Wednesday 26 April 2017

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.