There's always one more...

Hello my lovely dears!! "WHERE HAVE YOU BEEN?" I hear you cry! Well the answer to that is, I have been having the most wonderful summer holiday with Amelia-Rose and have been throwing my energy in the evening into launching and building my YouTube channel. 

I really feel like I have found my calling with my illness and the blog and YouTube channel, I feel like I am actually making a difference to the lives of other people living with chronic illnesses and hopefully raising awareness of HMS. There's so little on the web about what it's actually like to live with the disease day to day and when I first got diagnosed it's something that I really wanted to know. 

I can't lie, it is hard being so honest with the world but I would be doing a disservice to everyone else that suffers with HMS if I didn't paint the whole picture. Innately I am a very positive person and my moto for the channel is 'Positively combating chronic illness' and that is my main goal in all of this however, I have to show every side of it no matter how hard that is for me personally. 

Amelia-Rose goes back to school on Wednesday and I must admit I'm not ready to give her back yet! I know that a lot of parents have been itching for the new school year to begin for a good 5 weeks now but I definitely do not have my tent pitched in that camp! I am quite the opposite actually! 

I thought it would get easier the second year but I actually feel more churned up this year then I did about her starting school! We are so incredibly blessed with the school that Amelia-Rose attends and she does so well at school but still, I do so love her company. I keep joking with her that I will be like the children you see at pre school clinging to their mummy's leg ''Don't go! Don't go!" She finds my fake desperation VERY funny! Of course, I am only joking though, I am so careful that all she sees from me about school is sheer excitement! I don't want her getting a complex about school again like last year after I came out of hospital. 

When I reflect on the past 6 weeks I actually cannot believe how much we have done! Everyday has been an adventure and I am honestly so proud of myself for everything that I have done with Amelia-Rose. I love that I've been vlogging too so have footage to look back on and can remember every day. 

It's been a beautiful summer and one I hope to hold on to forever. My memory is probably the worst it's ever been right now but I'm not letting that defeat me or get me down. That's what the vlogs are for. I can watch and remember through them. I tell you what, this new venture has been a huge blessing to me. 

Tony and I sat and had a very serious chat about me starting a YouTube channel. I was nervous about what to share and how much to share, it's an incredibly big thing to put your life out there let me tell you but I just cannot shift this feeling that this is what I am meant to be doing. Tony was amazingly supportive and didn't have any of my concerns. He has been my champion with all of this! I also check with Amelia-Rose that she is happy with the footage before I post it and we're very careful not to give out any personal information like where exactly we live or our last name etc etc It's turned into a bit of a family holiday and is hilarious when Amelia-Rose makes off with the camera to film her own vlog! 

Once Amelia-Rose is back at school I hope to get the balance back between the channel and the blog. At the minute I literally only have the time to film and edit (and even then I am editing sometimes still at 2-3am in the morning because I don't go on the laptop when Amelia-Rose is up) at the minute but when we get back into our routine I want to also find time to concentrate on my writing also. 

I had a great catch up appointment with the lady I see at the pain clinic this week. I haven't seen her for a long time because I was having so many appointments we both felt like we could put our appointments on hold for now because sometimes i was having as many as 2 or 3 appointments a WEEK with various people. 

Now things have cooled off a bit with London I will start seeing her a bit more often. It's just really nice to sit and talk for an hour with someone who really understand pain. 
I told her about everything I have been doing to manage my pain and how much better I have become at pacing myself and she was so proud of me it was amazing! I told her all about my channel and the blog and she said how inspiring I am and what a great role model I am for other people living with chronic disease because I try so hard to still enjoy my life. It was really touching and has given me a real lift. It's nice sometimes to be told you're doing a good job. it was more then nice actually. It was pretty damn awesome. 

Personally it's something I do a lot for other people. I am a great believer in affirming people and will always try to encourage and cheer on those around me, even if I don't know them that well. I think the world would be a beautiful place if we all spent more time building each other up and less time tearing each other down. I know that sounds a little disney land but it's true. Pause and think for a minute, what does is actually cost you to build someone up? Money? Nope Going out of your way? Nope.  Does it hurt you? Nope. Time? Maybe a little but not much. Encouraging and being someone's champion is actually a gift that you can give for free. 

I'm carrying a lot of burdens at the minute outside of my bubble and I must admit there was a day last week when I really thought I had had my fill. I was ready to go get in the car drive to a field and have a really good scream! It's odd isn't it how you can have one part of your life so together and so happy and yet the other part is just, well, too much. You feel like the snowman glued in a snow globe. You can't move or protect yourself from everything that is swirling, fluttering and falling down around you. You just have to stand there with a top hat and a carrot for a nose praying your hat doesn't blow away or your nose drop off. 

So you see, going into that appointment and being told what a great job I was doing really did build me up, it gave me new ground to stand on. It made me believe that actually I really am doing my best and I really am seeing results (as appose to it all being in my mind!) and that led to me today almost, re finding my faith. 

I have never stopped believing in God. Ever. I've never stopped talking to him but since March my prayers have pretty much gone "I don't know how to talk to you anymore. I don't know what to say. I just.... I dunno. There's no words" 

I said to my friend "It's not that I don't believe or I can't see him working in my life because I do and I can but I can't feel him right now. You know, that feeling of the spirit whether it be calm or bursting out of you. It's gone" 

Then today when I was out shopping with Amelia-Rose and Tony I got too cold and had to come home. We were actually almost done anyway and I was going to buy a cup of coffee but I said to Tony I might as well just go home and make one (as I was going to take the coffee home anyway) so they went off to the tool shop and to the toy store and I came out and made myself 'proper coffee' (I will admit I am a bit of a coffee snob at home. I like proper coffee) I went and sat down with the paper and thought to myself '"ooo I could have some telly time!" 

The tv was still tuned in to what Tony had been watching the night before and as I began to channel flick I happened across one of the christian channels. I watch preachers online but have never ever watched any kind of church on the t.v before. 

Well, within minutes I was sobbing huge big uncontrollable tears all down my face because honestly it was like the preacher was talking just to me.I guess, like God was talking just to me. It gave me shivers and goose bumps and I felt the most connected to the Lord that I have done in months. 

I actually ended up recording it and am going to share some of the scripture here. I really need to sort my walk with God out and I feel like now is probably the time. I need to figure out how to fit together now that I've changed so much and my life had changed so much because I do want to be a beacon of his light. Every single time I perform on stage I always say the same prayer... 

"Lord let me a beacon of your light. 

Let every word that comes from my mouth 

be the word you want to be heard. 

My voice is of you and I thank you 

for my blessing. 

Lord I give this evening over to you. 

Let me shine for you" 

And it occurred to me today that maybe I need to say that prayer everyday. The day is my stage, the world is the audience. Maybe I need to give myself over to him every day and renew the bond that we have so that I can go forward and be the beacon that I always wanted to be. 

Catch up soon guys 

Love ya 

x x 

p.s (I am putting this up now to get it out there and will proof read and edit it tomorrow!) 

VEDA day 9; The harsh truth of Hypermobility Syndrome

Perhaps the joy of video blogging is that even on the really awful pain days I am still able to convey to the world how bad it has become. Both a blessing and a curse.



I went back and forth many times before actually posting this but in the same way my blog is all about honesty and what it is really like to live with Hypermobility Syndrome I wanted my YouTube channel to be the same.



It would be bitterly unfair of me to portray the day to day living of Hypermobility Syndrome but conveniently sweep the really bad days under the virtual rug and pretend they don't happen, which I guess for reasons of self preservation I like to do for myself (Who wants to admit to that much suffering?) but I can't do that to the rest of the community though. Their suffering is as real as mine and I don't want to encourage people to head their friends and family in the way of my channel to understand more about their lives for me not to honestly convey it.



So for that reason, after growing a pair. I can say to you all.... This is what happened this weekend. Can't say it's the easiest thing I have ever shared with YouTube. But I'm a gal on a mission.

Worst pain day ever

Perhaps the joy of video blogging is that even on the really awful pain days I am still able to convey to the world how bad it has become.

I went back and forth many times before actually posting this but in the same away my blog is all about honesty and what it is really like to live with Hypermobility Syndrome I wanted my YouTube channel to be the same.

It would be bitterly unfair of me to portray the day to day living of Hypermobility Syndrome but conveniently sweep the really bad days under the rug and pretend they don't happen, which I guess for reasons of self preservation I like to do for myself.( Who wants to admit to that much suffering?)

I can't do that to the rest of the community though. Their suffering is as real as mine and I don't want to encourage people to head their friends and family in the way of my channel to understand more about their lives for me not to honestly convey it.

So for that reason, after growing a pair. I can say to you all.... This is what happened this weekend.

Saturday

http://youtu.be/L4bXy7kdJHU (Click the links in order)

Sunday

http://youtu.be/a8rW3Z8RHvI

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!)

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

Thinking about living....

When I was 5 days old I almost died. No really. My mum went to check on me and I was lifeless and not breathing in my cot. It turns out she caught me in the early stages of SIDS (sudden infant death syndrome) For the next 6 months she had to wake me every 3 hours to prevent me falling into a deep sleep and to essentially I guess, check I was still alive.

When I was a teenager I plummeted into a very deep dark depression and developed an eating disorder to boot. Even now when I see the photos of myself standing at 5'11 and weighing just over 7 and a half stone I am still shocked. I really did never realise how physically sick I got.

I can't and won't lie. On more then one occasion the illness nearly killed me. I nearly gave up hope that I would ever have any future and contemplated taking my own life several times. Wow I've never told anyone that before. Many many years after my recovery I once found an old suicide letter I had written. I wrote two letters that night. One was a suicide note and the other was a letter telling my family I had run away. In the end. I ran away. That was the beginning of my healing though. I guess once you reach crisis point the only way really is up.

Then when I was diagnosed with Hypermobility Syndrome (Elhers Danlos) I had to wait 5 awful months before learning that I did not have the vascular form which can be life threatening. I didn't tell ANYONE that was a possibility. I didn't even tell Tony until the night before we were going to the appointment just what news we may hear the next day. I cried the two and a half hour ride to my grandparents house (we were getting on a train from their town) and had to give him an explanation for my turmoil!

I don't know why I have been challenged with so many 'near death' experiences. I can't say it makes me contemplate my own mortality more then anyone else does. I never even think about it day to day to be honest but something someone said to me today really made me wonder.

Over the weekend the amazing community I live in all rallied together to put on an amazing musical fundraiser to help Tony and I manage with the many many extra costs incurred because of my HMS, Such as having to travel to hospital appointments over 3 hours away and all the equipment I need to make life easier. We have been blown away with the support the community have shown. Local shops all grouped together to help cover the costs of the over heads. The local theatre gave up the premises for the event. Raffle prizes came flowing in. All in they raised over £1700 on that night. An amount of money that is quite frankly breathe taking to us.

I was talking to a shop owner today and he said "Well, you make it easy to want to support you. You live. You're not sat at home feeling sorry for yourself, you've got this obvious drive to live your life. It's easy to help someone that wants to carry on as much as you do".

It's not often that we are able to agree with someone when they compliment us but in this case I do. I said to him "I've got a life to live, I've got to carry on! Can't be sitting at home doing nothing!" I do have a very deep desire to live. And I don't mean heart beating and breathing I mean to LIVE.

To feel the rain on my skin, the sun on my face, a laugh in my mouth, tears on my face. I want for Amelia-Rose to look back on her early years and think 'Jeez, my mum was ALWAYS there for me. Playing with me, baking with me, teaching me crafts, tickling me, goofing around with me, going on walks with me.' I want Tony and I to look back on these years and think 'We never let a day go by when we didn't say and FEEL 'I love you''.

This life, my life, is such a precious gift. Your life is a precious gift. It's all too often people let life whizz by in a blur of 'I must do this'. When was the last time you stopped to think "Was I alive today or did I just get on?" No one else can live our life for us. We and only we are responsible for that.

I believe every living thing has a right to live a good life. It's one of the reasons I don't use ANY product tested on animals and I strive to be a vegan (unfortunately my meal replacement shakes from the nutritionist prevent me from doing this right now) I don't believe my life is anymore imperative then that of an animal and when you suffer as much as I do you would NEVER have ANY hand in causing suffering to another life.

Although I've had probably more then my fair share of encounters with almost not being here anymore the thing that I am often overwhelmed with is a deep burning desire to live. It isn't about life and death it's about LIVING. I'm not talking about not wanting to die I'm talking about wanting to make every second of every day count.

It should always be the first thing on our list but so often it is the last.

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! 

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

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