This little light.....

It's so easy now a days to get caught up in everything in our lives that feels overwhelming, especially when you're suffering with depression. Another example of living with something that makes you feel so very unwell but doesn't change the way you look on the outside. Whether it's a physical invisible disease or invisible mental health if we aren't careful it can leave us feeling that way. Invisible.

A constant line in my blogs. I find these really hard to do but, I do it and I do it for the next generation so that we get earlier diagnoses and better community understanding. Apart from the severe pain in my hands, arms and wrists one thing I have never found difficult is writing. There are times when I have no words to say but will sit at a laptop and they come flowing out. Like an unstoppable force my fingers hammer away and I am liberated. There have also been times this year when I have been afraid to face the laptop because I fear what will come out. So many memories from the last few years that I haven't wanted to remember. Like the look in Tony's eyes when I was taken down for emergency surgery. By the time I went down for the surgery I had had a twist in my intestine leading out to my stoma for 4 days. I was delirious and had lost the use of my arms and hands, they just cramped and shook violently but I will never forget that look. Even in the fogginess of the pain and the brain clouding (which is the only way I can describe it) I will never forget that look but I have not wanted to face it again.

When you're a young man or woman living in a very elderly body the frustration can be like a forest fire rushing its way through a national park (reference many wonderful holidays in Canada for which I count myself very blessed!)

The last few years I have been so unwell physically that I've not really let myself FEEL the emotional side of living with Elhers Danlos Syndrome and it's something that has hit me like a sledge hammer this year as I have been digging very deep to find the strength to talk about it openly in public on my blog but when did showing our struggles become a sign of weakness?

Generation upon generation we were taught by society that showing emotion was a sign a weakness and thank God every generation has made it a little easier to talk more openly about emotional and mental well being but we have to keep going and I don't believe we are all the way there yet. I do believe that the tide is turning but we cannot become complaisant, we have to strive to create a society where we can say openly and without fear of judgement "I am barely hanging on and I need help." Even better 'I'm a bit worried about myself at the minute, I've been feeling really down for a few weeks now and need someone to talk too" So we stop the decline to crisis point for people living with long term mental health issues. 

When illness and disability hit our worlds shrink around us as we become more poorly, our care is cut or we just can't face to go outside. If you have been a social person before it is easy for people to make the assumption that you still have the large circle of friends you had before you became very unwell and you get lots of visitors and loneliness is definitely not on your list of symptoms. But we all know what they say about assumptions. They only make an ass out of you and me. The often housebound person with a list of regular visitors is far more rare than you might think. I don't want to go as far as saying it is but a myth but I will say for all the people that I have met who have regular periods in their life where they are housebound none of them have regular visitors. Online communities are a great way of staying in touch and interaction on social media is a great way for the chronically ill to stay in touch with friends and family but that does not substitute regular visits.

There are a lot of great carer groups in most towns that are aimed for carer's of the elderly but there seems to be a real gap in the market for young people that require full time care. There is also a lack of support groups aimed at people living with chronic illness and disability. It's only through my online work that I have met several people in my town living with Elhers Danlos Syndrome or Hypermobility syndrome and when I have asked if they would be interested in attending a group if I set it up they have all been incredibly keen. That is a post for another day though. Sorry I have wandered from my point.

I have always been a very social person, moving in many different crowds and making many wonderful friends as I have gone along but now in all honesty I have 3 or 4 people that make regular efforts to come and see me. (Excluding my parents) If I am going through times of being totally housebound the only consistent people in my life are my parents, my husband (who also doubles as my full time carer) and my daughter (my passion, my love and my reason for rising everyday to throw on clothes even if only to give the illusion that I have been able to be active that day)

Chronic fatigue is something no one can really put into words, for centuries we have been trying to put feelings into words but you can't ever really feel something for someone else. People think when you talk about fatigue it means that you're 'just' tired all the time and that is true up to a point but it actually goes so much further then being tired all the time. It is sheer exhaustion unaffected by how many hours sleep you get. For me I actually go the other way and the worse my fatigue is the worse my insomnia becomes because for me fatigue means my arms and legs ache even beyond my 'normal' muscle pain. The worse my insomnia I the worse my mental fatigue becomes and I find myself switching off halfway through a sentence, completely forgetting what I was going to say. I also lose track of words! I know the word I want to use I just can't describe it or find it in my large vocabulary! Simple everyday words. It can be quite ridiculous! With regards to my physical fatigue I often find that I cannot be active all day whilst Amelia-Rose is at school and then be active with her in the evening. I save up my energy so that when Amelia-Rose wants to play etc I am able too. It is incredibly frustrating!! I also know that Monday an Tuesdays are not great days because I often try to join in with as much as I can over the weekend wiping myself out for the beginning of the week.


What does all this cycle of illness and isolation do to someone? Well, in my personal experience it takes away little pieces of your confidence. It seems human nature to accept responsibility for everything and oh how great we are at blaming ourselves!! Ignore the rational "They have their own busy lives" and the more loneliness eats into you the more you hear yourself say "I've done something, they don't come around anymore because they don't want to see my suffering, and of course it's my fault I am suffering because it's my body therefore my responsibility" I say no. It is NOT your fault that the moment genes met genes (ew! ew! ew! Don't make me think about that! My parents NEVER did that! Well dur! Of course they did and they probably enjoyed it as much as you do!! Hahahahaha! Sorry, just putting in a little humor! Whilst totally freaking myself out!) something within your structure wasn't quite right creating your chronic disease. This is no more your responsibility or fault then it is your fault that it rains. Do you accept responsibility for the weather? Of course not so please find a way to release yourself from the shackles of blaming yourself for your chronic illness or disability. Not easy I know. I have found writing letters to myself a really great tool in helping me be released from that burden of responsibility.

Sadly people living in the 21st century are totally overwhelmed chasing after 'perfect' and the idea of 'perfection' that we perceive to be true. I must get the washing in, the kids lunches done, tidy the house, pay that bill, change that bed, go to that group and for many people work too. The pressure of 21st living is immense but if you want to do more to give back then I urge you to contact that neighbour/friend/old friend/elderly member of your community who you know doesn't get much opportunity to leave the house and ask if they would like a visitor. If they say no the first time it doesn't mean it will always be a no so keep asking. It can take a while for some people to come out of their shell but that doesn't mean they don't want to. Admitting you're lonely is very difficult with it being tied up in a nice bow called "the fear of rejection."

I recently invited a lady I know from church who I know has been suffering with her health and experiences a lot of time alone around for a cup of tea and we had a wonderful time. In fact she was so touched that at one point in our conversation she began to well up.

I will openly admit that sometimes I can be absolutely desperate for company but one of the biggest embarrassments for me is when our house is chaotic and untidy. Not perfect. Not an Ikea showroom, I mean really, come on now.  I don't get to go round to other people's homes very often and when that happens you don't get to see that this is the reality for a lot of people! Although I know it to be true I don't think that any of us can deny that once we have witnessed something to be true it is much easier to accept. When I was well and fully able I loved cleaning and organising so suddenly living in a chaotic house does neither Tony or I any good. Don't get me wrong we aren't talking an episode of hoarders here not nearly but because I was recovering from surgery when we moved in (I hadn't even seen the upstairs when we signed our tenancy agreement) and have pretty much either been facing or recovering from surgery or in and out of hospital ever since I have never got the cupboards organised. It is difficult to find new places to put things when I haven't had the physical strength to take the things we no longer need or use out of rotation! Something I regularly did when my daughter was a toddler.

The great shame I feel about this is enormous but over the past few weeks I have been talking to myself differently (we all do it!) and driven by my deep urge for it not to be so hard to ask for help for the next generation to ask for help I took to Facebook and posted a very open honest post asking for people to come and help me organise the cupboards so on the days I do feel well enough and pain free enough to do craft, paint, whatever then I can. Little things like this really help fill the lonely hours and help you look after your mental health when your physical health is overwhelming.

In a disabled home things need to be accessible and organised. From the front door to the toilet and all that is in between and living in a home that isn't is incredible frustrating. There is a total lack of accessible housing (bungalows) in my county. All the bungalows that are on the social housing register are advertised for people over 65. This is true in many counties around the UK. Moving around needs to be easy and to be honest often it isn't so having order in storage spaces becomes even more vital. I was thrilled when various different people (some of whom I haven't seen for years simply because we fell into different social groups when our children started preschool, school etc) offered to help.

I do believe that most people are innately good, we just all get too wrapped up in our own lives which is understandable and totally forgivable. I know it can be very different in different communities which is another reason I feel so blessed that I live in such a friendly community but if you ask for help you may well be surprised by how many people will come forward because they want to help.

It's ok to ask for help, it's ok to tell people when your suffering is getting away from you and you need support. In my experience the more isolated you are the harder life gets but then you don't want to admit that life is overwhelming so you loose your voice altogether and remain silent. Breaking your silence is difficult but it's amazing how liberated you will feel because of it. 

There are billions of people on the planet and you may well say that the last thing the world needs is more noise but what if it's your voice and your voice alone that is the thing that will give another fellow human being the will and fight to hold on. What if it is your words and your words alone that can sow a seed of hope in someone who otherwise feels that their life is a hopeless life. What if it is your unique experiences that can change the way of life for hundreds of lives? You were blessed with a voice and I urge you to find the courage to use it. Even if you're not ready to share it with the world yet that's ok but talk, even if it's to your cat! Talk. Let it out, it's amazing how less chaotic thoughts become when we release them. When we can acknowledge our feelings and put them into words suddenly they can become less or more overwhelming. Don't forget overwhelming isn't just a negative words. It is also an immensely positive one. "I was so overwhelmed with the feel of injustice in the world that I knew I had to do something", "I was so overwhelmed with the feeling that I had to paint that I did it" "I was so overwhelmed with the feeling of righteous anger that I posted online posts, put leaflets through doors and spoke to anyone who would listen until...." When things overwhelm us it is often because they have become so big inside that they have to be let out.

I am unashamed to say I have done ALOT of crying recently. It's amazing that my husband's chest hair isn't as long as Rapunzel's with the amount of water it has had poured onto it recently but each of my painful tears have released a painful cry I have been holding in for far too long. I think to cope with the last few years I have turned in to a classic "Push it down" er. Before writing songs and poetry was how I processed my feelings but when you're very very unwell physically and in and out of hospital you often stop yourself feeling because you're doing all that you can to survive physically but at some point that has to come out and it is ok to cry. This is a message especially important for men to hear. It is ok to cry.

I have been trying to get out the house more lately, it's exhausting and my pain has increased greatly but I know that I have been suffering with depression this year as the 'foreverness' of my condition has finally sunk in but I do not believe that I will be depressed for the rest of my life. I still have hope. I still know I have paintings to paint, songs to write and sing, things to say, hope to share, awareness to raise. My condition has affected every part of my life but I am so blessed that I still have this wide open future ahead of me and as long as I have love in my life I know I will keep going. As long as there are other people out there suffering alone I know I will still try to fight for their lives too. If only to bring them hope.  

Next year amazingly my husband and I have been married for 10 years and I cannot wait to see what the next 10 years have in store for us. I'm not deluded, I know there will be pain, I now things are going to be hard, physically I will more then likely get worse but I also know we have the strength to face it together. I am so blessed that I have found my soul mate, my one and only, I love him with such wholeness and so deeply that I know everyday I will try to make him smile no matter how hard things get. I miss his smile when thing are hard. I miss his laugh when I see the worry in his eyes. This wonderful man who was flying in his new profession and walked away from it all because he said if someone had to care for me he wanted it to be him.

I'm working on my happy list as mentioned in the last post and it's amazing how this has ignited my creative self again. I feel like I could pop with creative vision some days and it's great to have that fire back, I am dreaming again. I don't need great physical health to be creative. A lot of creativity can be done from the confides of your own home now a days and still released out into the world via interne advertising. The internet is a great blessing for the housebound and physically challenged. I'm vlogging again and am going to try to write more on the laptop. I have always loved putting pen to paper and the 100s of years of tradition in that but writing with a pen is one of the most painful things to do with my wrists so with a little mind set change there's no reason why I can't type instead. Yes it looses some of that romantic energy but disability is about adaption so I am going to try to embrace it further not only to write my blog.

I may not know what my life's purpose is yet but that's ok. My life is about the journey not the destination.

Don't take away my dreams

It's difficult when you're suffering to consider what life will be like in 10 years time... 5 years time...heck even next week!

Living with a condition that leaves you in constant pain and often terrible fatigue it can be difficult to consider what your future will look like but it's something that I have to remind myself of.

 I still have dreams and enough determination to fight for them. I'm finally unashamed to say that I have been suffering with depression this year and there are days that thinking about the future is just too overwhelming (I do not mean I am suicidal but anything beyond that day, that hour, that moment is just too much) but it is on those days that it is so important to dig as deep as we can and too remind ourselves that we do have a future and we do have dreams.

Thanks to Pinterest (and don't get me wrong I do really enjoy Pinterest, especially as a creative person!) I know that bucket lists have become a huge trend in our society but I must admit I struggle with them. I think it's wonderful to have a board of all the things that you would like to achieve in your life but what happens once you have created that board with the best of intensions? Does it spur you on or does it just become a board in the bedroom that gets over looked? Perhaps worst of all does it become a constant reminder of the things that you AREN'T doing? 

I am an innately positive person, glass half full, silver lining, after the rain comes the rainbow but 
I know for me personally at the moment I couldn't bare to have a bucket list staring at me when I lay on the bed in agony too exhausted to move, saving all my energy and strength to be the mummy I want to be when my daughter gets home from school. 

There are days where I have so much that I want to do but it's only the hour before my daughter gets home from school that I can really 'get going' because I know if I do all the things that I want to do I simply won't have the energy or ability to do all the things that will give my daughter the childhood I would like her to look back on when she's an adult. What I absolutely do not want her to look back on is a childhood where I was never able or well enough to do anything with her. As parents we all make sacrifices for our children but when you live with a chronic illness those sacrifices can be even greater.

I've had to change the expectations of the mother I always wanted to be (going on rambling walks in the countryside, sneaking off for the weekend to go camping, building dens in the wood, dancing and jumping on the bed) to the mother that I can be today but on that long, sometimes very emotional journey I came to the realization that actually the one and only thing that really matters is love. 

Do I love my daughter any less because of my condition? Do I like the time we spend together any less? Has my drive and determination to be the best role model I can be for her changed? Of course the answer to all these questions is no. None of that has changed. In fact, it is all 10 fold bigger because of the extended periods of time I have had to spend in hospital away from my daughter or stuck in the house recovering from surgery whilst life goes on around me. 

It's amazing how many things you can do from a hospital bed no matter how awful you feel! We've decorated ostomy bags, done crafts, made story books, done puzzles, played barbies, played doctors and nurses and when I've been at home recovering from surgery we borrowed a spare single bed from my parents so I moved downstairs able to be involved in day to day family life without being shut away upstairs. 

We also chose a beautiful selection of funky wooden buttons that I sewed onto her poloshirts so if she was at school and felt sad or missed me she could feel her button and know I was with her, thinking of her and loved her very much. 

If I didn't have this condition I never would have been away from her for perhaps more then a weekend when she went for a sleepover with her grandparents, I wouldn't know what it is like to be away from her, to miss her and feel so inadequate, to want to run home to be with her. My condition has made me love her with more determination and passion, it has reminded me to make sure I show her that love and tell her how I feel, it has made me appreciate every moment I have with her and never take that time for granted.

Not one to usually swear but one day instead of a bucket list I decided to have a f&^k it list! 

My f%^k it list consists of all the things my body tells me I can't do anymore but I am going to do anyway. Some walls are built to keep you safe and some are built for you to break down. Of late though I have forgotten that, I have read all the signs on the wall that say "you can't" "you won't" and believed them. I have stood in front of that wall for far too long and doubted I have the ability to break it down. I have considered that because I cannot break it down in one almighty strike I cannot break it down at all. But that wall does not have to be broken down in one almighty attack it can be taken down piece by piece, in time and slowly.

There is a fantastic documentary about a lady called Lara Bloom (who I highly admire and gives me that kick up the butt to keep going in my mission to raise awareness of invisible disease when I need it!) Lara also suffers with Elhers Danlos Syndrome and decided she was going to complete the London Marathon to help raise awareness for the disease and fundraise. 

The documentary called 'Issues with my tissues' follows her on her road to success which I would encourage you to watch. Lara did not suddenly become a full time runner or distance walker overnight but she had that wall in front of her telling her someone with our condition could not complete the London Marathon and she broke that wall down one brick at a time.

I think we can all learn a great lesson from Lara, despite our broken bodies it is our right to still have dreams. This disease is debilitating, it is life changing, it takes away so many of our expectations of the life we thought we would have and the life we had planned out for ourselves.

 My Mum wrapped it up beautifully for me in one sentence the other day "You were never meant to be disabled, you were meant to be living your life as a funky hippie somewhere with a gaggle of children" and she is right. My infertility is by far the hardest thing I have had to learn to live with. But the other thing my family and friends constantly remind me is that I am still me.

My f&^k it list is about carrying on and believing in myself despite the limitations of this disease and what that means for my life. Elhers Danlos Syndrome is sort of like the Autistic Spectrum in that there is a huge range of symptoms and how people are affected by it. Some are high functioning and manage to still have a full time job and some live a lot of their lives in hospital.  Like a lot of other invisible diseases.You never really know what kind of day you're going to have and although many with EDS (or Hypermobility Syndrome) become pros at relocating their joints there's always that little thought locked away in your mind that you may have to go to A&E because you can't relocate a joint or do more then normal damage to yourself.

 I have to use a wheelchair so my EDS is visible in that way but for a lot of people it is a totally invisible disease and there are hundreds of diseases out there that have huge debilitating affects on peoples lives but because they look healthy people assume they are.

My F%^k it list is about knowing I may not ever be able to do something but trying anyway. For me one of my biggest targets on my F%^k it list is to complete my degree with the Open University. Before I got unwell it had always been my intention to get a degree in Childhood and Youth studies which I would use as a gateway into training to be a higher level teaching assistant and the dream was to work in my daughter's school as a teaching assistant or a one to one teaching assistant (as all my experience is working with special needs children) then progressing to be a higher level TA or family support worker.

I worked for 4 years when my daughter was a young baby/toddler to get my degree but 2 courses away (The last course meaning I would graduate with honors) from it I accepted that I wouldn't get to graduation and be so proud of myself because in reality I simply couldn't do the course anymore. I was too unwell.

That fire has never gone out though so a few months ago I applied for a prospectus in counselling and psychology and it arrived just before Easter. 'That' voice of depression in my mind told me I would never be able to handle the work load or attend the tutorials (which are only once a month because the idea is you do everything at home and the tutorials are not compulsory) and I believed it so put the prospectus away but that's the whole idea of my f-k it list. So the other day I pulled it out the cupboard and have decided that I am going to apply for next year and just give it a go.

Another thing on my f-k it list is to launch my line of greeting cards that I have been developing over the last 18 months but again not had the confidence to do. Last month though I decided that so what if no one buys them and it never goes anywhere at least I know I tried so I've been beginning to take the wobbly baby steps to do so.

Depression is like a black cloud that falls over you and makes you believe every bad thing you have ever thought about yourself. I personally do not know anybody with EDS that has not in one way or another battled with some level of depression. It's difficult not knowing from one day to the next how your body will be.

You don't just get over depression in one day, it isn't a question of one day you have it and one day you don't. I know it will take a long time to recover from but I am determined to do it.

I can't deny, it is difficult to live with a chronic disease and not concentrate on everything you can't do anymore but we must hold on to our dreams, we have to hold on to our faith that things will get better and be brave enough to tell someone when we aren't coping. It is so hard to post posts like this but I do it for all the other people out there who live with an invisible disease because it has to become OK for us to talk about how hard things really are without shame.

Whether the invisible disease is mental, physical or both we need to break these taboos around invisible disease so that we can talk about them. It isn't easy to find the words some days but just having someone to sit with you and make you laugh despite how bad the pain is can make you feel easier. 

Getting diagnosed with a chronic disease isn't the end of the journey it is just the very beginning and we need to support these members of our society. There are so many physical symptoms we have to live with with a disease like EDS that the psychological ones often get over looked because people don't want to talk about how they aren't coping because they don't want people to look at them any more differently then they already do.

The only thing we really want is to be treated like we were before we got sick, you want to be involved in things with all your friends still, you want to be able to go out with your partner still, you want to be able to go crazy and have fun with your children but it just hurts so much. And we aren't talking I stubbed my toe pain here people, this is all over your body screaming on the inside pain. We may well look well on the outside but on the inside is a broken body and at times quite often a broken heart.

I want to tell everyone that I'm OK, I want people to believe that I'm OK because I want to believe that I'm OK. I don't want this disease ripping through my body taking me down bit by bit. I don't want to remember what life was like before EDS took over because I don't want to accept that this is my reality now. I don't want to accept that this disease has taken so much from me, I don't want to remember back to the days when I could run and jump and not be in pain all the time. I don't want to think about all those plans and dreams that I had for my future that physically I won't be able to do.

But we have to hold on to them, we have to grip them and not let go, we may have to build new ones and change them slightly but we have to hold on to them.

 EDS is a horrible disease but it will not win. And having bad days isn't losing, it's not giving in, it's being human. Struggling with depression whilst living with a chronic disease isn't losing. It's being human. I'm saying that twice because I want it to stick!!

  I don't know anyone that could live with what we live with and not get down and feel desperately sad sometimes. No one deserves to feel the way we feel physically day in and day out. NO ONE 'deserves' chronic illness it is just something that some of us have to live with and we need help. Again. That is a really hard thing for me to say but I'll say it for all the other people out there who suffer with chronic disease. We need help.

We need for you to still treat us like human beings. We need for you to pick the phone up and ask if we're alright, we need for you to remind us to believe in ourselves. We need that bit of extra support and trust me it is really REALLY hard to admit that.

I am always telling people I'm alright when I'm not but what do you say to someone when they stop and ask in the street if you're alright? Even answering a simple question like "How are you?" is difficult!! Do you really tell them that it took you 2 hours to get ready. You couldn't do it alone and your husband had to help you get dressed? Or do you just tell them that you're OK?

Mindfullness is a great tool to help you learn to live with chronic illness, which I will explore in further details in an upcoming post. In essence you just concentrate on one moment at a time and when I am out the house in my wheelchair and am asked how I am that is how I feel, not only ok, bloody fabulous I'M OUT THE HOUSE! 

It isn't always as simple as that though, there are days when you can't do that and I'll say it again THAT'S OK. It is nothing to be ashamed of YOU'RE human!! 

I firmly believe that when people ask you how you are and tell you you are looking well it comes from a place of love and kindness and similarly I understand how difficult that can be to hear on bad day. No matter how desperately hard things get sometimes though my dears please remember you have so much potential. 

At the moment around many carparks and pavements the Poppies of the year have started to open in all their stunning glory, out of bricks, concrete and cracks these hard tough spaces spring beautiful flowers that for all intense and purposes should not be able to grow where they are. 

You are the Poppy, you're beautiful, you're hardy, you are something to be admired and most importantly you come back and keep growing year after year. 

It's time for some truth

Ok guys, over the past few months I have written, left, written, deleted and left again. I have tortured myself about my blog. All I've ever wanted to do with this blog is reach out to all the other people around the world who suffer with chronic illness and pain to tell them the way they are feeling is OK, they aren't alone. I can't lie though, it's hard, it's hard to dig deep into your own reality and face it.

Your body is broken.

 All of those dreams you had, all of your plans, all the things you thought you would be. Gone. And yet, this has to be done because as Tony, my rock, lifeline and light of my life keeps telling me. "Chloe, all the other people out there who live with a disease like yours must be going through what you are. It's OK to be honest. You can do this, you want to make a difference and you can".

I have been ashamed though, ashamed that I have hit a place where suddenly I'm not coping anymore. I curl up in a ball and I cry. "This shouldn't be my life, what happened. I've never let this disease take my 'self', my grit and determination to not let this disease 'win' is what has got me through everyday. Of the pain, the loneliness, the "Holy crap what the f did I do to deserve this?" moments of fury when I want to rip my DNA out of my body and get my body back.

I've never written like this before but I know there are people out there who will, who have or who are having these same feelings and my message to you is. You are NOT alone. You are brave and beautiful. You are loved and strong. You are not responsible for this. You did not do anything to 'deserve' it. You just got a really shitty straw.

It is OK to have days when you cry, days, when you just need a friend but you're too scared to ask because saying out loud "I'm not coping" is harder then laying there, alone, wiping your eyes.

It's OK to be honest with people, this isn't about being judged. It is about being loved.

I want to tell you a story.

One day, off we went in the car when Ed Sheeran's "Thinking out loud" came on the CD and Tony turned to me with tears in his eyes and said.... "This is my song for you" the first line....

Sorry, side bar.  Wow, talk about fate, hand on heart no word of a lie my adorable friend, who I class as family and is like a little sister just called because she is at an Ed Sheeran concert and he was playing 'Thinking out loud'!!! What are the chances of that! It's incredible!

Anyway, sorry, back to the story, the first line of the song is, "When your legs don't work like they use to before, and I can't sweep you off of your feet, will your mouth still remember the taste of my love, will your eyes still smile from your cheeks" and so it carries on, in my opinion the most romantic loving song of the last 10 years. Of course I instantly started to cry because that's the one thing this disease has never done. It has never taken away the intense love I have for Tony. We have been in the most frightening, tragic moments and some how managed to make each other laugh. We have a personal signal to each other to say 'I love you'. We have held hands and cried together, we have laughed in the face of intense moments, we have gripped on to each other, not wanting to let go of one another when we have faced some of the scariest moments.

This is reality people.

This is what it's like to live with EDS, this is what it is like when you're told after a surgery that you have an infection or that the surgery they had been trying to avoid was now an emergency. This is what it's like to be wheeled away, down a corridor knowing you're about to have an operation that they don't know how serious it can become and you could wake up with an incision the entire length of you abdomen. (which Thank the Lord I didn't, I woke up with 4 incisions that were smaller then what they had warned me would probably happen) And this is what it is like to do it with your soul mate.

Love, love is what makes me hold on. Love is what makes me reach for the laptop and think, "Ok, this is it, time to let your fingers hammer on the keys not really knowing what is going to come out" Love is what makes me believe that no matter what, WE will face this together. Love is what gives me the courage to do this, be honest, admit that yeah, you know what. This gets shit serious sometimes but all I have ever wanted to do is turn my experience into something that will help someone else out there who perhaps has been curled up in that ball, surrounded by tissues. Desperately inside willing this disease away, not just asking but begging God to take it away.

I have a daughter and I will show her that I can do this because I love her so intensely that I will face any pain and push it just to play with her and make her laugh.

You know what though, the thing I say to people, "If I have to suffer to help someone else in my position hold on for another day then BRING IT ON" I will turn my suffering into something positive, I will be brave, I will stop listening to all the things I tell myself about being a burden, about feeling so guilty that my family have to worry about me like they do, I will sit and talk to myself as if I am a friend because I can tell you this, I would never tell a friend whose body is in pain from the moment they open their eyes until the moment they drift off into a sleep, (if they are lucky) that this is their fault. I would never say "You are a burden"and I urge you, please, please take my advice and do the same. Talk to yourself as if you were talking to a friend.

This life is hard, physically, spiritually, emotionally but you, you are a warrior. You are a hero, you have the power inside of you because although your body may be broken and may have taken away your hopes and dreams you can still have those hopes and dreams because you deserve them. You deserve to have them. You may need to adapt them and change them slightly but having a chronic disease does not mean that you can't dream that one day things will get better. It doesn't mean you can't have a life it just means you have to really fight for it and I understand, trust me, I understand that is really hard and sometimes heartbreaking but you still have so much to offer the world.

Sometimes in life we have to reach the bottom because then the only way to look is up, look up, please, look up.

I'm holding my hand out to you and telling you, you are not alone. I am setting up a new Facebook page and email address and though sometimes I can't reply to comments for a long time I will try.All the details will follow very soon. Don't withdraw from the world, I know what it's like to live in a room, 4 walls, 2 pillows and agony that rips through your body when you move, a shoulder that dislocates when you cuddle into the person you love. Fear at moving a leg too far because your hip pops out and then when it does. That deep burning pain that follows. The breath taking moment of "I don't want to ring an ambulance, I can do this, God get in, please get in, YOU B%$£"%% GET IN, oh Lord the pain, take away the pain, please, I'm begging just please get in, smile, don't forget to smile, this has to be ok, show your child how strong you are, don't worry them, don't show them how much this hurts, I have to protect them from this" I know what it's like to every moment of the time you're child is with you digging so deep to protect them from this reality, playing, smiling, laughing because you will not let them know even though you are so exhausted and in so much pain inside. That is a miracle.

I am telling you I understand. I am telling you that it's OK to have days when you don't feel like you're coping and think back to the days when you would jump on the bed singing into a hairbrush just being a fool because life is for fun, remembering that you've never fit into the mold because being individual and you is far more fun then conforming and then pausing to remember. "I can't do that anymore" but my friend you can. You are you, you are all the things you have been through and you are all the things you will go through, you are every moment of your life that has bought you this far and you are strong enough to do this.

So here it is. Your future, because one thing this disease will not do is rob you of a future. It isn't going to be easy but you are a fighter, you are a warrior, you will laugh in the face of everything this disease will throw at you because you, you are a champion.