You know you have EDS when …..

As this is the last Monday in May this will be the last post on a Monday dedicated to EDS. Thats not to say I wont ever write about EDS again on a Monday it just won’t be a deliberate act!

 

On many of the groups that I am part of on facebook every so often someone starts a post along the lines of “You know you have EDS when…?” and others are invited to take part and effectively fill in the blank. Its always prefaced with “lets make this a positive post” or “just for fun” , I find this highly irritating. EDS seriously affects me and impacts the way I live my life from the moment I wake from the moment I sleep. I struggle to find anything remotely funny about having this condition not because I am an old sour puss but because I think these kinds of posts trivialise other peoples suffering.

 

I am not saying that I never laugh about the craziness that EDS has imparted on my life its just those laughs are few and far between.

 

I accept that EDS is a syndrome where people will be affected to a greater or lesser degree. However some of these groups are mainly people who are on the lighter end of the scale and when others start talking about the more serious side of EDS like wheelchairs, gastroparesis / intestinal failure or multiple dislocations they are told that they are scaring people for telling them how EDS affects them. Its a poor show when you can’t be supported by the community you belong to.

 

For EDS awareness month a UK EDS charity released a short video highlighting some aspects of EDS. It showed a gymnast showing off her flexibility by contorting into various positions and it also showed some teenage girls who were being fed via a nasogastric tube. On one of the groups this was heavily criticised for being unduly negative about EDS. I thought it was well balanced but I guess some people like to live in denial, that the bad stuff won’t happen to them. They themselves are guilty of not accepting this is a syndrome which affects individuals differently.

 

So I am going to give you my version of “You know you have EDS when ….” and hang the consequences! 

 

Warning this post is dripping with sarcasm!

 

You know you have EDS when despite sleeping on a memory foam mattress with a maternity pillow and special neck pillow you wake up feeling like you slept on a concrete slab. Every joint is stiff and sore and depending on whether or not my stomach is working, the painkillers I have just taken may or may not work.

 

You know you have EDS when easily getting down on the floor ends up taking 45 minutes to get back up. Its become such a regular occurrence in this house that I am now banned from getting down on the floor without supervision. The last time I got stuck on the floor I was there for over an hour. My arms wouldn’t take my weight pushing me back up and my legs were refusing to cooperate. It wasn’t remotely funny because yet again it showed me how much my body has declined in the last 7 years.

 

You know you have EDS when you can dislocate your hip rolling over in bed or dislocate your shoulder by flicking your hair out of your eye. My hips can and do pop out with tremendous ease along with my shoulders. If they don’t fully dislocate they will sublux (partially dislocate) leaving me with a horrid grinding sensation in the socket of the joint.

 

You know you have EDS when lying on the sofa not moving you hear a loud pop and you know that is a disc in your back. You daren’t move because you know what kind of pain its going to cause. Instead you lie still in the hope whatever made the pop resolves itself.

 

You know you have EDS when the pain is so intense you can’t even stand the dogs gently knocking you and you have a massive sense of humour failure.

 

You know you have EDS when you lose a stone  (14lbs for those of you in the USA) in weight in 3 weeks because you can’t eat more than 6 jacobs cream crackers in a day. Any more than that and you are projectile vomiting so hard you start to bring up blood.

 

You know you have EDS when despite not being constipated and knowing that you need to go for a poo your muscles won’t coordinate to get the damn thing out. You resort to all sorts of weird things to encourage the muscles to wake up but nothing happens and it gets more and more uncomfortable. Later you feel like you have given birth to what is termed in this house as a “Poo baby” as it feels like you have carried it inside you for 9 months!

 

You know you have EDS when you randomly choke on your own saliva. There is some argument that the issue with swallowing could actually be down to dysautonomia rather than EDS. It doesn’t matter I am still a world champion when it comes to this!

 

You know you have EDS when you have more supports / walking aides  in your house than the local chemist. Wrist supports, knee braces, crutches, walking sticks, ankle braces wheelchair and frames. I need a whole room in my house just to accommodate all the things I use on a daily basis to help with pain / mobility.

 

You know you have EDS when daily from 3pm onwards you are trying to work out in your head how early you can get to bed without annoying the husband. Exhaustion / fatigue is a real issue for people with EDS. It is estimated that due to our lax muscles, ligaments and tendons we can use as much as 5 times more energy than normal folk just doing the basic things like standing, walking etc. The fatigue we suffer isn’t cured by ” a good nights sleep” ( you don’t sleep very well with EDS), it is constant and crushing. Some days you spend the whole day in a fog and other days it just creeps up on you during the day.

 

You know you have EDS when sleeping in ill fitting nightwear causes bruises. I have slept in an oversized t-shirt before and ended up with arms that were black and blue due to the material bunching up and pressing on my skin.

 

You know you have EDS when you can not walk through a door without smacking into the frame. You can not miss an opportunity to get your fingers caught in drawers or doors. You poke yourself in the eye flicking your hair out of the way! EDS sufferes struggle with Proprioception we can not identify where our body is or joints are in relation to other objects or even other parts of our body. We are often thought of as clumsy due to our constant tripping over our own feet or walking into things.

 

You know you have EDS when in the height of summer you have a hot water bottle or heat wrap clamped to part of your body.

 

You know you have EDS when you have to write a list like this!

 

Thanks for reading!

 

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2 thoughts on “You know you have EDS when …..

  1. I chose to go back in to your archives and I read this particular post. I am by no means laughing at your struggles but good lord you make me laugh. What you go through sounds horrid, yet you write in such a way it pulls you in. I can relate to the sleeping issue on a different level. As I lie here I am next to my maternity pillow, I have a few other pillows and a neck pillow that is a stuffed pig with lavender inside and can be heated up. Who knows what the night will bring or if I will feel spry in the morning. I completely understand what you mean about people not wanting to see the entire picture of a disease, illness, disorder or syndrome. What you depicted on TV was a good example to be shown. There are varying degrees of illnesses and it is important to see the entire spectrum if you want to be educated on an issue. I am certainly saddened by what you describe but I think your sense of humor will get you through anything. I know it helps me.

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    • Hi Bee,
      Thank you for taking the time to read something from the archives.

      No the post was semi serious but also meant to be funny. EDS can be funny there is no denying that. The post was in response to these stupid threads people kept putting up and demanding everybody was really positive all the time. I was like tell that to Daniel a 12 year old boy I know who is dying from intestinal failure. Tell that to Lucy whose body is slowly failing her to the point she gets respite care, or to Jodie another young girl who is facing having her bladder removed. There are many countless others which these people chose to ignore because EDS doesn’t affect them like that.

      I will always try to find something amusing from an event no matter how sad that event is. Obviously sometimes I have to keep what is amusing me to myself as it could be interpreted as cold or callous by others. Its not meant to be and its just what keeps me going when things are dark.

      I am lucky that hubby shares the same sense of humour and if I can’t find the funny he will. He will make me laugh and make me see that I can go on and it is temporary whatever it is I am facing.

      I also repeat to myself when I am in hideous pain, “This to shall pass” which I have just googled to find out its from medieval writings of a persian sufi. See you learn something every day!

      Thank you so much for taking the time to go back and have a look at other posts. May I suggest Chronic illness and friends (I think its called!), Sorry why is it the hardest word for me and Weathering the storm – keeping a relationship strong. They are a couple of the posts I am proudest of.

      Hope you manage to get some sleep tonight.

      Thank you Bee

      Rach x

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