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.

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

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 

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.

Stepping into 2014 in style.

       So, erm, what's the deal with your t -rex?       

BOOM! Now if that isn't the best t-shirt you ever did see I challenge you to show me better!

2014 has descended upon us which means it is now less then 6 weeks until album launch time! Wow! Steve and I have put so much of ourselves into this album I hope people enjoy listening to it as much as we enjoyed making it. On a personal level it has been a bit of a sanity saver for me in the crazy that was 2013.

If you want to learn more about the music collaboration 'Songbird' I am in head on over to www.relaxx.co.uk or www.soundcloud.com/songbird-Unexpected. You can also like us on Facebook at www.facebook.com/unexpectedsongbird  or be our friend by searching Song Bird (two words!)

Ok, plug over! As much as I could go on and on about that particular project I shall save that for another day! This is a health/life blog after all!

Update time!

I managed to honour the promise to myself that I would not put myself under lots of pressure for the 'perfect' Christmas but instead have the best Christmas we could have with my health limitations and I honestly think I did it!

The 10 days leading up to Christmas were still earth shattering exhausting but that was because my poor husband had an accident and ended up with his arm in a sling for a week! Our daughter was still at school and buzzing about Christmas coming and oh man it was such a busy week. There were a few crying tired tears! The thing I learned though it that actually in a time of crisis I CAN cope. Physically I paid for it but that was inevitable, the fact is, I learned that I am not as useless in a time of extra physical demand as I thought I would be!

We had a wonderful Christmas and I really felt like we got it 'right'. Good feeling.

The colder weather has bought higher pain levels as it does, but I have taught myself a new word. Capacity. Now I hear you say "But Clo, surely you have known this word most of your life?" and of course I have but I have just recently realised 'Capacity' is a word I like.

It has removed the constant battle between my desire and my capability. For the past 22 months my pain has been the enemy, I have been locked in a battle to not let my pain 'win'. It was to be challenged and never 'allowed' to hold me back. Do you know where this attitude gets you? I'll tell you... no where fast!

The only place that gets you is crying on your bed because once again you lost the battle! (Yeah, so, I don't like admitting that to the world wide web but once again I will say this blog is all about what it is like to live with a chronic illness and, well, that's what it is like sometimes!)

I am now listening to my body more and more and taking her lead. I have not yet mastered this art but by using the word 'Capacity' I am able to rationalise my need for extra physical rest in a way I never have before. Go me!

I have an almost constant dialogue running in my mind. "Do you have the capacity for this? No? Then what about this? Have you got the capacity to do this? Yes?! Wonderful!" etc. I am also holding the consultants words very close to my heart... "Just be really kind to yourself".

I have learned if you live with a chronic illness and you are not kind to yourself  not only do you suffer but so do all the people around you who love you and care for you. I am day by day learning to forgive myself and be kind to myself. I cannot offer anything to anyone else if I am laid up in bed!


These are all amazing positive steps and I hope this can truly be the beginning of living with my illness instead of against it! If this is the first time you have read the blog (where have you been?! ha!) and don't know what on earth I am talking about all is revealed here http://www.youtube.com/watch?v=P-AeepZVuZQ


The not so good news is that my stomach has nose dived over the past 3ish weeks. Since June my husband and I have noticed that I am sick a lot more then your average joe but in the past 3 weeks I have been violently sick everyday and 'holding down' maybe one in every 10 meals? I am nibbling when I can and drinking lots of fluids but even that can be ridiculously painful at times!


 At the moment the only thing I can do really is keep trying different foods and drinking home made juices. A wonderful friend of mine bought me over a soup maker yesterday (which felt like the kindest thing in the world) so I am keen to use that. You throw all your veg in with some stock, set it to the type of soup you want and leave it in the same way you would a stew in a slow cooker. Here's the best bit though! At a set time within the cooking process it blends it! How awesome is that!

Needless to say I am so hungry! I feel empty in a way I never have before and would be inclined to chew on anything if it stayed still next to me for too long (says the vegetarian) watch out cat!

I live in hope that a week or two with juices and soups will give my tummy a rest and hopefully the muscles will start doing their job again. Lazy beeps! ;-)

Although this new development is far from my idea of fun I have achieved two things;

1. Using my visualisation to help me raise above the frustrations of it all. In my mind I have spent a pretty good chunk of time stood next to a lake in Canada watching my pain float away in the past 3 weeks. How very Zen of me! Haha!

 2. Not to panic. Even when the pain has been off the chart I have not reached my panicky pain since the 19th December which in the very least deserves a huge high five! It's not just a step forward it's a hop, skip and a jump forward! (Ironic concept there for a wheelchair user eh! LOL)



So I guess that brings us up to now! It's a funny sort of thing when we hit a celebration like NYE because everyone wishes each other 'health and happiness' at times that can feel a little like rubbing salt in a wound but even that I have managed to put into my own perspective.

Yes my disease is genetic and yes it will likely get worse with age but this is the first year that I have known what condition I am living with and I am keen to learn just exactly how to live with this. I will try everything and anything so that this becomes a part of my life and not my entire life. Chronic illness can consume you and lord knows that is nobodies 'fault' but I believe in my heart that my standard of living can and will improve in the months ahead. In 2014 I will be brave enough to embrace just about every alternative therapy under the sun because, well, for want of a better phrase I deserve it! I deserve health. Whatever my 'healthy' is. I deserve it.

It's our daughter's 5th birthday soon and we're having a party for her next weekend. Watch this space for the party blog!

Be blessed peeps!

Remember, tell the people you love you love them, tell the people you like how much they mean to you and concentrate your time on the people who make you feel good! Life is so precious.

It's beginning to look a lot like Christmas!

Tomorrow Advent descends upon us and the Christmas rush begins.

I should let you know right off the bat I adore the Advent season, from the Christmas lights to the Christmas cheer I throw myself into Christmas 110% every year. I love it.

I am not big on spending spending spending, in fact for the last few years I have spent less and less money in favour of making wonderful Christmas hampers for our nearest and dearest. Everything in them I make myself (or with my daughter) and they are full of chocolate truffles, shortbreads, sweets, sausage rolls, cheese straws a Christmas pudding and some homemade decorations. They seem to get bigger every year but for me it is the perfect opportunity to really get stuck into being creative!

There is ALWAYS a manic rush around the 22nd/23rd to wrap the hampers and get all the edible things in pretty bags with sparkly bows and I swear I won't do it the following year but alas so it goes on! Despite my yearly grumble (at some point in the hamper making process) I do really enjoy doing them and think it is so much more personal then if I were to go out and spend said much money. We live in a society that hoards so much 'stuff' I would much rather make people edible treats!

 This year though I am promising myself a different kind of December. "The Christmas Hush" I am not going to burn myself out in the run up to the big day and I am promising myself a bit of 'me time' everyday. Even if it is only 30 minutes I pledge to myself as a little quiet time to do something just for me because to let you in on a little secret I am my own worst enemy!

I really haven't got a handle on listening to my body and stopping when it says stop. In fact, sometimes when my body says stop my mind says "No don't you dare give in! Keep going!" Of course what that does is add to the pain the next day! I am learning though and this advent I have promised that I am going to use this month to get better at waiting!

Waiting whilst my body has a break and regroups, waiting for aches and pains to pass, waiting patiently for sleep to come instead of getting agitated that it hasn't arrived yet. I am going to try really hard to be kind to myself. It the reoccurring thing I keep hearing from people, "You have to be kinder to yourself"

It is so easy to get caught up in the corporate Christmas that demands so much of our attention and bank balance and as the shops get busier but people's patience gets shorter it results in December becoming one of the most stressful months of the year for most people.

This year I am saying no to fretting and trying to create the 'Perfect Christmas' and saying a very big YES to having the best Christmas we can have within all of our current limitations. After all, when you reach perfection really the only way is down.

So, from me to you. I wish you a very relaxed, calm, enjoyable Advent.

Blessings
x x

Nailed it

Today was a really good day. I woke up at 4.30am (not a flying start to the day) took some pain killers and knew pretty much straight away that there was absolutely no way I was going to get back to sleep before my alarm went off at 6am but instead of getting irritated I snuggled deep under the duvet and watched some of my favourite content creators on YouTube.

There are so many inspiring people on there, if you can sift through all the pointless videos and get to the proper channels it's really being used as a platform for change now and I love that. My absolute favourites at the moment are EcoVeganGal, (www.ecovegangal.com) Jason Wrobel (www.jasonwrobel.com) and The Vegan Zombie  (www.theveganzombie.com) There are all of these videos of people trying to have a positive impact on our planet and their immediate world and it's really inspiring. It's actually making me think maybe I could turn my journey of health into a vlog as well as a blog. Just to put it out there for anyone else living with this condition. It would mean I could keep it going when my hands are too painful to type which would be fantastic.

I've been thinking about vlogging for a while but the idea of talking on camera fills me with dread! I do however have a real desire to share my journey living with chronic illness. I want people who are where I was 18 months ago to be able to read or watch and maybe feel less hopeless? I've also found it really difficult myself to read about other peoples experiences and how it effects them day to day because people either tend to write when it's going really well or when it's all falling apart and there is A LOT of in between that isn't captured.

I have been made aware that I associate my self worth with what I can do physically and I am working really hard to change that. I think because I feel slightly abandoned sometimes which only began when I was unable to physically give to other people it's had a real affect on my confidence, perhaps more then I have been willing to identity.

It isn't about being all happy clappy and look at what I'm achieving despite my body working against me so much but I suppose 'This is what it's like'. It's really difficult to be honest with people around you (and yourself) when you're ill ALL the time because you can end up sounding like a broken record and some people believe it can't possibly be as bad as all that! I think when you live with a genetic disease it goes against this need in our society for people to 'get well', by having a chronic illness you are going against peoples desire to see you return to full health and that can feel really judgemental sometimes. Like, really, do you think if there was anything I could do to make this situation better I wouldn't be doing it?

All that being said though it really makes you strive to find things to be passionate about and I think if you can learn to channel that passion into something positive then you can begin to heal the hurts of  not really knowing what you have to offer people anymore. I know for me personally is perhaps one of the biggest emotional injuries of this time in my life.


I am also right at the very beginning of my journey and although I've been on crutches and my hips have been painful for 20 months now (and I have had painful health complaints for the past 10 years) I literally just got diagnosed so I feel like now seems to be like the perfect time to start cataloguing this in a variety of places. I know I have many life lessons to learn and I think I like the idea of being able to look back on those in years to come when hopefully I am doing a much better job of managing this.

It is making yourself really vulnerable though and I don't know anyone who would do that without any thought going into it, I just, I suppose I'm feeling drawn to creating a really honest project that might promote understanding and acceptance for other people living with chronic illness and disability... we'll see.

When your body says no

This is something I am really having to learn to live with. I thought I was very good at listening to my body and taking signs and signals from it but of course that was before my body stopped doing what I wanted it to do! It's easy to think you're working well with something, well as long as you're getting your own way! How you deal with it when it stops going your way, well, that is the measure of a person!

So, uncomfortable truth time. My mind and my body are SO disconnected now I actually refer to my own body as if it belongs to someone else. 'It' rather then 'I', 'my body feels' rather then 'I feel'. I am the stubborn child sitting on the floor with my fingers in my ears singing 'LA LA LA I'M NOT LISTNING' I have no relationship with my body and I am having to try really bloody hard to rebuild the scattered fragments that were once 'oneness'. Are you still with me?

I never considered that one could feel detached from ones own body until this all started but alas you'll have to trust me on this one. You know, a lot of hypermobility syndrome patients actually refer to their own bodies as the enemy!

If you asked me to describe my body to you I would say "It's unreliable, it hurts me all the time, it never does what I need it to do and quite frankly I don't trust it anymore" Lets face it, if I was telling you about my new boyfriend you'd tell me to leave him pretty quick!

Can we just get this one thing really clear. This is NOT a self esteem thing, this is not "I feel fat and ugly and I hate my body, look at my minging stress marks" This is "My body works against me and I don't want to be it's friend anymore!"

Example time, lets talk Subluxations. Oooo it's a saucy word isn't it? "Subluxations" Go on, say it out loud a few times, it's a good word to get the mouth round.

Do you know what it is? It is a partial or incomplete dislocation (sexy!!) and let me tell you, they aren't comfortable!
 
My husband and I had a giggle the other night because I got out of bed put my feet on the floor and four of my toes 'went', I stood up and my ankle went, I walked to the bathroom and my knee went, I sat down my other ankle went and then in a grand finale my hip popped. I was literally making music with my body. It was 8 subluxations in about 3 minutes which is quite something even for me. Each one needs tempting back into socket but it is a great example of exactly how unstable my body is.

Why... why would I trust such a thing!

If I wake in the night or in the morning before I get up I do a bit of a mental check list to feel where my joints are (they are always where they are meant to be!) sometimes it's a case of a click here and a click there, a click this and click that and I'm ready to get up. Now, I've done this for probably, well, since I had my daughter, it was just normal and I have been popping my hips and thumbs all my life. I've never even considered that this isn't the 'norm' until I saw it in a video created by another HMS sufferer.

I had my nephew on my lap the other day doing the auntie gig and out of nowhere my rib popped out, I'm not entirely sure (being blinded by pain) how I secured him  ('him' being my GORGEOUS nephew) on to the lap of the woman sitting next to me but I did and somewhat frantically tried to relocate myself whilst trying not to A: Make a scene B: Make anyone who was aware of what was going on reacquaint with their breakfast and C: Puncture a lung.

I have no control over these little (Little she says!) subluxations and it doesn't really make me feel like my body is to be trusted. Although the pain is insane I know what I have to do is remain calm and relocate it  but it can be really hard when you're in a shop and drop something, bend down to pick it up and semi dislocate your hip (for one thing it makes quite the clunk) "And breathe through the pain, wiggle the joint back into socket and try to calm down the members of public around you who have twigged what is going on" Awww, it's a laugh a minute!


 So that begins to explain why I don't trust my body but what other factors are there in this disconnection?

Well, I can have the most wonderful plans (like going to a civil ceremony of two wonderful friends that I have been looking forward to for months) and my body will just not calm down. Things that don't normally swell, swell, the pain just buries itself deeper and deeper into my joints and muscle fatigue makes me feel like I've put on 20 stone in my sleep. My body doesn't care what my plans are if it's going to have a flare up there is nothing I can do but surrender to the 'comfort' of my bed and sit. Oh also, as wonderful as a day or week in bed sounds to you this is absolutely not the same thing. I know every busy mum out there would do just about anything for a day in bed but please believe me I want your health and ability more then you want a day in bed.

Today I have had to spend nearly all day sat on my bed excluding: washing my daughters hair, preparing lunch, putting some washing away and preparing tea. All the activity was almost at breathe taking pain levels but oh my LORD I want to be able to 'do' and 'be' and just have a normal day! (Not that I can claim I have ever been acquainted with normality but that's a whole other story!)

It dawned on me on Friday that I don't remember what it is like to walk without crutches. Sure, I can do a few paces but I mean to like, walk into town or 'go for a walk'. If I close my eyes I can see myself doing it but I can't really remember what it feels like.

It's really hard not to resent something that takes away so many nice things from you. Even if that 'thing' is your body!


Anyway I am trying to heal the rift between body and mind but there is no cure for hypermobility syndrome so this is going to be a relationship I am in for the rest of my life. Like it or not!

I honour my body with what I eat and drink and am actually very particular about nourishing myself  but this is more then that. This is what my body gives back to me.

So I guess, in conclusion sometimes my body just says no and I have to learn to say 'Ok... you win'

Keep the looks to yourself... rant

It has been a while since I have updated here because it has been really intense since I had the hip blocks. There are but a few words to describe that little ordeal.... HOLY MOLY CHEESE AND WHISKERS has it made things WORSE!! Dear Lord the pain, it has this way of making me think it is the worst it could possibly be then it gets WORSE. There have been days since the hip blocks I think it is going to cost me my sanity! I'm doing my mindfulness exercises to try to put it into perspective and not let it make me anxious but boy this is BIG pain now all the time, I seem to be stuck on an 8-10. It's that sort of all consuming pain that makes it harder and harder to put on a brave face. Last week I thought I did pretty well at getting on but two separate people said to me "Are you ok? I saw you the other say from a distance and you looked really ill/tired"

I have had two hospital appointments in London (which involves a lot of travel from Dorset) which hasn't helped at all (physically) although both appointments have been really positive. You know, as positive as they can be when you have a chronic disease! Haha! ;-)

I now know that the Hypermobility Syndrome is 'extensive' and 'significant' and that it is affecting pretty much my entire body significantly bar my elbows (go elbows! woo!) I have been referred on to see consultants about my eye sight, my feet, my hands and my bowel. I have also been referred to hydrotherapy, a programme especially for people with HMS and EDS and will possibly be sent for in patient rehabilitation. It was the first time (bar my fabulous hip specialist who I started seeing in August) that I have felt I have really been listened to by a consultant at hospital. Not only did she listen she confirmed and affirmed everything that I said about the way my body works and feels and the crazy things it does.

It was also confirmed that the surgery I had on my hip last year will have definitely made my right hip worse and that isn't in my head. I KNEW it was worse but explaining that to people can be really frustrating.

So why the title of this blog? Well, I want to have a little rant. I am not one for ranting or confrontation or 'telling people how it is' in fact I generally shy away from all three HOWEVER here I go...

There are some people sadly who feel that it is their right to judge a disabled person because CLEARLY they can tell the persons extensive medical history just by looking at them and they're not sick really are they? They are just lazy. They believe they have the right to decide that if a person is in a wheelchair or on a mobility scooter they aren't equal to them and it's ok to treat them differently. (Not at all helped by our current governments attitude to disabled people)  Well guess what? (If you are a decent human being, as I'm sure you are, you will know the answer to this!) The person you are looking down your nose at has as much right to be where ever it is you are as you do and they have feelings too. Giving them a 'oh you disgusting non human' look will likely stay with that person all day and I see absolutely no need for it.

It's typical bully syndrome. They pick on people 'weaker' then themselves who wouldn't have a fair chance of 'fighting' back and it is outrageous. God I wish I had the strength in me to stand up for myself when people make crude remarks or give me filthy looks. I wish I could publically shame them for the discriminative nasty's that they are but I am yet to build up the 'thick skin' required to deliver such a come back.

People are shocked and taken a back when I tell them about the 'looks' and the comments that I get but it happens all the time, probably once an outing and it's making it really difficult to want to go out. I LOVE my home town and I have always got such a buzz from being out and about in it but when the pain is physically as bad as it has been recently it's really hard to potentially set yourself up for a dose of emotional pain! I get a lot of 'You have to keep going out and learn to live with this' from people who don't necessarily understand that it isn't as easy as that and I know their intentions are good ones but what I really need are people who will say to me 'Don't fancy going out today, I'll come to you'

Back in the spring I would find it really hurtful that people would actually get cross and become distant with me if I said no to an invitation say two or three times and I realised they gave up on me altogether but especially when the town is full of tourists it's really hard to find the bravery to head out, throw in the brain fog that is triggered by the stress of getting such looks and comments and a simple coffee or nip to the shops can turn into an overwhelming experience!

I am going to have to be really kind to my body this week and take it really easy physically. I am working on not equating what I can do physically to how I feel emotionally and have started doing more small scale crafts again so I can sit on the bed and give my body that physical rest it desperately needs when the pain is this bad but keep the old brain engaged in nice things! I will also hopefully have more time and energy to start writing this daily again. I don't want to just update it once or twice a month!

Blessings x x

Autumn days

Today has been cold but mostly wonderful. My thumb is really sore at the minute and I'm finding it difficult to do every day things that should just be easy. Chopping veg for stew earlier was horrible! I make a lot of stews for Tony and Amelia-Rose because I can do it in the morning before I'm too tired and I know it will just bubble away in the slow cooker and they'll have a lovely dinner. There's something very therapeutic about a good stew I think! 

I use my left thumb to hold in the lever on my mobility scooter which is unavoidable but boy am I paying for it at the minute!  

 

 

Tony is on a late shift tonight so started at 3pm and will be home about 10.15pm. It meant I picked Amelia-Rose up from school and we got to spend the evening just the two of us which was nice. Obviously it goes without saying it's lovely when Tony is around but Amelia-Rose and I got to spend some real quality time together today and it was absolutely wonderful.

Autumn is my favourite time of year, those wonderful blue sky days with a nip in the air and crunchy leaves under foot. I think there is something magical about Autumn.

On the way home from school Amelia-Rose and I collected lots of 'Autumn things' and used them to make an Autumn picture using sticky back plastic when we got home. Every pile of leaves we found we crunched in. Amelia-Rose with her feet and me on my mobility scooter! Lord knows what people must have thought seeing a fully grown woman going round and round in circles through leaf piles but it made Amelia-Rose and I happy and that's all that matters!

I took her a kinder egg for a treat after school and she got a little blue horse in it, when she first got home I had to go in the house whilst she hid it in the garden, she then drew me a treasure map and I had to go out into the garden and find her. I should point out Amelia-Rose is already better at giving directions then I have ever been! I was most impressed! After that we made the picture and Amelia and pretending the picture was pony land and I was the first human to ever be allowed into pony land. I quietly put the camera on the table and got some very sweet 'pony view' pictures and also made a little film. You can't see either Amelia-Rose or I in it, just hear us talking but I feel like I captured a really special time.

We had a nice meal together. I had a carrot, apple and ginger smoothie because I'm still struggling with my jaw and didn't fancy a crunchy salad but I am really enjoying and sticking to the raw food. It's amazing what it is doing for my energy levels.

 

I hope days like today are the days Amelia-Rose remembers when she is older. It really reminded me of how things use to be before I became disabled and I hope she holds onto these memories. Being as creative as I am I have always loved the creativity being a mum brings back into your life. We would always have some craft project or another on the go and be off on long nature walks looking for fairies or dragons.

 

When Amelia-Rose was born she reopened my eyes to the beauty and magic of the world and I loved living life at her pace. Everything was new and exciting and demanded being explored. If we were walking past a row of houses we would make up detailed stories of who might live inside and pretend we knew all about them. I am ashamed to say when pain became such a big part of my life I lost some of that. It was so hard to just function anything beyond that suddenly became out of my reach.

 

I feel like at the minute we are getting that back and that excites me so much. There is something very cruel about not being able to be the mum you know you can be.

 

I love the way that Autumn eases us into Winter. It is a slow transition that gently prepares us all for the darker days ahead. It has made me think about how my life is transitioning from thinking I was going to get better to accepting that this is something I have to manage my whole life.

What a blooming day!

Ok, so I'm not really sure what to write about tonight. We'll see where this takes us shall we?

The day started off a bit manic, I rung the dentist at 8.30am (in my undies if I'm honest!) and the only time they could see me was at 9am! Cue calm but fast (Amelia-Rose does not respond to rush!) frenzy to get dressed, do my hair and get Amelia-Rose dressed and be out the door and on the other side of town in 30 minutes. We were victorious though and I got there on time! Hoora!

I have been put on antibiotics for 5 days but then I am on my own! Eeeeek! You see the dentist can see from the outside that clearly there is some kind of infection in my jaw/tooth but it isn't coming up on the x-ray and until she knows exactly where it is there is nothing she can do. So, I have 5 days to 'treat the symptoms' but we actually need it to develop so we can treat the cause! I have to go back in three weeks.

When I got back I made some biscuits and started a new food blog www.theverybendybaker.blogspot.co.uk I thought it would be fun to have somewhere to post all my recipes and it keeps them off this page then.

I got to plant most of my tulip and daff bulbs today with mum which was nice. I am excited to see them all come through in spring. I've gone a bit crazy with the tulip bulbs but it will be worth it. Our garden is going to be blooming wonderful!

Blooming. I wonder if I am going through a blooming stage in my life at the moment? I feel most probably I am at that point where the bulb has sprouted and the stem grown but the beautiful blooming flower is still safely tucked away inside the petals.

I don't know though, maybe in 5 years time I will look back on this time and think 'Yup, you were blooming then'. I know now when I reflect on the years gone by I was blooming at times when I didn't necessarily think I was.

I wonder sometimes how differently life would have turned out if I had made different decisions and taken different paths but I am so grateful that I took the ones I did. Would it have been nice to travel around Canada or go and work in America? Sure it would have but if this period of illness was an unchangeable aspect of my life would a travelling buddy have cared for me in the way Tony has? No. Would photo's of sunsets make me smile inside and out in the way Amelia-Rose does? Definitely not.

I believe every word I have spoken, every turn I have made, every decision I have mulled over, every leap of faith I have thrown myself into to, every step I have taken has led me exactly where I am right now and this is where I am meant to be to give me the strength I need to succeed in spite of my health.

When I was ten my mum and I went to stay with our friends in Halifax, Nova Scotia in Canada. One day we went to a farmers market and there was a chap there busking. He was absolutely fantastic and my mum and I decided to buy his album together. To this day it is one of my favourite albums and tragically you can't get it anymore although Raghu Lokanathan is still going strong (www.raghumusic.com)One There is a line in one of the songs that has followed me around for the past 15 years and regularly pops into my head when I meet new people.

 "If you ask me where I'm from I'll say everywhere I've ever been" 

Pausing and Accepting

So, it would seem that God does in deed work in mysterious ways.

As you know I've had a really tough few days as I wasn't able to go on a trip I had planned with two of my friends. I have been looking forward to it for months and was crushed that I wasn't well enough to go.

It triggered the enormity of my whole situation on me and I had a really rough time working through it.

Anyway, late last night I got a text message from one of my friends telling me they had travelled to Bath and had a nice day but just as they were leaving to go to the hotel my other friend started feeling really poorly and was promptly violently sick. A message from her husband (that came through just as she herself started being unwell!) confirmed that he was sick too and their little girl had also been sick on the way home from school. They knew they had to drive home and my poor friend was sick on and off the whole way home.

THANK GOD I wasn't with them! For one thing turning round and having to face such a long journey home when I already would have travelled a lot that day would have been awful. Throw a day shopping on top of that and I would have been wiped out in bed for days!

The thing this has reminded me is that sometimes when things happen you just have to pause and accept it. Trusting that one day it will become clear why it happened. God had my back on this one.

I am also in a much better place emotionally then I have been since August. Truly. No mask needed. The whole not being able to go to Bath thing triggered something so much bigger then just the disappointment about the trip and I honestly believe I HAD to go through that. To release it, get it out in the world, out of my head and out of my heart. The shock and numbness of the past 4 weeks has been taking up so much space within my spirit there has been little room for positive drive and resolve. Now I have let that I out I have felt so much more positive today and I think, for the first time in 20 months I took the first step to truly accepting this.

I met up with my friend Gerry (or 'Lovely Gerry' according to my mobile phone address book) and we had a look through the market. We popped down to a part of town that I don't get to much now a days and I treated myself to some new make up and then we popped into a clothes store with a 50% sale and I treated myself to some lovely winter clothes.

When we went to try the clothes on it became apparent their was no disabled changing room (which, considering it was a national chain and not a small independent shop really surprised me!) Gerry went and asked the lady behind the counter if their was a seat we could use and she pointed to a very small very low stool that is there for people to try shoes on. As soon as I saw it I had to say to Gerry there was no way I could sit on it, I would have 'clicked' (semi dislocated) by hip! So, we scooted right down to the bottom of the very narrow line of the changing rooms and I put my scooter opposite the changing room and turned the seat around so I was effectively sitting facing into the changing room. Gerry then took the curtain and pulled it across the hall creating my own disabled changing room.

When we went to pay I wanted to use some of the gift cards I got for my birthday, I placed myself down the side of the counter between the counter and the jewellery rail so I wasn't in the way but still able to interact properly with the shop assistant. The way the gift cards work is a bit complicated and they had to ring the organisation to find out how much was on the cards because they had to put in the amount and then swipe the card. It was a bit a faff but just one of those things. The girl who had been serving us asked us to go down to the next till so she could serve the lady behind us whilst the cards got sorted. I had absolutely no problem at all with them carrying on serving but now I had to move from my perfect 'out the way but able to interact' spot and was forced then to be sat in the middle of the two tills where I couldn't properly use the counter or interact with the sales assistant.

A few weeks/months ago an experience as silly as that would have internally really upset me. It would have highlighted for me that I wasn't 'able bodied' and left me feeling like I was just in the way and shouldn't be there. Today though, it was different somehow. I realised it wasn't them treating me differently or being inconsiderate. They were just ignorant. Now ignorant may seem like a harsh word but I don't mean it in a derogatory way. They really just didn't have a clue that by not having a disabled changing room and asking us to move further down (when they could have just swapped tills!) it would potentially have a negative impact on our shopping trip.

I accepted their ignorance and decided instead of stewing on it for days or internalising it and it affecting my self worth I would write a letter to the head office about the changing room situation. It won't be a shouty cross letter about how outraged I was in the complete lack of suitability for their disabled patrons but just calmly explaining the impact it had. If I hadn't had someone else there me I simply wouldn't have been able to buy anything without trying it on first.

I felt really good that I was able to keep the whole experience in perspective. It was nothing personal.

We live in a very busy beautiful seaside market town which is flooded with thousands of tourists every year and the snide comments I get from people when I am out on my mobility scooter has really knocked my confidence. I had no idea people could be so cruel to a complete stranger. After a summer of almost weekly verbal abuse I think understandably when I am faced with any kind of inequality due to my disability I take it personally.

The first time someone had a 'pop' on me on the scooter I was so shocked I couldn't actually respond at all. Then the following week I decided to pop into town by myself as Tony and Amelia-Rose were at Saturdads.

It was a glorious sunny day and thanks to the success of Broadchurch  the town was heaving. When I saw how many people there were I was so excited for all the local independent shops and market stall traders. The impact of last summers awful weather has hit them all hard and it was great to see so much business for them! When I was making my way down the pavement in a single file line just like everyone else was I couldn't believe it when a man pushed his way past me glared at me and said 'It's too busy for YOU to be out today. Stupid woman' As is I somehow was the reason that the streets were so busy and as a consequence had no right to be there.

 A little further down the street there was a man stood blocking a shop door way with 5 (yes 5) little yappy dogs that were going mad at everyone who walked past and lurching out in front of people if another dog walked by. Everyone in that little area was clearly annoyed by these dogs but one man took it upon himself to tell me that  I was the problem and should 'get off the path'. Due to the dogs and the very small pavement only one line of foot traffic could move at a time. North or south. I was just about to pull away having waited patiently for my turn and a kind lady telling me to come through when the man stood behind me huffed his 'this is f*cking ridiculous' directly at me and walked through the gap, promptly followed by everyone behind him! Talk about feeling invisible! In the end the woman told whoever it was behind me to wait for a minute so I could go. I had only been out the house for 20 minutes but was desperate to go home.

I would LOVE to tell you that this kind of verbal bashing is a rare thing and everything you read in the papers about disabled inequality is untrue but from my first hand experience it is very very real. That is why something as silly as the shopping experience I had today would have at one point really upset me. My confidence has taken a big hit this summer but today proved to me I am healing.

I also didn't beat myself because when I got home I had to go and sit on the bed. I have perceived needing more rest and not being able to be on the go go go all the time as a sort of failure. Like I am letting myself and my family down. Today though I was able to not only think but also say out loud I'd had a lovely 2 hours shopping but I really needed a rest and if I didn't rest I knew I was going to pay for it. I accepted that for now anyway I only have the ability to be active (even though I am sitting down) for an hour or so at a time. My parents would call it eating an elephant one bite at a time. By acknowledging that I needed to rest then meant by the time my daughter got in from school I was able to give her my full attention.

I have decided I am going back on the raw food diet so I took my rest time as an opportunity to start writing my own raw food recipe book with my favourite online recipes. I will write more about why I follow a raw food diet in another post but I have well and truly fallen off the wagon recently and I feel pants as a result. For me this diet isn't about weight loss at all, nor is it a 'fad'. It is a lifestyle choice and one of the ways I manage my pain. The power of good food! Watch this space to learn more.

Be blessed x