Tw – It a deep Post.
And if youve come from the “coping with grief” i.e. Natalie posts and looking for them rather than this, You can find the links to them at the end of this link here –
What you are about to read is how I feel about my life, and how Many chronically ill people feel. So although this post is made on my own feelings, its a post relatable for most “spoonies”. I don’t want your sympathy, and although Your understanding would be amazing, the thing I would love is for you to finish reading this and just for maybe 5 minutes think. Just think about what is going on. Think about all the people who are suffering with illnesses you cannot see or begin to understand. Maybe then, You might realise that the world is not as straight forward as you may have first thought.
“How are you? Aren’t you better yet? When are you going to be better?”
The three questions I dread.
Although I pride myself in being an honest person…
I often lie when responding to these questions.
You see, I tell you I am ok. Or I’m getting there. Or I explain whats happened, I tell you “oh but I’m okay, its all fun and games really!”
What I really want to tell you is, I am not okay.
No I am not better yet.
No I don’t know when a miracle will next happen.
I am finding it hard to cope with shit being flung at me in every direction.
I hate it all. I hate everything about it.
I hate the way my health conditions effect every single part of my life and my entire existance.
I hate being off college.
I hate the fact that it feels like all I do is sit wasting my days in the house or in a hospital bed or waiting room.
I am so sick and tired of being sick and tired.
I am so scared. I am so worried that this is it now. This is how my life is going to be.
I hate that people constantly p*ss me off. I hate that people comment that I post too much on social media, including this blog. When without this blog and my social media… I would explode. Yes, To most of the world, It seems I share every detail of my life on social media.
But let me tell you something. If you know me, like really truly know me and are one of the few that I really trust and open up to, then not only are you pretty bloody special, you will know that actually… there is a lot I don’t post on social media. The big scary details, the huge things that scare the shit out of me, the things that are quite concerning are the things I tell maybe a handful of people, but even then there is a LOT that I keep to myself. Those special few people are the only ones I let in on my bad days- they know who they are and I hope they know how thankful I am, and that I love them (I do try to tell them as much as I can, every day if possible!) Sure, I am pretty open about my life and do post a lot out there. But you need to understand you are sooo wrong if you think that you know everything there is to know about my life just by my posts on social media. You are wrong.
I am so tired of being judged. I’ve had enough of the judgement. I am not on trial… Or am I? Is that it? Is my life a punishment for a crime too inline with the devil, too purely evil to put in to words?
I am so frustrated that my mum has to do everything for me. I am so upset that its her and Uli that spend the week listening to me, and seeing me at worse, and the majority of my days being close to tears.
I’m upset that at weekends when both my mum and dad are home its the same as during the week. I feel so guilty that we often can’t do anything as a family outside of the house because I’m not well enough.
I hate that my loved ones suffer too. I hate that they have to see me like this. And I try my hardest to keep as much from them as I can. But thats a challenge in itself.
I feel so guilty that my health impacts everyone around me.
I hate being so ill, I have to say no to going out to visit a friend or family member. I hate being unreliable. I hate the fact that I have to cancel plans again and again. I hate the fact that most people stop making plans with me now because of it.
I’ve had it up to here that people who do not see me at my worse, and who do not know the full situation, still to this day have the cheek to contine to use my health as an excuse for not ringing or messaging or visiting or inviting us to things. Do not use my health as an excuse. Not now, not ever. Do not assume.
I am sick to death of so called relatives and friends pretending on social media and pretending to the outside that they care, and are there for me. Where were they when I needed them? Where were they when I was being taken away in an ambulance AGAIN. Where were they when I sat crying for hours over the fact that I couldn’t walk to my neighbours without my walkingstick? Where were they when my health deterioated the first time? And the next time? And the time after that?
Where were they when my world was tipped upside down?
They say they were/are there for me…
Answer me this.
Did they sit and hug me for hours on end and tell me it was ok not to be ok? Did they wipe away my tears?
Did they listen to me sobbing down the phone that I couldn’t cope anymore? Did they push me in my wheelchair? Did they give me the courage to go back outside again? Did they come and hold my hand? Did they message me goodmorning and/or goodnight regardless? Did they come and take me for a short walk or a drive just to get me out for 30 minutes of the home that became a prison? Did they give me the strength to carry on? Did they?
Were they there for my mum when she needed them? Were they there for my dad?
Were they truly there for me?
Can they tell you what my conditions are? Can they tell you WHY I was at the hospital last? Can they tell you why I am writing this?
And if they cant answer any of that…. Can you ask them why? Why they turned their backs? Why they pretended to be there to the outside world? Because I would love to know. I would love to know where they were when I thought I needed them.
Tell them for me, that I realised they are nothing. I realised that I don’t need them anymore. I know who truly cares. I know who is worth my love and my time. I know who my true family and friends are. I know who will be there when I am next at my lowest point.
You asked me again today “oh, How are you?”
I lied again. For the 3000000th time. I said I’m ok. Or I’m getting there.
You told me to “Get Well Soon”…
The thing is? I don’t have a common cold. I have multiple chronic Illnesses. These aren’t going away! They are incurable! I won’t “get well soon” like I would if I had a tummy bug or the flu.
And although it is really nice of you to wish that I get well soon, and I know you mean no offence….
Please, Please don’t be shocked when I am the same or worse the next time you ask.
Having said all of this, my opinion on my life stays the same.
I have so many bad days, thats true.
But I have good days too!!!
I have days where I can go out with my walking stick and go for a walk around the block for some fresh air. I have amazing days where I am well enough to go to college and go to my lessons and see the people there that are just amazing and whom I love to bits, staff and students alike!
I have days where with the help of some amazing people, I can go out in Marina (My wheelchair) and I can go and do things I wouldnt be able to do without the chair.
I have days where I am reminded how lucky I am to have two bestfriends as amazing as Jack and Titch (Dani). Because they are there for me no matter what shite is happening and without them I couldn’t do it.
I have special happy days where I am lucky enough to have a visit from a very special visitor who is a bestfriend of mine, who is there for me even though she has so much shite of her own to contend with, and whom I love to the moon and back (A clue in itself). Even if she doesn’t stay long, just seeing her, eating our raisins, chatting together, and having our bug hugs means the world to me.
I have good moments where my cat Dexter will make me smile, just by him sitting next to me.
On good days and bad, I sit and I think.
I take a deep breathe in, and
I am reminded how lucky I am. Because I have so much life in me. And I shouldn’t ever take it for granted.
I remember that like Natalie said In just 5 minutes, 5000 memories can be made. I remember that she told me “To keep smiling is to keep fighting”.
I remember all the promises I made to her.
I remember that I am Nat’s LanaLoo.
I have incredible moments when I realise how far I have come, and how strong I have become.
I remember how lucky I am to have the parents I have.
I remember how lucky I am to have Uli.
I remember how lucky I am to have ALL the people I do in my life.
I remember that I am
LanaLoo/Sunshine/Peppa/Banana/AJ/LanaBananaApple/Gingerthehatwearingchicken/ Cabbage/Larny/Mildred/Lanie/Larnypops/hatgirl/the inconsiderate cripple/whatever else you want to call me.
I remember all of this and more and for a moment all so, everything melts away. All of the stress all of the bad things, everything that has happened, all that has yet to happen… It all stops mattering in that moment. I forgive everything. I forgive everyone. I forgive myself.
And I just breathe and live in that moment. Because its something that is denied to many.
I love you all. No matter what part you play in my life. I love you if you’re just a random reader, I love you if you’re my mum, my dad, Uli, Babstheknittingchicken aka Mr Jack Adams ;), titch (Dani), Luna (Yes You, Gillian!), my sister, my family, my friend, my relative. I love you if you’re my doctor, my nurse, a medical person in my life. I love you if you’re my tutor, my support team, my teacher past or present, my fellow student. I love you if youre that woman that called me the inconsiderate cripple. I love you no matter who you are, or what you’ve done.
And I am thankful for you all.