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.

 

 

 

 

Guest Post: Living with Crohn’s Disease

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Starting a new monthly feature of guest posts, I’m handing this post over to one of my favourite humans, Megan. You can follow Megan on Instagram @megans_healthjourney.

I’m not exactly sure where to start this but I guess I should start by introducing myself. I am Megan, a girl in her twenties, who has more pyjamas and dressing gowns than clothes, as well as a slightly unhealthy addiction to handbags. Which I guess could (possibly) be considered an economical purchase as a handbag will always fit me regardless of whether I’m in a flare or on the dreaded steroids. Well at least that’s how I justify the occasional one when I’m going through really rough patches health wise. Something I also collect, without any choice in the matter I may add, is chronic illnesses, because I mean why have just the one when you can have several? Hey, life would be too simple! For this blog post, however I am only going to focus on one of those illnesses and that illness is Crohn’s Disease.

My official diagnose of Crohn’s disease was on September 18th 2014, a day that unfortunately I will never forget. But whilst I left that consultation room speechless and in a daze, it finally gave me answers I had been looking for to explain how I was feeling. I had been getting symptoms for more than a year or two before hand with fevers, severe vitamin deficiencies, frequent toilet use, overwhelming fatigue etc but things got much worse in December 2013 leading to various hospital admissions to bring in the new year in 2014. I saw various doctors during my early admissions, but they couldn’t figure out what was the cause of my symptoms and I was left being promised gastroenterology input and medical investigations, but nothing materialised. In fact the referral didn’t even appear to have been made.  At the same time as the roller-coaster with my health, I was in the final year of my psychology degree, which in itself was a very stressful period and I ended missing some of my final year exams as I was hooked up to drips and IV antibiotics. I had barely been making it to lectures even though I was only due in twice a week, but the more people told me to postpone my course, the more I wanted to defy them and prove that I could do it and that my body no matter how hard it may try- would not beat me.

It got to a point in May that year, however, when I was verging on a breakdown and I could barely move from my bed or the couch and had a fair bit of lost weight on top of feeling so weak. I truly didn’t think I could go on much longer. I phoned up the hospital and said to them that I physically couldn’t wait any longer, and if I didn’t see a doctor within the next few days, and doctor was someone who would actually listen and follow through on their actions for once, then I felt I truly might die. I had no fight left so this felt like my last option. Fortunately, the week after, 6 months from the initial admission, I met my gastroenterologist and I felt for the first time maybe I was finally on the road to some answers. After various invasive tests, including endoscopy, capsule endoscopy and colonoscopy, she told me I had Crohn’s disease- a type of Inflammatory Bowel Disease. Although I knew in myself there was something wrong I couldn’t and still can’t quite believe I finally had an answer.

So, what is Crohn’s disease? It is a long -term condition that causes inflammation anywhere in the digestive system from the mouth to the back passage. It is so much more than a ‘toilet issue’, although that is a big part of the condition: sufferers can have anaemia, joint problems, fevers, a lowered immune system, depression as well as lots of other symptoms. I am grateful to have my diagnosis in the sense that I know what is wrong however knowing hasn’t meant that my journey is over- rather it has just been the beginning. I have had countless flare ups, some requiring hospital admission, as well as sepsis which is likely to be a result of the immunosuppressants I am on to try and control my Crohn’s disease.

Ultimately, I have and still do often feel very alone and ‘labelled’ with my conditions and though it’s easier to say, ‘you’re fine’ then say how you’re truly feeling? How can you really explain it to someone when on the surface you do look fine. But becoming chronically ill has also allowed me to make lifelong friends and for that I am truly grateful as the obstacles would be even harder to try and face alone. Finding out you have any condition at all gives you a new dimension to your identity, it’s made me change my life completely. I’ve learnt who and what really matters and just how precious health is.  If I could end with one ‘spoonie tip’ it would be to always listen to your body and fight to be heard as no one knows your body better than you. So, if you instinctively feel something is not right and you are met with resistance by the professionals you initially meet, it doesn’t mean your problems don’t exist.

Don’t give up fighting because you’re worth it and there will be other professionals who are willing listen and help.

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If you would like more information about Crohn’s Disease or IBD you click here and there’s lots more information over on Crohn’s and Colitis UK. Hannah Witton  vlogs about life with IBD, having recently had major surgery, resulting in a stoma.

An Open Letter to Theresa May

Dear Theresa May,

I’m going to start by explaining a little bit about myself. My name is Laura, I’m 25 and I live in South England. I have a degree in English Language and Education Studies; university was the best three years of my life, I worked hard and played hard. As a reward for all my hard work, I am now saddled with a hefty debt with Student Finance, which I’ll probably never fully repay. I like singing loudly in my car to S Club 7, reading, travelling, spending time with friends and I watch a little bit too much Four in a Bed. Much like any other 25 year old woman.

I also have Ehlers-Danlos Syndrome, Fibromyalgia, Reactive Arthritis, Asthma, various mental health conditions and suspected cyclical vomiting and gastroparesis. The past few months have been tough. I don’t want your sympathy but I have been very unwell. Because of this, my medical team and I decided that I needed to be on long term sick leave. This meant that I needed to turn down my dream job, in January, and drop out of my part time college course. I have been working since I was 16 years old; said dream job was working in children’s social services. I’m amazed that I got the job, not because I doubted my ability but because of all the cuts made to children and youth services. Going on long term sick leave is not a decision that was taken lightly. However, due to my illnesses, I am being sick numerous times a day. I haven’t eaten a proper meal since 1st February. I am malnourished, losing weight rapidly, exhausted, scared and my hair is falling out. Losing my hair has hit me hard, it’s part of my identity and it takes clever styling everyday to disguise the balding and thinning areas. This is on top of daily dislocations of my joints, widespread pain, low blood pressure and having a low immune system.

You won’t like this but I haven’t been earning since mid-November. So that means that I’m not paying tax or national insurance or my student finance debt. Sorry about that. Like I said, I’m very unwell. I don’t like it either.

After much discussion with people involved in my treatment and care, I made the decision to apply for employment support allowance (ESA). Only, where I live, this has been changed and now everything is under the umbrella of universal credit. I’ll be honest, I was reluctant to apply. I never thought that I would be in the position where I needed to apply for benefits but my health comes first. That was what I told myself. Media coverage of universal credit hasn’t been great, that also concerned me. My previous job meant that I had to help vulnerable young adults apply for benefits, through the universal credit scheme, so I was prepared for the hoop jumping and being on hold for hours to DWP. What I wasn’t prepared for was the feeling like an utter failure.

Today I had my first “commitment meeting”. I handed over my fit note, so there was no doubt that I wasn’t playing a game and pretending to be ill. The letter from my GP clearly explains my current situation. On the application, I stated my numerous health conditions and treatments.

It was explained to me that next week, I would have to attend the job centre again and I would be looking at how to write a CV with my new work coach. As I’ve already said, I have been working since I was 16 and this was alongside studying until I graduated from university. I have a CV. I don’t need help in writing one. But still, I’m going to have to do this to tick the box. We will then be doing interview skills. Interviews don’t concern me and I am proud of the fact that every interview that I have attended has resulted in me being offered the job. But I will listen as I am told about interview skills, so that the box can be ticked and I can be “helped back into work”. Apparently sickness isn’t a reason to be off work and instead it is down to my skill set.

I asked my work coach what would happen if I was ill and was therefore unable to attend appointments. He paused and then told me that if I didn’t give them enough notice, I was at risk of being sanctioned. I explained again that I am being sick numerous times a day, am malnourished and in a lot of pain. Sometimes, I can’t leave my bed because I am so sick. I can’t even make it to the toilet to be sick, so I have to use a bowel. It’s not dignified but that’s my reality. I’ve been in and out of hospital, needing to be given fluids and intravenous anti sickness medication to try and combat how dehydrated I’ve become. I’m genuinely very unwell, but I could be sanctioned for that. Hearing that has made me feel really anxious, which is likely to exacerbate my symptoms.

In reply to this, my work coach asked me “right. And when are you going to be better because we need a timeframe for getting you back into work.”

I’m going to put this very simply: I do not know when I’m going to be better. I don’t know if I’m going to get better. This could be my new normal. That’s a terrifying thought, but there’s not much I can do about it.

And instead of thinking that I should apply for universal credit, so that I have a bit of financial security, I am now questioning why I started the process in the first place. I feel like a failure because I can’t work. I feel ashamed that I am ill. You have made me feel like this. Your government has made me feel like this. I have been made to feel like a burden to society.

I want to be at work. I do not want to be on benefits, it was a hard decision to make. I want to be doing what my friends are doing and working 9-5 every day and then going out at the weekend. But I can’t and that is something that I have to learn to accept. But I can’t accept it because you and your government are discriminating against me because I am ill. I’m not lazy, work-shy or using avoidance tactics and all the other stereotypes that you seem to hold about people who need to be on benefits.

There’s still no guarantees that I will be accepted and given universal credit. I need to go through the work assessment and I could be declared fit to work.

So, please explain to me what I am meant to do? Please explain to me how you think I am meant to survive in this given situation? Do I sound like I am fit to work? This isn’t just an issue affecting me but I’ve had enough and I’m speaking up for all the people you are failing. Enough to enough, stop penalising us for being ill. This is not a lifestyle choice. You’ll probably never be in a situation whereby you need to apply for universal credit and all I can say to that is lucky you. But I really hope that you’re never placed in a situation whereby you are unwell and therefore unfit to work. Because it’s a living hell, made worse but intense feeling of failure and shame.

You’ve let too many people down.

Yours sincerely,

Laura

20 things I want to do when I’m better

It is fast approaching two months since my body decided to throw an epic wobbly. Two months of pretty much being bed bound, unable to eat, a lot of vomit and watching an unhealthy amount of Four in a Bed. I don’t know when I’m going to get better. I don’t know if I’m going to get better, or if this is my new reality. I still don’t know what’s actually wrong with me, although recent tests are pointing to a likely diagnosis: a diagnosis that scares me shitless. More on that if/when I get a formal diagnosis.

Anyway. Being bed or sofa bound has given me a lot of time to think, which is both a blessing and a curse. So these are 20 things that I would like to do when I’m feeling a bit more healthy.

  1. Drive. Whilst I can still drive, due to malnutrition and lack of energy, I have been relying on taxi-of-mum most of the time. I can just about manage driving myself to GP and physio appointments, but anything more than that requires too much energy. I miss my freedom.
  2. See my friends. My friends are dotted all over the county. And they are wonderful wonderful people who have made sure that I still feel part of society, even if I’m physically unable to take part. But I would like to be able to go and visit them, instead of relying on them coming to me.
  3. Go  to York. I went to uni in York and it was hands down, the best three years of my life. Four years on from me graduating and I still pine for my student days. York is probably one of my favourite cities and holds many happy memories.
  4. Have a spa day. My lovely friend Claire has also been going through a pretty rough time recently. Tough times have definitely made our friendship tighter but my God, we more than deserve a day of pampering!
  5. Eat a meal. I don’t think if this will actually be possible but I can dream! It’s weird, I don’t miss food, the thought of eating makes me feel incredibly anxious because I know it will result in me being sick, but I miss the idea of food.
  6. Start studying again. I was at college doing a part time counselling course but have had to defer until September. I’ve been looking at various online courses and I think I’m going to enrol in a child psychology course. Online learning will give me the flexibility to study when I feel well enough, hence reducing pressure and stress.
  7. Go back to work. In January I was offered my dream job and was over the moon. I have worked really hard to get to were I am now, in terms of work and realising that I had to turn down my dream job to focus on my health was devastating.
  8. Go shopping. Self explanatory really. I love shopping.
  9. Exercise. I can’t wait to go swimming and go to the gym and rebuild my fitness back up.
  10. Go to the theatre. Going to the theatre is one of my favourite things to do, especially going to see musicals. The to-see list includes: Everyone is Talking About Jamie, Les Mis, The King and I, Kinky Boots, Hamilton and The Lion King (again).
  11. Have a holiday [not counting York]. Realistically, I won’t be well enough to go abroad this year and I’m not sure if it’s something I’d want to risk, but a short UK break somewhere will do. Ideas welcome.
  12. Properly wash my hair. At the moment, all I can really do is a quick shampoo because anything else exhausts me. RIP my hair.
  13. Meet people. You learn who your real friends are during crap times and the support I’ve received from people on Instagram has honestly moved me to tears. I want to be able to thank them in person and give them a huge hug.
  14. Join a choir. This had been one of my new years resolutions and that hasn’t happened, for obvious reasons.
  15. Drink alcohol. Man, I want a gin and tonic so badly.
  16. Go for a walk by the river.
  17. Move out. This is perhaps a slightly ambitious hope, but I had been planning on moving out this year.
  18. Have a belated pancake day. I still haven’t got over the fact that I couldn’t eat pancakes on pancake day because of my vomit comet status.
  19. Get through a whole day without saying “I’m tired.” I’m a funny one…
  20. Take my mum out to say thank you for effectively becoming my full time carer. She’s a good’un.

A-Z of mental health

A – Acceptance. Until you can accept that you are unwell, progress will be slow.

B- Belief. Not necessarily religious belief, although that helps some people. Believe in yourself. You will get there and you are worth the time, effort and energy which needs to be invested in you.

Today you are You, that is truer than true. There is no one alive who is Youer than You.

 

C – Coping. Find ways to manage your mental health and focus on the things that make you feel better. A cup of tea is the go to solution for the crisis team, although I’m more likely to curl up in bed with my cat, watching Waterloo Road.

D – Discrimination. Having a mental health diagnosis, can leave you open to discrimination, either through your workforce or through social harassment. You are within your legal rights to challenge this, should it happen and you are protected under the Equality Act 2010 (as long as your can prove that your mental health condition is a disability. The Equality Act protects you if you are discriminated against by employers, organisations that provide services and public functions, education providers (like universities and colleges), organisations that sell or manage property and private clubs and associations (Mind January 2015).

E – Equality. See above: never be sorry for something that is out of your control

F – Friends. Not everyone gets mental health, despite the fact that we all have it. The people who understand are the people who matter. Some people will stand by you, during the good and bad days and it’s a harsh learning experience that not everyone will be there at the other side of a bad patch.

G – Grief. Life changes with mental illnesses: it’s normal to grieve over how things used to be.

H – Happiness. You are allowed to have moments of happiness. That doesn’t make your illness any less valid or real.

I – Information. There were nearly 1.6 million (1,590,332) people in contact with specialist mental health services in 2012/13, the Office for National Statistics estimates that one in ten children and young people between the ages of 5 and 16 has a clinically diagnosed mental health disorder. Children and adolescents with poor mental health have relatively worse prospects throughout their adult life. For example, young people with a diagnosed mental health condition in adolescence are twice as likely to have no educational qualifications in early adulthood (Mental Health Network 2014)

J – Jokes. If, like me, you have a tendency to use dark humour to get through day to day life, so what? Although it’s best to work out when it’s appropriate to make jokes about your own death, it can freak people out.

K – Kindness. Be kind to yourself. Not everyday will be plain sailing and you will have days when you feel rubbish. Don’t beat yourself up. Getting to a place of longterm stability takes time, hard work and there will be slip ups. Allow for that. Put things in place which help you. Nothing beats a lazy day in your onesie watching back to back episodes of something on Netflix. Self care is such a buzz word, but until you learn to care for yourself, letting other people in to care for you is so much harder.

L – Little people.  They are young, easily influenced and need people to look out of them. One of my biggest fears is letting down the little people in my life. I don’t want them to know the heartbreak of mental illness and whilst I can’t prevent that from happening, I can show them the meaning of true love.

M- Medication. Little magic tablets which have literally saved my life. I’m not ashamed of taking psychiatric medication. It’s not a case of one tablet is suited to all: it’s taken a good number of years to right the right combination of medication and what works for me won’t necessarily work for someone else.

N- No. It is okay to say no if you aren’t up to something. There’s no shame in having a bed day. Self care is not selfish.

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O – Opportunities. If you had told 15 year old me that I would get some of the opportunities that I have experienced because of mental health, I wouldn’t have believed you. I was young, scared and had no idea how I was ever going to feel okay again. Having the chance to speak out about the stigma attached to mental illness is something I will always remain grateful for. Looking back, it’s pretty incredible that I have taken part in a debate in Westminster about the cuts to youth services, I have written articles for Sane and carried out research for other charities. People are interested in what I have to say and that is still somewhat surreal. I have been able to mentor young people and help them to gain a better understanding of mental health and most importantly, through blogging, I have given people, real people, who I mix with in day to day life, the space to talk about their experiences.

P- Pride. I’ve come a long way from the 15 year old who felt crippled by depression and anxiety. Aged 15, I knew very little about mental health, so I hadn’t twigged that I was struggling with mental illness. It hasn’t been an easy ride and I still have my struggles, but I’ve come on leaps and bounds in the last ten years.

Q – Questions. Ask questions about your mental health. You’re not going to know it all and professionals supporting you are there to (hopefully) provide answers.

R – Rest. Know when it’s time to stop and take a breather from the real world. It’s okay to need time away from the non-stop 21st century life. Turn your phone off, shut your bedroom door and allow yourself to just be.

S – Stigma. One day, I truly hope that the stigma around mental illness will lessen. I don’t think it will ever fully go, purely because it’s always going to be something that isn’t understood by everyone. Don’t be afraid to be honest and open, the world won’t change unless we make a change.

T- Talking. Fairly self-explanatory but by being open and talking about my mental health, I have helped myself and I think and hope that I have helped others. Mental health is not a conversation that should only be had on World Mental Health Day…Talk about it whenever you want to.

U – Understanding. Not everyone is going to get it. That’s a hard lesson to learn. But the people who do get it and understand are some of the most valuable people in your life.

V – Victories. Celebrate the small victories. And the big ones. You got dressed today? You’re fab! You left the house today? You’re winning.

W – Work life balance. The pressure of an increasingly demanding work culture is perhaps the biggest and most pressing challenge to the mental health of the general population. Make sure that you have downtime and do things for you, not for work.

X – Xeniatrophobic. Don’t like going to the doctor? There’s a word for that.

Y – You. No one knows you better than you do. Trust your instincts.

Z- zzzzzzz. Listen to your body and sleep if you need to sleep. We sometimes take good sleep for granted; lack of sleep can hugely impact on mental health. We all have our own ways of managing sleep, know what’s right for you.

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Life Lessons from a Spoonie

You learn a lot about yourself and the world when you get diagnosed with a chronic illness. As someone who was a relatively healthy child, I never once thought that my life could change so drastically. In the three years since my formal diagnosis, there have been a lot of ups and downs and I know that the roller coaster that is chronic illness is going to carry on for the rest of my life.

I am not obligated to do everything that a healthy person does. Put simply, I can’t. That is something that I’m still learning: I still push my body beyond what it is capable of, because I don’t want to be viewed as different. I can’t work a 40 hour week, go out in the evenings and then have a packed weekend. Hell, right now I can’t even get dressed or leave the house. Working is important to me, but my health is important too. I’m allowed to know my limits. And I’m allowed to change them day by day.

Having a diagnosis of a chronic illness does not automatically make me an inspiration. I really struggle when people tell me that I’m brave or inspiring, I don’t see things like that. I have two choices: give up and lie in a pit of misery for the rest of my life, or pick myself up and carry on as much as possible. Sure, it’s hard, but what choice do I have? Feeling sorry for myself is only going to make me feel worse.

The reality of chronic illness is scary. It’s scary because people don’t understand. But I will not ever hide my illnesses to make other people feel comfortable. I do, however, know what is appropriate to talk about and with whom. I’m not going to drop into casual conversation that my nose constantly feels like it’s burning because of how sick I’ve been and that I’m scared to blow it, in case it caused yet another nose bleed. Spoonie friends are more likely to understand that. I’m open and honest about things, but I know that having a verbal filter is important too.

I am allowed to have bad days. I’m allowed to have bad weeks. I’m allowed to have bad months. I’m allowed to cry. Life can be really tough, unpredictable, scary and testing. I’m allowed to morn my “old” life and feel jealous of people who are healthy and don’t need to plan their lives around medical appointments and consider whether they are going to overspend on energy. If I do overdo it, I will not be ashamed about staying in bed and only getting up to go to the bathroom or get a drink. When my body is crying out of sleep, there’s no point ignoring that.

And I’m allowed to celebrate the little things, such as getting dressed and not living in pyjamas (although pyjamas are good) or going to the supermarket or replying to a backlog of emails.

It is not my fault that people won’t always understand. Unless you’ve experienced something, it’s very hard to fully understand what a person might be going through. Empathy goes a long way, but please don’t be patronising. Being ill hasn’t altered my intelligence. Seeing people unwell is difficult, I fully get that. But being unwell is a lot more difficult and having people walk away from friendships or relationships makes being unwell a whole lot harder. I’m still part of the world, sometimes I’m unable to join in and it’s isolating. A simple text saying “how are you?” is enough to make someone’s day.

I did not choose to be ill. No one chooses it. It is not my fault, it isn’t anyone’s fault. I didn’t wake up one day and think “hey being sick with no cure sounds like fun, I’m going to try that and see what happens…” This is not a lifestyle choice. This is my reality and the reality of so many other people.

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I will not apologise for something that is out of my control.