentration levels of read an actual physical book, I listen to audiobooks.

Dislocation count: One

What: Shoulder

How: Taking a jumper off

 

Saturday and Sunday

Very hot again over the weekend. Hot weather is a blessing and a curse when it comes to having a chronic illness, my joints much prefer warmer weather to cold weather but POTS, vasovagal syncope and asthma are not huge fans and I need to be careful that I don’t become dehydrated. Having POTS and vasovagal syncope means that my blood vessels are a bit rubbish when it comes to doing what they should be doing. In simple terms, they are too relaxed and slow at contradicting and dilating, so blood pools in my frets and hands, meaning that my brain doesn’t get enough blood, which makes me feel dizzy and unwell.

On the EDS side of things, whilst my joints are less stiff and painful in warmer weather, I end up swelling up and this causes pressure on joints around my body. I have no idea why this happens, or if this is a common EDS thing…but basically whatever the weather and my body isn’t happy. Eye roll.

The hot weather has also played havoc with my sleep, so I’ll probably be spending next week catching up on my missed sleep over this weekend. People with EDS are likely to have adrenaline issues and that makes it really hard for us to fall asleep and stay asleep. And when we do fall asleep, we are prone to having crazy vivid dreams which feel like reality to us, combine that with being on medication which can cause vivid dreams and nighttime can be an odd time for me! I’ve also struggled with painsomnia over the past few nights. This is insomnia but with added extreme pain, meaning that I am in too much pain to sleep. Great fun.

Dislocation count: Three

What: Jaw (x2) and ribs

Doing what: Being sick

 

I hope this has given you an insight into what life is like with EDS. As I said, this has been a fairly average week for me, if you’ve seen out out and about, I won’t have looked sick, but lots of stuff has been happening that isn’t necessarily visible or obvious unless you know me well. Remember: you don’t have to look a certain way to be unwell!

 

 

EDS Awareness Month: What We Want You to Know

EDS awareness

In case you missed it or it wasn’t overly obvious by the title of this post, May is Ehlers-Danlos Awareness month – a month when all of us zebras come together and celebrate our wonkiness and rareness, whilst spreading the word about what EDS actually is.

Throughout April, I asked people for their help in putting together an awareness article about what EDS actually is, how we felt when we were diagnosed, whether that diagnosis was easy to come by and what we would like people to know. I would like to say a huge thank you to everyone who has contributed to this, quite simply, it wouldn’t have been possible without you.

Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

The different types of EDS are caused by faults in certain genes that make connective tissue weaker. EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare severe types can be life-threatening.

In total, there are 13 types of EDS:

So that’s the technical side out of the way, this is what we would like you to know about life with EDS.

“When I was diagnosed with EDS, I was overwhelmed and felt this weird combination of relief and disbelief. Here was a legitimate answer to problems I had been having since I was a baby, they weren’t all in my head. It was real. I am a textbook EDS case, but no one had caught it. This showed me how little medical professionals actually knew about my genetic disease. I also couldn’t believe that EDS doesn’t have a cure or a specific treatment. I was overwhelmed with the fact that I would be dealing with these things for forever. I was fifteen when a doctor told me I had EDS, but my definitive diagnosis came when I was sixteen. I became wheelchair bound exactly a year before my definitive diagnosis came, but the word EDS was never even mentioned to me until 8 months after I became dependent on the chair with every doctor telling me that nothing was really wrong. If I had known about this underlying condition, I would have avoided tearing out my joints at such a young age. The major damage came after I was misdiagnosed with conversion disorder by a hospital who refused to do testing or examination and insisted I was crazy. I was put through 6 hours of intensive physical therapy everyday for a month, and left the facility answerless and in a wheelchair, which I have been confined to ever since. 

What I want people to know about EDS is that it may not always be visible, but it’s real. It’s not anything you choose and not your fault. It’s not just a joint problem; it’s an entire body problem with co-morbidities and constant pain. Your life doesn’t have to always revolve around your sickness; you can have friends and family and hobbies. Your illness will affect your life, sure, maybe even every aspect of it. Find doctors that empower you, are knowledgeable about your condition, and are committed to helping you feel better.” Ella

“When I received my diagnosis from my geneticist, he talked for an hour about all the other health issues that can go along with EDS, such as gastrointestinal issues, dysautonomia, heart problems etc. He ended the appointment saying that I was going to be getting care to benefit my quality of life, not curative care. It was crushing to hear that I would deal with this forever. I was SO overwhelmed.

EDS affects everyone differently. It can be severe for some and not for others. Keep in mind that everyone with EDS struggles with different things.” Emma

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“The one word that comes to mind about receiving my EDS diagnosis is relief. I was so relieved to finally know what was going on with my body, and I was happy to have proved so many doctors wrong because it wasn’t “all in my head.” At the same time, I was scared because my diagnosis meant I had a progressive, lifelong illness. From the start of my prominent symptoms, it only took me a year to be diagnosed. I am very lucky. However, I have had some symptoms since as long as I can remember because you are born with EDS so technically a diagnosis took 15 years. If I could tell the world anything about EDS, I would say that it’s not just EDS. Stereotypically, EDS affects the skin and joints, but the truth is, our faulty connective tissue is everywhere, and it affects everything. Many of us have debilitating comorbidities. I, for example, have several allergic reactions a day and I get violent shaking from a lack of proper blood flow. And that’s just skimming the surface.” Allie

“As a child, I was always very flexible and my joints cracked a lot but most of my symptoms started three years ago: pain subluxations, strokes, tachycardia, malaise, sleep disorders plus more. If was a relief for me to have a name. Five months laters and it’s a little harder to say that this will be my life.” Ophie.

“I was lucky that I was diagnosed when I was 10. As I was so young the diagnosis didn’t really mean much to me. It meant a lot to my parents though. Before my diagnosis I had been accused of attention seeking, my mum had been accused of having Munchausens   and making me ill. My parents had also been accused of physical abuse because I was always injured. I was then told that I possibly had leukaemia and bone cancer so actually getting a final answer meant the world. A diagnosis also meant that I could finally get some help for the constant pain I was in.

I wish people took EDS more seriously. Just because I look healthy doesn’t mean I am not in agony. I’m also not lazy, my body just won’t let me do certain things” Beth

“When I first got diagnosed with Ehlers Danlos Syndrome I felt so happy that I cried. That may seem strange to some but for the first time ever my symptoms weren’t “all in my head” and my doctor had an idea of what could help me instead of the usual “I don’t know what else to do” answer. I was diagnosed at the age of 25 but I had many symptoms my whole life that were worsening. I would like people to know that EDS effects more than just joints. It can effect the organs to make them not work properly and can worsen in time if not taken care of.” Amber

“When I was diagnosed, I was so relieved. I finally felt like I wasn’t faking it. It took 16 years to get a diagnosis, I had symptoms as a baby and it just got worse, until I was diagnosed at the age of 16. I would just like people to know that EDS exists. It’s hard to get the people who love you to accept it as a real thing.” Anon

“I started getting symptoms when I was 11 and hit puberty…over 10 years I became more and more unwell with other symptoms, as well as EDS. I was bedridden for months and housebound for years, with the NHS telling me that it was chronic fatigue and fibromyalgia. I had various forms of intervention but nothing worked. 

When I was officially diagnosed, I was super relieved just to have a name to what was going on. Having a diagnosis allowed me to create a health plan and feel more positive about things. 

I think that it’s important to raise awareness about EDS and how hard and vague the diagnosis process is. Most of my doctors hadn’t heard of EDS, so I had to educate myself.” Alice

 

dazzle-definition

 

“When I first got diagnosed with Ehlers Danlos Syndrome I felt so happy that I cried. That may seem strange to some but for the first time ever my symptoms weren’t “all in my head” and my doctor had an idea of what could help me instead of the usual “I don’t know what else to do” answer. I felt heard and my symptoms made sense. I was diagnosed in Oct 2017 at the age of 25 but I had many symptoms my whole life that were worsening. I would like people to know that EDS effects more than just joints. It can effect the organs to make them not work properly and can worsen in time if not taken care of” Amber

“Being told that I have EDS was life changing. Before that, I was constantly accused of pretending to be injured and as a family, we went through a few months of my parents being accused of hurting me. No one believed me when I said that I didn’t know how I was injured. People still find my situation hard to understand but I don’t worry as much now. I want people to know that EDS is real.” Jack

“I was symptomatic for about 3 years before I got hEDS diagnosed. It took 2 more years to find a good team of doctors to treat it and get various other things with it diagnosed. I got really symptomatic at age 18/19 and got diagnosed at age 22. I’ve been symptomatic my entire life though. All I felt was relief and frustration that it was missed for so long. I want people to know that well-managed EDS and co. Isn’t a death sentence. I often barely notice it unless I’m in a flare-I have done a lot of work to get this far. Keep working with your doctors to get a good treatment plan, you can live a good life if it’s well-managed. Also don’t be afraid to get new doctors if you don’t agree with how they are treating you-long term it paid off greatly. You got this!” Kathryn

 

Ehlers-Danlos Syndrome Awareness Month – My EDS Story

 

EDS awareness

In May 2015, I was diagnosed with Ehlers-Danlos Syndrome and fibromyalgia, then in February 2016, I was diagnosed with reactive arthritis. Whilst the majority of my diagnoses have been over the past few years, I started to become symptomatic in terms of EDS when I was around the age of 13, but I was passed off as clumsy by my school and healthcare professionals. EDS doesn’t run in the family, so no one was looking out for it: I have wonky genes along with wonky joints and that’s taken quite a lot of adjustment to get used to. Throughout my secondary school years, I had a catalogue of bizarre injuries including my finger being dislocated and the main tendons being snapped when my friend held my hand in a French lesson, dislocating my knee by standing up (yes, really!), numerous broken bones, dislocating my shoulder doing a press up…I could continue! People found it funny, I had a reputation of being clumsy and often resembling Bambi on ice and the school matron was sick of the sight of my face. My mum raised how abnormal my injuries were to medical staff and was dismissed: they also thought that I was just a clumsy teenager.

In short, EDS is a connective tissue disorder: my joints dislocate really easily, my immune system is pretty rubbish and I’m in constant pain all the time. More recently, I’ve been experiencing issues with the tissues in my digestive system and it’s likely that I have gastroparesis. This has been a hard blow and adjusting to the latest symptoms has made the past few months tough. Dealing with being malnourished makes life a lot harder and I’ve had to give up a lot of things because physically and mentally, it was just too much.

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As a teenager, despite my various illnesses, I had a really active life. I was dancing numerous times a week and performing in dance shows. I was also on a county trampolining team and competing frequently. I loved playing netball and hockey and was on the school teams for both. I still love all of those things and it makes me sad that I’m unable to do most of them now. When I was in 6th form, my health declined at quite a dramatic rate: I literally woke up one day and was unable to walk. Months of investigations later and I was told that I had torn the cartilage in my right hip. I went from being independent to being reliant on my mum and staff at my school to help me get around: I couldn’t walk and was frequently on crutches and I was scared and in so much pain. My two 6th form years are a bit of a blur, thanks of the medication cocktail that I was on to try and reduce the pain that I was on. The stress of A-Levels and my health combined turned me into a bit of an emotional wreck and all I can really remember is how often I ended up sobbing at my year head – a wonderful lady who never gave up on me, even when I gave her hell.

The summer before I moved to university, I had major surgery on my hip to repair the tear. It was initially a success, however the cartilage re-tore under two years later and I had major surgery on the same hip again in the summer before my final year at university. Even at this point, I hadn’t been diagnosed with EDS: I was being treated as a medical anomaly, with medical professionals doing a lot of head scratching about my symptoms.

Like I said above, the past few months have been especially tough, with the suspected gastroparesis. In January I was offered my dream job, working with the early intervention team in children’s social services. However, I had to decline the job due to how unwell I’ve been. I was also at college part time, doing a counselling course and I’ve had to defer from the course due to low attendance. My hope is that in time, I will be well enough to work again, but I know that working full time just isn’t possible. That realisation is hard, I so desperately want to be working full time like the majority of my friends, instead I’m battling the universal credit system and being made to feel like an utter burden to society because I’m too unwell to work.

Going back to being diagnosed, I need to thank my incredible physiotherapist for putting all the puzzle pieces together and telling me about Ehlers-Danlos Syndrome. She went through the Beighton Scale with me and told me that I scored eight out of nine, with only my left thumb not showing signs of hypermobility. In general, my right side tends to be more symptomatic, with most of the dislocations being on that side. In the time since being formally diagnosed, I have had major surgery on my right shoulder to prevent it from dislocating and having the joint reconstructed. It hasn’t stopped the dislocations completely but the joint is now stronger. I’m going to need surgery on my right knee and my right wrist is really starting to struggle from general wear and tear but it’s being managed fairly well through physiotherapy treatment and splinting the joints.

My flare ups tend to follow the pattern of being down my right side. The joints most affected are my hip, knee, wrist and ribs. I had an unfortunate rib dislocation incident when I went to see Russell Howard live and laughed so hard that my top right rib popped out. Flares are unpredictable, there doesn’t seem to be a particular trigger for me going into a flare, although being unwell goes hand in hand with a flare. The length varies as well, if I catch the flare early and am able to see my physiotherapist, that can reduce the severity, but normally I just need to ride it out and sleep a lot. I’ve learnt how to control flares, as much as possible: I know that I’ll need to sleep twelve plus hours to try and combat the fatigue, the hot water bottles are in regular use and I have emergency morphine for the worst days, when tramadol isn’t enough to ease pain levels. I try not to take anti-inflammatory medication because it can cause additional digestive problems, which is the last thing I currently need!

Remembering to take all my medication is becoming more of a struggle, as more and more medication is being added to the regime to try and keep my body functioning. I’m on regular pain relief, anti-sickness medication, medication to try and speed up digestion, vitamin and electrolyte supplements and medication to try and keep my mental health balanced. I don’t like being so reliant on medication but I know that the alternatives are much worse.

Over time, I have learnt that I need to be honest with myself and other people; it isn’t always evidently visible when I’m struggling due to the invisible nature of EDS. Some people aren’t going to understand, you can try and educate them, but if they aren’t willing to learn, that is a reflection on them, not you. You learn who your true friends are when you have chronic illnesses and they are the people who stick by you and don’t give up on you when you’re at your most unwell. Losing friends because of your health issues is a horrible experience, but the flip side is that you meet other people who similar conditions, who understand on a whole other level. I’m truly grateful for my spoonie friends, I can’t imagine doing life without them!

Whilst being unwell has resulted on me having to stop working and defer from college, it has also meant that I have so much time, allowing me to focus on writing and raising awareness.  Educating people on chronic and mental illnesses is something that I’m really passionate about, so in some ways, I’m grateful that I’m able to write about them and even more grateful that people are interested in what I have to say. And I can watch day time TV without any guilt about needing to do something more productive!

Staying positive can be so flipping tough at times. There are days when I want to stay in bed and cry about everything that I have to deal with, but deep down, I know that isn’t going to make me feel any better, if anything, I’ll feel worse. I’m not averse to having a good cry but I also try and focus on the fact that things could be so much worse (yep, cliched I know). For the most part, I have a fantastic support system, preventing me from spiralling out of control and I owe it to them to keep on swimming.

My biggest hope for the future is that EDS won’t be classed as a rare disease. That isn’t me saying that I want more people to be diagnosed with it because it is hell, but I want more people who be aware about it. I don’t want it to be such a medical mystery in the medical world. Things are slowly changing, there’s evidence that younger medical professionals are more EDS-aware and I hope that continues. In the mean time, these hooves will keep on running.

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Universal Credit Saga: Part Three

It’s approaching three months since I first started the universal credit process, after being medically signed off work, on long term sick leave. In that time, I have had two commitment meetings with my work coach, which destroyed my confidence and made me feel like a failure and a burden on society. I have been told that despite medical evidence, written from my GP, who has known me 10+ years, stating that I am unwell, with suspected gastroparesis, I am available to have interviews immediately and I am available to start working immediately.  According to the NHS MUST Tool which measures malnourishment, I am at high risk of malnourishment, increasing my risk of sudden death. I’m sure that you can understand that hearing this information has been, in itself, traumatic.

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Despite all of this, I have been told that I have to think about how I’m planning to get back into work. Being off work is not a lifestyle choice, however it would appear that being unwell isn’t a valid reason to not be in work. I’m meant to be job searching every day. I’ve tried to do this, but the reality is that I am not well enough to be trailing through websites to find work and I also find it an incredibly demoralising experience, looking at all the jobs that healthy me could do, but are an impossible task for me when I am this unwell.

I’ve also been told that I need to be prepared to travel up to 90 minutes, when job hunting. When I was informed of this, I questioned it, due to the fact that I cannot travel for three additional hours in total. I have a car and I can drive, however, due to EDS, I experience joint dislocations daily. Driving long distances puts more pressure on my joints and I refuse to put myself or other road users at risk, by driving for longer and potentially experiencing joint dislocations. Can you imagine the potential danger if I was driving on the M40 to London and my knee or hip dislocated?

When I saw my work coach last week, to hand in my latest sick note, I had made the effort to look a little but more presentable, as in, I was wearing something other than tracksuit bottoms and had washed my hair. My work coach told me that I “looked better”. That’s the beauty of invisible, chronic illnesses: you can’t see them. It’s like being an idiot, you can’t always tell that someone is an idiot by sight, but that doesn’t change the fact that they are an idiot.

When I first started the Universal Credit application, I have no idea how difficult the process would me. It still makes me so sad and angry that disabled and vulnerable people are being failed by a system which is meant to be helping them. As I have said in previous posts, the whole application has had the affect of making me more unwell and dealing with the feeling of being such a failure has been hard to adjust to. The support that I have received from people has, honestly, been overwhelming. The Mighty have published my original open letter to Theresa May and I have been approached by other agencies and I am still deciding the best way of moving things forward in that respect. I know that I am just one person, except what I have experienced are not experiences that are isolated to just me. The system is broken and I am determined to fight the unjust nature of a system which should be helping, not penalising people. I’m not just fighting for me, I’m fighting for the people who are unable to fight themselves.

But I accept that I am just one person and I don’t have the power to make the changes that I desperately want to make.

So, where do I go from here?

As well as sending Theresa May a copy of my letter, I also sent a copy to Layla Moran, my local MP. I received a reply from the prime minister’s communications offer, telling me that Theresa May appreciated my letter (I think not), it had been passed onto the DWP and that I could expect a reply from them. As of the 24th April, I am yet to have a reply from them.

I had a more positive response from Layla Moran and would go as far as saying that her support and overall kindness made me a little emotional. She was very honest and fair in her responses to me: it is incredibly unlikely that the Universal Credit system will be abolished due to the fact that the Conservative government have invested millions and millions of pounds in the implementation and the rolling out of universal credit, as well as investing further large sums of money into “fixing” the problems that arose as a result of the system. However, oppositional parties have succeeded in managing to secure changes to the Universal Credit scheme, to hopefully make it fairer and less traumatic for genuinely disabled and vulnerable people who are in the process of applying. As well as this, I have been assured that all Universal Credit problems are noted. Stephen Lloyd MP leads on social securty benefits for the Liberal Democrats in Parliament and he routinely questions Government ministers about Universal Credit implementation. Layla is also in the process of chasing up my reply from the DWP.

Layla Moran also validated the fact that I’m unwell. I hadn’t actually realised that the demoralisation from the commitment meetings had resulted in me feeling like a fraud and not sick enough to not be in work. My work coach does not have a medical degree and has next to no medical knowledge, but his attitude, combined with the system in general, has made me question on more than occasion if I had the right to be trying to claim benefits, to financially support myself at a period of time when I am too unwell to work.

I am unwell. In fact, I am really unwell. I did not ask to be in this situation and more than anything I want to be working.

Today I received a questionnaire asking me about my health conditions and my answers on this will depend on whether I need a full work capability assessment. It’s a similar form to the PIP form, which my life slightly easier and I’m hoping that a combination or my answers and medical proof will be enough to evidence to show that right now, I can’t work.

It remains a slow and somewhat painful process but people are fighting to make the system more just. I’m still fighting and dare I say it, members of parliament are fighting too. It might not be front page news, but it is happening and I’m not giving up.

April Favourites

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Welcome to another monthly favourites post, looking at all the things I’ve been loving in April! Compared to previous months, this is going to be pretty short and sweet: I’ve been a bit rubbish at discovering new things and this month seems to have flown by before I managed to achieve anything.

Books

 

This month, following a couple of recommendations, I discovered Juno Dawson, who used to write under the name James Dawson, before transitioning to female, hence being known as Juno. On the whole, I’ve really enjoyed reading her books, getting through on average one a day. Her earlier books took some getting used to, in particular Under My Skin. In fact, my reaction after finishing that book was “that was weird!“Don’t get me wrong, it was a good book, however the concept of a tattoo overtaking and becoming the controlling force on someone’s body really really freaked me out.

Juno Dawson is  storytelling genius. Whilst her earlier books are under the thriller genre, which I love, they are so much more than just thrillers, looking at LGBT* issues, friendship, bullying, confidence and expectations. So, as well as reading Under My Skin, I have also made my way through Clean, Hollow Pike, All of the Above, Say Her Name and The Gender Games. Clean sees Juno Dawson taking a different route in fiction (think Gossip Girl meets Girl Interrupted as one reviewer puts it) and I actually have this book to thank for my introduction to Juno’s work, after I picked it up on a whim in Tesco.

Whilst I have mainly read Juno Dawson’s books this month, I have also read Sunflowers in February which was heartbreakingly perfect.

I’ve stuck to young adult fiction this month because I’ve been massively struggling with brain fog, which has affected my ability to concentrate and take in anything where I am required to think. Fingers crossed that next month, I can make a start on the growing pile of crime and thriller genre books that I have on my book shelves.

 

Films/TV

Pitch Perfect 3 came out on DVD this month. Need I say more? I love the Pitch Perfect franchise and the films are often my go-to films when I feel rubbish and need cheering up.

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I’ve realised that I haven’t watched much TV or seen many films this month. I’m hoping to see Love, Simon soon, fingers crossed that it lives up to the hype.

 

Spoonie Favourites

 

My first spoonie favourite for this month is a bit of a different one: Tesco jeans. Okay, stay with me on this one. I have really short legs – being just over 5ft is a bit of a curse in that sense – so I find buying jeans a very painful process. Once I find a brand that I like, that’s it, I’m on a convert and buy all the jeans in different colours (I say different colours and I mean dark blue and black). I had a slightly unfortunate vomit situation which resulted in me needing to buy some new emergency jeans and the nearest shop was Tesco. I picked up a pair of their contour jeans in denim colour, with ripped knees. And I love them. They are so comfy, they fit perfectly, with a slight stretch which is perfect for when my hips and knees swell up. Plus, they are so much cheaper than my usual Jack Wills/Oasis/Top Shop jeans and they wash well as well, which is always a bonus. I love these jeans so much that I went out and bought another pair in dark indigo a few days later. Who knew that Tesco jeans could be so good?!

My other spoonie favourite for April is the brand Happy Naturals. I actually discovered Happy Naturals just over a year ago and got very excited at finding another skin care/cosmetic company that not only is cruelty free, but doesn’t cause an awful reaction on my sensitive skin. Their muscle soak bubble bath is wonderful for those days when my body is all-over-hurting. Maybe it’s a psychological effect but I’ve found that it eases muscle pain and makes me feel super pampered.

 

 

 

 

Am I Having a Quarter Life Crisis?!

As the title suggests, I think I’m having a quarter life crisis. I’m in my mid-twenties and as I’ve said before, I’m really not okay about the fact that I’m closer to 30 than I am to 20. I don’t know if this sudden existential crisis is circumstantial and related to my life turning upside-down due to illness or if it ‘s something else. Either way, I am not okay! Surely I should have my life sorted by now, has being a functioning adult passed me by or am I still learning?

I’m not really one for making new year’s resolutions. In fact, I tend to avoid them because without fail, a few weeks into January, I’ve either given up or forgotten about my newly turned leaf and I don’t need any more leverage to feel rubbish about myself. Anyway, 2018 came around and I set myself two very serious resolutions: number one, I will read 52 books, one for each week of the year and number two, I will move out. In my previous job, I had managed to save a fair amount of money towards goal number two and as January rolled around, I was on Rightmove more often than I was on Instgram (hello proper adult) and had formulated a nice list of things I would like in an ideal house – a hot tub featured but then I got realistic.

Then the health hurdle came along, I had to stop working and slowly but surely, I’m losing my independence due to my declining health, becoming more reliant on people around me. Whilst I might be working my way through 52 books, my resolution of moving out has definitely been put on the back-burner.

Which leaves me to the very pressing question of: what in the name of God am I meant to be doing with my life?! What is the reason for my mere existence? I’ve realised that much of my life used to focus around work, it gave me a purpose, something to get out of bed for and formed part of my identity. I feel very lost without it. With the exception of my last job, my work identity was the elongated “Miiiiiiiiiiiiiiiiss” from children and teenagers and I’m not sure who this new non-working Laura is. So, I’m facing a metaphorical crossroads of trying to work out what my reason for existence is. I don’t mean that in an emo-esque way, it’s more that my nice little life plan has got very messed up and I haven’t got a clue where by life is going now.

And I feel incredibly frustrated about the above, which makes the situation worse.

The older that I’m getting, the more that I am pining for my university days. I miss being a student. I miss having four hours of lectures a week, rolling out of bed at 12pm without judgement, walking to the fish and chip shop in pyjamas and rocking up to university with a killer hangover and hair so back-combed that I needed to cut the knots out post Halloween celebrations (sorry Clare that you had to witness that three years running…). I miss everything about my three years at university, I loved the learning and the city that I lived in and I have friendships that I’ll treasure forever. But what if that’s as good as it gets? What if I’ve lived the best years of my life without realising it and only have a degree to show for it? I say only a degree, but y’know, ultimately I have a fancy bit of paper and a lot of debt. Twenty year old me thought me definitely though that I would be a proper, functioning adult by the age of twenty-five. Hell, I actually thought that I would be married and have children. Let’s all have a little chuckle at that thought… Sorry twenty year old me, but you won’t be smashing life like you had imagined.

I want to be that proper grown up that naive twenty year old me thought that I would be, however my bubble of safety that living at home provides is pretty cushty. For a start, I can stay at a friend’s house for a few nights and not need to worry about putting my cat into a cattery, which is a relief for him and for me. My mum can also change my bed for me when I’m feeling particularly rubbish and I have zero shame in admitting that. But, I probably should try that proper grown up thing sometime soon. I managed when I lived on the other side of the country.

I constantly want to escape. This varies between escaping on a lovely, planned holiday (ideally Iceland or Australia please) and packing a bag and just disappearing for a while. A secluded cottage which limited phone signal but decent WIFI for Netflix is preferred. But rational me knows that running away from life’s problems doesn’t work, the problems come with you. On this note, I am torn between wanting to travel the world and “be free” and have a very belated gap yah, to reminding myself that I’m not a teenager anymore and that I should probably make some attempt at trying to settle down and try and make a success of my life. Or at least sort my health out a little bit.

Talking of life’s problems brings me to social media. Now, I’m not stupid, I know that what we see on Facebook etc is like viewing life through rose-tinted glasses: everything is perfect. Obviously that isn’t the reality but I can’t deny that I have a mini freakout whenever I see another engagement post or another baby post. Friends, don’t get me wrong, I’m all the happy for you, don’t mind me as I sit in my corner with a tub of Ben and Jerry’s wondering how long it’s acceptable for me to go without shaving my legs. Just going to remind twenty year old me again at this point that I won’t be smashing life, as I imagined.

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Music is a very big part of my life but even that is another factor in my questioning my potential quarter-life crisis. I’m not sure if I’m okay about the fact that mere children are achieving number one singles. Meanwhile I’m being kept busy by plucking the one single dark hair that insists on growing on my right boob. I mean, I could have a number one single, I’ve just never tried.

Now, obviously, at the moment, I’m not drinking. Given all the health dramas, that wouldn’t be very wise (we will ignore the one evening when I drank a bottle of WKD in bed and actually felt tipsy…alcohol it has been too long!). But, when healthier me was able to drink, the ID drama was another potential quarter life crisis point. Part of me resents having to show ID to buy alcohol, because I am clearly over 18, however I resent it even more if I don’t have to show ID. What do you mean that I look over 18?! I moan about this, but I recently purchased a 15 rated film and the shop assistant had the nerve to ID me for that. Irony was that she was probably only eight years old. Oh honey.

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Surely I can’t be the only person to feel like this? Maybe the twenties, for everyone, are about sorting your life out…hang on in there nineties and millennial babies, we’ll get there. Fist bump.