*** Before I start this post, I want to start with a little disclaimer, this is one of the harder blog posts I have chosen to write. Why? I don’t want to upset anyone, offend them or even seem ungrateful, so please please read this to the end and know I mean it with love ***
BUT… I am so glad that you don’t and I truly hope you never do.
We all know my blog is mainly about life with a Chronic Illness, how I battle most days for my life, to keep working, to have some fun and to basically be me. I try and keep things light-hearted when I can, this is to ensure people aren’t upset or feel like we live a life of misery. Don’t get me wrong the life of a “Chronic” is not a fun one.
Now, I can spend ages telling you how hard my day is, how tired I am, how life is unfair and why me?
You can say, it’s ok I understand, but the truth is (and this is why I was worried about this)….. You don’t and can’t understand unless you have been there. Whats most important is it is more than ok that you don’t understand.
I know you are meaning well and I really do appreciate all the hugs, well wishes and people being there for me. I know it will be ok, that this is a bad day, that tomorrow will be better. Thank you for helping me weather the storm, stay up late, make me laugh, feed me, wash me, be in hospital day after day. I really really really (yep put it there three times) cannot say thank you enough.
I just ask, unless you have been through it, please don’t say you understand. I really wouldn’t want anyone to go through any of what I do, ever.
Now there are certain things I can explain or try and help you understand better what a day is normally like.
Part of the main thing I and a lot of others have to face everyday, part of life with a Chronic Illness, be it Severe Brittle Asthma, Rhinitis, PTSD and Sleep Apnea (which I deal with daily), or a never ending list of other things (but I will focus on mine to make it simple), is the limited stock of energy we have… or Spoons in this case. I wont blog all the details, or how it works as this AWESOME little pictoral explains it so much better than I can in words…..
A “healthy” person, still has a limit, everyone is human, just you have a lot more spoons than us, so can maybe fit more things into the day.
This weekend for instance, I over used my spoons for the day, so right now I am paying for it. I haven’t managed to replenish my spoons to my normal daily level, so everything I suffer with, its now 10-fold worse, the price we pay to have a few hours as a normal person.
So keeping the spoons in mind, if you think about your day on your most hungover, or recovering from flu day, imagine spending most of your life feeling that drained….. You do however learn to live with it, adjust and some hoe make it work. You know when you need to call it a day, but you also learn to know what is worth an extra spoon.
It is great that we can use this to help you understand a little element to our life, you can understand to a point the feeling of exhaustion, or why we are so slow getting ready or getting some place. There are however things you can’t begin to understand and this is where my blog turns to the dark side……
When you are sick, be it with a cold, tummy bug or something that will eventually (fingers crossed) heal itself, you know that you will feel rubbish for a week or two and then be better. You will maybe mope about a few days, hurt everywhere, pop a few pills and sleep a bit more than usual.
So how many times have you caught a bug at work, those before you have that wise bit of advice, people know what your talking about when you say your hair hurts, they get it when your eyes are streaming gunk. Why?? because last week they where in the same boat as you. In some ways its reassuring isn’t it? Knowing that you where not alone, that it will be ok in a day or 2 days, that someone else has been there, that they know you need a hug or silence.
When you have a Chronic Illness, it is totally different. Maybe lets start at the beginning, what is Chronic…..
(of an illness) persisting for a long time or constantly recurring.
synonyms: persistent, long-standing, long-term, constantly recurring; More
(of a person) having a chronic illness.
“a chronic asthmatic”
Ok so pretty simple right, I have something which is basically NEVER going away or will be around for a long time (think Cancer for instance). We know no matter what it is, we are in it for the long haul, this is our life be it for a year, 3 years or life. We have to learn to live with something that will change out lives, normally for good.
So as much as I love your hugs, how they make it better for that moment. How your jokes make me laugh out loud. That phrases like “I understand” , or “oh yeah I once had ….. (insert a really mild illness here)…. so I totally know how you feel”, or “oh come on its only….. 100’s have it”, they really hurt in someways. We know you mean it in the best way and are just trying to help, but please, just say either “want to talk about it” or “is there anything I can do?”
So I have friends who who will do anything for me, I mean ANYTHING. They have learnt how to put on my nebuliser or cPAP so if it is a day I can’t move I don’t have to. They know what medications I need and when, are even happy to inject me. They will fight with Doctors and Nurses when they need to on my behalf. They will drive to the ends of the earth to find something to cheer me up. Watch movies snuggled, take me hiking/walking and carry all my medical equipment. They try so hard to understand, to be there and they are, more than any girl could ever wish for….. but…. it is IMPOSSIBLE for them to understand. We wouldn’t want you to feel or go through what we go through, we also need elements of normal where you don’t understand, or worry bout us or fuss. We know our limits, we know we push them some times, but trust us we will tell you as soon as we need to bail.
So here’s a tip, be you before we got really sick. We want to be the person you go walking with, catch movies, pop round for a glass of wine, be like you are when you didn’t know how truly sick we are. We want to laugh and be silly like we where. Fundamentally we haven’t changed, just we are in a flare up, or something is making us worse for a time…. just be YOU.
Do understand though that sometimes we need to be sad or angry, sometimes we can’t talk to you about what is going on as we don’t want to hurt you. Plus please don’t give us the sympathy head nod and please don’t be upset when we can’t talk to you about things. It isn’t that we don’t trust you or like you, its because we don’t know how to say it or we don’t want to make you feel bad about a situation we cant control. So yes we need to escape our “Chronic World” sometimes…… yet other times we need to be surrounded by people that are going through what we are going through.
Now, I know you are all sitting there like “sod you then”…. but hear me out… please
We need a circle of people, be it in a forum, FaceBook Group, meetings, clinics or just a never ending world of WhatsApp groups, that are going through what we do, or similar. No I also know you will be all… “a moment ago you wanted to escape now your want to be surrounded” hear me out ok.
When you have been in hospital for what seems like the millionth time that year, or your body is ripped full of pain you don’t even know where it is coming from any more, when you are angry because you don’t get why it is you suffering, when you are tired but cant sleep, when you need a reality-check-smack-round-the-head, when you need to know what is going to happen from someone that has been through it, sometimes when you just need to cry…. the only people you can get that from are other “chronics”.
So let me explain why…. I can’t tell you what its like as such to have an Asthma Attack as violent as mine. Most people see it as an inhaler, through a tube, maybe a hospital stay or nebuliser. I can’t explain why at some points I have lost all the fight in me, pulled wires out, refused treatment, cried so hard and begged that to be the moment my life ends, I can’t tell you that because it will hurt you, you haven’t been there, lived it, hit that wall at a billion miles per hour.
But then I text a Chronic, I know they know without me saying, they know the feeling of the pain, the loss, the fear, the wanting it over one way or another. They know its the drugs, the tiredness, the isolation everything but me speaking. They know what to say to give you that refocus to get you back on track, they aren’t afraid to give you tough love, to speak to you bluntly, to tell you to sort it out. You accept it too as they have been there, they have pulled through, they do know it isn’t “just”.
They know that on some days you need someone to build you a pillow fort, crawl inside with you and just make it ok. They know some days they need to tell you to man up, suck it up and get on with it.
It isn’t that they are better than you, you just don’t need to try and explain… We don’t mind that you don’t understand, we like that you don’t, we like that you try and do all you can. So don’t be mad or sad… or even sad/mad, don’t think we don’t love and need you. it’s just right then… in that moment… I need one of the few people that can say “I understand” and they truly do.