FAQ: What does it feel like?

Screen Shot 2016-07-04 at 3.19.43 PMThis was a question that I would never have thought of. When I was asked it I had to think a little as it is the one question so far that no one else has ever asked me. I am still getting my head around the fact that what I have lived with my whole life is not everyone’s “normal”. Have you ever rolled an ankle? Sprained it maybe? Or sprained your wrist? At a very basic level that is what it feels like. And after thinking on it that is the closest I could get to how it feels but the person who asked looked at me blankly and said “no”.

No??? What do you mean no, you have never ever sprained anything? … and she said no. Hmmm. I don’t think that I have ever had a day in my adult life that I have not sprained something. It might be a finger, a toe, a knee, a hip, an ankle or a wrist. I blamed my busy lifestyle, the fact that I do (did) much of my own building and the fact that many days I held a paint brush, a hammer, a drill or a sewing needle in my hand for hours on end, days on end. I blamed bad shoes every time I went sprawling across the footpath, walked into a wall or a door, or smashed a hip or a knee into the corner of a piece of furniture. I also thought that everyone else did these things on a regular basis as well. So I learnt something knew from this question: some people never sprain anything? I am truly shocked!! So if that is you then I am sorry that I don’t know how to explain what it feels like any differently.

Spraining something is different to being hit which is a deep dull ache, or cut which is a sharp kind of pain. It isn’t like healthy muscle pain after exercise either. Tendons and ligaments hurt more in a twangy kind of pain. It is deep like a bash but sharp like a cut and it kind of makes me feel a little ill in the tummy like when you hit your funny bone REALLY hard.

That is basically what happens with my joints and they can take up to two years for a bad one to heal, never for a few to heal and small ones a week or two.

Less often I “pop” a joint which usually means that it pops out of place (technically called subluxation which is partial dislocation) and that is also the same kind of pain but it hurts a TON more and often takes my breath away. Sometimes it pops back in a few hours later, other times a few days later, and the residual pain is similar to the sprained pain with the same long lengths of healing.

The muscles pain is hard to explain. Have you ever shivered a LOT for a long time? My muscles tense to compensate for my floppy tendons and so at the end of the day they are exhausted. A good hot bath relaxes them and takes most of that pain away but when we have no water, electricity or no bath then I have a really rough night.

That’s what much of it feels like in a nutshell…

 

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10 thoughts on “FAQ: What does it feel like?

  1. I swear you sound exactly like you have been walking around in my torturous EDS skeleton. Perfect way to describe it! I myself woke up today with a “sprained” ankle. Hope all is as well as possible.

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    1. LOL … You spend your life thinking the pain is “normal” then that no one understands … Then suddenly there is this community of people who we think live in our own bodies!! How validating for me as well as for you … It’s crazy how similar we are even though we are also diverse … Bitter sweet to have fellow zebras on this journey πŸ™‚

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      1. Yes, so bittersweet. To have a rarely diagnosed condition sometimes feels so lonely because others cannot relate. Then to know that someone else, another soul, has felt the suffering from it and can relate just makes it sadder.
        I have asked my husband to read some of your writings in the past and he was able to understand a little better of what it feels like. He really is a rock and will pick up the slack when I have days where I just hurt and need rest. I know it must be difficult for him because the EDS is so unpredictable.
        Some days it seems as though I am on a tightrope and not sure if the next move is going to be my undoing. Some days I can really move along fine.
        Well, if nothing else, I can definitely claim to be unpredictable. Personally though, I wouldn’t mind being boring and plugging along steady as she goesβ™‘

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      2. You explain things so well too! When ever you comment I read nodding my head πŸ™‚ My husband is also learning to be amazing … He had no idea how bad I was for over two decades mainly because I didn’t know myself. I thought I was normal and so never complained because no one else did. We couldn’t work out what was wrong. We were both frustrated at all the “sprains” and doctors and splints and scratching of heads blah blah blah and kept thinking each damage was a one off accident … Now at least we know and it makes sense and he’s my greatest ally in so many ways and he is the first to tell me to rest, and which days are wheelchair days and he is not embarrassed of me one bit. He feels sooo bad for all the years I kept trying to pretend I was normal and carrying much of the load while he worked hard on his career and sports … But he is doing an amazing job now 😊

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      3. Thank God that he gave us good men. I pray I never have to survive without my husband and I know you feel the same.

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  2. Your hubby was always fantastic! I’d be surprised if you were to write anything else about him!

    I remember that when I first met you, you broke your toe a day or two later. It was when we were doing all that cooking at church. I’m so glad you know why all these things happen to you now and that you have one of the best husbands in the world!

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    1. To be fair, he was in many ways, but we both grew up in homes were being sick was not an option, and in his words “he was conditioned against illness”… Yes my toe turned out to be Eeds related and only makes sense now why it took over 2 years to be able to wear anything but Croc knockoffs, but the patience wore after after a week or so and he was neither tolerant nor kind through it all (or any of the other health traumas over the decades). I do feel bad for how guilty he feels now and he is working SOOO hard to make up for it. He is the most wonderful man on earth but fabulous about my health was sadly the furthest from the truth …

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      1. I’m glad that he is more supportive now. You were always such a great example of a married couple to those around you, and I’m sure you continue to be.

        You are in our prayers, love you and miss you both!

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