A month on...

Urgh, I am not in the best of places. It's been a  month now since I found myself in the back of an ambulance on the way to hospital. Although I knew my health had been going down hill for a while I don't think I was really in tuned with how bad it had gotten. Like I could see the truck for miles heading towards me but I didn't get out the way, I just stood there watching but then was surprised when it struck.

I have been in shock I think, and still very much am. I am terrified of what lies ahead. It's a fear that feels incredibly raw at the minute and I need to share and give over to God. It's too big for me to handle alone. Jeez what the jeff just happened? It's funny how it's hitting me now after a few weeks of 'coping' so well!

I had an experience a few days after I was home from hospital, excuse me if I have already written about it, I don't think I have... My husband had nipped into work (to keep them in the loop about what is going on at home) and my daughter and I were home alone.

When he got in Amelia-Rose was going to go in the bath and I suggested that we run a bath and see how high we could get the bubbles as a surprise for Daddy when he got home. I stood up and I still don't fully understand what happened but I lost my vision, completely and it felt like my arms and legs were sort of thrashing, I could feel myself going and I shouted 'NO' just before I fell.

I heard my crutches hit the floor after me in what sounded like slow motion and I could hear Amelia-Rose screaming 'Mumma, mumma' Tony (who had fortunately just got home) ran up the stairs by which time my vision was back and I remember him doing a sort of goalie dance, he didn't know which one of his girls to tend to first. He said to me 'Are you all in' to which I replied 'Yes' (by which he meant had any of my limbs dislocated) and he went to Amelia-Rose, she had hidden under the pillow and was still screaming for me, he tried to comfort her but she was having none of it, she wouldn't come out from under the pillow. As petrified as I was I tried to soothe her and tell her I was ok and that it was all over.

Amelia-Rose and I were talking later and she told me two things 1 "You shouted so loud I was so scared you shouted at me" and 2 "I didn't want to see Mummy get hurt" The thing is I did shout like I meant it, like I was shouting NO... I am not ready to go yet. I honestly thought I was going to die. Doesn't that sound dramatic but it's true. I really did. I felt like that was it, I was going and I remember thinking in those seconds 'God I don't want Amelia-Rose to see me die' and 'I am not ready yet' and I shouted, with everything in me 'NO'.

I think the force of that no did scare Amelia-Rose (mainly because we don't ever really shout) and I feel bad for that but maybe one day in years and years and years I will tell her about the time I thought I was going to die and she'll remember how I shouted no with such conviction and she'll know it was because I wasn't ready to leave her. I am not scared of dying, really, but I am not ready to go. I'm not done yet.

I had a really crap 'brain fog' day yesterday and it made me really tearful this morning, everyone keeps telling me it is good to get it out, to let go of it.

It's funny I can't get beyond this memory of when we moved to Stanton, I was what 12? I remember feeling so full of excitement and hope like the new house was such a wonderful place to be. It was the beginning. I don't know why I am stuck there in my thoughts but I very much am.

The other thing I cannot get over is my immense feeling that I am being called to Canada. Like I NEED to go there. Don't ask me why, but again, I cannot get over it. I can't suppress it. It's no secret that I have always loved Canada, it is my happiest of places. When we use to visit oh man would I cry on the way home, and I would sulk for weeks inside afterwards! It was the place I felt so at ease. Maybe that is why? It's been a pretty traumatic few weeks, maybe I am being drawn back to this place because it is where I have found great peace in the past? The knowledge that I can't go is making me really sad.

I've got two appointments in Poole hospital next Monday, and then appointments in London the following week. I am not sure I am well enough to travel to London but Tony really thinks we should go. One of them is to go and see a new consultant that I have been waiting to see for what feels like forever. It will be a really long time before I can see him again. I just don't know if Amelia-Rose is ready to be left so soon?

I've been praying for Amelia-Rose this week and tonight has been the first time for a long long time that I actually prayed with her.. out loud. She was so restless last night, we were talking about it at bedtime and she said she doesn't remember crying a lot last night but she 'knows she doesn't like bad dreams.' I spontaneously asked her if she wanted me to pray for her and she said yes and so I did, I put my hand on her head and prayed out loud for her. It was good.

I have started organising an awareness event in May as may is Hypermobility Syndrome and Ehlers Danlos syndrome awareness month.

I have got in touch with musician friends and am hoping to do a coffee morning but with great music and hopefully some craft stalls.

I am also working on a project called 'This is what Hypermobility syndrome looks like' My goal is to help people recognise that this is fundamentally an invisible disease. I have asked for accounts of what living with the disease is like to contrast with how 'normal' the photos look. I am hoping it will be a really powerful display. One I will also showcase on my website after the event. I feel so passionate about spreading the word about this disease. To raise its profile so that hopefully future generations don't have to go through everything current sufferers do.

 I am part of an online support group and it amazes me when I read so many posts from other people that I could have so easily written myself. It is so affirming for everything I encounter. Sometimes the physical symptoms can be so broad and random you genuinely start to wonder if they really are there. I log on to the support group and as I read think 'Yup, it's not just me'. That feeling is priceless but wouldn't it be amazing if it wasn't just online. If more 'well' people were able to sympathise because they knew what the disease was. You weren't just met with a glazed stare when you spoke about it. Obviously I don't begrudge people for the stare! I'd never heard of it but I want to change that!

I believe I am in for a rough for days as I am getting the 'monthly grumbles' in my tummy, they keep gripping me, reminding me of what is to come. I'm not looking forward to it I must admit! Last month was actually bearable but then again I was hooked up to a morphine pump! I WISH you could be prescribed gas and air at home. Just to have something to get me through the contractions. I guess there must be a reason that they don't but man it would help!

I've really rambled on today haven't I!

Blessed be x