Surgery update

Oooooookay people, we are on our way. Holy Moly this is actually going to happen. I am going to get a major organ taken out. There is a sentence I didn't think I would say. 

When I had my ostomy surgery last year I always knew that the colon had to go and I knew the longer I had it still in tact the more the symptoms would increase and the more uncomfortable and poorly I would get. I felt so chipper after my surgery though all those symptoms felt a long way off. When I had to ostomy surgery my surgeon tried to empty the enormous amount of, well, you know what but he wasn't able to meaning I am quite literally full of, erm, you know what and it's been in there for over a year now. Gross I know. 

In all honesty when I went to see my surgeon back in January he wanted to book me in for March but I was still deeply in shock about the last surgery without even knowing I was in shock. I thought I was doing great and just wasn't ready to think about more surgery. It wasn't until I spent mothering sunday afternoon on the bathroom floor crying, well, sobbing that I realised for the first time something was really wrong. 

I guess admitting you have a problem is the first and hardest step and I am now waiting for counselling but Tony and I talk things through more then we did before. 

I wish now that I had taken that first date (he actually offered me 3 in that appointment. I know I have bought this on myself but I wasn't even two months post op then and it all felt a bit too much) but I didn't and now it's my turn to live with the fallout. The symptoms are pretty awful to be honest. First there is the fact I am solid food intolerant again, then there's the horrendous spasms that will only ease if I sit on the toilet but by sitting on the toilet it triggers terrible back pain and pins and needles like you wouldn't believe in my legs!

Following on from those three symptoms there's the constant nausea that makes me feel like I have done a loop dee loop a thousand times. I also get headaches like I have never experienced in my life. Laying down in a dark room does nothing to touch these bad boys! 

I suppose the most embarrassing would be the raging fevers that strike at any time. I can be listening to a child read at school (where I go in if I am well enough for an afternoon or two a week) and from nowhere be sweating buckets. I have had to start carrying a hanky with me because if I don't dab my forehead it will literally drip down my nose!! 

 

It's also causing my joint pain to go crackers. I never knew the colon could be responsible for so much. Certainly not an increase in joint pain but indeed it does. (thanks to the NHS website for that nugget of information) I wake many days and feel like I have the flu. It really is pretty rotten. I talk with Tony about everything but I haven't really got anyone else to talk to. I don't want to upset my family, they have already been through so much with me that constantly complaining about my new rack of symptoms isn't going to help anybody else. 

I think generally people simply don't know how ill I am. Obviously apart from my family no one else sees the illness. It's just there, a part of my life that is hidden below foundation, good blusher and a dollop of mascara and of course a great big smile. 

My doctor explained to me that he is going to organise a nurse to come out to the house to show me how to use a disposable catheter as I've lost control of my bladder. (I know right, good times!) Possibly it's because of my colon but in a nutshell my bladder has over stretched which means it holds way too much liquid (which is exactly what happened to my colon and caused it to eventually fail) I use to be able to push down on my stomach to release the floods but now even that doesn't work very often meaning I am getting more and more and more uncomfortable and have to visit the bathroom every 30 minutes or so in a desperate bid to release it but to no avail.

So as you can see the colon has to go! I'm not sad about having to have a bag for the rest of my life but the idea of the operation itself, it's always nevre wracking going for surgery but this one feels bigger then the others. 

There is no way we could afford to have it done privately which would make me feel so much more relaxed about the wrong thing but the surgeon has said if we could afford it then he would be happy to do the surgery in the NHS hospital and then have me transferred to the private hospital for the recovery. I have had nothing but traumatic experiences with my local hospital. They are so stretched for good nursing staff that if you go in as a disabled patient or have complex medical needs on top of the reason you are in hospital they just cannot cope with it. 

The private hospital was just amazing when I had my last surgery, on top of having my own room Tony was allowed to stay with me day or night if I needed him and when I started to get very unwell with the infection the staff were 100% on top of it. They also really took in how much pain I was in without brushing it aside. When I've complained of pain in the past in NHS hospitals I've been told either it's in my mind (totally not true) or that there is nothing they can do and then ignored me and quite literally pulled the curtain around. I've also been passed a bloody tissue from under my bed and been told to put it in the bin myself when I pointed out it wasn't actually my bloody tissue. I've slept in bedding with stains and holes in and been left without water when Tony wasn't around to fill up my jug. I've never had problems with doctors or hospitals but I am terrified of staying in an NHS hospital after this op. The ill treatment of patients is terrible and I don't want to get an infection like last time and not come through it this time because it isn't picked up in time or taken seriously. I am sure this all sounds perfectly ridiculous to most but for me it's all about peace of mind and being in the best possible surroundings so I can make a full recovery as quickly as possible. 

Like I say, the colon has to go. I need to take a deep breath and put it in God's hands. Everything will work out. 

I hope!     

If you would like to donate to our gofundme page created by a friend of our family please click the link and it will take you directly to our page.  http://www.gofundme.com/foroursongbird 

The best advice for life...

I sometimes ponder if I had to give someone one piece of advice what would it be? 'Count your blessing'? 'Don't sweat the small stuff?' 'The only person you hurt by not forgiving is yourself'? or perhaps in the words of Elsa 'Let it go'? but then last week I was reading a book my lovely mum had bought for me.

When my sister and I were teenagers we read 'The sisterhood of the travelling pants' (for all the brits reading this it was an American book! So that's trousers not pants or knickers whatever you want to call them!) It was a book full of friendship and love, sisterhood and growth.

In the end there were four books in the series and we left them (then women) in college. However it turns out that in 2011 a fifth book came to life which reunited us with the women now in their late 20's. I shan't tell you the plot because I don't want to ruin it for any fans that perhaps like me didn't know about the fifth book. 

Anywho in the book there is this amazing conversation that takes place between one of the girls and her mentor... "You get older and you learn there is one sentence, just four words long, and if you can say it to yourself it offers more comfort than almost any other. It goes like this...Ready?" "Ready" "At least I tried" and when I read it I thought, 'wow that's it, that's what I believe... 'At least I tried'

Sick, disabled or perfectly healthy can you imagine how enriched our lives would all be if at the end of everyday we could sit back put our feet up and think "Well, at least I tried"

How much courage does it take everyday to take the leap, pick up the phone, send the email, smile the smile, say hello? But what if we don't? What if we fail to do those things because we simply aren't brave enough? How many great life opportunities do we potentially miss out on because we just 'couldn't'.

Life is full of endless possibilities for us to improve ourselves and our situation but we HAVE to go and find them. We have to get our butts off the chair and go in search of them. Last time I checked fed-ex wasn't delivering life experience. (as appose to work experience!)

I don't know a single great leader of my our time (Nelson Mandela immediately comes to mind) that just sat on their backside and was consumed with so much over thinking that they decided not to do 'it' whatever 'it' may be. How easy is it to be all consumed within the quiet contemplation that comes before action that we actually talk ourselves OUT of the action. Yes, there needs to be time for contemplation but the action has to follow!

But Chloe, I hear you cry "I have no time to try" to which I say "Bosh!' If you counted up all the time you spent on social media and decided that indeed that was your action time you would be AMAZED what you could achieve...what you could try! You could learn a new craft if you dedicated just half an hour a day to it, you could learn a new language, you could make a dream come true, heck you could start a new business if you gave up 30 minutes a day for 365 days. Then with the next 365 days you could market it and develop it and let it have more then just your Facebook time.   



I recently sent an email to a small ethical makeup company in the UK asking for permission (out of courtesy) to review their products on my youtube channel. I was so terrified. 

The channel is still so tiny I thought they would (quite within their rights I guess) laugh at me and ask for my interest again in a few months time when I had developed the channel more. However, taking a moment to pause I took myself into the mindfulness techniques I use. By thinking about their response I was already thinking WAY to much into the future. Being mindful is being present. In my present moment I was writing a letter to a company that I really liked the look of. With the mouse cursor hovering over send button again came the butterflies but no, I told myself "In this moment you are clicking a button. There is perfection in every moment and this moment is perfect" I said to my and click, it was gone. Then came the sigh "At least I tried". (and as it happened I had the most WONDERFUL email back the next day offering me a discount to try their products and letting me know they would like to give a 20% discount to all my blog readers and viewers which I will release with that post!)

I have been SO thrilled and totally blown away with the amount of people reading this blog that it encouraged me to start a YouTube channel too. When I decided I would start it up (my blog) I was driven to do so because when I scrawled through the internet looking for blogs (the day I was diagnosed) about what it's like to live with Hypermobility Syndrome there was nothing that had been up dated in the past 10 months.

My mum always says to me 'Be the change you want to see" and so the day after my

diagnosis I sat down and I typed and typed and typed (*1) and I guess I haven't stopped typing since... This isn't a 'Well, at least I tried' it's a "YES! Look what happened when I tried!" 

Of course now there is also YouTube. Can you imagine how much I did NOT want to sit in front of a camera and talk about Hypermobility Syndrome with THE WORLD but when I watched back the first video (*2) I didn't think it was too awful. I felt like it was something that really did sound informative but in a gentle way, sort of exactly how it is when I explain it to people that care to ask me face to face. 

I have this BURNING desire to help the HMS community and for me the way I can do that is by being brutally honest about my experience of the disease but in a positive way. When I started to get private messages and comments about my videos I was literally bowled over. Ok so I may not have 100's and 100's of view BUT let me share with you some of the comments people have written me...

• Your vids are the only things to Cheer me up thx keep up with it 

• Three months in for a diagnosis of Hypermobility/Fibromyalgia after five long years of no one knowing what was wrong with me! In the US. It seems to me that the UK had much better knowledge of EDS/HMS.. thanks so much!

• Your videos are so positive, and really inspiring, and I can relate to almost everything you mention (especially the brain fog!) I've had a very hard time over the past year and my joints have become worse and are now painful all the time, and I struggled with the feeling of being on my own. I knew of no one with this condition, but hearing you talk about everything that I feel and that I can relate to really helps! Thank you for sharing your knowledge about this condition! Lots of love x

• Thank you  so much. I have had HMS for 7 years and i'm only being properly diagnosed now. i didn't understand that my depression was related to hms. it's hard because no one else fully understands the constant pain that i'm in. i was in a wheelchair but because of struggles with my hips, i am now bedridden. it helps to know that i'm not the only one! i'm currently in my last year of school and writing my finals in october. it's hard keeping up with school when i don't go to many of my classes due to this.

• In all honesty I don't admit I cry much but your video had me in tears. I was sobbing tears of relief and of happiness because I realised that I wasn't alone, that yes it is crap but it it's possible to smile through it. I was at the end of my tether, in brutal honesty I had become so suicidal I began planning how and when I was going to do it. Then I watched your video and all of those thoughts rapidly diminished, I sobbed and I felt a huge release because I now know that no, in fact, I am NOT alone. So thank you, you've essentially saved my life xxI am reaching the RIGHT people and blow me down if that isn't what I set out to do! Again I get to roll me eyes (in the good way) and say 'Thank God I tried!' If it hadn't worked out at least I could have said 'At least I tried' 

We do not know what we are capable of unless we TRY. We do not know whose life we will touch unless we TRY. 

I believe every good deed has a ripple effect, you drop a smooth pebble into the pond, that's your good deed but you will probably never know how much impact your pebble as had. It may ripple around the world. It may ripple around your community and you will see the positive outcomes but be prepared you may not. One thing I can absolutely 100% guarantee though is that one day your good deed will come back to you when you least expect it but probably most need it. 

As I touched on in my last post life is for LIVING. Life is not for 'thinking about living'. You could spend your whole life planning your life and before you know it you're checking into the nursing home with a great A-Z coloured coded list of things to do and an empty photo album. 

We have the potential as these emotive creatures that we are to let fear deprive us of some of life's sweetest gifts. You must learn to control the fear, accept it, acknowledge it but go on right ahead and do it anyway (apart from maybe these 'free jumpers' that are throwing themselves from one 60ft building to another, you, you feel the fear turn around then go home you lunatic! ha!) we MUST try. I hope you have blessed with a 'trying' week ahead.... 

And that's the good kind of trying, not like when I say to Tony 'I'm really trying' and he jokes back at me... 'Yes, yes you are' cheeky sausage! 

                                              Blessings to you and yours 

*Footnotes 

1. Read the first post after my diagnosis here; http://www.unexpectedsongbird.blogspot.co.uk/2013/09/fork-in-road.html

2. Watch my first YouTube video here; http://youtu.be/P-AeepZVuZQ

Home again after 'the' London hospital appointment.

When the alarm went off at 4.45am and I knew we had to leave the house at 6.15am to catch a train for a hospital appointment in London at 10.50am I of course gleefully woke up and looked like this...

My husband is a lucky man! Ok, so maybe that is a tiny white lie. It was this more... 

Ok, jeez, I'll stop lying. In all seriousness, it was.... 

I am not and nor do I pretend to be a morning person anymore. Pre child I use to love waking up ridiculously early and being around in the calm hush of morning before everyone else started waking up. Especially in Summer. Even now the one time of year I can truly tolerate and actually appreciate my periods of insomnia is in the summer. I love when at 3.15am (ish) the sun starts coming up, the birds start singing and you can tell even then that it will be a beautiful day. I often go and sit in the garden at that time if I can't sleep. 

Having birthed a baby that never really saw the point in sleeping (I wonder where she got that from?) my love of mornings quickly disappeared! Amelia-Rose fed hourly for the first three months (I breastfed and she never quite got the whole having big feeds to fill herself up thing. I also became 'the human dummy'. I'm not moaning, I chose to feed on demand) and pretty much every 2-3 hours until she was 6 months. Did I mention that was day AND night?! As the months rolled on neither of our sleep patterns improved. It was only when she started school that Amelia-Rose truly started sleeping through the night although she still wakes talking and getting upset in her sleep but she resettles now fairly quickly. 

Anyway, I digress. My pain is always worse first thing in the morning and last thing at night. Everyday as I stir from my sleep but am yet to open my eyes to the day the first thing I feel is pain. To really 'get going' I need my medication to kick in (20-30 minutes) but as my swallowing is also its most painful when I wake up I now need to wake up, sit up (for a good 10 minutes) and slowly sip something before I can gulp to swallow my meds. It makes mornings when we have to get up and leave early very difficult. 

But we did it and left the house only 15 minutes late. Hoora! 

We were met off the train by someone who has been supporting us greatly through our church although I personally have never met him (we go to the same church but different services) We've been in email contact for a few weeks and he has been guiding me through the ins and outs of the NHS. As he lives in London Monday to Friday he surprised us at the station and walked us out to the taxi rank. It was so completely wonderful to be met straight off the train by such a friendly face! It really was! 

We arrived at the hospital with enough time for a quick toilet break and went up to the clinic where we waited.... and waited... and as my appointment time came and went by 20 minutes I started to panic we were in the wrong place (as I had received a letter telling us the clinic has moved to a different part of the hospital I started to think maybe it has changed back to the original location) Tony went to ask at the reception if we were in the right place which thankfully we were! Now at UCLH you don't book in with a receptionist as you go to the department where all the various clinics are there are screens where you check in and it tells you where to go. Much like at our local GP surgery. 

They asked for a urine sample and took my blood pressure and then it was back to the waiting. It was obvious the nursing assistants were starting to get a bit flummoxed themselves and it was then we realised the Dr I was waiting to see wasn't actually in the clinic at all yet. 

As we were waiting the two ladies sat behind us started to talk, an older (although by no means elderly) lady asked the woman what she was here for and she said 'I have a disease called Ehlers Danlos syndrome. The collagen in my body is faulty so my knees dislocate. It's hard because I have a 7 year old son and one day I am fine and the next day I can't move and am in agony. People look at me and don't get it because it's an invisible disease and I look so well." The older lady (who was on crutches and wearing wrist supports on both sides) explained that she is in agony all the time but the doctors won't diagnose her. Her knees dislocate frequently and she often falls, sometimes having to wait hours for her teenage children to get home from school, she explained how frustrated she was and nothing they did worked. 'The doctors won't listen' she said. 

I had my 'My joints go out more then I do' hoody with me so I turned around and without saying anything held it up which made them both laugh.  It sounds awful but it was so nice to sit and listen to these women talking. There are times with HMS that it is so painful and so diverse that I think it must be in my head. 

A bendy bank holiday Monday.

I had an awful night last night, first of all I couldn't get to sleep because my body was screaming with pain. Then my darling husband snored and snored and snored and snored.

Bless his heart when Tony snores I want to gleefully sit beside him being the dutiful wife...

But of course there is always a reality.... 

It took me along time to 'warm up' this morning, I found it difficult to shake of the groggy head and aching bones. Amelia-Rose sat on the bed with me and we played a game of spot the difference. She got two objects that were similar and we had to take it in turns to spot a difference, listing as many differences as we could before she found some more objects. It was fun and gentle! We then popped downstairs and decorated some pebbles we got at the beach with nail polish to put in the garden and I made a wind chime out of driftwood. Whilst I made the wind chime we left the backdoor open so I could watch Amelia-Rose on her swing as she showed me all her 'new tricks'! I cannot begin to find the words to describe how much I adore my little girl! My blessing. My world. My life. 

I then went in the bath to soak my aching muscles whilst Tony and Amelia-Rose played hide and seek with our newly painted pebbles in the garden. 

Once I was out of the bath Tony and Amelia-Rose went to the beach and I began cooking an all mighty roast for them to feast on when they got home! 

For me cooking is love. It is so important to me and has always been an enormous part of my life. We have photo's of me helping my mum to bake as a toddler and it's always been something I love. As a child I would plan elaborate menus and send out invitations to my aunt, uncle and grandparents to come for dinner. I would cook these meals (always three course!) and even at such a young age gain a huge amount of satisfaction from seeing people I loved enjoying my food. Of course I never would have learned the skills without my mother passing them down to me. I am truly blessed to have a mother who passed down the baking gene! 

Before I got sick I would, every night prepare wonderful meals for Tony and Amelia-Rose was weaned on all home cooked meals. During the summer months she would even eat produce I had grown in the garden. At one time she had a real taste for courgettes picked freshly from the green house! When we lived with my parents when we all relocated to Dorset she would toddle out into the garden with me in the morning with a bowl to pick fresh raspberries to have on her porridge! 

When she was still a babe in arms I would put Amelia-Rose in her sling and bake with her, by 2 and a half she could pretty much make her signature jam tarts by herself, I became the sous chef!

My inability to cook every night now is still something that cuts very deeply, however when I do cook I am over taken with love for my family. 

Tony and I have very different ideas about food. I am all about healthy living and Tony, well, bless him, isn't. Obviously I can't eat at the moment but before the 'can't digest solid food' thing happened I was living a vegan life. Amelia-Rose has chosen to be a vegetarian and Tony is meat all the way.

Preparing food is in my mind a part of how I nurture my family, therefore I do cook Tony meat. I will only source it ethically (as ethically as you can... trust me!) and although it is silly, before even beginning preparation I always thank for animal for it's life and for helping me to sustain my family. 

Today I made roast lemon chicken with crispy roast potatoes, yorkshire pudding, peas, carrots and broccoli and swede. (Tony eats hardly any veg and will literally only eat peas and carrots.) 

The thing I have discovered through my illness is that there is a time and place for frozen food. I recently purchased a bag of frozen peas and carrots. Normally I would buy the carrots from the local grocers but because I am not well enough to leave the house for shopping at the minute I have taken to online food shopping. (I still won't buy any meat in a supermarket) When I saw the bag of frozen peas with sliced carrot I bit the bullet and got them and the quality really surprised me! They were good! I also bought some frozen stuffing which took a whole minute and a half in the microwave! 

I have always adored my role as a housewife, that doesn't mean that I don't believe in women's rights (when I was 10 and had to chose a hero and then debate why they shouldn't be thrown from a hot air balloon I chose Emmeline Pankhurt... no joke!) but I liked caring for our daughter, keeping the house in order and having meals every night that would make 'Good housekeeping' proud. I like having a strong man to look after me and make me feel safe, one who encourages me and adores me and I know would move heaven and earth to make me happy. I don't need to question decisions he makes because I know he always puts us (Amelia-Rose and I) first and would never jeopardise our happiness or security.   When my ability to fulfil that role as I use to was stolen from me it devastated me but now I am learning where the corners can be cut but produce the same results. This probably sounds pathetic but when I sit and get through all the ironing without having to stop because my hand hurts I feel victorious. 

So, frozen short cuts are my friend at the moment. Today it meant I was able to serve a huge roast dinner with some of the 'hard on my hand work' reduced which is something to be celebrated! 

We are off to London tomorrow on the 7.07am train! We've just set the alarms for 4.45am so I am off! I guess today's post was something of nothing really. Just a 'normal' day in an extraordinary house! 

Blessings 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.

A week away

So I've been silent this week.

I was taken to hospital via ambulance Sunday and here I remain. Today is day 7, mothers day. Perhaps the crappest day (yes I said crap!) to be away from your child and your mother but both will visit this afternoon.

It's been a long week. I have been on meal replacement since I arrived and whilst I was doing a great job building them up I can't bare to look at them now! Still down they must go!! At a whopping 300 calories a 'shake' my aim set out by the dietian is 6. Yesterday I managed a miserable half. But I did have a 'build up soup'. Good for me.
Today I've just stuck the straw in the second. It doesn't sound it but I really am trying my best.

I have swung between bright and crashing. I was on a morphine pump for 5 days which didn't do me much good. It's an evil thing to put in your system.

Being off the morphine now I feel much more like the me I am use to but I must admit to feeling a bit miserable today. What can I say, it's mothers day and I am home sick.

My body has also been through a traumatic amount of pain this week as the nurses on the first ward failed to understand the importance of consistent pain management. One night I was left for an hour and a half in sheer agony as my stomach spamsed and pulled me forward each time causing my hip to dislocate. My husband ended sat on the bed relocating my hip and trying his best to hold it in place as I squirmed in agony. I don't scream or shout in pain. I become trapped in by it. Unable to voice it. Maybe if I did scream I would have been given the pain medication sooner. All this because my canula had been taken out and only doctors are allowed to put them in. This trauma and Sundays trauma will slowly be worked out in my mind as it does with all pain trauma. It feeds it to me in bite size portions. Thank God.

So far I am not responding to any treatment and have picked myself up another chronic illness. A common sub syndrome of the hypermobility syndrome called 'dysmotility syndrome'. Basically my bowel is buggered. It can be managed with medication (for life) and diet but need to get the damn thing working again first. Joy.

It's hard to be yourself in hospital. You're surrounded by people whose spirits are struggling. Bless them. It dawned on me today how much I miss the sky and the breeze.

I can't even begin to feel how much I miss my daughter and my husband.

I am angry with my body for ignoring my demands to get well. Doesn't it know I have a life to live?!

..............................................................

Since writing the above I have had Amelia-Rose, Tony, Mum and Dad to visit and we sat outside IN THE SUN for over an hour. God it felt so insanely good to feel a breeze on my face.

I just hope I can get home soon and regain my previous strength. A week in bed has done my muscles no good at all. I walked today and was shocked what such a short distance did to provoke such painful muscle fatigue. This is absolutely not going to be the new norm. I am NOT going to leave here in a wheelchair and not get out of it. Lord no that is not going to happen.

A wonderful fabulous friend gave me a book about the amazing artist Frida Kahlo. What a woman. I so relate to her story and her paintings. She lived with the most debilitating pain and yet achieved so much as an artist. A true inspiration.

It's been amazing to read the book of her life and see her paintings when I am suffering so much with my own body.

What I wouldn't give for a healthy body...

You can't be pitiful and powerful though so best bury that pity....

The pondering of a wonderful husband.

I was listening to some worship music earlier (for the first time in a very long time) which prompted a conversation with my husband about how I am doing spiritually.

I have always been spiritual, especially since we relocated to Dorset 4 and a half years ago. Moving here really felt like my homecoming. I grew to a place that I had never been before and was very comfortable in that place.

I believe that our spiritual wellbeing is as important as our emotional, physical and mental health and I had grown to nurture that part of myself. Whatever you chose to believe in or not believe in doesn't stop you from being spiritual. I know some people that don't openly affiliate with any one God but they are still incredibly spiritual. I think sometimes the lines between being religious and spiritual are seen as one and the same and I don't really think they are. They are two separate qualities.

I started to find it very difficult to go to church about November last year, I should say going to church is something I have done all my life and I think it is one of the best communities you can be a part of (if you find the right one for you) but it became the place that I really 'felt' the emotional pain that went along with suddenly becoming disabled.

All the things I have lost, especially as a wife and a mother would hit me when I went to a service. I found I was doing well and adapting to our new life but then when I went to church the enormity of everything would strike. The good feeling I got when I went to church went and I found I was getting more and more anxious at the thought of going.

At first it didn't matter to me as such because I continued to pray and nurture my spirit in other ways but I think in all honesty around Christmas time I stopped doing that too. Weeks would pass without me praying or meditating which is so unlike me. It only dawned on me today how under fed I am spiritually at the minute.

I haven't stopped believing in God (amongst other things) but I am angry with him. I hate typing that but it's the truth. It's difficult when you're surrounded by stories of healing and you're sick. Do I feel like if you have so much power where's my healing... maybe. But I recognise that healing comes in many forms it doesn't always work like that.

Emotionally I feel I have been healed from many past hurts since becoming disabled but sometimes I feel like there is an expectation (I suppose partly self inflicted) for me to suddenly be physically healed and I don't believe it always works like that. I get this sense sometimes that I am letting people down by not getting better physically. It's like I want to affirm people and their prayers but that's a completely unrealistic pressure to put on myself.

I need to start filling myself up again though. My husband said one of the things he struggles with most about my illness is what it has done to my spirit. Although he is agnostic he has always recognised how important my faith is to me and he feels like the pain has taken that away form me. Not completely but enough for something that has always bought me great comfort to no longer be straight forward.

This lead to another conversation about a day course I have the opportunity to go to on Saturday. I have been to the place before and it lifted me higher then I have ever been. It was the most amazing place and I have wanted to go back ever since.

My initial response was no because it is an hour away and not a straight forward journey (lots of back roads and windy roads!) and the idea of sitting for such a long time is daunting! My husband then made a pretty bold statement! "You make me cross sometimes" "In what way?" I asked slightly bemused and he replied "If someone needed you, even if it was going to be detrimental to your health you would go but when it's something that could help you you put walls up and don't go because you think it is beyond you."

It was quite the observation and he's absolutely right. I constantly say yes to things that maybe I shouldn't and I pay the physical cost but when it is something just for me I won't do it because I fear the fall out. It's tricky when something that brings you pleasure will ultimately bring you pain and there is always a physical price to pay but, I don't know. Maybe there are situations that I should be saying yes to for my spiritual sake. Pain is pain. One way or another physically I feel it all the time. Can I continue saying no to things that would feed my spirit because of fear of the physical fall out and yet say yes to things for other people and bare the physical fall out?

I think we all know what the answer the that is don't we.

So operation sort my spirit has begun. There is a sound for health course starting Sunday, I did a condensed version around the time I first went on the crutches before I had my first operation and it was the most wonderful experience. I have been talking about going for a weekly 'sound bath' ever since and yet 18 months on and I still haven't gone back! I am thinking I will sign up for the course and let it kick off me reconnecting. I need to stop ignoring my spiritual self and take down some of those walls.

I am so blessed to have such an observant husband.

An apology to the universe !

A weird thing happened today.

We were making our way back to waterloo to head home after having a really nice stay in London. It is no lie that I find going to London for all the hospital appointments really stressful. It's not so much once we're there but I hate leaving Amelia-Rose and how disruptive it is to our family life. Travelling also takes a real toll on my body.

This time though we took Amelia-Rose with us! Work on the train line forced us to stay another night which originally I was resenting (costing us another £164 in hotel fees!) but we have had a nice family break away and going to hospital was a mere blip on the radar. The weather was beautiful too!

Anyway, I digress. On the way back up to the station we passed a woman in a wheelchair who was self propelling (insider speak for making herself go) and I gave her my best stranger beamy smile and she looked at me and completely froze me out! Actually, she looked really annoyed that I had smiled at her.

Now I am a beamy smile at a stranger kind a gal, I don't think it costs a thing to smile at someone and for some reason I just assumed this woman would smile back. But why? I don't expect 'able bodied' strangers to smile back, although of course it's always a pleasure when they do but I honestly thought this woman would automatically smile back. It didn't actually occur to me that she wouldn't... until she didn't.

Before we had our daughter my husband and I would go for long bike rides on beautiful days and I always loved the 'biker nod'. It's an unwritten rule amongst bikers that when you pass each other you nod. I just always thought it was very cool.

When this woman didn't smile back, in my head I got all 'Oh charmed I'm sure, nice, really nice' which I would never do if an up right stranger didn't smile back!

I was thinking about the whole scenario on the way home. It really bothered me how I reacted to this woman not smiling. I think there is a part of me that has this ideological vision of seeing someone else in a wheelchair and us sharing that all knowing smile and nod. Just connecting because we both 'get it'.

Unless you've had to be in a wheelchair for an extended period of time or have the knowledge you will be in that chair either permanently or when you go out for the rest of your life it's very difficult to truly grasp that concept. To a good 90% of the population if you are in a wheelchair you are invisible. To the people who see you many often have a true sympathy in their eyes. It comes from a place of compassion but how i would adore to not conjure that emotion in someone!

I wanted this woman to smile back. I think I almost needed her to smile back? Then it dawned on me that I was doing exactly what I don't like having done! I didn't pause for a minute, or even a second to consider how her day was going. I saw a woman who looked well in herself but was in a wheelchair.  I didn't think about how many people had walked across her path or looked down on her. I didn't consider that she was in pain, felt awful or may have had a rough night.

It was really silly of me and I am sorry for it. I put negative thoughts out there in the universe about this woman and that wasn't really fair! Needless to say I take them all back. Or rather I want to replace them with good ones!

The past three mornings we have had the breakfast buffet at the hotel, when we're in that situation I always prefer to propel myself in my chair, I am increasingly beginning to do it out in the street too as my confidence being in the chair grows.

A few times it has dawned on me that I am different to everyone now. Not in a negative way just in a different way. I think this is all part of my own personal acceptance of my situation.  I think my want for this woman to smile at me came from a want to find a place in the 'disabled community' or even to find it! It's bizarre because I don't want people to see me as different but I am definitely beginning to accept that, yeah, I am different.

I am learning about my physical boundaries and figuring out who I am within those. I am understanding that I can still be 'me' within those boundaries but that I am not the me I was 2 years ago. In a want not to label myself as able or disable I have perhaps denied myself moving along the road. I have maybe trapped myself in a stale mate? Clearly I am still not exactly sure what this is all about otherwise I could be more decisive in my writing but I feel like something in me is changing. That maybe I am beginning to identify that indeed this is all part of my identity.

Singing sunshine and sundays

What wonderful weather we have been blessed with this weekend. It truly feels like spring has sprung!

I love spring, it's such a joyful season. Is there another time of the year when we are surrounded by new life bursting into bloom all around us? I think not. Of course summer is wonderful, long hours spent in the garden with a hot sun beating down on your skin but spring is something else. It always reminds me to be grateful to live in such a beautiful part of the world (something I am very aware I take advantage of).

We live just 2 miles from the sea and went to 'see the sea' Saturday and Sunday this weekend. Amelia-Rose had her first paddle in the water which she was thrilled about. Of course she got absolutely soaked but three things that never bother me as a parent are water, mud and paint.

Water dries, paint washes off as does mud. Obviously I wouldn't be thrilled if Amelia-Rose walked mud or paint all over the carpet and through the house but if it's on her it's fine by me! I love that I have a daughter who loves getting messy and isn't precious about staying neat and tidy. The way I see it she has the rest of her life to be neat and tidy (if she so desires!) these are the messy years.

I have some wonderful photos of her absolutely plastered in paint when she was three. I left her alone whilst I went to the loo and she decided she was going to 'do her make up' with the paints. The outcome was hilarious!

So lent is upon us once more and as always rather then giving something up I have taken something on. For me personally the battle is allowing myself time to do things that make me feel good.

Like almost every mother on the face of the planet I always put my free time into playing with Amelia-Rose but when she's at school I tend to fill the day with non essential 'stuff' or if I'm having a bad flare up I take the time to physically rest.

This lent I have set myself three goals. Two are reading on is practical.

My eye sight makes it very hard to concentrate on reading which is tough because I adore reading. We aren't 100% sure what is going on with my vision but everything is always slightly out of focus and it gets a lot worse when I am tired (to the point that I literally can't see straight, I couldn't read a word on the page even if I tried really hard to focus on it.)

 I am waiting to see a specialist as the optician said it wasn't actually my vision as such so it can't be corrected with glasses, in his opinion it is a muscular problem which of course would link in directly with the hypermobility syndrome.

Anyway to get any reading done I have to do it during the day so I am going to make sure I make time to do it.

I have chosen two books that I both think have something to offer me at the moment. 'Raising your spirited child' which discusses children that are 'more'. More sensitive to taste, touch, sound and emotions, mature for their age, very creative and intelligent. They can all be great personality traits but they do have a downside for the child that just feels 'more'.  The author refers to them as a  spirited child. For example, if Amelia-Rose is done wrong by another child and the other child won't say sorry she gets more upset about the injustice of not getting an apology then whatever was done to her. It's 'more' !

The other book is the prayer studying guide to the book 'The power of the praying parent'. Amelia-Rose is suffering with a bit of separation anxiety when she's dropped off to school at the minute and I'm doing everything I can to reassure her in a practical sense but it dawned on me that I haven't actually prayed about it. I thought if I did the work book it would discipline me enough to really think about the areas where Amelia-Rose might need prayer in her life at the moment.

The third and final up take is to try to do a bit of sewing everyday on my machine, or at least a couple of days a week for the simple fact that it makes me really happy! I bought some fabulous fabrics last year and I still haven't used it. I make Amelia-Rose skirts and with summer coming I would like to make some new ones. She has grown so much since last summer anything I made last year is going to look like a mini skirt!

I made myself an awesome camper van skirt last year and would like to make myself a few new skirts too. With the HMS induced trouble I am having with my digestion I have lost over stone since this time last year so will need a new summer wardrobe myself. I can't remember if I wrote about what's going on with my tummy at the minute? Around June last year certain foods started making me be sick but before Christmas I started being sick after most meals. There isn't an obvious pattern to it, I thought at first maybe I had developed a food intolerance but it didn't matter what I took out of my diet it didn't stop.

I did some research and it turns out that this kind of thing can happen to HMS sufferers. The consultant explained it to me that when you swallow (which is now very uncomfortable at best and very painful at worst) there comes a point when your muscles aren't strong enough anymore to keep pulling the food down so it comes back up. On very bad days just drinking water can feel like I have swallowed a whole apple and sometimes it feels like it has got stuck, that I hate. It's quite frightening. I have figured out 'safe foods' such as a bagel dipped in oat milk or tea and soy yoghurt. Cracker bread goes down and stays down too but things like potatoes, pasta and rice are really sporadic, sometimes they do sometimes they don't.

It's the reason I am juicing at home. It's the best way to get maximum nutrition into my body! Plus they taste amazing! My husband makes the best juices! We use the same ingredients but his always taste that bit better!

We are off to London again this week at the end of the week. We're going to take Amelia-Rose with us this time. I think it will do her a lot of good to see what actually happens on a day that we go to London. I wonder if in her head she is making it much bigger then it actually is which is maybe the reason she is getting upset going into school at the moment. I think we need to normalise it for her. Of course it will also help her to see the hospital before I go in for my operation in May.

Steve and I did an open air set at a event to celebrate International World Woman's day yesterday. It was absolutely brilliant! The sun was shining, the crowd were great and two of the musicians that played on the album and performed for us at the album launch spontaneously joined us! I will be posting some videos on YouTube this week sometime hopefully. If you want to hear some tracks off the album now though go check out  https://soundcloud.com/songbird-unexpected. Singing and performing makes me soul shine. It made me feel so good yesterday!

Right, that's it! I am off to bed. It's been a wonderful weekend and a good night sleep tonight would just be the cherry on top!