This goes to you...

 This goes to you and to every sleepless night I spend on your name, to every time I cried, goes to every single moment you have break me down into pieces...

This goes to you and to every time I screamed your name out loud but nobody listened, to all those moments when I thought to take my life away because of you...

This goes to you and to every moment we cheer and enjoyed together, to those few times when you saw my smile...

This goes to you my dear Chronic Pain, to you as you have change my life upside down, it goes to you with all my anger and my love, you have changed me and have teach me to fight harder.

This goes to you because since I have you in my life I learn how to do lots of stuff again, did some baby steps to re-arrange my life around you.

I don't blame you anymore my dear, I don't blame my self neither; I have learn a lot about you and I'm ready to live this life with you till death do us part.

And it’s there....

 And it's there, I can feel it but I ignore it, I ignore it because I know if I listen to it, it will only get worse ...

 And it is there, I can feel it , but I ignore it, I ignore it because I know that little by little it will take over me.

 

And it is there, I can feel it but, I ignore it, Should I ignore it !?  No I can't ignore it anymore, it's here now, is in my head, has power and control all over me, this ANXIETY slowly slowly is taking me away, away from whom?

 It distances me from myself and everyone, because, you often don't even recognise yourself.

What does anxiety do?

 Anxiety is a reaction created by our body in a moment of fear in which you feel under attack, a moment in which you feel weak, that’s when anxiety starts ...

 And it is there, I can feel it, but I ignore it, I ignore it because ..... because I will try to be stronger!

Lots of Love. .......A xx

Ed è li, lo sento ma lo ignoro, lo ignoro perché so che se li do retta peggiorerà solo...

Ed è li, lo sento ma lo ignoro, lo ignoro perché tanto so che piano piano si prenderà potere di me.

Ed è li, lo sento ma lo ignoro, lo ignoro!? No non posso ignorarlo più ormai è qui, qui nella mia testa ha tutto il potere e controllo, questa ansia pian piano mi allontana, mi allontana da chi? 

Mi allontana da me stessa e da tutti perché spesso non ti riconosci.

perché cosa fa l’ansia? 

L’ansia è una reazione creata dal corpo in un momento di paura in cui ti senti sotto attacco, un momento in cui ti senti debole, e parte l’ansia...

Ed è lì, lo sento ma lo ignoro, lo ignoro perché.....perché io cerco di esser più forte!

Con Amore.....A xx

No somos inVISIBLES!

Hablemos de un asunto con el cual vivo muy de cerca, pero no es fácil de notar...La DISCAPACIDAD INVISIBLE.

 Una persona con una discapacidad invisible desde el punto de vista exterior parece "normal", pero en el interior, nuestro cuerpo está luchando la batalla de vivir con una Enfermedad Crónica Invisible.

Nuestra mente lucha la batalla de vivir en un mundo de prejuicio, donde solo pocas personas entienden a lo que te estas enfrentando. Aclaremos, solo porque no lo podéis ver, no significa que estamos locos, ni que nos lo inventamos.

Este es un reto diario, en el cual aprendemos constantemente sobre nosotros mismos, todos los días, a medida que las cosas cambian, de cómo lidiar con nuestra propia enfermedad de la mejor manera que podamos, pero a nuestro alrededor hay gente y un sistema que no nos da suficiente apoyo.

Hay una gran necesidad de tomar más conciencia sobre este asunto, ya que hoy en día la gente como yo, se siente más aislada y no creída, como consecuencia, esto luego progresa en depresión, luego en

ansiedad y así entramos en un círculo vicioso.

Lo bien que podremos lidiar con la enfermedad, depende también de la cantidad de apoyo que recibimos, especialmente el apoyo mental. Por eso, si me permites, te daré un consejo rápido; trata de evitar algunas de estas frases:

-Pero tú no pareces enfermo.

-Siempre estás cansado.

-Al menos no es cáncer.

-Suerte que no puedes trabajar.

 -"Eres adicto" (refiriéndose a las tabletas) y etc.

Así que si alguna vez observas a una persona que parquea en el estacionamiento para discapacitados, pero se ve "normal", no seas prejuicioso, ya que no sabes a qué enfermedad se enfrentan y cuánto pueden estar luchando a diario!

¡No somos débiles, para nada! Estamos luchando para sobrevivir en un mundo donde si usted es invalido necesita estar en una silla de ruedas o necesita pruebas para demostrar su discapacidad. Todos tenemos derecho a decir nuestra verdad, ser escuchados y ser creídos, esto no debería ser un privilegio. 

Las personas que no me ven todos los días, tienen dificultades para entender cómo algunos días puedo caminar una milla, pero en cambio en otros, apenas puedo levantarme de la cama; lo que me hace terminar luchando en mi día a día, más que cualquier otra cosa, es a ser juzgada por otras personas, que por el malestar de mis propias enfermedades crónicas.

Con amor.... A. xx

We are NOT inVISIBLE...

Let's talk about a matter that touch me very closely but is not seeing.....INVISIBLE DISABILITIES. 
A person with an invisible disability from the outside looks "normal" but on the inside our body is fighting the battle of living with an Invisible Chronic Illness, and your mind fights the battle of living in a world of judgement, where only few people understand what you are up against.
Just to clarified, because you can't see it, doesn't mean We are crazy, neither making it up. This is  a daily challenge, that we constantly learn about ourselves everyday as things change of how to deal with our own ILLNESS in the best way we can, but around us there is people and a system that doesn't give enough support. There is a need for more awareness about this matter as now days people like me feels more isolate it and disbelieve, and this then progress to depression and anxiety, and then it starts a vicious circle.

 How well we deal with the illness depends also in how much support we get, specially the mental support, so quick tip try to avoid some of this phrases:
-But you don't look sick.
-You are always tired.
-At least is not cancer.
-Lucky you who can't work. 
-"You are a Drug Addict"(referring to the tablets)  etc..
So if you see a person with a disable badge but it looks "normal" don't be judgemental, as you don't know what Illness they are facing and how much they may be struggling on the daily basis! We are not weak, not at all! We are fighting to survive in a world where if you are disable you need to be in a wheelchair or you need to show your impairment. We all have the right to speak our truth and be heard and being believed shouldn't be a privilege.

Under the Equality Act 2010 if you have a physical or mental Impairment that has a substantial and long-term effect on your ability to do daily activities you are DISABLE.

People who don't see me everyday have a hard time understanding how on some days I can walk a mile, but can barely get out of bed on other days. What I end up battling more than anything else is other people judgement more then my chronic illnesses.

Lots of love, xoxo     A.

Non.Epileptic.Attack.Disorder - Seizures

Alex , ALEX wake up!! CAN YOU HEAR ME?? NO!! I Can not hear you! Here I am sharing with you all what goes on my brain during a seizure attack, is a completely BRAIN BLACK OUT!!

I have not control of my body, I have not memory, and again I CAN'T HEAR YOU!! If my body Shakes please DO NOT try to stop it, just let it do it, it will stop!! And if by any chance I had a little incontinence do not laugh at me, I can't control it; If is not easy for you, neither for me trust me!! Living with #NEAD or any kind of seizures disorder, is not easy, but with support and love, it can be fought!!

 

I wake up every morning to fight the same demons that left me so tired the night before, and I think that, my darling, makes me a warrior!

So to all my family and friends, please be aware:
I have a chronic illness, don't be surprised...if I don't answer the phone or reply to messages straight away; if I cancel our plans, especially at the last minute; if I leave early from a social gathering or party; if I suddenly nee to lie down or rest; if it seems I'm not listening or interested(brain fog). I'm still me, but sometimes my illness prevents me from doing the same thing as before, Please don't give up on me.

Love you all. xoxoxo.....A.

When CPS/CRPS change your life...

Hello everyone,

I know I keep disappearing lately but my life is being turn around since January '19...
I have keep CPS/CRPS a bit hidden as is not easy to explain or to talk about it to people; so I've been diagnose with CHRONIC PAIN SYNDROME/CHRONIC REGIONAL PAIN SYNDROME, this means I LIVE every second of my life with pain. There are many different ways of CPS: Osteoarthritis, Rheumatoid arthritis, Back pain also called spinal stenosis, Fibromyalgia, Inflammatory bowel disease, Surgical trauma, Advanced cancer.  CPS can be diagnosed in 1 of 7 people in the UK, can be more common in people who smoke, those older then 65, if you are a female , if you are obese or if you suffer with depression.

Takes time, and lots of test to being diagnosed, as is not easy to understand how the person in front of you is screaming of pain on the inside but outside is smiling; also because during the first 6 months of pain is called ACUTE PAIN, as our body take 6 months to heal from any injury and for the pain to disappeared in those 6 months doctors usually give you painkillers to keep the pain control, but most of the cases they will not work as the pain is so intense; if the pain still consistent and not stopping after the 6 months that is the moment when they do some test to confirm the diagnosis of CPS.

There is no cure for CPS but there are many way to help you reducing the pain, with CPS you will also feel much more stress, you struggle with sleep, you will struggle with things you used to do daily.

CPS have change my life completely, I felt like a child learning to do everything again;

I started having pain after my right hand surgery in January 2019, I thought at the beginning pain was due to the surgery process of healing but then the pain got worst and worst and never stopped even with painkillers; Pain started from top of my fingers up to my neck, when I started complaining with the doctors and the physiotherapist, but I felt that no one believed in me as I wasn't CRYING for help 24/7, after 4 months of constant pain I said to my physiotherapist, "Either someone does something to help me with the pain or I cut my finger off" that was the moment when they did listen to me and start to do something, I was booked to see my surgeon within a week and my surgeon referred me to the pain clinic, and my journey to being diagnosed started... Now I live wearing a TENS machine  take painkillers daily to control the pain. As I said my life changed, Living with Chronic Pain is not easy...if you manage to sleep more then 3hrs continuously you are very lucky, the knowledge of pain will change as you learned to live and deal with it everyday your pain management level will change; in my case I keep trying to have a "normal life" even if I want to scream of pain at every minimal movement of my right arm.

The worst part of CPS is not feeling comfortable to express yourself and your pain, as you know if you complain about your pain every time you feel it people around you will get annoy of hearing you moaning, so you keep a smile on your face and you fake of being well for the outside people but inside your body is CRYING and SCREAMING "I'M IN PAIN DO SOMETHING" and you can't do anything as the last painkiller you took was only 1 hour ago and you need to wait another 5 hours for the next pill. CHRONIC PAIN is very difficult to understand until unfortunately you live with it, so if someone close to you does feel pain quite often please stay close to them because living with it and feeling lonely does not help. 

Well guys I wanted to say SORRY to all of you as I keep disappearing, but due to pain is not easy at all for me to write now, but I'll do my best to keep walking with you the path of my life.

LOVE YOU LOTS, xx A.

 

My favorite quotes about Mental Health

Hello guys,
This week is nearly finish and it has been quite a WEEK as...is Mental Health awareness week in UK, and I want to share with you some of my favorite post about it, as I personally have struggled with it.
 

"Life is too short,

to spend another day of it,

fighting an Internal war with yourself"

"You don't have to have it all,
figured it out with what you got
how to move forward...
just take the next step"

 "Sometimes the worst place you can be is your head,
so don't always believe in what you think."

"You are not your illness.
you have an individual story to tell..
You have a name, a history, a personality.
Staying YOURSELF is part of the battle, and
healing the wounds from it isn't changing who you are,
it's about changing your relationship with yourself,
a fundamental part of that is honoring how you feel"

 "BREATHE is just a bad day,
not a bad life...
so don't be ashamed of your story.
It will inspire other."

Hope this Quotes can help you, or even giving you a bit of strength to CARRY ON, and SHINE BEING YOURSELF!!..

LOVE YOU GUYS. xoxo    A.