When your body says no

This is something I am really having to learn to live with. I thought I was very good at listening to my body and taking signs and signals from it but of course that was before my body stopped doing what I wanted it to do! It's easy to think you're working well with something, well as long as you're getting your own way! How you deal with it when it stops going your way, well, that is the measure of a person!

So, uncomfortable truth time. My mind and my body are SO disconnected now I actually refer to my own body as if it belongs to someone else. 'It' rather then 'I', 'my body feels' rather then 'I feel'. I am the stubborn child sitting on the floor with my fingers in my ears singing 'LA LA LA I'M NOT LISTNING' I have no relationship with my body and I am having to try really bloody hard to rebuild the scattered fragments that were once 'oneness'. Are you still with me?

I never considered that one could feel detached from ones own body until this all started but alas you'll have to trust me on this one. You know, a lot of hypermobility syndrome patients actually refer to their own bodies as the enemy!

If you asked me to describe my body to you I would say "It's unreliable, it hurts me all the time, it never does what I need it to do and quite frankly I don't trust it anymore" Lets face it, if I was telling you about my new boyfriend you'd tell me to leave him pretty quick!

Can we just get this one thing really clear. This is NOT a self esteem thing, this is not "I feel fat and ugly and I hate my body, look at my minging stress marks" This is "My body works against me and I don't want to be it's friend anymore!"

Example time, lets talk Subluxations. Oooo it's a saucy word isn't it? "Subluxations" Go on, say it out loud a few times, it's a good word to get the mouth round.

Do you know what it is? It is a partial or incomplete dislocation (sexy!!) and let me tell you, they aren't comfortable!
 
My husband and I had a giggle the other night because I got out of bed put my feet on the floor and four of my toes 'went', I stood up and my ankle went, I walked to the bathroom and my knee went, I sat down my other ankle went and then in a grand finale my hip popped. I was literally making music with my body. It was 8 subluxations in about 3 minutes which is quite something even for me. Each one needs tempting back into socket but it is a great example of exactly how unstable my body is.

Why... why would I trust such a thing!

If I wake in the night or in the morning before I get up I do a bit of a mental check list to feel where my joints are (they are always where they are meant to be!) sometimes it's a case of a click here and a click there, a click this and click that and I'm ready to get up. Now, I've done this for probably, well, since I had my daughter, it was just normal and I have been popping my hips and thumbs all my life. I've never even considered that this isn't the 'norm' until I saw it in a video created by another HMS sufferer.

I had my nephew on my lap the other day doing the auntie gig and out of nowhere my rib popped out, I'm not entirely sure (being blinded by pain) how I secured him  ('him' being my GORGEOUS nephew) on to the lap of the woman sitting next to me but I did and somewhat frantically tried to relocate myself whilst trying not to A: Make a scene B: Make anyone who was aware of what was going on reacquaint with their breakfast and C: Puncture a lung.

I have no control over these little (Little she says!) subluxations and it doesn't really make me feel like my body is to be trusted. Although the pain is insane I know what I have to do is remain calm and relocate it  but it can be really hard when you're in a shop and drop something, bend down to pick it up and semi dislocate your hip (for one thing it makes quite the clunk) "And breathe through the pain, wiggle the joint back into socket and try to calm down the members of public around you who have twigged what is going on" Awww, it's a laugh a minute!


 So that begins to explain why I don't trust my body but what other factors are there in this disconnection?

Well, I can have the most wonderful plans (like going to a civil ceremony of two wonderful friends that I have been looking forward to for months) and my body will just not calm down. Things that don't normally swell, swell, the pain just buries itself deeper and deeper into my joints and muscle fatigue makes me feel like I've put on 20 stone in my sleep. My body doesn't care what my plans are if it's going to have a flare up there is nothing I can do but surrender to the 'comfort' of my bed and sit. Oh also, as wonderful as a day or week in bed sounds to you this is absolutely not the same thing. I know every busy mum out there would do just about anything for a day in bed but please believe me I want your health and ability more then you want a day in bed.

Today I have had to spend nearly all day sat on my bed excluding: washing my daughters hair, preparing lunch, putting some washing away and preparing tea. All the activity was almost at breathe taking pain levels but oh my LORD I want to be able to 'do' and 'be' and just have a normal day! (Not that I can claim I have ever been acquainted with normality but that's a whole other story!)

It dawned on me on Friday that I don't remember what it is like to walk without crutches. Sure, I can do a few paces but I mean to like, walk into town or 'go for a walk'. If I close my eyes I can see myself doing it but I can't really remember what it feels like.

It's really hard not to resent something that takes away so many nice things from you. Even if that 'thing' is your body!


Anyway I am trying to heal the rift between body and mind but there is no cure for hypermobility syndrome so this is going to be a relationship I am in for the rest of my life. Like it or not!

I honour my body with what I eat and drink and am actually very particular about nourishing myself  but this is more then that. This is what my body gives back to me.

So I guess, in conclusion sometimes my body just says no and I have to learn to say 'Ok... you win'