My insomnia has well and truly kicked in this week. I've had two days where I have been awake for 41 hours one day and 46 hours the other! I'm not complaining, I always reach a point with my insomnia that I know I am not going to sleep and a different kind of energy sets in and I feel productive and peaceful. I've made a lot of progress with my other writing projects that I am working on. It has meant though that I haven't had the chance to write my blog.
It's 12.15am now and I beginning to wonder if tonight will be another night of no sleep but I am thinking positively and visualising myself settling down to sleep because we have a really busy day tomorrow.
So, body update! My back has begun to fight for first place in the 'what hurts most' awards! I haven't pulled it or anything it's just really aching and lord help me if I bend over!
My friend came over for dinner Sunday and I cooked a roast with homemade quiche, again I'm not entirely sure how I did it but as I leant over to check the spuds my back was throbbing!
It's definitely not nerve pain. I have nerve pain that runs down the back of my leg into my foot and this is different some how...
I had to abandon this entry last night as Amelia-Rose was very restless on and off for about an hour then woke up utterly petrified because she had had a bad dream poor lamb! She was so upset that she came into out bed and I read her a story because she was too scared to go back to sleep :-( I said halfway through the second story "Gosh mummy is having trouble keeping her eyes open and Tony very kindly took over story reading duties! I was asleep before the end of the story which is good because it was gone 3am and normally 3am is my cut off for sleep!
Speaking of which it is now 2.53am and I am yet to sleep! We survived the busy day but my back and shoulders are in so much pain I can't imagine sleep will arrive shortly!
Tonight though I want to write about something that has grown very close to my heart in the pass few weeks.
It is an online support group exclusively for women with HMS, I am also in a group that is open to everyone with HMS but is fantastic too but this particular group is something else!
I am abundantly blessed with a wonderful family and a great circle of friends yet even so having a chronic illness is incredibly lonely.
Sometimes I feel annoyed at myself because when people ask me how I am I will reply "I'm good" or "Yeah ok", it has become a question that I find difficult to answer! Do I answer in terms of how I am emotionally and mentally in which case the answer normally is "I'm good Ta" or do I answer in terms of how I am physically doing? In which case the answer would be "Blooming awful! My hips have dislocated 6 times, my groin feels like it is constantly on fire (and not in the 'woo o o your sex in on fire! Way!!) I have a terrible headache courtesy ironically of my pain medication and I haven't had a good nights sleep for months!" What do I say?
This support group though, they just 'get it'. We support each other through the worst of times and rejoice in the best. We compare our bendy bits and have a giggle.
It is a place where we can talk about the more intimate aspects of living with limbs that dislocate at the most inappropriate times, something I couldn't even do with my doctor!!
I have learned SO much from these women and I enjoy being able to share my knowledge of life with HMS when it affects your bowel and digestive system.
People can rant about a bad day and receive in excess of 70 comments, every single one wishing the person well or offering support with a sugeastion of how they cope with similar symtoms. No one judges anyone, their is true acceptance. If the same person who rants comes back the next day with news of a good day no one holds it against them and says "well obviously she can't have it that badly because she's fine today!" We all understand that is simply the nature of the disease.
Every day I must read 15+ comments of people saying how much they love the group! It is honestly such a supportive community and I adore being part it. I have finally found a place where I feel like I don't have to worry about how I phrase things or describe my pain because people just get it, they understand, they KNOW how it feels to be me!
I am not sure exactly who set it up but I want to hug her and thank her for accepting my request to join, something I very nearly didnt do!
I am SO proud of these women, they are all striving so hard to get the support they need to thrive at life as oppose to merely surviving! I am inspired daily by their determination to keep pushing for medical help, they're knocking on the doors until they open. No one is giving up!
We deserve to live the best possible lives that we can and their stories are driving me forward to continue this blog and get more people reading it, to aim for the moon and if I don't get there to play amongst the stars!! I feel this burning desire to raise awareness for HMS for all of the people out there that suffer not just me.
I have found my happy place! :-D
P.s I now have new means of recording as I go so will be picking up my YouTube video blogs about life with HMS where I stopped off very soon! I shall be filming my experience of going off for this operation and editing and uploading when I get home! Exciting! It's now 4.05am! Whoops!!
Be blessed everyone. You, yes you are fabulous!!
P.p.s check out my new large meds bag I made myself!! Half cat in the hat half wizard of oz!! It is exactly the same as the P.E kit bag I made for Amelia-Rose when she started school just much bigger! My friend made me a beautiful zip med bag when I was in hospital last time which is awesome for taking out strips of meds and carrying them discreetly but this baby needed to be a big'in to fit whole boxes in! 
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