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. 

An advice from a girl...

If you are dating a girl with depression or anxiety..
She is going to be tired, constantly, so don't let her stay in bed.
She is not going to want to eat, make her food any way.
She is going to cancel any plans just to go home and stay in bed, take her out dancing, take her out for a movie or even for an ice cream.
She will look like she is not in the mood to be silly and happy, make her  laugh any way.
Shes is going to want to cry over a spilled coffee or a drink, don't make it look like is not a big deal or that she is being dramatic.
She is going to be happy and sad at the same time for no reason, and I know that sounds crazy but is TRUE.
She is going to need constantly reassurance that she is beautiful, so never stop telling her.
She is going to constantly need reassurance that you are not going to leave her, this doesn't mean she is doubting you or questioning your love.
Depression comes with anxiety, it comes with no appetite, it comes with 10 hours sleep and waking up still feeling tired, it comes with the illusion of being in a room with 100 people, and you are invisible to all of them.
It doesn't make sense, it's impossible to understand, if you are not living with it, so imagine how she feel... Depression is fighting an internal battle.
So be that support system she needs, be the reassurance she need, be the love she needs, and NEVER, NEVER GIVE UP ON HER.
An advice from the girl who constantly need reassurance, but dated and married the man who never give up on her.
With LOVE, A. xx

Why did I start the Blog?

Hey Guys,

I start writing again, and on today's post I want to tell you why I decide to have a blog.
It all started in 2009, when I started to have issues with my self, i did not accept myself and didn't love myself for who I was and who I am.
I began to write because, I only had bad and sad thoughts in my head and if I didn't find a way to get them out of it, I was just going to be worse; All those bad thoughts within a year, pushed myself to suicide, and made me do bad things, so I needed to find a solution; I needed to write somewhere all those bad thoughts I had in my head, in that way I would give space to those beautiful little things in life. I filled pages and pages, erased them and rewritten them, wrapped up in rage.
After my first admission in Psychiatric ward, I thought that maybe I was not the only one with those bad thoughts, maybe I was not the only one to have problems to accept myself, maybe I was not the only one, so I made the decision to open a blog: Alexandra's Life, where I could talk about life and disappointments, with all those up and down that at the end we all experience in life, maybe it could be a possibility, that on the other side of the world there would be a person reading my blog, and meanwhile they were reading it, they would not feel lonely as I felt and together without knowing we gave a hand to carry on to each other. Back then I had only written one post and didn't have any comments, no reactions from anyone, I felt useless and I give up writing. Back in 2013 I wanted to restart, but because it was 4 years since the last time I wrote, I could no longer login into the blog I had, so I reopened one with Google Blogger, between my computer files, I found a post I had written in 2009 and I posted again, but like the first time, there were not many reactions, the post only had 45 viewers, so I gave up again.
In 2015 I said to myself, Ok Alex, let's try one more time! So for the third time I tried again to see if it was worth it, if someone was really interested, otherwise I would had completely give up; And instead of sharing my thoughts in a blog, I would have kept them for myself in between the pages of Microsoft Word. The post had 146 views, it made me really happy, and I did not want to stop, I kept writing and writing, but in 2016 I need it a little break, and stopped for a few months, got back blogging in March 2017, but then, with all that was happening with my brother I only wrote 2 posts and once he became an Angel, I did not have the strength to carry on writing, as I felt, I did lost my inspiration; Until today. Finally, after 531 days, here I am, I'm back!! and I would like to apologize for my disappearance with you all, I'm really sorry if I have disappointed you, but thanks to you all, to your emails, and to your messages of encouragement, where you asked me when I would be back, reading those messages help me to find the strength to be here writing to you. You all are my inspiration, THANK YOU, I hope not to disappoint you and that you'll find a little strength and inspiration in my words, as I found it in yours.


Let's keep in touch, xoxo. A,

Ciao Ragazzi,

Ricomincio a scrivere, da qui, dove voglio raccontarvi perche' ho un blog.

Tutto ebbe inizio nel 2009, quando comincia ad avere problemi, a non accettarmi ed a non amar me stessa per come ero e sono.
Cominciai a scrivere perche' avevo solo pensieri brutti e tristi in testa e se non trovavo un modo per tirarli fuori, stavo solo male; Un male che poi nel giro di un anno mi porto a tentare il suicidio per la prima volta, un male che mi faceva far cose brutte, quindi cercai una soluzione che fu quella di scrivere; Scrivere tutti quei brutti pensieri e tutte le cose che avevo in testa, cosicche' da lasciar spazio a quelle piccole cose belle della vita. Riempivo pagine e pagine, le cancellavo e le riscrivevo, avvolte la rabbia era tanta.
Dopo il mio primo ricovero in Neuropschiatria, pensai che forse non ero l'unica con quei brutti pensieri, forse nn ero l'unica ad aver problemi ad accetarsi, forse non ero l'unica, quindi presi la decisione di aprire un blog: Alexandra's Life, per parlare della vita, di tutti quei alti e bassi che alla fine viviamo tutti, e che forse dall'altra parte del mondo ci sarebbe stata una persona che leggendo cio non si sarebbe sentita l'unica come mi ci sentivo io, e insieme senza saperlo ci davamo una mano per andare avanti. Hai tempi avevo scritto solo un post e poi non avendo nessun commento, ne reazione da nessuno lo sentii inutile e lasciai perdere. Nel 2013 poi ho voluto riprendere ma essendo 4 anni dalla ultima volta che avevo scritto non potevo piu' entrare in quel blog e ho dovuto riaprire il blog con blogger, ho ritrovato il post che avevo scritto nel 2009 e l'ho ripostato qui, ma di nuovo come nel 2009, non ci furono molte reazioni, il post ebbe solo 45 visualizazioni, di nuovo lasciai perdere.
Poi nel 2015 dissi a me stessa, ok, ci riproviamo, o la va o non va!! Quindi per la terza volta ci riprovai per vedere se ne valeva la pena, se qualcuno ne era interessato, se no ci avrei completamente rinunciato, e invece d condividere i miei pensieri, li avrei tenuti per me tra le pagine di Word. Quel post ebbe 146 viasualizazioni, la cosa mi rese molto felice, e non volevo piu smettere, da li non mi volevo piu fermare, scrivevo e scrivevo, Ma nel 2016 mi presi una piccola pausa  e avevo smesso di scrivere per qualche mese, ripresi nel Marzo 2017, ma con tutto quello che stava succedendo cn mio fratello scrissi solo 2 post e poi una volta che lui non c'era piu, non ebbi le forze di continuare a scrivere. Fino ad oggi, che finalmente dopo 531 giorni, eccomi qui, e vorrei chiedervi scusa per essere sparita, e mi dispiace veramente se vi ho deluso e non sono stata cosi attenta a voi, ma e propio grazie a voi e alle vostre email, ai vostri messaggi di incoraggiamento e dove mi chiedavate quando avrei ripreso che ho trovato le forze di tornare a scrivere. La mia inspirazione siete voi, GRAZIE e spero di non deludervi e che trovate un po' di forza e inspirazione con me, come io la trovo con voi.

Ci sentiamo presto, xoxo. A.