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

A gentle weekend

This weekend despite still feel rough as... Well, lets leave it as rough shall we! ;-) I have made an effort for Amelia-Rose's sake to get up and appear 'normal mum'. It didn't start too great as Friday night my insomnia kicked in and I got absolutely no sleep! It did mean though that by 7.30am my over tired hyper energy had kicked in and I decided to make hot cross buns! 'Normal' for me involves baking!

They were a real hit with everyone from my year old nephew to my husband!

Whilst I was waiting for the hot cross buns to prove I showed Amelia-Rose how to make a boat out of an egg box (thanks pinterest) and later when my nephews came over I showed my older nephew (age 3!) how to do it too.

Tony took Amelia-Rose to the local museum which is her favourite outing in our town. It closes in the winter and she really misses it! It's a shame because I think she would love to do that on her birthday! It's a good museum but it is fairly small, that doesn't bother Amelia-Rose though! The fact that it's free means she gets to go whenever she asks as long we we have a free day. Another local museum she love is the dinosaur museum but that's fairly pricey for what it is and is a 20 minute car ride away meaning they can't just pop in.

Today Amelia-Rose and I spent most the morning playing (for some of the time we had frustrating fun with her aqua beads!) then Tony took her to the supermarket to get a few bits then she went to church with my parents.

The last time I went to church was when I was embarassingly ended up doubled over in agony and being taken out by paramedics on a stretcher and started my two weeks in hospital. It will take a while to rebuild my confidence to go back.

In the evening we cleaned out our stick insects. We had them before but they all died. They only have a life span of 12 months and I got them to teach Amelia-Rose about the life cycle. You can't really get emotionally attached to a stick insect even if you are five. I had them as a teenager so know all about them. When they had all eventually died (they died over the course of a few months) I emptied the tank but left some eggs on the bottom thinking I would give it a proper clean out when I put the fish in there. Never in a million years did I think they would hatch!

A few weeks later when I was dusting I noticed 5 tiny baby insects in there with their eggs still attached!! We couldn't believe it! We put some privet in leaving the remaining eggs and the next time we looked there was 7, then 10!

Yesterday I noticed oddly there was a moth inside!! Today we cleaned them out all together and released the moth outside. We all had our jobs, I took the insects out and passed them to Amelia-Rose who put them in a tub and Tony watched the tub. They are quick little gits when they want to be! As I was taking the leafs out I found the moth's cacoon that we have saved so she can take it into school. We counted a staggering 18 insects!! All various sizes!

As the weather has been so.beautiful and my tulips are all in full bloom I took a turn about the garden (as Jane Austen characters would say! ) and plenty of beautiful albeit slightly abstract in some cases photos of the tulips.

I was excited to see some green shoots and buds on my apple tree. I bought it in October from the local garden centre when it was full of delicious apples. The poor thing is still in the pot I bought it in but Tony hasn't the time to get it in the ground. I don't bland him at all, with the amount he has on his plate it would be harsh of me to be cross about it! It's just a shame. I did get a quote from a guy but it felt a bit steep for our budget! Perhaps a local who reads my blog might like to come and dig it a hole ;-) ;-)

I'll put all the relevant pictures from the weekend below. All in all bar the insomnia and still feeling so horribly full and comfortable it's been a nice weekend. This week is operation Easter! Hopefully crafts galore! I had wanted to make Amelia-Rose an Easter countdown but I haven't been well enough. This week as we are in the spirit I am hoping to make it this week ready for next year.

Mindful mummy; Mindful daughter

I have been thinking today about what to write in my blog. A few things have crossed my mind; How much I miss food and what it's like to live without it; My website that I am building how I am trying to centralise the various creative things going on in my life; The frustration that I feel because, as of yet, my body still shows no sign of improvement, but then a wonderful thing happened. I decided today was the day I was going to start teaching my daughter mindfulness.

Amelia-Rose coped amazingly well the first week I was in hospital, she blew us all away actually. The second week she started to struggle although she still did a great job. Since I've been home though I think it has all caught up with her. In the same way it has caught up with my parents, my sister and my husband. It's funny how they all show it in such different ways. In ways that reflect our various relationships.

My husband is treating me like a dandelion, if there is the slightest breeze I think he's afraid I will blow away in the wind. I have always felt like he is my protector but now more then ever. I really do love that man.

Amelia-Rose though, when I first came home as you would expect she was all over me. It was cuddles and kisses all the way. But as the days have gone on and she is realising I am not better then when I was in hospital (bar my pain being under control but she was protected from all of that anyway) I've seen a confusion in her and heard a few questions for Daddy 'Why doesn't mummy cook my dinner anymore?' etc I have decided from tomorrow although I will be wise with rest I am getting up, getting dressed and doing my make up. No doubt I will then be told how great I look although I feel like cr*p but maybe it is time to put the mask back on.

Anyway back to the point in hand. Today Amelia-Rose went out with a friend and wasn't herself, she refused to play with her friend and wouldn't take instruction from my friend. That isn't normal behaviour at all for Amelia-Rose, especially not to take instruction from an adult.

I chose tonight to be the night I would introduce her to mindfulness. I ordered a book whilst I was in hospital called 'Sitting still like a frog'. It's a book and CD designed to introduce children to mindfulness, we sat on my bed together and I explained that we were going to listen to a cd and do what it told us, I told her it would make us feel nice and calm and what we were going to do was called being mindful.

The first track came on and we both closed our eyes (it was a choice, she didn't have to close her eyes but I guess she took my lead) as the track continued I reached out for her hand and she responded by placing her hand in my hand. We fell deeper into relaxation and as the track told us to put our hand on our tummy I peaked out the corner of my eye to see she was indeed putting her other hand on her tummy.


The track finished and we came back into the now, Amelia-Rose asked if we could do another and so we did. That finished and she looked at the track names on the laptop 'Mummy, can we do sleep tight?' and when we'd done it once she asked for it again! This time she snuggled down, asked me to put my hand on her back and she fell asleep!

To hold her hand as she experienced this wonderful feeling for the first time was delightful. I was on a real high. I feel like we have found yet another way to grow together as she herself grows away from needing me in a practical way so much. I see it as part of my role as her mother to learn myself how to step back as she steps forwards but to not be so far back that I'm not there when she needs me. My role shifts and changes and she herself shifts and changes. Sometimes we will move forward for months and sometime we take a few steps back.

Amelia-Rose reverted to co-sleeping months ago then when she got a Hello Kitty blow up bed for Christmas she started sleeping on that on our bedroom floor then suddenly Tuesday she announced she wanted to move back into her own bed in her own bedroom.

I'd always said to Tony when she was ready to move back into her own space she would but it still sort of took me by surprise (in a good way) Tonight Tony lifted her back into her own bed. At 12.30 there came a small voice 'Daddy' Tony went in and they had a small chat before she went back to sleep, she woke again at 2.45am and was completely calm as she was the first time she woke up. I wasn't asleep anyway so I shared a story with her and she asked for the 'Sleep tight' meditation and fell back to sleep!

I need to explain how HUGE this is for us. This is the first time EVER Amelia-Rose has woken up calm in the night. We have always had to deal with night terrors and nightmares (two very different things) or just a crying frustrated many times inconsolable baby/child. This calmness that surrounded Amelia-Rose when she woke in the night was wonderful. I really hope this enthusiasm for meditation continues. I think it gave her a great deal of calm in what has been a very un calm 3 weeks. I feel like I have found a way to help her feel centred when everything is all over the place.

Just a silly post

When I was in hospital during what we shall call "the morphine week"I took a bunch of random photos that I guess at the time felt important?! Thought I would post them and maybe you can appreciate their 'abstractness'. They may at least make you laugh at their pointlessness! I must admit one night I was aware that I was hallucinating and remember distinctly saying to myself "Just remember none of this is real" but still being really cross with the black hippo that was sat in my wheelchair!

I fell asleep last night at 10ishpm and woke up today at... Wait for it... 1.20PM! :-O When I asked Tony what time it was I was expecting him to say 9.30am. I never expected to hear 1.20pm! Never in my life have I slept so long. I'm the woman that has insomnia and barely gets more then a few hours sleep if I sleep at all!! 16 hours sleep. 16!!!! Shows how tired my body is at the minute!

Poor Amelia-Rose is under the weather, Tony said she woke at about 9.50am (unheard of!) was awake for a while then fell asleep till 11, she was happy to just lay on the bed watching telly (again unheard of) and didn't make any effort to get up. Then when I woke up she asked for lunch but didn't eat it and fell asleep again. I took her temperature and it was a scorching 38.2. At 5.30 she got up for a while and asked for tea but again didn't eat it then asked if she could go to bed and has fallen straight to sleep. There's a nasty cold viral thing going around that I am told feels like flu. I suspect she has that as she has been complaining of a headache.

I may not be good for much at the minute but mummy cuddles I can do!

After my experience in hospital with Jane I spent a lot of time last night looking into training to be a councillor. I can't get over how natural it felt. I didn't feel over whelmed or out of my depth listening to her life story that was filled with tragedy.

I felt completely at home talking with her, guiding her, talking her down from her desperation and it got me thinking. Maybe I have found a vocation...

I have always wanted to help people and I believe the kindest and easiest thing you can do for someone is build them up. It doesn't take much to say hello to someone and follow it up with a genuine specific compliment. You're hair looks lovely, you're such a wonderful person etc Just a short sentence to make that person pause for a second and let themselves be complicated.

I would love to dedicate part of my professional life to helping people who are hurting and the other part to making people feel enriched artistically with my music.

I will reflect on it for a while but I really think I may be on to something...

Thank God I didn't go home.

Today I was supposed to be discharged from hospital, I was all packed and just waiting for my medication to be bought up from the pharmacy. Oh gosh I was beside myself with excitement.

When they did eventually bring it up it was discovered that the doctor hadn't written up one of my pain killers and as it had now gone 7pm there was no doctor to write it up.

I was so upset! I had a good cry. A really good cry. After 12 days in hospital (and knowing I am not actually going home well) I just wanted to be in my own house with my family. Surrounded by love not, well, hospital.

The lady in the bed opposite me had joked that she didn't want me to go, as had the lady next to me. We've got to know eachother over the week and had some good chats despite all feeling pants.

Tonight there was a screw up with Jane's (I'm not using her real name) methadone. After having a serious drug problem for years she has been clean for 10 years. What an achievement!

However the nurse was refusing to give her her methadone, saying that she was only allowed 15ml (whereas she normally has and is written up for 85ml) I still don't understand totally how this mammoth mistake happened but it did and it left Jane in agony and desperate.

In her mind that was the final straw and she wanted to go home, the nurse didn't help matters by being incredible rude to her and telling her that now saying she normally has 85ml she was 'changing her story' (not true)

Jane began trying to pull her cathetor out and when she couldn't shouted (amoung other things) that she just wanted to go home. This was not the woman I have gotten to know. This was her being forced to her breaking point by bad management of her illness (her addiction)

When she started to cry (after the nurses had left) I asked if she wanted me to come and sit with her and got an ear full myself. There is no way the lady I have gotten to know would have shouted at me. I want to be really clear about that.

In the end she left the ward cathetor in toe to go for a cigarette. I began to worry after she had been gone for a long time, visions of Jane in her dressing gown and slippers trying to hitch a lift home pee bag in hand danced through my head.

In the end a care assistant went looking for her and a few minutes
after the care assistant came back Jane appeared back too.

When she got into bed she dissolved into tears and disclosed to me that she had rung one of her old friends. 'It' wasn't much but enough just to take away the pain.

My goodness she was devastated. I got in my wheelchair and went over to her, she told me not to, that she was use to being alone but there are times when you just have to be there for someone whether they like it or not.

Sometimes when you least want to be around someone (anyone!!) is when you need them the most.

I asked questions about her son, about what made him happy, she told me about her life (which has been tragic) but I got her to talk about her brother who had visited earlier, they had had a wonderful time together! I played her some tracks off the album and explained about how the song Beautiful Man came to be.

I told her how brave she had been to tell the nurse she has used and when she told me people just looked at her like she was a scumbag junkie I told her scumbag junkies don't stay clean for over 10 years, scumbug junkies don't stay at their child's side through 17 operations, scumbag junkies don't put other people before themselves.
She is not a scumbag junkie I told her many times, she is an amazing strong woman who was put (unfairly) under an enormous amount of stress tonight and had a tiny blip in her recovery.

I told her tomorrow is a new day and she'll get up and chance her knickers and she will have achieved something (something my mother taught me) and before she knew it 10 years will have passed and she would have been clean for another 10 years.

When the nurses came in she kept telling them that she couldn't believe how awful she felt but I had managed to make her laugh.

So I guess, the point I am trying to make is that it is blatantly obvious to me now that I was never meant to go home today. As disappointed as I was earlier I am so grateful that I am here now to be here for Jane.

It's 12.45am now and we are still waiting for the on call doctor to come and clean up this mess for her. We've only been waiting since 8.30pm. I have said I will sit up with her until the doctor arrives, I suggested she finished her suduko and I am typing away. Thank God I didn't go home. Thank God.

Sometimes when things don't go our way we are crushed and frustrated, heart broken even but if we can just sit back and trust what is going on around us we might just see that actually there is something so much bigger then us, so much bigger then our individuality at play and what we have to do is build up the courage to wheel across the room, to hold out our hand, to sit up all night with someone whether you know them all that well or not. To be the person we wish we had in our hour of need.

To be home

I had a real mixed bag of news yesterday. I have been put on a new medication for the dysmotility syndrome which is great but it can take up to a month to start working which was a bit devastating to be honest.

I've been warned I am in for a very rough few weeks and am surprised how weak I have become already. It's going to be a battle to get back to the level of health that I was at before I came in but sure enough I will get there. You can put your money on it. It's a safe bet.

I am going for a scan tomorrow, in a lay it all out there blog I might as well tell you that when scanning my bowel last week they happened to find cysts on my ovaries. I know... I know.

I will let you dwell on how unfair that is instead of me doing it. I cannot begin to head down that road. Can you just do me a favour and be really pissed off, maybe throw something and let out a few duck words. May I suggest something that may or may not sound like OH FOR DUCKS JAKE. Ta.
We will learn more about them tomorrow. There's a chance they come and go at various stages in my cycle.

The good news is that I should be home by the end of the week. The not so good news is that I will be leaving no better then when I came in. I still haven't responded to any treatment yet. I can't lie and pretend that the thought of the leaving feeling so awful isn't overwhelming but god I want to be home.

It's times like this that make me marvel at our inner strengths. It's funny isn't it, the things we do to get by. I remember when I was recovering a hip surgery that I had in Reading over 12 months ago now. I played a song by Greg Page called 'Give me some time' relentlessly.

It was like it was going to be ok... I was going to be ok as long as that song kept playing. It became a mantra. I was in such a deep shock bought on by that whole ordeal that I got a bit stuck in not getting the feels about it all. "Give me some time" the song says "To rest my head and bury myself deep inside, let me go and be myself, give me a memory of you"

I drew such enormous strength from that song. I needed to have a memory of myself. The strength came from that song and bizarrely the smell of my daughter's hair.

I would kiss her on the top of the head and inhale deeply. Filling my lungs and my soul with everything that it meant to be a mother.

There are times in all our lives when we have to find an inner strength we may never suspect we have. But it's there. Take my word for it. It is there. It is like feeling the sun on your face. You can't reach out and grab it with both hands but you can feel it, you know it's there.

I will find what it takes to get me through the next few weeks, it may feel overwhelming now but we'll get through it and I'll still be all the things I am. A mother. A wife. A daughter. A sister. A friend. A woman. A Chloe.

To quote a talented singer songwriter who happens also to be one of my bestfriend's husband...

"The birds will still be singing and the songs will still be sung and the sun will still be shining in the slums."