Three.  Ditching the kettle… I have boiling water plumbed in because I can’t lift a kettle without a dislocation.

Four.  A pushchair… When my children were young my mobility was at its worst.  I would get out the buggy to hold on to when I walked along even if the children didn’t need to sit in it particularly.  I would let them hold on and walk slowly with me while it held me up.  I miss the fact that they are all too big for a pushchair.

Five. Leaning… Standing is hard work 1) because of pain and 2) because standing still makes me dizzy and when things are bad I can be clammy, shivery, breathless and can even faint when upright.  You will notice me just propping myself up on a table or a doorway.

Six. Fidgeting… Sitting and standing for any length of time is uncomfortable and moving just helps.  Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out.

Seven.  Standing up slowly… Always, to minimise the head rush and dizziness.

Eight.  Pacing… I am driven, I like getting loads done but I would find that I would push and push only to crash later.  Pacing used to be my enemy but I have had to work hard to make it my friend.  All of my daily activities are paced and no one would ever know! It increases the amount that I can achieve over a given period instead of feeding into the boom bust cycle.

Nine.  Hiding fatigue… You can’t see fatigue, unless you know me well and on the days when my fatigue is at it’s worst you won’t see me at all because I physically can not get out of bed or leave the house.  My life is planned 24/7 to manage this element but sometimes it creeps up on me and catches me out.  I have collapsed before unable to put one foot in front of the other and been rushed to hospital.  People won’t know or understand how bad this can get because they just wont see it.

Ten.  Managing pain… I have become an expert at hiding my pain (and I have a pretty high pain threshold), you won’t see the amount of medication that I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy.   I am a master of disguise too, I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it and unless I knew you well I wouldn’t even tell you!

Eleven.  Planning… If I do have something particular on a certain day then an immense amount of planning goes into it.  I’m still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction because I had a meal out two days before and didn’t plan enough time for my body to recover in between.

Twelve.  Avoiding obstacles… This has become like second nature.  This time of year just walking to the car there are obstacles, the blanket of Autumn leaves may look pretty but in the dry they mask the unevenness of the pavement beneath and in the wet they are slippery.  I always walk around things where I can, or take another route.

Thirteen.  Wearing a vest… I have the ability to stand in 30 degree heat in the summer and still have goosebumps, I wear vest all year round.  I’m also fond of a scarf  gloves and a hat.

Fourteen.  Orthotics / braces… These are hidden in my shoes, under my jeans.  Unless something visible like my wrist or thumb was braced you would never know.  There was one time this year my ankle was in fact braced as it was subluxated and wouldn’t relocate.  A mum at school spotted it and questioned if I was wearing a tag!  What she didn’t notice was the excruciating pain on my face as I had to bare weight, I have learnt to hide it so well.

Fifteen.  Tight clothes… Skinny jeans aren’t a fashion statement for me they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints.

Sixteen. Eating well… Eating small regular meals helps me to manage a whole host of gastro and autonomic symptoms as does eating gluten free.  If you went out for dinner with me would you know by my choices?

Seventeen.  Being vague with arrangements… This is another one of my coping methods, I can never tell how I will be feeling from one day to the next let alone a week or two in advance so I tend not to make definite plans unless I have to.

Eighteen.  Linking arms with a friend… To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky; slippy leaves, a wet floor or if its icy.

Nineteen.  Friends… Making time for a regular cuppa with friends to chat about anything else but Ehlers Danlos, health and hospitals.

Twenty.  A sense of humour… This is so important when faking being normal.  Being able to laugh at yourself and having the ability to look back on situations that have happened with a smile (because there are many) is a must.

So when someone calls me a faker in a way the are right, I have become a master at concealing my EDS symptoms in order to just live.  I choose when to talk about what is going on for me and when not to and who needs to know that information about me.

What I’ve learned is that my conditions are a part of me, they are not who I am.

They deserve their space in my life in order that I can manage them effectively but they are not all that I am. I put many things in my life over and above chronic illness symptoms and disability and that ensures that it is kept in perspective.  I’m a mum, wife, coach, educator and advocate – I love to draw, to write, to read, to eat in fancy restaurants and enjoy time at the local pub in front of a roaring fire.  I love the sky and all its colours and to watch the sunrise with a nice cup of tea.  Absolutely all of these things consume my thoughts before chronic illness gets a look in and that is key to living your best life even with an illness or disability.

The original version of this post was published on My Stripy Life and was picked up and published on The mighty Site you can check it out here and my other published posts.

Here are some of the comments on the post…

Sounds exactly like our daughter who is 16 years old. I sent it to my husband and if he would have not known it was written by someone else, he would have thought our daughter wrote it. Thank you for sharing. Having a child who as EDS has not been an easy feat lately, especially, when she is also a teenager. It is nice to know there are others who have experienced the same exact symptoms as she is currently.

The first week it went up it was the most read post on The Mighty Site.

Please share your thoughts below – others would love to hear. Be Mighty!

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