HEALING… I’m A SURVIVOR

To other survivors:

You are not alone. Not now, not ever. Crawl if you have to, but keep moving forward in the knowledge that you are supported, loved, believed, and not at fault for what happened to you. You are part of a siblinghood of people from all walks of life who know the type of pain you do. You will never walk this path alone, but your path is yours and no one else’s. Walk it in the ways that are most healing to you. There are more resources than you could ever imagine; find the ones that help make your heart sing again. Talk. Scream. Dance. Create. Write. Read. Commune. Speak up, whether in therapy or on a stage outside of your government’s office, demanding change. Do what you need to do. I will be here for you, no matter your choices. I will always be here for you.

To the ones that walked away:

Thank you for the good times we did have along the way. To be fair, it was a difficult period to be a part of my life. But even more than it was difficult to be part of it, it was difficult to lead it, and your unexpected absence made it more so. However, in the end, I forgave you, too. To someone who doesn’t understand growth, it looks a lot like self-destruction at points. You missed out on seeing me grow into a stronger woman. You really missed out. I used to think it was my loss, but it was yours. It always will be. You walked away from a friend who cared deeply about you and would have been there for you in a heartbeat, had it been you going through turmoil. I wish you the best.

To my loved ones:

I can never find quite the right words to express my gratitude and appreciation for you. I guess “thank you endlessly and infinitely” is as close as it’s going to get. I love you more than I could ever express in words. Thank you for sitting with me when I was in darkness, celebrating with me when I was in light, and repeating that cycle with me every time it happened. Thank you for your words of encouragement, love, acts of service, quality time, and everything else that you have given to me. Thank you for wanting to learn how to support me well, even when we have our communication missteps and you accidentally trigger me or say the wrong thing here and there. I appreciate you bringing laughter and joy back into my life when I wondered if I would ever fully feel it again. I just cannot tell you how important you have been to my healing and how grateful I am that you have chosen to walk alongside me in it. Thank you for cheering me on at all of the little milestones of healing. Thank you for making sure that I would never feel alone in this. Thank you. Just thank you.

To myself, the survivor herself:

You are not just growing back; you are becoming a new creation. You are amazing. You are amazing on days where you reach milestones and blow your own expectations out of the water. You are amazing on days when your anxious thoughts could pile to the ceiling if you opened your skull. You are amazing, no ifs, ands, or buts about it. You have come so far and you will continue to meet your goals because that’s who you are. You are who you chose to become after.

I’m healing. Not healed, but I’m on my way….

SURVIVING WITH DIGNITY

 

This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being a force of nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy. I am of the opinion that my life belongs to the whole community, and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die, for the harder I work the more I live. I rejoice in life for its own sake. Life is no “brief candle” for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations…

PEACE

“There is a LIGHT in this world. A healing spirit more powerful than any darkness we may encounter. We sometime lose sight of this force when there is suffering, and too much pain. Then suddenly, the spirit will emerge through the lives of ordinary people who hear a call and answer in extraordinary ways.”
~ Richard Attenborough

“Wisdom comes through suffering.

Trouble, with its memories of pain,

Drips in our hearts as we try to sleep,

So men against their will

Learn to practice moderation.

Favours come to us from gods.”

To my fave people in the world….

Growing up we had an incredibly intense fraternal relationship. Thankfully, I now can call you one of my best friends. You are a great person, are having the time of your life with your close friends, and have a good sense of humor. We are still the same as we were child but we quickly learned that when we are on the same team, it is unlikely we will lose. We are resourceful and through a combination of our skill, we are a force to be reckoned with. Our relationship over the last few years has evolved and I appreciate all that you have done for me. I want our relationship to flourish so that we may support each other in our successes. The most valuable lessons you have taught me, in no particular order, are definitely how to: network, find solutions, learn from your mistakes, and how to be selfless. The most powerful thing I have observed from our relationship is learning mostly from not the things you have told me, but the values you instilled in me and the mistakes you have made. We are all human beings and make mistakes, but how we react and push forward, is what defines our character. You pushed people to help me and were constantly making sure we hit our goal. I cannot thank you enough for your help. You were incredible. You might read this and say, “Wow. That was brutal.” However, I think we have a lot of similarities so being hard on you, is also being hard on myself. Furthermore, thank you for all of your support and help thus far in life — I am deeply appreciative. I love you.

I have no words for you, my dearest, – I shall never have – You are mine, I am yours. Now, here is one sign of what I said: that I must love you more than at first… a little sign, and to be looked narrowly for or it escapes me, but then the increase it shows can only be little, so very little now…

At first I only thought of being happy in you, – in your happiness: now I most think of you in the dark hours that must come as far as I can look into the night I see the light with me: and surely with that provision of comfort one should turn with fresh joy and renewed sense of security to the sunny middle of the day…

I don’t know how to tell you just how much Íll miss you. I love you till my heart could burst. All I love, all I want, all I need is you – forever. I want to just be where you are and be just what you want me to be.

I want someday for you to be proud of me as a person and as your sister —- as your friend. I want to be near you and I feel so sad tonight.

NEVER FORGET YOU WERE, YOU ARE AND YOU WILL BE ALWAYS MY PERSON…

I ADORE YOU

AS A FAMILY

 

Life is too short for us to not do the things we wish to do. Far too often people become caught up in a daily work routine and are pretending to be happy. In the long-term, people often regret the time they did not speak up, made excuses, or a lack of commitment to their loved ones. Put your health and family first and everything else will fall into place. Your family should be a group of people you can always depend on — blood or not. Also, we need to stop complaining about the small problems in our life. A coffee made wrong, traffic, and being five minutes late are not real problems. Take a look around you. There is homelessness everywhere. It deeply saddens me because I alone cannot help each of these individuals. One wrong decision, accidental incident, or something such as medical bills, can put someone on the streets. I listened to a podcast yesterday hosted by Bernie Sanders on the healthcare bill. It scares me how expensive it could be to keep me alive if it is passed. Millions of people will lose their livelihood as a result. These are real problems. We must stop being selfish and focused on our own needs, and exert our energy on enjoying each other’s presence and making the most of our time. We are all guilty of this. I know I certainly am. Now that we are becoming “Adults,” Coco and I are no longer around as much. We must make the most of our time together. I want to learn more about each of you and have fun. Of course, life is a roller-coaster of emotions and having fun and laughing all the time is nearly impossible. But, we can make an effort to achieving such a feat. The last topic I want to mention is on being relatable. We have entirely different childhoods and are different people. This is fine, but we must find common ground and work to improve one another to fully enjoy life. Furthermore, this is most likely the fundamental issue, along with communication, that is the root of many arguments and misunderstandings. We can solve these problems together. As a family. AND WE DID IT!!!!

STILL SICK …..

 

Well I think everybody is individual and it takes you differently. All I know is that when you start to feel suicidal you've gone down so low that its very hard to try and climb back up and I think if anybody does start to feel exactly like that then they really must go to a doctor and get help.

I don't think medication is the be all and end all to help you with depression; it is talking to people who understand what you're going through and I think groups... people can help you on that. Especially people perhaps who've gone through similar and come back up and out you know. I've not always been positive.

Even now I still have my down days but I I've now learnt that they are my down days and sometimes I'm very depressed but again, just like my physical illness, I just go with it. I don't worry about it. I don't worry anymore because having the treatment I had when I had my breakdown I keep going back to that and OK I could be down I think to myself 'you've got to do something, you really have to go do something' because it's like a circle.

If you go down you could stay down and if you don't do anything you go wrong. You've got to try and break that circle and if somebody says, 'Why don't you go out for a walk' and you often turn round and say, ' I don't want to go' , or, 'I cant be bothered.' that's when you've got to talk to yourself very hard and say 'ok', because if you can keep your mind active enough to do something, even just go and sit in the garden or...

I'm not saying at that point you feel like doing any reading or anything but just giving yourself a little bit of exercise just to go out even in a wheelchair to go out to feel the breeze on your face and see the sun, when we get it, we've had a lot of that just lately! But even the rain, go out and just look at shops. Something might just click in you to make you feel just that little bit better. You certainly will be better than staying in and not doing anything.

CUSCO

 

In the meantime ....

 

It´s been a while

 

As a young person, it's entirely natural to feel invincible. Like you'll live forever. The concept of death - even being an old person - feels so alien that you rarely consider it.  

But the truth is, none of us know how long we'll be here. We can hedge our bets, but we never know if one of a number of things might happen and our time will be cut short.

That is, until it happens.

After being diagnosed with a rare autoimmune disease I had to deal with the fact that my illness was untreatable. 

Battling with this kind of realisation is difficult for anyone, and Holly was keen to share with others some of the wisdom she'd gained from her heartbreaking experience. So before her death on January 4 this year, Holly penned a long, emotional letter reminding us not to take things for granted, and to put the small worries and stresses we have in perspective.

The days tick by and you just expect they will keep on coming; Until the unexpected happens. I always imagined myself growing old, wrinkled and grey- most likely caused by the beautiful family I planned on building with the love of my life. I want that so bad it hurts.

That’s the thing about life; It is fragile, precious and unpredictable and each day is a gift, not a given right.

I don’t want to go. I love my life. I am happy.. I owe that to my loved ones. But the control is out of my hands.

I haven’t started this ‘note before I die’ so that death is feared - I like the fact that we are mostly ignorant to it’s inevitability.. Except when I want to talk about it and it is treated like a ‘taboo’ topic that will never happen to any of us.. That’s been a bit tough. I just want people to stop worrying so much about the small, meaningless stresses in life and try to remember that we all have the same fate after it all so do what you can to make your time feel worthy and great, minus the bullshit.

I have dropped lots of my thoughts below as I have had a lot of time to ponder life these last few months. Of course it’s the middle of the night when these random things pop in my head most!

Those times you are whinging about ridiculous things (something I have noticed so much these past few months), just think about someone who is really facing a problem. Be grateful for your minor issue and get over it. It’s okay to acknowledge that something is annoying but try not to carry on about it and negatively effect other people’s days.

Once you do that, get out there and take a freaking big breath of that fresh Aussie air deep in your lungs, look at how blue the sky is and how green the trees are; It is so beautiful. Think how lucky you are to be able to do just that - breathe.

Let all that shit go.. I swear you will not be thinking of those things when it is your turn to go. It is all SO insignificant when you look at life as a whole. I’m watching my body waste away right before my eyes with nothing I can do about it and all I wish for now is that I could have just one more Birthday or Christmas with my family, or just one more day with my partner and dog. Just one more.

I hear people complaining about how terrible work is or about how hard it is to exercise - Be grateful you are physically able to. Work and exercise may seem like such trivial things ... until your body doesn’t allow you to do either of them.

I tried to live a healthy life, in fact, that was probably my major passion. Appreciate your good health and functioning body- even if it isn’t your ideal size. Look after it and embrace how amazing it is. Move it and nourish it with fresh food. Don’t obsess over it.

Remember there are more aspects to good health than the physical body.. work just as hard on finding your mental, emotional and spiritual happiness too. That way you might realise just how insignificant and unimportant having this stupidly portrayed perfect social media body really is.. While on this topic, delete any account that pops up on your news feeds that gives you any sense of feeling shit about yourself. Friend or not.. Be ruthless for your own well-being.

Be grateful for each day you don’t have pain and even the days where you are unwell with man flu, a sore back or a sprained ankle, accept it is shit but be thankful it isn’t life threatening and will go away.

Whinge less, people! .. And help each other more.

Give, give, give. It is true that you gain more happiness doing things for others than doing them for yourself. I wish I did this more. Since I have been sick, I have met the most incredibly giving and kind people and been the receiver of the most thoughtful and loving words and support from my family, friends and strangers; More than I could I ever give in return. I will never forget this and will be forever grateful to all of these people.

It is a weird thing having money to spend at the end.. when you’re dying. It’s not a time you go out and buy material things that you usually would, like a new dress. It makes you think how silly it is that we think it is worth spending so much money on new clothes and ‘things’ in our lives.

Buy your friend something kind instead of another dress, beauty product or jewellery for that next wedding. 1. No-one cares if you wear the same thing twice 2. It feels good. Take them out for a meal, or better yet, cook them a meal. Shout their coffee. Give/ buy them a plant, a massage or a candle and tell them you love them when you give it to them.

Value other people’s time. Don’t keep them waiting because you are shit at being on time. Get ready earlier if you are one of those people and appreciate that your friends want to share their time with you, not sit by themselves, waiting on a mate. You will gain respect too! Amen sister.

Use your money on experiences.. Or at least don’t miss out on experiences because you spent all your money on material shit.

Try just enjoying and being in moments rather than capturing them through the screen of your phone. Life isn’t meant to be lived through a screen nor is it about getting the perfect photo.. enjoy the bloody moment, people! Stop trying to capture it for everyone else.

Get up early sometimes and listen to the birds while you watch the beautiful colours the sun makes as it rises.

Listen to music.. really listen. Music is therapy. Old is best.

Cuddle your dog. Far out, I will miss that.

Talk to your friends. Put down your phone. Are they doing okay?

Travel if it’s your desire, don’t if it’s not.

Work to live, don’t live to work.

Seriously, do what makes your heart feel happy.

Eat the cake. Zero guilt.

Also, remember if something is making you miserable, you do have the power to change it - in work or love or whatever it may be. Have the guts to change. You don’t know how much time you’ve got on this earth so don’t waste it being miserable. I know that is said all the time but it couldn’t be more true.

Anyway, that’s just this one young gals life advice. Take it or leave it, I don’t mind!

Oh and one last thing, if you can, do a good deed for humanity (and myself) and start regularly donating blood. It will make you feel good with the added bonus of saving lives. I feel like it is something that is so overlooked considering every donation can save 3 lives! That is a massive impact each person can have and the process really is so simple.

’Til we meet again.

Cuarentena autoimmune

Es triste sentirse mal y que te digan pero si estas enferma por que haces esto o lo otro, es dificil creerte.....yo te veo bien tu no tienes nada. Pero nadie sabe la lucha interna de cada uno, y la fortaleza q uno tiene para salir adelante aunque simplemente no tienes ganas de nada.

Llevo años sufriendo dolores, y una cantidad de cambios en mi, sin razón o motivos aparente...hasta que llega el momento que te dicen que tienes... Hay dos sentimientos, el de por fin ya sabes que tienes y el de ahora como lo enfrento...pero todos los días es una batalla ganada!! la falta de ánimo, el querer estar acostada, la toma frecuente de medicamentos, en fin una farmacia entera arriba de mi mesita de noche. Fuera de eso, los miles de comentarios, "porque te has engordado así??" Hay niña ese pelo lo tienes horrible y se te está cayendo, tanto cabello que tenias?? Anda y esas manchas tan bonita que era tu cara, que te paso??.... todo esto es cierto y por eso lo comparto!

Las enfermedades silenciosas e invisibles si existen!!!!!

Cuando tienes una enfermedad invisible, es difícil luchar con la gente ignorante...

No lo entienden hasta que les pasa a ellos.

¡¡¡La vida da muchas vueltas!!!

¿Cansada de que me digan fuiste al médico? ¿Probaste esto? ¿Probaste aquello? Sííí, ¡¡¡ya probé y sigo probando de todo!!!

Los médicos dicen que esta enfermedad es para siempre. Que no voy a sanar. Sin embargo, no me voy a dar por vencida, pero quiero hacer que los demás se den cuenta.

Una siesta no me curará pero si me ayudará y mucho, sin embargo, a muchos no les gusta que los enfermos durmamos tanto. No soy perezosa, estoy tomando medicamentos y eso me provoca mucho sueño todo el día.

Lucho con el dolor, los problemas de movilidad, la fatiga, el cansancio extremo y aparte las críticas de mi entorno a diario.

La parte más frustrante es que la gente me mira y dice: "no puede ser tan malo; te ves bien", a pesar del hecho de que mi cuerpo está experimentando un dolor insoportable por todas partes, claro que se me ve bien, trato de verme bien siempre, es una enfermedad "#Invisible"

Me disculpo si no voy a eventos que me encantaría asistir. Un día entenderás mis luchas diarias.

Ésta enfermedad me afecta físicamente, mentalmente y emocionalmente.

Necesito tu apoyo, NO TU JUICIO.

Si caigo, no necesito que me levantes, necesito que te tires al suelo conmigo hasta que yo tenga fuerzas, ganas y ánimo para seguir adelante.

Porque las enfermedades raras autoinmunes NO SE VEN... SE SIENTEN

Y están ahí... Atacando silenciosa, pero extra dolorosamente....