5 things invisible illness sufferers do better than anyone

1) Be tired
When people get in from a long, hard day and kick their shoes off to a chorus of 'I AM SO TIRED', they really have no idea. Lots of invisible illnesses, like POTs, fibro, EDS and HMS, come with fatigue. It's not so much feeling tired, as feeling like you absolutely have to be laying down with your eyes shut immediately or you will just fall over. It just hits you like a train. There you are, going about your business, working, gardening, reading, whatever, and BAM. You are so absolutely exhausted it's as if you've not been to bed in a year. Your head feels like it's been pumped full of hot air and twice the weight it was a minute ago. Now that is tired. Really tired.

2) Poker face
There are times when you are doing something normal, say sitting at a desk at work, when suddenly a body part will explode with burning pain for no apparent reason. No one around would ever know, because you just smooth over it, try not to move, keep calm, and carry on. Dealing with chronic pain leaves you a good poker face. You can be feeling a lot of 'OUCH OH MY GOD' on the inside, but on the outside you look cool, calm and collected. Of course sometimes you can't contain it, and the bad days are bad, but you can regularly look utterly normal, perhaps even really well, when in reality everything hurts and you can't get out of your chair or even lift a cup. You'll have to be forgiven for the slight twinge of crazy when you flash someone a smile.

3) Appreciate
The good days are there to be used and used bloody well. Being cornered by illness and feeling like it dictates life awakens you to a sense of gratitude and appreciation most people don't know exist. Feeling almost brought to tears when a hot water bottle starts to ease your back ache or barely believing your luck when you can have a day out with family makes you thankful. SO thankful. You appreciate everything a million times more than is logical and really routine, average things can make your day.

4) Sleep badly
Sleeping badly is not taking an hour to drift off and waking up a few times. Sleeping badly is taking time to find a position you can lay in, waiting to see if you can stay in that position, hoping you can fall asleep, not falling asleep because you have to continually move, waking up in need of painkillers or to take medication, dislocating a joint from rolling over.....The list goes on. Chronic illness and sleep is a battle and no one fights quite like sufferers of these conditions. Painsomnia. Not fun.

5) Play it down
I used to wonder sometimes how people would feel if I could transfer all my symptoms to them for just ten minutes. Dealing with invisible illness, such as Ehlers-Danlos hypermobility, can test the patience of you and everyone around you. More often than not you probably play it down. Tell people you're okay and carry on with day-to-day life when really it's not okay at all. You're in pain, you're distressed, anxious, stressed, forgetful, brain-fogged and so tired. It's tougher than anyone can imagine, but playing it down to seem not so bad at all becomes quite the talent.

Comfort- as told by hypermobility

Being comfortable with hypermobility- a pretty enormous feat for most. My last three really bad flare ups reminded me just how important it is to be comfortable. Sleeping, sitting, working, exercising- all of these can be a real struggle. It's important to spend time finding out exactly what helps you and your condition the most. For me, it's the things below- A comfortable bed, a big, squashy chair with good support, something to do to take your mind off it, like reading, hot water bottles and deep heat to relieve sore joints and of course a good old mug of tea.

There are lots of 'self-care' tips out there for hypermobility sufferers, and comfort is a very important part of this. As much as sleep hygiene, being healthy, doing as much as exercise as you can and eating well are important, so is being able to lay down at night and feel you can get proper rest.

NHS choices provide a few important comfort hints, including footwear, applying heat and resting. Get comfortable! As weird as it sounds, because of course you make yourself comfy, not many people put enough thought into how they can improve it, particularly sleep. Winters are for comfort eating, drinking and snuggling, so treat your joints to extra comfort too.

What does your condition mean to you?

Suffering from an invisible illness can be extremely isolating. Knowing there are others out there the same who are fighting similar battles can be a great deal of comfort. This is something that people mention again and again on forums, Facebook groups, through charities, Twitter and on other blogs that I read. It is a recurring theme. It's almost like a daisy chain, precariously joined together, people support one another and the chain keeps getting bigger. It needs to continue getting bigger for things to improve on other levels, like medicine, doctors and professional support.

Everyone handles their illness differently. While symptoms may be the same, no two people are completely identical in the way they live with chronic illness. The words below are from three different people, from three different parts of the world. They have given three key words and a short summary of how they feel about their condition. They speak different languages and live different lives, but they are united in one thing- fighting their condition. 

Lacey:

 Progressive, unknown, annoying

My hypermobility pain has increased significantly over the last two years and I was misdiagnosed and therefore mistreated for eight years before getting the correct diagnosis. I am still being bounced around different hospital departments trying to get to a specialist in order to manage the condition. I try to manage it as best I can and my current top tip is sleeping with a pillow in front of my stomach like a pregnant woman to prevent a recurring trapped nerve in my spine!

Mendy:

party tricks, pain, planning

I’m always in pain, always tired and although the doctors told me it would get better with age, I find that my joints keep popping out of my sockets more. With every activity I want to do I need to plan, either take more painkillers or have more sleep, have more recovery and say no to things more often. This is my life. I’m not sad about it. I was born with hypermobility. It’s only a shame that this is something not visible from the outside. I've lost friends over the years who haven't understood why I wasn’t able to go to birthdays or social gatherings. In my book, those aren’t friends. I live my life to the fullest, do whatever I can. I work, have my own house, lovely friends, nice hobbies and I’m happy. I’m not my hypermobility, I am Mendy with the funny joints.

Jay:

Falling apart inside

EDS has single-handedly taken away so much from my life, but at the same time gifted me an abundance of maturity and understanding at a very young age. Having such a dramatic, hidden change to your life can obviously be dizzying and the lack of research and understanding for such a difficult condition to live with is extremely frustrating; but what this means is the people I've met and spoken to with EDS are some of the most courageous and resilient people you could imagine. They have for the most part become their own doctors and created a community of people who know how hard it is to live with EDS who support each other tremendously. And for that I am grateful.

I would really like to receive more of these short pieces from people who suffer invisible illnesses and live with chronic pain. If you want to contribute to a future post please email laurenrellis010@gmail.com  

Learning to grin and bear it

Those who live with chronic pain know that it isn’t about stopping it, it’s about learning to manage it. Pain management is no easy feat. It can be a long, daily struggle that takes over life. Life is pain and pain is life. This is not exactly a mantra that anyone wants to live by. The thing with pain is that it can consume you. It’s important to remember that pain is a part of life and although at times it definitely can, it doesn’t rule you. A lesson all those with hypermobility syndrome, Ehlers Danlos, fibro and other chronic conditions learn.

Those who live with painful conditions, especially ones where treatment is difficult to receive in general, it becomes a case of how you work around it. When I first got symptoms of hypermobility syndrome, it was painful to breathe. Shallow breathing became my norm, because I just learned to deal with it. Working full time was hard, not knowing what all this pain was and being referred to people who ultimately, by no fault of their own, couldn’t help me. One thing I remember most clearly from the first year, was learning to grin and bear it.

It took a while. Lots of painkillers were consumed and injections injected and examinations carried out. It interrupted work and put me in a low mood and probably made those close to me think I was mad, or attention seeking, or a hypochondriac. You know how it is. Soon though, I stopped using my right shoulder as much as possible. No more bags, no more carrying shopping, no swimming, no running, no stretching. The less movement, the less pain. I breathed differently, typed differently, slept differently.

For some people, the pain is in more than one place. I only had to deal with one body part at a time when the pain was at its worst and I am so thankful for that. I don’t know  how others carry on when they are in pain practically all over. They do carry on though. As much as you can, you get on with it. I remember thinking of the pain as a tag-along. Obviously unwelcome, but soon it just existed. Sometimes there, sometimes (on good days) not there at all, sometimes really painful, sometimes not too bad.

I think you do learn to exist alongside it. I'm not saying you make peace entirely, but you do what you can to still be you. Some people may not be able to carry on and be as active as others, but I'm sure they do as much as possible. I'm not sure if you can actually overcome pain, maybe some people think you can. But I do believe, to some extent, sometimes, you can grin and bear it.

I worked through my worst time, not always all day and sometimes I would leave to have appointments and see doctors, but I did go in. I eventually made it to my favourite music festival (thanks to very strong friends who could lug my stuff as well as their own), went on holiday and moved on with my career. I used to wake up and get so angry about the stupid, throbbing pain in my shoulder and back that I didn't even think about normal everyday things. But you come a long way when you're up against it. The body can still support you, even when it seems to be doing all it can to go against you. Now, most  of the time, normal things like dog walking, holidays and commuting and working aren't affected by pain. The times they are, I like to just lay on the floor and make some jokes until the episode subsides. I obviously move to the bed if it lasts too long though. Comfort is king.

6 ways you know you have an invisible illness

1)      You wake up in the morning looking and feeling fine. All is going well and you think this might be a good day for you. A day where you can get things done and feel like a normal, functioning member of society. Half hour later you are falling apart, things hurt for no logical reason, you can’t quite make it into the shower and you consider putting painkillers in your tea. You still look fine though, and you can't decide if this is good or bad.

2)      You approach inanimate objects with an air of extreme caution. You can’t just throw yourself onto a sofa or jump into bed because who knows what the consequences will be. Waking up in the mornings on a beautiful day and throwing open the curtains is far too dangerous. Your shoulder could come out of its socket and ruin the whole day. Sometimes you also need to mentally prepare to shower. It’s not a decision to be taken lightly.

3)      You experience deep and confusing emotions If you feel well enough to let your hair down and have a few (or a lot) of drinks at the weekend. While most hung-over revelers wake up on Sunday worrying they have drunk-texted someone they shouldn’t or accidentally phoned their boss, you wake up too scared to move. Who knows what damage you might have done while having fun? You have to slowly and carefully make your way to the kitchen to re-hydrate and eat all manner of carbs. If you have got away with it you then begin to feel invincible and consider doing other activities that you normally avoid before realise your head hurts too much and you go back to bed.

4)      Explanation exhaustion. Telling people who aren’t aware invisible illness exists or can’t quite comprehend them becomes tiring very quickly. You may even have devised a short, concise script of what to say when someone asks why you were off sick or why you can’t get out of your chair.

5)      Planning is something you have to do with great care. You never know when symptoms will flare up and mean you can’t go on your day out or go visit your friend or even go for dinner. Plans are for days when you feel good and you know your body will last the duration. You also have to ensure your friends and family understand your condition so they can’t hit you with ‘but you LOOK fine, maybe you can come for a while?’ 

6) You often have to face the injustice of feeling hungover when not so much as a drop of wine has passed your lips. Waking up with a raging headache, joint pain, shaking, needing painkillers just to face the shower. All of these are followed by the overwhelming urge to shout 'WHY ME? WHY? WHY?' but instead you just get on with it and start your day the best you can because you are a God damn warrior. 

5 problems hypermobile people encounter

1)      Being told “You don’t look unwell”

Probably the main problem with hypermobility syndrome is that unless you are in a sling, on crutches or in a wheelchair, you probably look like you are physically fine. Even when people mean well, being told you look fine when you feel the complete opposite is probably the most frustrating comment. It should be socially acceptable to shout ‘IT’S AN INVISIBLE ILLNESS’ directly at people who assess you entirely on how you look. Or just hold up a sign when the shouting gets old.

2)      Informing doctors what hypermobility syndrome is and that you aren’t imagining it

I've heard many stories and read accounts of lots of sufferer’s health care since starting this blog. A common grievance that comes up time and time again is that you have to continually explain to a string of doctors, sometimes even specialists, what your condition is. Those with Ehlers Danlos will often hear doctors say they've ‘heard of it’ but will then realise that’s where the knowledge ends. I've had this problem myself many times and have even had my GP giggle delightedly at my ‘backwards’ arm and tell me what a great party trick it is. Er, that’s wonderful, but please refer me to someone to stop the pain yeah? Someone who CAN ACTUALLY help please!

3)      Suddenly putting a join out and realising you need help

I was once walking home, in the cold and dark, from visiting family when my hip came out for the first time. I had no idea then that I had any sort of condition, let alone that I was hypermobile. I had to call my parents for help and explain I needed a lift home because I literally couldn't walk. The only thing that showed up on the x-ray was some swelling, which was never followed up. This happened again recently when I was at work in a busy diabetes clinic and had to stop in the middle of seeing a patient to say ‘You’ll have to excuse me, but my hip is out of place.’ It’s not ideal. It’s also quite hard to approach someone in public to help you as they will most likely look at you like you’re an alien and bemusedly lead to you to a bench.  It’s also always fun and games when you wake up having knocked something out of place in your sleep and explain to your friends while you are laying on the floor, then ask them to brush your hair for you.

4)      Doing everyday household tasks

An obvious one, but this is so unbelievably annoying. My shoulders are my worst behaved joints and on bad days basically all normal daily tasks become a massive pain (literally) in the neck. Hoovering? No. Changing the bed? No. Washing your hair? No. Peeling vegetables? No. Carrying anything that weighs more than about 5 pounds? Absolutely not. I recently spent a Saturday lying flat on the floor smelling profusely of Deep Heat and applying heat patches to my back while my friends made me tea and assured me it would ease off soon. All I needed to do was shower and get dressed. Out of the question. Oh life.

5)      How many painkillers have I taken?

More organised and efficient hypermobile sufferers will probably be much better with medications than me. As I often am lucky enough to go by without pain relief at the moment, when I do have a bad day I remember just how tough it really is. You basically become a walking-talking albeit very drowsy pill-popper. When I got my first big flare up I spent most days counting down the time until the next pain killer, then forgetting which I could take and trying to avoid sleeping on my desk, on the floor and on the stairs. Anywhere that looked a bit like I could lay really.