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 

Where we are...

So we're three weeks into the holidays and we are having the best time. I must admit I was worried I was setting myself up for disappointment. I had so much I wanted to do with Amelia-Rose during the holidays but wasn't sure if I would ever be well enough to do it all!

So far so good though! I must admit I can't say I am doing a great job at pacing myself but I am trying to learn! I seem to be in that place where I go go go go go and then I crash which is something I must 'un learn', at least I am aware of it though and am trying to do something about it!

I am finding the only time I have to sit and write is when I am absolutely exhausted (like now) which sort of sucks but I do write when I can! I have an article that I have to edit and I need a good chunk of time do it but finding that time (again when I have the energy) is near on impossible!

My Youtube channel is getting some great feedback which is incredible. I never expected it to be so well received and have been blown away by people's honesty if they leave a comment or send me a message! It's amazing how when you're really deeply honest people feel content to respond with honesty.

It's a really scary thing to be honest and put yourself 'out there' and I was terrified at the idea of making the step from blogger to vlogger but I couldn't get rid of this feeling that it was something I was meant to do. (Don't you just hate that feeling ;-) It's like a feeling of "No God!! Not me! Not now! Get someone else to do it! Ha! Obviously you might not get that if you don't believe in God though!)

Anywho, I have been filming and editing daily vlogs which I must admit I have grown to love. It is such an amazing way to record our lives because Lord knows how bad my memory is now! I love sitting and watching all the footage I recorded that day. I actually wish we had been doing it for years! I generally try to edit it into a film of 15 minutes or less for the sake of YouTube but I have all of this extra amazing footage 'just for us'.

I am digging deep and trying to 'be brave' in a way that I am normally rubbish at. In terms of doctors, procedures without sedation, hospital appointments and operations I generally think I am pretty darn brave but when it comes to putting myself sort of forward for stuff I am RUBBISH at 'being brave'. Being a singer and performer you may not believe that but honestly it's true.

The other day I happened across an amazing website that sells eco friendly and vegan make up. I've managed to find eye shadows etc but have struggled to find companies that sell 'the whole face' make up range, especially really nice bronzers and blushers. I browsed through the website and fell in love with it.

I thought how awesome it would be to review the products on my channel and decided to email the contact email and ask if I could. I guess I have a fear of rejection so doing things like that take a lot of courage for me but I went ahead and did it anyway. It turns out it was well worth it because I got the sweetest email back and they not only offered me an amazing discount but they also said that if I did review them they would also offer the readers of my blog and my YouTube channel viewers a 20% discount with a special code generated just for us!!

I ordered the make up at about 1am Thursday morning and they arrived Friday morning and I absolutely love them! I am going to write a proper review and film a tutorial and review with them to go along with the videos I made of my opening the package. I was so excited it was ridiculous! Honestly the silliest things make me excited!

The other 'brave' thing I did recently was to get in touch with a fellow YouTuber who I have been watching for a while. Her channel is called (and indeed she is called) dearmamasal and she VLOGS on her way to work everyday. The camera is set up on her dashboard and she talks about, well, life really!

I am a great believer in affirming people and wanted to message her to say 'good job' but I felt a bit shy! I eventually went ahead and did it anyway and again I got the sweetest email back. Not only that though she also shared a few of my videos with her viewers and we've exchanged message pretty much every other day or so since. I think she is one of the most like minded people that I have come across recently. Once again my 'being brave' was rewarded although this time with a new friend.

It's amazing what you get back if you put yourself out there.

I am deeply sorry but I am going to have to stop here and not go back and check/edit what I have written. I have the most awful headache and its making me feel quite sick. I really wanted to give you all a full update but I am going to have to stop writing and lay down in the dark. It's only 9.30 but because it's overcast and rainy its already dark outside.

Sorry for any spelling, grammar or just general 'that doesn't make sense' mistakes.

Blessings

C x x

http://youtu.be/2Wa_AviZvGQ (Check out the VLOG here!)

It was a busy week getting ready for my friend's baby shower that I hosted yesterday. As she spent some time living in Mexico before she met her now husband and settled down to have babies (this is number 3) and her baby is being named after Frida Kahlo the famous Mexican artist we decided on a Mexican theme! I tried to do as much as I could before my big appointment Wednesday but there was a lot that I had to do in the 3 days that followed.  


Charlie thought that she was coming for a slice of cake and a cup of tea with her friends but behind the scenes I was furiously making decorations, preparing games and cooking up a feast! 

My friend stepped in to help me out on Friday, I had already asked her to help me out on the day of the party but she said she would help me with the shopping the day before and could then also be on hand to help me with everything that needed doing Friday. 

Honestly I couldn't have done it without her. I am so blessed that she was able to help out as much as she did because it meant I really got to give Charlie the shower that I had planned. It's so easy to get carried away with pinterest when you have all of those fantastic ideas at your finger tips but I decided what was most important and stick to that. 

I am going to do a post dedicated to that with photos etc probably on my very bendy baker blog which I have TOTALLY neglected! 

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Ok so a few days have past now and I have been a bad blogger and not finished this post. I am struggling to find 'blog' time at the minute which is sad because I love sitting down to write my blog! 

I do have a good reason though! I have restarted my YouTube channel and that's been taking up most of my 'spare' time because I have to edit the films before I post them up. I started a YouTube channel back in December because I wanted to be able to capture what day to day life was like with HMS and do information videos about chronic pain and how to support someone living with a chronic disease. I am trying to use as many mediums as possible to raise awareness of chronic pain/illness etc. 

I will figure out the balance between my blog, vlogs and other writing projects but at the moment the scales are tipped more towards the filming and writing projects. 

I have also been getting out and about which is fantastic and had two hospital appointments the last 3 days! 

The first was with the nutritionist who has put me on a new liquid meal replacement diet. I didn't really know what to expect going into the appointment to be honest but she was really lovely and is the first person to really listen about all the trouble I am having with nutrition at the moment and the extra detrimental effect it is having on my health. 

I happened to discover this vegan hemp protein shake last week that actually stays down!! Man was I excited when I drank it and it didn't come back up! My nutritionist would like me to have the shakes she has prescribed me and carry on with the hemp ones too. I am also to take a tablespoon of ground flaxseeds a day as well which I have been mixing in with the shakes. 

I use to eat ALOT of raw nuts and seeds as it was my main source of protein and only source of omega 3 but since the food intolerance began like everything else it slipped out of my diet. 

Just in the few days having the shakes I already feel so much better then I did before. My skin feels less dry, I have more energy (although I am still tired it isn't fatigue tired) I feel less irritable and generally happier. I feel sunny again. 

I then had an appointment with a specialist clinical nurse about the awful state my bowel is in! I had an appointment in London last week with a top consultant about my bowel and gastro system and it was so disappointing. I now make sure I go into these appointments expecting nothing but it still left us both feeling very flat. 

Firstly Dorset hadn't sent over ANY of the results from the extensive testing I have had on my bowel so she literally knew nothing about me. The clinic was running just under two hours late and during the appointment the Dr kept switching between English and Spanish (which we did just have to laugh about!) Of course it wasn't her fault that she had no test results or that she was running so late, these things happen but it was so frustrating because we couldn't make any progress. 

Right at the end of the appointment she declared she was going to write to the GP to have him remove me from ALL my pain medication but wouldn't explain to us why or listen when we tried to explain exactly why the pain service had put in place the 'cocktail' I am on (mainly to protect my bowel.) It's taken 2 years to get my medication to a point that it was at least reducing my pain so this news is a huge step back. 

My overall goal with my illness is to be 'drug free' but I am realistic and know this will take time if I ever do even manage to achieve it (which my pain consultant doesn't think I will) If my medication is stopped over night it will take my life away from me. There will be no going out, no cooking, no baking, no craft, no gardening, no getting up. It will be me stuck in bed like it was when I first became disabled. I can't go back there again :-( I have worked WAY too hard to build my life up around my illness. 

The very positive thing it has done though is given Tony and I the final push we needed to decide we are going to try to maintain my illness using alternative therapy. Sadly the NHS won't fund this type of treatment but there is a lot of evidence that shows HMS responds very well to alternative therapy. It's about taking responsibility for my health and instead of relying on Drs relying on myself. 

I will of course continue to work alongside Drs but from here on in I am in the driving seat. I just need to be a responsible driver! 

Anyway so back to the original update! The second appointment of the week was with this nurse who DID have all the results to my bowel tests. In a nutshell ALL the muscles in my bowel aren't working. That's both voluntary and involuntary! I now have to start a treatment that I will have to do everyday of my life... yes that is FOREVER! 

Bowel chat is not pleasant but it is a problem for MANY hypermobility syndrome patients so I will write about it. Cover your eyes now and meet us at the end of the blog if you don't want to know anymore! 

They originally did the tests to see if I needed surgery but as there are other complications with my bowel they can't risk it. 

The 'complications' being that where the soft tissue in my bowel has over stretched my bowel is full of 'pockets' which is there nothing they can do about.

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WOW I really am a bad blogger more days have passed and it's not over a WEEK since I started this post :-( I'm sorry! I have just been so busy this week! 

I am going to go ahead and post this just to get it out there and then I will start afresh tomorrow! 

Blessings x x 

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 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.

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....

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!