We have a fairy!

I got up and started cooking for the birthday brunch at 7.45am Sunday. I really wanted to make it special for my hubby and put my heart and soul into that brunch! It was a real feast! My parents and sister came too and we had a nice time.

I had a really late night Saturday night because I was baking the birthday cake and then getting up and getting going so early almost wiped me out by the time people were arriving. I was beyond putting a front on. I really did my best but man, the pain was off the scale! When my hip pains get really bad it creeps its way in to my lower back and feel like someone has slammed a vice either side of me and is crushing my back.

After brunch the three of us played some games and after that I took our daughter into the kitchen to make a fairy house.

Saturday afternoon I was called into the lounge and our daughter had built a little structure with a strawberry dangling off it and I lovely sign that said 'Fairies welcome' and she asked me to write . Please write you name here' and we left it out.

Sunday morning before she came downstairs I ate the strawberry and wrote in the tiniest writing 'Arabelle' and oh my goodness she was beside herself!

Her sense of excitement was enormous! I had an old box which we turned inside out and then we got to decorating it.

When we do crafts I let A-R take the lead to encourage her own original creativity, I was blown away with some of her ideas for the house! She decided that she wanted to stick a toilet roll on top as a chimney but wasn't sure how to attach it, after a few minutes of looking at the materials she had to hand she declared she was going to stick some tissue paper underneath the bottom of the toilet roll and wrap it upwards so there was a flat base to stick to the roof. I was very impressed! I don't know if I would have thought of that! I was thinking we could stick it on with cello tape some going up the tube and some down on the box.

Arabelle left her another tiny note saying thank you for her wonderful new home and said she would like to bring her a gift from fairyland so I bought a small crystal today from one of the shops.

We live in a society now that doesn't seem to openly encourage children's imaginations anymore. Most of the toys they get now a days are so realistic it leaves no room for 'playing pretend'. I think there is a certain sadness about that!

Children should be encouraged to explore their wonderful imaginations, to see their world the way they see it and not have that stamped out by a logical society.

We are off to London AGAIN tomorrow for another hospital appointment. We will go up from train tomorrow and come home by train Wednesday evening which will probably wipe me out for the rest of the week.

I had some more appointment dates arrive in the post today. One of which is for surgery which has immediately made me feel very anxious! The last stay in hospital I had was horrendous, there is no other word for it! I have 100% faith in my consultant but the idea of being even further from home then I was last time (almost 5 hours) and once again having to travel home days after hip surgery fills me with dread! I am going to look into getting patient transport, last time I travelled home in the back of the car (after fairly major hip surgery) and whilst I don't remember much of the journey (because it was so traumatic) Tony said I wailed and grunty screamed most of the way home. All I remember is biting the head rest! Every turn, every stop, every acceleration and bump in the road sent pain ripping through me.

I also have no idea how we will pay for it. Obviously the hospital bit is free but it will mean Tony has to stay in a hotel the whole time I am in hospital and will need to eat out etc. I couldn't bare for him not to be  with me. I know I would find it incredibly difficult to know I was in London completely alone but of course London hotel prices are not exactly cheap! I think I would also want to take A-R up with us which would mean taking my mum too so she could watch her when Tony was up at the hospital. I think it is important for A-R to be able to come and visit me rather then like last year us going off for what we thought would be two nights and being gone longer then arriving home in a much worse state then when I left! It is all extra expense though! That would mean two hotel rooms and of course taxi rates to and from the hospital every day. Maybe even twice a day and let me tell you London cabs are not cheap! The week before last when we were there it cost us £30 for a 3 mile trip because the traffic was so bad.

I've just got to hand this one over to God and trust something will come along to provide for us. The constant up and down to London (although we get our train money back) is really hitting our budget. We're suddenly having to find almost £200 extra each trip we make to London and this month we've gone twice. It's robbing Peter to pay Paul!

Still, we are blessed to live in a country that has free healthcare and I will never take that part for granted!

Signing off now! I had a really restless night last night and it feels much later then it actually is!

Blessings all x

To the one I love

I tell you everyday, several times a day that I love you and yet I don't often share what that means to me! 'I love you' is a statement we make to each other all the time and in those words so few we say so much.

The first time I met you something deep within me knew I had found my match. You were the missing piece of the puzzle. I knew I would spend the rest of my life with you. It wasn't part of my plan to fall so completely in love so young and we had a lot to prove but I would never be without you now!!

We grew together. There we were, two peas in a pod who, for all intense and purposes should never have worked. But we did work and we still do. You are my blessing.

Through your love for me you taught me to love myself. You cared for me and nurtured me, you made me laugh like no one before you could, you make me laugh so much my face hurts! You pandered to my goofy side and laughed at me as well as alongside me! You made me so proud to have you as my own.

 Our spirits became so entwined that I am still uncertain where I end and you begin.

One sunny spring day with the realisation a certain something I had been waiting for hadn't arrived I pee'd on a stick! Imagine my frustration as I waited for 7 hours for you to get home from work so I could share our news. What a shock. What a wonderful, blissful shock.

We were to be parents!

Of course our world came crashing down when we were told that we would never meet our little creation. You took the week off work whilst we waited for the pregnancy to end and never before has someone else's silence spoken so loudly to me. We were sad to the core and yet we never turned on each other, this was a battle we would fight together.

Thank goodness we did because our little mass of cells defied the doctors and never left, in fact, it grew as did my stomach! A baby girl was on her way.

What next, where was our journey going? We spoke of marriage and before I knew it I was planning our wedding! What a beautiful two days they were! Only you and I could manage to make a wedding celebration last two days! I was higher then high, my heart sung constantly for those two days. As we made our vows together our baby danced in my tummy the whole time. As if she was celebrating our union with us!

The last few months of my pregnancy on reflection, well, I can only salute you for dealing so well with those darned pregnancy hormones! I remember you laughing out loud one day, your silly belly laugh at me as you hugged me and comforted when I cried 'because I didn't know why I was crying' You never belittled me or made me feel unreasonable you just quietly walked along side me as I got larger and larger!

When I spoke of hypno birthing you never laughed at me, you never told me I was crazy! You stood behind me 100% as I prepared my body for the biggest event my body would ever encounter!

I remember the night I went into labour like it was yesterday. We were sat in bed and you'd made me my favourite late pregnancy treat... honey on toast. I felt an electric spark rip through my tummy and jump out of bed in alarm, I got back in bed but as soon as I settled again I had another electric shock!

It was such an odd sensation I remember laughing, and you laughing at me. It was you who suggested that maybe I was actually in labour! The contractions came thick and fast from that first one! You ran me a bath and massaged my back as I sat like a walrus in the bath!

In the third hour I felt like I needed to leave for the birthing unit. You comforted me through my disappointment because I felt that I needed to go in so soon into my labour. It had been my intention to do at least half of the labour at home. Little did I know I was over half way through! Our girl may have been 14 days late but when she was coming, she was coming!

The only experience missing was the infamous waters breaking! I don't know a pregnant woman who doesn't fear them going in public! We left the house at just after 1.30am and didn't hit a single red light! You spoke calmly to me on the small journey and Take That's 'Today this could be the greatest day of our life' played on the radio! To this day when I hear that song it sends me back to that little red car and remembering to breathe!

 When we arrived at the unit you held me hand as I was examined by the midwife, we were over three hours in now and the contractions had come every 2 minutes from the first one, it was intense but I never felt scared.

 After the exam you lent down to put my slippers on and bore the brunt of my waters! The look on your face! 'Aarr... nice' you said as I laughed at you! I couldn't have planned it if I had tried! After the clean up you bent to do the other slipper and got the second wave! I know you believe you wouldn't have luck if you didn't have bad luck. Bless you.

You were so calm and collected and supported me every step (or should that be push) of the way, in fact, you were so calm the midwife was happy to let you take control, she even thought you were a midwife! You were so content in your role of cheerleader.

In the last hour just as my body was ready to push I told you I loved you and the midwife said she had never heard a woman telling her husband she loved him so far into labour. But how could I be angry with you when what we were doing was so amazing, this was the beginning of our family and all I felt for you was love.

The moment Amelia-Rose came into the world I looked into your eyes and have never seen someone in such ecstasy! From that instant I knew she would be a Daddy's girl. In the years since my heart skips a little beat when you call us 'Your girls' . It makes me feel so protected, I know you will always do everything you can to provide for us in all aspects.


You are every bit the father I knew you would be. In first weeks of Amelia-Rose's birth you catered to my every need, even the ones I didn't know I had! There was endless cups of decaf coffee and toast... do much toast! I didn't have to do night feeds alone in those first few weeks, you would sit awake with me even though there was nothing you could do just to keep me company and to spend extra time watching our gorgeous baby.

You adored Amelia-Rose and that adoration made me adore you even more!

When we relocated to Dorset 10 months later and you continued to work 2 and a half hours away for 24 hours three of four times a week I cannot lie and say they were easy months. We had some pretty big cracks which on reflection I think were caused by the unrest of you being away so much, it was easier to bicker then to miss each other  and we came close to losing everything we had together. In that time you taught me you could love someone unconditionally but not always like them very much! 'o)

 We knew we had to walk away or try to heal... thank god we stuck it out. We talked and we listened, listened and we talked.

There was much to be rebuilt but we did it and what we built this time was even stronger then before. We learned so much about each other in that time and one thing was clear, When it came to our future we were resilient and we were both in it for the long run!

Seeing you interact with Amelia-Rose makes my heart swell. You worked so hard so I could stay at home and be a full time mother, you found a job more locally so the commute wouldn't be an issue anymore. When money got tight and I considered looking for a job you were insistent that it was your job to financially provide and it was more important for me to enjoy the special young years. The years you can't get back as much as you try to slow them down! That gift will always be priceless to me and I don't thank you enough for such a glorious opportunity.

When I got sick you instantly took over all the house work without ever being asked to do so. Of course then we had no idea what a long road we were on but your constant support never wavered. You let me feel everything I needed to feel and never once belittled what I was going through. You gave me strength and I never heard you complain. Not once. I still haven't even almost two years on!

As I lost myself you kept hold of me. As I grew snappy and quick to tears because of the pain I was in you didn't hold it against me. When I felt angry and was rude to you, you would absorb it
 without mimicking my behaviour. Even before I couldn't see it in myself  yet you could see that I was grieving. As I struggled to find the words to describe what the pain was doing to me you were always one step ahead. I have never known loneliness like I experienced in those months when I was housebound but I was never truly alone. You were always there.

You insist I wake you up if I am in too much pain over night just so you can sit with me and if I don't, but you can tell it has been a rough night you tell me off! So intent on me not going through this alone.

Although I have struggled adjusting to being 'disabled' and the impact that has had on my confidence you let me know everyday how beautiful and sexy you think I am. Everyday. Without fail. I am so abundantly blessed, rest assured I do not take it for granted. I know everything I have achieved in the past two years I couldn't have done with out you. You enable me.

I know it can't be easy living with me when my pain is at its maximum level, I am grumpy and get upset over silly things but I am never angry with you. I am never frustrated with you, it is never you that makes me cry. I wish I could be the woman I was before, so rarely ever grumpy! I will get to that place again, it won' be the same place, we cannot go backwards but we will go forwards, to a place we can't even dream about. We are learning together how to live with this illness and I know things will get better, I will learn to manage it better. We will learn to manage it better.

When I say I love you I don't just say the words. Those words are filled with every laugh, every inside joke, every night, every morning, every tear, every experience, every day, every road, everything we have gone through together and an excited spark at what is yet to come.

I love you Mr L.

A week on already...

I can hardly believe that this time last week (9.24pm as I write) we had just gone on stage for our album launch gig. This week has flown by in a blur and I'm convinced it is Tuesday or Wednesday!

I am thrilled to have Amelia-Rose home for the whole week  (school break! Yahoo!) but I feel a tad under prepared!

I normally make sure I plan lots of things to do for school holidays but so far I have nothing up my sleeve! We were talking at bedtime about what she would like to do and so far we have that she'd like a write a 'proper book',  make up a story and do the pictures etc. then she asked if we could laminate it and tie it up with ribbon so the pages don't fall out!

 I adore how drawn Amelia-Rose is to English, she loves writing stories, poems and 'songs'. As a little girl I LOVED English as a subject. I've always been drawn to how one can express oneself through the written word. I think if you can develop a real pleasure from writing it can be like a key that unlocks a whole new part of life.

Before I had Amelia-Rose I had started to write children's books. I've still got them all on file and would love to do something with them one day. I should share them with Amelia-Rose this half term. If nothing else I know she'll be honest with me!

I was intending to write about the hospital appointments in London tonight but I am just too tired and have had an awful tummy ache since about 3pm this afternoon. It took me to my panic pain stations earlier where the pain gets so prominent I can't do anything to ease it even just a little. It's such a silly thing to say the pain can scare me sometimes but it does, if I can rationalise the reason for it I can manage even the worst pain but when I don't know why it is happening internally I get very on edge. This stomach pain does not feel like the pains and spasms I experience normally. I suppose that just makes me human... with a fear for the unknown!

Blessings  x x

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!