Invisible illness – the struggle is still real

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I don’t consider my illness to be invisible. To me, it’s blindingly obvious.

When I look at my feet, I see the scattered red dots where my blood vessels have leaked and stained. When I look at my ankles I see the weird red and orange patches that no doctor can explain, just hanging out down there like a little fake tan accident. When I look at my arms I see the strange way they bend and the places where my joints don’t look right.

To other people, I look perfectly normal. Bog standard. Run of the mill. Just another face in the crowd.  I don’t look ill, (unless you get up close and personal with my face on a bad day and see all the lines and purple marks having a tired party) I mostly just look like someone who got up early and could use a sit down, which is basically all of us right?

I get up five days a week and cram myself on the train to go to work. I work all day, go to the gym or running in the evenings, see friends, eat out – I live a good life and I’m lucky, but every day I’m also aware that I could feel awful at any given moment.

The best way I can describe life with an illness like mine is that I’ve spent my (almost) 27 years feeling a bit ropey. For years I thought I was just unlucky. People, family included, would joke that I was a sick note or that I didn’t have an immune system and I just agreed. People can’t get their head around pain for no apparent reason when they’ve never dealt with it, so in many ways I wasn’t taken that seriously and that includes by doctors.

When I finally got diagnosed with having Ehlers Danlos syndrome after a long and arduous battle, the GP I saw as part of my follow up told me she too had an invisible illness and that she felt my frustration. She also said that it was likely to be a lifelong struggle to get people to understand that looking good doesn’t equate to feeling good.

She wasn’t wrong.

I still find myself not bothering to tell people when I feel really bad. If I have to limp for two days because my hip has come out of place, I’ll just get on with it when I could really use more rest. I still get disbelieving looks when I complain about not feeling right. I still get asked “REALLY ill again!?” if I do tell people things aren’t good.

You definitely do build up a resilience to be able to carry on when you’re feeling like crap with chronic pain conditions. Chronic illness in general is certainly a character building experience. It’s really been online, social media particularly, that I’ve found a strong support network. The internet has given people who suffer with rare conditions a forum to come together and it’s been extremely important to me. It’s so reassuring to speak to another person who just gets it and is living it too.

The majority of people I’ve connected with and turned to for help online have struggled at one point or another with trying to communicate to people that you can be seriously unwell but still look totally fine. It really is a thing.

How do you tell a stranger on a train that you need a seat when you look young, well and fit as a fiddle? How do you explain to your employer that despite the fact you were breezing round the office yesterday full of good cheer, today you can’t come in because you can’t move?

It’s a battle and it’s a tiring one and there are many people fighting it, so be kind to your mate who feels ill a lot, because you can never really know what’s happening to a person.

Yes I feel unwell a lot, but you can keep your ‘sick note’ comments to yourself thanks


When I was much younger, I didn’t mind being ill. It was never ideal, but the odd cold and a smattering of bladder infections didn’t seem so bad. I got attention, maybe got to stay home from school and lay on the sofa with a duvet, watch TV I never usually saw- hardly the dream but still not that bad. 

Fast forward 15 years and all I want is to not be ill, it’s the top of my wish list above everything else, but sometimes it feels like ill is all I am. I blame a big part of that feeling on other people. Don’t get me wrong, I’m okay and I go to work all week long and lead a normal life, but in the background there’s always a symptom. Something always hurts. There’s always something I’m worried about or feel like I need to get checked. I hate it, I try my hardest to overcome it and work on being well and making my body stronger, so there’s nothing worse than someone coming along and announcing “Oh you’re always so ill, you sick note!” Thanks so much for your wisdom pal, please go away indefinitely. 

The older I get, the more I cannot stand to be asked how I manage to be sick so often. The more I find it jaw-clenchingly frustrating to hear people suggest I should try harder to not be unwell, or ask how it’s possible I’m not feeling good again. 

Being chronically ill is hard enough without trying to make others understand. If you know someone who’s fighting a long-term condition, chances are the last thing they need is reminding about it, or to have people asking how it can be that they’re spending another day missing out. 

I choose not to tell people, even close friends, about a lot of my symptoms or consequences of having Ehlers Danlos. On the whole it doesn’t stop me having a life. I have a job, I socialise, I travel a bit and I exercise when I can. It’s the days I  have to limp, the evenings I spend aching all over, the hours I lose at night to worrying about why I’m bleeding into my skin on my legs that have an impact. When my physical symptoms were worse a few years ago I did miss out more and it drove me round the bend to be told I should eat more fruit, try getting early nights more often or the very worst: “You could just come for a bit, you might enjoy it.” YES THANKS I WOULD LOVE NOTHING MORE THAN TO ENJOY MYSELF BUT MY WHOLE BODY HURTS AND MOVING IS HARD. 

I know I’m ill, I know I might seem lazy sometimes at weekends, or be against going out, but it’s because I’m sick and the absolute last thing I want to hear is a dig, a comment or even a throwaway remark about it. I would trade many things to be normal and have good health and be living in the average body of a 26 year old, as would so many others. 

It’s really difficult to explain chronic or invisible illnesses to people. It’s hard to understand them too, so I get why people see it as a flippant thing, but it’s frustrating and grinds you down, which is the opposite of the support that’s needed. Be kind to that ‘sick note’ you know, because believe me they would much rather be out living life than stuck inside the limits of feeling unwell. 

Trying to find comfort when illness is beating you

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This time three years ago I was going through a truly terrible time with my health. I was ill, I was in pain, I was in and out of hospital and GP appointments, having blood taken every week, struggling to go to work and feeling completely defeated by a body I felt trapped in. This wasn’t the first time I wanted to unzip myself, chuck my body away and start again. It was just the latest bad spell, but also the worst I’ve ever had.

Dealing with long term, chronic illness can be really awful at times. It can be scary, lonely, confusing, frustrating and incredibly upsetting. That feeling of wanting to bang your head against a brick wall repeatedly is common, as is the feeling that nothing will make the situation better. Nothing. Doesn’t matter how many of your favourite things you try and cram into one day, while snuggled up in bed with supportive people and all of the carbs, nothing will help you feel like you again. This was pretty much my default feeling for six months.

Needless to say, it was bad times.

I haven’t sunk that far into a health black hole since then. I’ve managed to keep myself teetering on the edge during the worst days, but mostly I’ve been clear of feeling that only bad things can happen when it comes to wellness and my body, which is promising. It’s definitely a feeling I aim to keep up well into 2017 and beyond. The struggle still exists, like right now for example, I am at work in a lot of pain just because I went ice skating yesterday- ‘fun things can’t happen to me because I pay for them in pain.’ This is not how I want to be feeling. I need to remember there was always a small chance it wouldn’t agree with me. That doesn’t make it any easier though.

It is incredibly draining to be battling a health problem and feel like there’s no one around you that understands or who can really help or make a difference. Be it mental health or a chronic pain condition, the stress is the same. I’ve talked to many people who suffer with conditions similar to mine through taking part in online chats, networking on Twitter and reading blogs on the subject, and though I would never pretend to understand how one person feels, I know that there’s a level on which we can all relate. There are problems that crop up and again and again such as:

-Trying to explain to friends/families/colleagues why you are feeling ill but knowing they won’t be able to truly understand.

-Struggling to deal with the explanations people want when you can’t follow through with a plan, can’t attend an event, or just need to stay home because you’re having a flare.

-Dealing with how unfair it feels that people around you have good health when you are constantly dealing with symptom after symptom.

-Trying to not let health win- basically trying to make sure you can still lead a happy life and try to come out on top, even on the bad days.

-Accepting that sometimes the bad days will end bad and you can’t make them better.

-Getting setbacks when you’ve been feeling well for a while, or trying hard to make improvements to your health.

These are just a few of things I know I feel when it comes to my chronic condition, and I’ve discussed all of these with various people who struggle with health problems. From IBS to endometriosis, bad period pains every month, arthritis and even skin cancer- the diagnosis might be different, but it’s helped me a lot to remember that I’m not the only one. The universe hasn’t singled me out to suffer while everyone else has a party and a jolly good time of it. It takes a long time to take comfort in the fact that you aren’t alone in feeling ALL of the emotions and confusion, but it can help, even if just a little.

Twitter health communities- the negatives and making them better

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Twitter is my one of my favourite and at times least favourite things. I look at it more than most people because I use it for work and throughout the day for my own personal benefit too. I use it for news, for laughs, for reading material, for travel and fashion inspiration and also for support or information about health issues.

A lot of the accounts I follow are owned by people who have similar health struggles to me, or accounts that support people like us. In the past few weeks I’ve seen lots of stuff about abled and disabled people, the difference between those who live with chronic illness and those who don’t and tweets about the ignorance towards mental health. I usually like seeing conversations online about this, because people with struggles such as these get to have a voice and can talk to others they would never get support from in person, because they would never have known they existed. I like seeing positive engagement and I like it that Twitter is such a good platform for allowing communities to join together and have a voice. But it’s really not been all good lately.

This is probably nothing new. I don’t have the time or the social media energy to keep up with everything on my timeline and through personal choice I don’t often join in on health debates because a recent good run in health for me has given me respite from constantly worrying and thinking about symptoms and doctors. For me, the problem with making a voice for those who have invisible conditions like I do is that it’s so hard to get people to remember, accept, believe or sympathise with something they can’t see. People need to see medication, or see that you’re bed-bound or stuck at home to accept you’re unwell.

Illness comes in many different forms- both mental and physical. Just because someone gets up and goes to work day in and day out, doesn’t mean they can’t possibly be unwell. Just because someone socialises, goes on holiday, has a social media presence and gets stuff done, doesn’t mean they aren’t unwell. I sometimes think it would be easier if I was visibly seen to be popping pills, as it’s something that people relate to illness, but I don’t need to. Of course you can’t expect everyone to understand your health issues- mine are so complicated highly qualified doctors struggle to understand them, but it’s not about accepting the medical science, it’s just about remembering that there can be stuff happening below the surface of normal looking facade.

It’s one of the biggest issues facing people who suffer with chronic conditions that leave no mark or show no obvious signs- people don’t buy it, and I see  frustration anger, and even arguments happening on Twitter  because of this . Why should someone who battles with illness have to justify the need to take a step back, miss an event or defend the fact they’re out and about getting on with life? “But you don’t look sick…” is a common theme. Newsflash- people with long term health problems can wear make up and nice clothes and hang out on beaches in bikinis. They can have lives. It’s really bloody hard to battle chronic illness. Really, really hard.

I’ve stopped expecting people to remember I’m not the same as everyone else. I don’t get angry about it, I just get tired of it mostly, because I don’t like to bring up my health issues or show signs of weakness, which isn’t how it should be. I go to work, go on holiday, go to the gym and keep up with my social life, but at a cost. I spend plenty of time nursing pain, limping, attending doctor appointments and blood tests, peeing into test tubes and having body parts scanned- mostly in the evenings, at weekends or at the crack of dawn, because I’m lucky. Not everyone has the luxury of getting appointments like these. Maybe if I advertised that a bit more, people might remember, or even ask how I am.

I’ll still always credit Twitter with being the biggest help in getting to the bottom of my health issues, and eventually getting the right care, but there’s definitely work to be done in making it a better place for these communities.

How social media and blogging transformed my health anxiety

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I think I probably see at least two tweets a day with links to articles or blog posts singing the praises of the digital detox. Generation Y- the people who have a smart phone in their hand while in bed, in the bath or on the toilet (you’ve all done it). We use social media too much apparently. We stare at our glowing little screens for too long. We’re obsessed with other people. It’s bad for our mental health. It’s bad for our self-esteem. Probably all true to a degree.

I use my phone too much. I went to college in the rise of Facebook. I did journalism as a degree when the digital age was starting to thrive and print magazines were starting to die. “Sign up to Twitter!” “Start a blog!” “Learn about SEO!” I did a module at uni that required everyone taking part to set up a blog. This was 2010, and the first time I delved into WordPress and started getting my head around tags and catergories or trying to think about content someone- anyone at all, would want to read. Then I graduated and forgot my password.

Fast forward two years and I was in my first permanent job after uni, doing some web stuff, learning all about diabetes and dipping my toes into digital marketing. Oh and I also had crippling pains in my shoulders when I breathed and was waiting on endless referrals and seeing endless physios and rheumatologists and puzzled cardiologists who couldn’t work out what the sudden deterioration in my physical health was.

I just assumed it was something wrong with my joints and that some physio would probably fix it, but the longer it dragged on and the more symptoms that appeared, the more confused I got. Anyway, finally, months later and after one partial hip dislocation, I got a sort of diagnosis. “You’ve got a rare disease that we don’t know much about and we haven’t got the testing right yet, but you’ll be okay for now asking as long you don’t keep dislocating things and become immobile.” Okay so I’m paraphrasing, but that was the gist of what I got told, because there really isn’t much known about JHEDS- Joint Hypermobility Ehlers Danlos, to be precise.

Jolly good, I thought. I’ll just erm, go and continue life while my joints fall apart and wait for the day some lengthy research is finished so I can Google it?

I tried to do some research, typing in random words doctors had said and even turning to those live chat forums where an alleged doctor answers you. Like, who are these people? Why do they all look like stock image models in their photos and are they really there? I have some serious doubts, plus one chat led me to being told perhaps I ate too much food colouring. Legit, I’m sure.

Around about that time, my colleagues started receiving requests from the local council for us to contribute to their blog. The task fell to me and after writing a bit and delving back into blogging, I started to wonder if there was a blog out there for everything…and every health condition. This is the internet, where you can see micro-pigs ride around on turtles, surely there was something that could help me. It took less than hour to find several blogs that told the stories of patients who’s joints were breaking, bodies were bruising and limbs were hurting. You know in films where something falls into place and a light shines down like angels are using a torch or something? That was me, right then.

There were people all over the planet, not loads but some, writing about the same sort of condition that I had. People who actually understood, who hadn’t got the right answers from doctors and who had advice I could take on board. They knew how it felt. This also led me to discover the phrase ‘not rare, but rarely diagnosed.’ I was not alone, which was nice to know.

The blog discovery flipped a switch and I started searching Twitter. I found people who tweeted about connective tissue disorders. Imagine loving reality TV and selfies and drama more than anything and discovering the Kardashians for the first time.

It became clear that I needed to join this community. I wanted to do health communications/marketing as a job, and I needed support for my own health, as anxiety and stress was making me feel even worse than the pain. I needed the virtual pat on back and look of understanding these Twitter accounts could offer me. So I started blogging. I started tracking down people who had the same condition as me, or similar, and tweeting them. I sent them, very nervously and after much deliberation and hovering, links to my first blog post.

Looking back, I got a pretty overwhelming response.  People were so kind. People offered me advice, shared their stories, read my writing, shared it on and suddenly I had more Twitter followers, people were subscribing to my blog and I felt about 99.9% less lost and scared than I had several months before, leaving hospital appointments with just words and confusion.

To this day, the online community of rare disease sufferers, chronic pain fighters and fellow connective tissue lackers make me feel better. They make me feel confident I’ll get through bad days, they educate me and they give me a connection to people who understand how I’m feeling. There’s a line though, as sometimes too much information, perhaps not specific to you, can cause more anxiety, so I try to digest just the right amount.

It might not be ideal that we have phones glued to our hands and share everything we eat and wear on Instagram, but social media and blogging helped my health in ways I can’t even measure.

My experience of exercising with a chronic health condition

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Tonight I was at the gym and found starburst wrappers on the treadmill. Someone’s clearly having more fun while working out than me. 

I might not exactly be Kayla Itsines but for the past 9 weeks I’ve been doing something that’s made a massive difference to my health and wellbeing, especially mentally. Er yeah, you probably guessed it if you read the title- exercise. But not just random, sporadic sessions or meaningless 20 minute bursts on any free piece of gym equipment, I’ve had an actual routine. 

Exercising when you feel constantly unwell is not a high priority, I know, I’ve been there. I’ve also been in situations where doing anything physical ( like walking 15 steps) would have been impossible, so I understand the severe end of the spectrum as much as the mild. There are tons of chronic illnesses that stop sufferers being able to exercise, from chrones, to endometriosis or joint related problems like mine- the list is endless. What I’ve been conscious of ever since being diagnosed with Ehlers Danlos, is how much I need to get fit but how much it could end up making everything worse. It’s a catch 22. I was told to get fit and strong or end up immobile, yet my body is fragile and my joints dislocate and my body doesn’t function right. There’s a very careful balance to strike. 

The idea of going to an exercise class after a day of bad pains would make past me feel horrified, and it sometimes still does. Putting up with sharp, dagger pains in fingers, legs, feet, ankles, jaw and basically any body part you can name leaves you ready for bed and painkillers, not spinning. What I’m slowly learning though, is that when you know how to judge your body, you can do the right amount of exercise without leaving yourself bedridden and weeping with regret. It is possible- and I realise not for everyone, believe me I feel your pain. I dread the next time I’m under a duvet covered in deep heat unable to lay or sit comfortably or lift my phone up without feeling like I’m being beaten by various blunt objects.

My determination to keep a run of good days, and now good weeks, has also made me extra careful to not push myself and get cocky. I need to remember I am not Britney (have you seen her abs lately though?). By dipping my toes in gently and not being scared to sit out or modify moves in front of a class full of people, I’ve given my chronically unwell body a whole new spring in its step. 

I’m currently doing spinning, circuit training, HIIT and a core class every week, plus some some gentle running. It’s a lot and more than really ill me a few years ago would have dreamed possible. This amount of exercise won’t always be possible, and I no doubt will still have weeks where I can’t walk downstairs properly let alone do box jumps and planks. The point is, I’ve tried out various things, taken advice from trained professionals and put together a routine that ‘having a good spell’ me can do. I don’t do everything exactly as instructed in circuits because my fragile shoulders would probably pack their bags and leave me, but getting over the fear of asking for help and not needing to be on the level of total strangers at the gym has meant I can do a Lauren circuit session. 

On days I exercise with pain, I take everything down a few notches. Less reps, less sweat, less effort. Showing up and just raising my heart rate is better than doing nothing at all. I also try to make sure I have what I need after- a bath, hot water bottle, deep heat and time for a long sleep. And I’ve bailed out on days where exhaustion leaves me napping accidentally in toilets or with blurred vision and brain fog. 

I want a nice body. I want to be fit. I want to feel physically good and I want to treat my body right- even if it does give me a bloody hard time. I don’t want my health to stop me. It will. I know that at times it will undoubtedly floor me and make me feel more engine failure than fitness fanatic, but by gaining the confidence to give things a go and setting some limits, I know I’ll bounce back and want to feel the way I do now- which is pretty bloody good and on track to serious confidence. 

8 struggles of people with chronic joint pain

  
It’s the middle of Saturday and I haven’t left the house or really moved more than to change bedding and put washing away. I haven’t stayed indoors this long during the day for weeks and even though it’s down to my joints swelling up and giving me hell, it’s still been nice. 

I don’t really know the spilt between who reads this blog for the chronic illness element, which has been quite lax lately, or who just reads it in general (I’m still amazed at the amount of people that do so mega super thanks xxx). 

It’s weird to have an illness that lurks in the background of everyday life because you never know when you might wake up and feel utterly awful or in my case, not be able to walk properly and put clothes on unaided. It’s sort of like living with a game of health roulette but it’s not really fun and you don’t ever win any money. 

For the past few months my Ehlers Danlos Syndrome joint pain and general health woes haven’t been bad at all, but on days like today when they all come out to party and have a rave inside my legs and shoulders, I’m reminded that the struggle is real. And also that I definitely need a full time personal assistant or robot that can wash my hair and do my life admin and just carry me around when walking really hurts. 

Anyway- top 8 joint pain struggles right now: 

1) Hair washing/drying/styling. Birds nest hair is life. 

2) vegetable peeling/food chopping/pasta draining 

3) Holding on for dear life on public transport and ignoring the cracks that come out of shoulders when you hold the bar above you.

4) Desks. Sitting at them hurts. Standing at them hurts. Laying on them would probably hurt and I’m willing to try it to find out. 

5) Undoing a bra. My God. 

6) Shopping. Prolonged standing and walking while carrying bags is a recipe for ultimate suffering and why the internet exists. 

7) Opening jars. Not good for the peanut butter/marmite faithful. 

8) Walking uphill. 

Health- frustrations and explanations 

  
There are so many trivial things in life to be frustrated about that it’s a wonder it isn’t our main emotion. It’s possible everyone else just has more patience and understanding than me, but I doubt it much. Like on Monday for instance, I was frustrated about horrific train services, rain, the economy (hello I’m an adult), the tape over mini egg tube lids and 4G not working properly. Apart from like how hard this country makes it for young people to be financially stable, the rest is just a big pile of whatever.

I should probably try and be less frustrated about unimportant things, but I’ve tried really hard and I can’t help it. There’s one thing that makes my frustration pretty much boil up and explode and will probably be the cause of the many frown lines I’m working on daily- explaining a health condition to people repeatedly. So new people yeah, you meet them and they know naff all about you, so I can appreciate they might need a little filling in, but it’s when you’ve already laid it out several times, in many different circumstances that I just get a bit blurry eyed and angry.

It’s not just having a chronic painful condition like me, there’s loads of similar inflictions that mean people are limited and not ready to take on the world on a daily basis. I know plenty of people who suffer with anxiety, bad backs, endometriosis, IBS- they’re all limited because of it in one way or another and while most of them wouldn’t go on about it, it’s helpful to have people that remember. I’ve discussed this exact thing with two friends in particular who get the same problem- people think they’re flakey or boring or ‘getting old’ if they turn down plans or can’t commit to things but that’s just not it. 

That’s not it at all. 

Health is health and it isn’t like you can wake up, sit it down and politely ask if it will behave and do you a solid. 

Besides scratching it into your forehead or wearing it emblazoned on a jumper everyday there’s not much that I or anyone who feels the same can do. I don’t want to talk about health woes or bring them up but having a long term condition does get in the way at times. It does ruin plans. It ruins fun. It doesn’t want you to go out and dance and eat 2am McDonalds and some days it doesn’t want you to go to work or get out of bed. 

I know the frustration when someone who you’ve explained your problem to time and time again doesn’t get you. Or asks why when you feel like it’s obvious. Or tries to talk you into like it’s just a ‘too tired’ thing. It’s hard and tiring but chances are it won’t get much better so you’re doing a good job at putting up with it. I feel you. I feel you a million times over. Chances are people don’t mean it. They don’t want to make you feel angry or misunderstood.

It might just be something to try and make peace with. It might be something that causes you to rage. Or comfort eat sometimes. Or feel like hitting your head off the wall. But you’re pretty much a hero. ❤

Suffering from something others can’t see doesn’t make it any less real

IMG_6064The other day I was on the tube. On the Northern Line. It was rush hour and it was packed, probably to a slightly dangerous level, as it every day. It was a bad day. A woman shouted at me and I shouted back and it was a Tuesday. The worst day of the week.

I get on the first stop of the line, so I always get a seat. I’m not that fussed about sitting. I commuted for the past three years standing, crushed against strangers with my mouth upsettingly close to armpits and chests, and I never really cared. I think you become immune to the misery of the rush hour crush after a while, which is for the best.

So there I was, sitting down, reading, looking totally able-bodied and pretty standard- which is what I am 75% of the time. However, there are some days where I can’t walk normally, or stand up straight properly, or support my weight evenly. Some days I limp from the minute I get up in the morning until I go back to bed. Some days I need to hold on to things to get up stairs and sometimes stairs are out of the question. There are even some days, thankfully rarely right now, where I should just stay at home and not move. I think if my hips could talk, they would regularly say “bitch sit down, we ain’t playing today.”

I’m not sure why my hips are gangster rap stars, but they’re not happy little souls.

That day on the tube, a pregnant woman got on,I didn’t see at which stop, and stood facing away from me, about three people down. I could barely see her through the crowds of people rolled together like a massive flesh burrito, let alone tell she was pregnant. Happens every day, I’m certain- pregnant people get on transport, takes a while for people to move. Well, I ALWAYS MOVE. I would damn sure have moved that day if I was nearer and noticed but I wasn’t and didn’t.

However, a woman standing in front of me, who had noticed, and was clearly harbouring a very bad mood (probably 5+ years of commuting on the hell that is the Northern Line) and she decided that she was going to get pregnant lady a seat. I was the nearest to her, so she started loudly telling everyone on the carriage how this ‘lazy ignorant girl’ was taking up a seat of the ‘needy’. She said some other similar comments (then I realised she was referring to me), and proceeded to tell me to ‘get out of the way’ because why would a young person need to sit. She went on a bit longer and people started to stare. She waved her arms around in my direction and pointed at my feet a few times. Then, a man moved. Pregnant lady looked mortified and I had to refrain from emptying my Evian bottle on this vocal woman’s head.

Not that she would know, but I limped, slowly, to the tube that morning. I walked, pretty much in agony and desperately needed to sit. I took painkillers for most of that day, I had to spend an hour the evening before with my legs elevated to stop them swelling and drain some of the excess blood that gathers down there- overall not a great time.

It’s not the first time something like this has happened. And this isn’t something that I can do anything about aside from wear a badge or explain it to complete strangers which will never happen.

The point is, to look at me, you would never know there was anything wrong. I’m even pretty sure some people close to me think I’m just a bit dramatic, which makes me keep this whole invisible illness quite low key. BUT IT IS THERE. I have a real, diagnosed, immensely painful, debilitating, exhausting genetic disease. Ehlers-Danlos is considered rare, but it’s more likely that it’s rarely diagnosed correctly, as are many conditions similar to mine.

I know people aren’t mind readers. I know you can’t expect people to think twice before speaking, but there are so many conditions that exist that we can’t see. A bit of thought goes a long way sometimes, that’s all.

 

Trying to do life with chronic fatigue

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If you suffer with chronic fatigue, you know about it. It doesn’t just hang around in the shadows, occasionally stopping by to cause problems, it can cling to you for days, weeks or even longer, weighing you down until you give in. It’s largely associated with chronic illnesses and is often part of conditions that cause widespread pain, but it’s a symptom of a lot of diseases and conditions and it’s something that is hard to get across to others.

Chronic fatigue isn’t like feeling tired. It’s not like having a really long day and feeling like you need to go to bed, it’s a crippling feeling of complete exhaustion, for absolutely no obvious reason. It’s kinda like how I imagine a dementor’s kiss would feel. There you are, just trying to get on with your day, and along comes the fatigue in it’s miserable black robe, ready to suck the life out of you. When I first got diagnosed with Ehlers Danlos, a lot of stuff fell into place. My tiredness levels had been all over the place for a long time. I thought I felt how other people felt. I thought it was normal to get a solid 8 hours sleep and then find yourself at work the next day practically unable to look at a screen or even support your own bodyweight. I just thought this was what it was like to be tired and have a job.

The doctor I was seeing at the time assured me this wasn’t normal. He cracked a joke about how everyone with a job was tired, but that I definitely shouldn’t reach a point of not being able to hold my head up after a solid nights sleep and good diet. I never tested positive for anything else that could explain the tiredness, so because it’s a common complaint among Ehlers Danlos patients, I’ve accepted it’s something that’s just part of life now.

There’s only so much you can do to get through the day when your fatigue levels are a certain height. Caffeine does nothing, fresh air barely makes a dent and there’s little you can get from food or water. Sometimes all there is to it is listening to your body and doing what it’s desperately asking of you- sleep.

Not so easy to explain when you’re at work. “Erm, sorry guys, need to to pop into the stationary cupboard for a kip. Back in a hour yeah?” and experience has shown me that if you make real attempts at explaining your severe exhaustion, it’s likely people will think you’re making excuses. That’s not to say there aren’t employers and people out there who understand listen, because I’ve been lucky enough to work with them, it’s just generally not a symptom that can be understood. I imagine most people would probably be thinking ‘we all get tired hun, wind your neck in’.

Truth is though, it’s hard to even joke about, because it’s so draining.

I can go for days now without feeling any of the affects of CF, and I’ve definitely felt a steady improvement for the past year. When it does hit though, it’s like you’ve woken up in a cloud of fog. Everything you do is made harder by feeling like you’re wading through thick clouds. It’s hard to concentrate, hard to listen, hard to be productive and almost impossible to do tasks to your full ability. Imagine trying to do a days work with a huge, blurry bubble over your head that stops you hearing or speaking properly. The worst I’ve ever had it was about a year ago, when I was unable to hold conversation for more than a minute and couldn’t remember what any emotion other than ‘fuck off’ felt like.

Needless say, it’s not a great mood lifter.

There’s few nicer feelings than when a CF sufferer feels the fog start to clear. Like walking from a grey, rainy street straight onto a sunny beach. Everything just improves and you feel like you can see, taste, hear and even move around better. For a while last year I did pilates (gentle, beginners classes) and I started doing the stretches at home after work, and this seemed to make a slight difference. This was around the time I got on top of things and my bad days got fewer. Also exercise, as impossible as it seems to even contemplate when your gripped by CF, made a big difference to me, as did spending more time outside, even just if it was sitting for half hour in fresh air. It’s all about trial and error I guess.

If you have CF or a condition that brings it on in bouts, I feel your pain. It’s horrid, and as amazing and wonderful as bed is, there are times you just want to be able to leave it without having a small breakdown. (I say this laying in bed fully clothed, in broad daylight, but its like -2 degrees outside so I’ll allow myself).

Happy energetic vibes everyone.