What uses up your spoons the most?

This is something that for me, has only really become a problem in the last year. It hasn’t been a struggle I have dealt with since my symptoms began, like a lot of other chronic health suffers have, and I am grateful for that at least. I am more tired now than ever, but of course I am, because I now have a demanding job, work hard, have a bustling social life, a relationship and the responsibilities that come with being an adult. Add the chronic health issues into this and it is an exhausting bundle of things.

Living with chronic pain and dealing with an abundance of symptoms every day is incredible, and people who do it, no matter what the parameters of their doing it are, should be rewarded endless praise and support. Not that they need it though, spoonies know they have to live their life, we don’t ask for a medal on a daily basis, we just get on with it.

*Just in case anyone reading is this unaware (like I was until about a year ago) spoonie is a term used to describe people with chronic illness. The idea behind it being that we have a certain number of spoons each day, and these get taken up by various activities until they run out. Once they do run out, essentially the person has little left in the way of energy and tolerance.*

So this is, for me, and I would be interested to hear what others find, the list of things that use the most spoons.

-           Showering

-          Fitting in exercise

-          Commuting home from work

-          Cooking dinner

-          Going out after work

-          Chores (especially hovering, washing and changing bed sheets)

-          Engaging in long conversations, particularly those at work

-          Drying hair

-          Reading (weird, but it exhausts me!)

-          Getting ready for a day/night (hair, clothes, make up etc)

-          Shopping (food or clothes)

My list is getting longer and sometimes I sub things in and out. Showering seems to take up so much energy and the thought of it just makes me want to bury myself in my duvet. I know it is a very popular one among those who are trying to preserve spoons, and to the outside world probably sounds bizarre.

What uses up most of your spoons? 

5 awkward hypermobile situations- Part 3

So part 3 of this series focuses a bit on things that other people do that cause stress. And stress in general. I've had number 5 and 4 happen to me recently, so here is my rant for the week:

1) Trouble eating? Jaw dislocation and pain in hypermobility is not uncommon. Sitting at work or having lunch with friends or even eating dinner at home on the sofa- there is no ideal situation to have something violently click in your mouth and the food to fall out. Sadly yes, this does come from experience. Who doesn't love half-eaten digestive biscuit in their lap in a busy office?

2) Bags. Now, a lot can be said for deciding to use a small, lightweight, sensible bag. Good for your back, easier to carry, less chance of injury. However it isn't always possible and girls in paticular LOVE their large bags. I'm thinking a lot about suitcases here. I have had some true nightmares with them. Dragging for more than 1 minute causes bad shoulder pain, picking them up causes bad shoulder pain, forcing them shut causes, (yep you guessed it) bad shoulder pain. Relying on the kindness of strangers or your friends to lug your bag down the stairs at a train station becomes a key part of travelling. That or just taking no clothes away with you and hoping for the best.

3) Lifts. The hypermobile community and stairs are not the greatest of friends. Having ankle, knee and hip issues means stairs are a big problem in some cases, particularly massive flights of them. So you opting to use the lift makes sense, and you might when planning ahead think this will be fine. However, where is the lift? Why is a ten minute walk away? Why is it out service? I have to really let the people with buggies go before me don't I? It's surprising how hostile people with 'life entitlement' can get.

4) 'Would you like a photo madam?'  Limping, using crutches, being in a wheelchair, having to receive help. Anyone who has ever used an aid in public without a cast to explain things, or needed to use a wheelchair will probably have dealt with their share of staring strangers. It becomes it increasingly difficult when you're already frustrated to not vent your anger at people who gawk at you. Maybe we should carry around Polaroid cameras for people to have pictures?

5) Show us a trick then? Explaining your condition to someone and taking time to educate them to be asked 'ohh! Can I see a party trick?' is enough to set even the most patient person off. Not taking a frankly aggressive tone when you explain that NO you won't start bending your joints and causing yourself pain and possible dislocations just to show off, can be quite the feat.

This blog now has it;'s own Twitter feed! I wanted to make a profile for it where I can concentrate more on sharing relevant stuff. You can connect with me @ChronicHealth1 for the blog and for further hypermobile musings and lots of talk about food @laurenrellis

5 awkward hypermobile situations- Part 2

A bad week and a half with my joints has to led to even more awkwardness in and around London town:

1) Public transport.
 In rush hour it is not fun, everyone knows that. However when you have hypermobile joints to contend with, it's never fun. The worst part has to be getting on a crowded tube and reaching up to the bar to hold on, only to hear and feel your shoulder go POP. You then have to make the choice between being in bad pain and still holding on, or just going solo and falling into everyone and wobbling all over strangers. It's also nice to see people's confused faces as you stand hunched over, leaning against a door because your ankle has gone and you can't make it over to the seats unaided. If there are any seats that is.

2) Cooking.
 You go into the kitchen feeling alright, ready to make a lovely, fresh, healthy meal, or even something simple like toast.What you need to remember is that there are dangers everywhere. Chopping vegetables for the Sunday roast? Not so easy when your shoulder comes out and your wrists seize up. Even buttering bread can cause some intense pain and as for mixing up ingredients for baking, forget it. Always fun when you are hosting a dinner party and you have to explain to guests that dinner is microwaved soup because your joints are having a night out. Literally.

3) Pet owning.
So you're in the local park, taking your little furry bundle of joy for a stroll when they see a fox, another dog, or just a plastic bag blowing in the wind. This has happened to me countless times. The dog runs, the lead tugs, the shoulder comes out, your knee twists. The next few minutes are a blur of retrieving the dog, trying to walk, trying to keep the dog near you and half crawling/half rolling home, much to the amusement of other dog walkers. I also once really hurt the top of my back lifting a cat. No animal is safe.

4) Bras.
I am not at the point in life where I sometimes can't wear a bra at all, and have to settle for a crop top or something similar. The straps hurt, the back hurts, they leave marks and you feel like you've been lifting weights just from having the damn thing on for four hours. Not really ideal when you have a nice dress to wear and a birthday celebration to attend to.

5) Dates.
First date, nice glass of wine, lovely dinner. All going well until you get up out of your chair or slide off your bar stool and your hip comes out and you practically fall in your suitors lap. You then have to explain this whole illness and all the symptoms and you then spend the evening worrying that they a) think you are mad or b) think you might be exaggerating or making it up. Always good to remember that if someone doesn't get it, and you can't make a date because of your condition and they don't understand, they probably aren't worth it!

I'm working on making this a 5 part series, so if anyone has awkward situations to share give me a shout on Twitter! @laurenrellis 

5 Things patients of chronic illness do...

From writing this blog, being a patient myself and immersing myself in online and hospital based communities, I have come to learn that there is much more to chronic illness than the condition itself.

1) Educating the educated

Chronic illness can be complicated, and particularly with under-diagnosed/ rare diseases, doctors will often have a gap in their knowledge. In my experience, and I know I am not alone, I often have to give a detailed description of hypermobility syndrome and the symptoms that come with it when I get referred to a new doctor. Obviously specialists will know what they're talking about (you hope) but it becomes the norm to explain your condition to doctors and for them to learn from you.

2) Adapting

You learn to be chronically ill in all situations. On the bus, at work, in the supermarket, looking after kids, having a shower. Every situation becomes adapted to you and your condition, and the adaptions aren't always good. It is however, a massive feat to carry out simple tasks while having a bad day, particularly living with chronic pain. The term 'chronically awesome' is no lie.

3) Forming communities

I didn't know that patient communities existed before I got unwell with hypermobility. Even then, it took me ages to realise there were Facebook groups, charities and forums bursting with information and support. You just type 'hypermobility' into the Facebook search bar and you're met with an abundance of groups and pages. It seems that when people have to really fight something, they fight together. It's been really interesting for me to grow a small community on Twitter off the back of this blog and my timeline is often littered with new information. You can join me on Twitter: @laurenrellis or on Instagram, where there is also a lot of unexpected 'spoonie' action! Larellis9

4) Learning and absorbing

To educate others, patients themselves have to be educated too. This is why communities and the great work done by charities like Ehlers Danlos UK and the Hypermobility Association are so important. Knowing the basis and learning about conditions is half the battle in the beginning. I was letting physios treat me for damaged rotator cuffs, even after they diagnosed me as hypermobile, because I just didn't know anything about it. It's surprising just how much patients learn about themselves and the world of medicine. Surprising in a really, really good way.

5) Generally being heroes

Ask anyone, it's bloody hard being chronically ill. It's hard having a condition that's not widely understood and without a straight forward cure or treatment plan. It takes a strong person to handle these things and they often make a strong person too.

2015: The year of the invisible illness puzzle

Anyone who has read this blog before (and if you haven't then welcome) will know that I've spent a lot of time wondering what's wrong with me. That's fairly normal for anyone who has an invisible illness. Having nothing noticeably wrong means you can't point it out to a doctor or a friend or your mum and say "look at this, this is the problem."

There are so many pieces to put together when you are essentially self-diagnosing. A lot of invisible illnesses aren't properly looked after, especially in the NHS. It's hard to get a referral, hard to get a follow-up, hard to find a doctor who knows enough to truly make a difference. It's hard full stop.

There are thankfully a lot of resources out there, which means the many people who are piecing together a puzzle have some help. It's not always the best way though, but you do what you need to. After another confusing medical appointment last week which left me with more questions than answers, I decided that 2015 has to be the year. This has to be the year it happens. I need to get answers. 

It's really difficult to face up to things sometimes, particularly when it's something like health. Your health essentially is a belonging of yours. It has a mind of its own and if can rule your life. For people that are much more aware of their health, not knowing exactly what the real issue is can take so much away from life. 

For example, I have bad joint pains, urinary tract issues, headaches, sight problems, dislocations, bad bruising, poor immunity, and now bleeding under my skin. Hypermobility- diagnosed. Ehlers-Danlos- as good as diagnosed. But what else? The doctor I saw this week was unsatisfied by what I knew. He didn't think that was it. He was confused and needs assistance from another doctor. Another referral. Maybe the 20th. 

So now the waiting game. Again. But I'm not satisfied with waiting. Instead of waiting, I'm going to get back into heavy research, use my fortunate resources (doctor colleagues and friends) and go back to all of those who have examined, prodded and poked me. I think 2015 is time for some clarity. Everyone who knows how I feel, and there are plenty of those people, will probably have had similar feelings when the new year reigned in. Time for change. Time to try and make life more comfortable, less painful and healthier. I hope those who feel less positive can change that. I hope time. Particularly time that is the next 12 months, can change that. 

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.

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  

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.