We did it!

Big things are happening in my life at the moment and it's an odd sort of situation where I am moving forward yet have this lingering grip of pain holding on for dear life! When I consider what my body is going through at the moment the reality of that is so far from what is going on in the rest of my life it's unclear how to match the two up!

The week before last the local paper did a story featuring the album launch and my illness. It was nerve wracking doing the interview because I so rarely talk openly about the reality of living with Hypermobility Syndrome but I felt I owed it to everyone diagnosed not to down play my symptoms and just be really honest.

The paper did a great job in captivating my general positivity but were also very to the point in writing about the symptoms. I was really pleased with the article. It was a good message.

Then after that Steve and I went off to the local radio to do an interview which will be aired today. They are also going to play a song off the album too. There are no words to describe how wonderfully surreal that feels!! A song I jointly wrote and performed... on the radio? WHAT?

 It feels like everything I have 'been through' has been bringing me to this place. I am under no illusions that the struggles are over but I feel like I have enough strength in me now to soldier on.

Gosh that sounds so incredibly cheesy but something happened Friday night during the gig. I feel like I came home. I don't like to focus on the negative things but it's not been the easiest of lives! I've always had this strange sense though that in the end it would all work out, that I had a 'something' to fulfil. I've never felt like what I was going through was by any means the meaning of life. I guess I have always rest assured that things could and would change and retained this sense of 'Clo' that keeps me silly and positive and determined. I still couldn't tell you what the purpose of my life will be (I've never been very good at knowing where I'm going!) but I feel like I am on the right tracks, I believe when the time is right it will be revealed to me. I have to pay attention to what is being said around me and people are buzzing. Something is shifting.

I don't really know if I can put Friday into words, Nor can I ever write truly how much I appreciate the work of everyone involved to make the night happen!

We were able to portray how well we've all gelled in the rehearsals up on stage and from what people have said we knocked it out the park. The response from people has been overwhelming. My sister said 'Tonight you became the person you were always meant to be', another friend commented 'I've never seen anyone so relaxed on stage before'. My parents were beside themselves with pride. It really feels like something special happened Friday. It completely smashed all my expectations of how well it 'may' go!!

I feel like this whole experience has helped me learn to manage my symptoms better.  I think I've reached a new level of listening to my body and taking cues from it. I am getting better at putting my body first and when it needs rest I rest. When it seems a soak in the bath will help I get in the bath. I may have finally realised how to live successfully along side it rather then seeing it as his absurd 'thing' that just hurts me all the time!

So symptoms update;

Still being sick if and when I attempt solid food.
Pain in my oesophagus when I swallow, sometimes this even applies to water (ow)
Back ache, oh the back ache!
Thumb on my right hand is really swollen at the minute, I must continue to persevere with the turmeric tea!
The middle finger on my right hand seems to have improved somewhat ,in terms of movement.
Hips, well, they are my hips, how do I describe my hips? Clicking, popping, dislocating and very sore. I've discovered a very hot wheat bag in the groan is helping with the hip pain. Possibly because it's burning hot on the skin so takes my mind off it but hey... it's a break!

I am juicing loads which is having an amazingly positive effect on my fatigue! I am also drinking turmeric tea a few times a day and I must say I do think it's beginning to have an effect on my 'bone' pain. The constant ache in my joints does seem to be more manageable. It's less invasive on my mind.

To look after my voice (which is a muscle after all) I am singing everyday and drinking buckets of lemon and ginger.

 In terms of what I put into my body I think I must be the healthiest person I know. I cannot imagine how much worse my symptoms would be if I was inactive in the 'fight' against the syndrome. I don't like the word fight, some day it feels like a fight but I don't want it to be a fight. I want it to be a courtship. Where we politely acknowledge each other but don't dictate each others fate!

Off to London for hospital appointments this week, I normally find it so stressful but instead of going there and back in a day we've decided to go up the day before stay over night and then we don't have to get up at lord knows what time of the morning!

I'm not sure we will learn anything new from these appointments but we'll see!