An Inspiration?

Over the past month, two different people, in different situations, completely unconnected, and from different and separate conversations have said that I’m “inspirational”, and that I should write and blog more about my issues and how I try to overcome them.

I found this bizarre, insane, potty, and frankly wrong.

But then I thought about it a bit more. Just because I don’t find myself inspirational in any way, shape or form doesn’t mean that others don’t.

I find the fact that I’ve had to find ways to make sure I eat before I take my morning medications annoying, but maybe others find that I’ve found a solution to the problem inspirational and helpful.

I hate that I have to plan things by the hour sometimes, and that I have to write everything in multiple calendars not just so I remember them, but so that they actually get done. Others may find the combined use of the calendar on my phone and a blackboard wall calendar extremely useful, and not something they’d thought of before.

There are loads of things like this, from pockets to pillows, medications to massages, the list grows constantly.

While I look at the seemingly unending list of things I use as tools to help me manage my various conditions as second nature now, or common sense, or even just tricks and tweaks I’ve picked up after suffering for so many years, that list might look like the holy grail of things to help them, whether they’re just starting their chronic illness journey, or like me, have been battling for many years and still struggle with some basics – or just spot something they’ve never tried before!

I’m in the process of writing what looks to be a long and informative article, originally designed to be sent to The Mighty, but I feel that now might be a good time to resurrect my blog, and post this, the article , and other things on it.

As I’m in a reasonably good place at the moment, maybe it’s time I start airing my thoughts again.

I struggle every day. Sometimes it’s just fatigue, sometimes it’s pain, sometimes it’s my depression, sometimes it’s anxiety, sometimes it’s a fabulous combination or all of them. Different things need different coping techniques and things I need to do to battle through them, and manage it so I don’t end up a mess who can’t function.

Today I’m tired, so today I let myself nap. It’s not something I do often, most of the time I can hold on, whether it by just resting, or taking things slowly and easy so as not to drain what little energy I have too quickly. I can shower, dress, apply some make up and blow dry my hair in an hour fairly easily, and that’s without rushing. On days where I’m tired but have to go out, I have to block out an hour and a half to two hours just to do all that, because I know that if I rush myself or do it at my usual speed, I’ll end up in a state and probably be unable to do what I need to.

I’m going to try and write a post weekly. I’m going to put it on my calendars to make sure I do it. I can’t speak to the content yet, maybe summarising how I coped with any of the weeks struggles, maybe just bits on what I suffer from, I guess we’ll see how the week goes and how the muse strikes. I will admit that writing this, and writing the bigger article, has ignited something in me again. It’s reminded me how much I love writing, and how well I can get my point across so much better when I put pen to paper (or fingers to keyboard as it stands) as opposed to just speaking. I have time to think about what I want to say, how I want to say it. I value that time. Time to think. It’s time that I use to sort through the riot in my head and get things straight.

I know that there’s not many people that read this blog, it doesn’t get many views, but if you are reading this, and there’s something that you’d like to read about from me and my points of view, then just ask.

First things first

If you don’t like long posts about personal issues and think that they are all begging for attention when it happens, then turn away now.  

This is about struggle, education and people needing support and love not hate, bullying and being ignored - something that everyone needs to be aware of. I am not proud or attention seeking. I’m the kind of person that admired Robin Williams for his suicide, and seeing it from the same side he saw his life, I understand it - and am proud of him for fighting as long as he did, and making the decision that enough was enough. A life fighting for the tiniest molecule of happiness is not a life. And if you don’t like this fact, then stop reading. 

I have been diagnosed a severe sufferer of Chronic Depression, Chronic Anxiety and Myalgic Enchepalomyelitis (ME/CFS - Chronic Fatigue Syndrome). None of these are fun conditions, and the combination of all three makes things very difficult.  If I was to boil this down to the complete bare basics, it basically means that I am too sad, too scared and too tired to do pretty much anything. And anything that I do do, takes a lot of energy, effort and discomfort. 

I am a long term sufferer. I had my first full blown panic attack (hyperventilating, tears etc.) when I was 5 years old. 5 years, 2 months and 14 days to be precise. I am currently 25 years, 2 months and 19 days old. I have suffered from bad anxiety and depression for at least 20 years. And I am very, very good at hiding it. Told a friend of mine that I’ve known for at least 8 years this and he was gobsmacked. I can hide it. I can put on a face, and be inwardly screaming and dying. 

I am a self harmer. I don’t do it for attention. I do it because sometimes that’s all there is left that doesn’t involve a death certificate. I don’t want to die. I’m just not keen on living either. It lowers my pain, my anxiety and my stress. I am not proud that I do it. 

But it’s a part of who I am, and it’s not something that I should have to hide [from]. 

Do I wish I don’t do it? Yes. 

Do I like the fact that it quietens the deafening constant turmoil? Yes. 

Do I wish that I could live a different life? Yes. 

Is there anything I can really do about it that won’t take most of the rest of my life to climb up the first couple of steps to stairway of full recovery? No. 

There are many people like me. Many people that get teased, bullied, left out, ignored, forgotten about, made to feel like shit about anything at all. If you’re friends with us, then you probably know how we are. And those are the worst possible things you can do. We need love, friendship, and most importantly support. We need help to get to where you are. We need help to be able to smile a non forced smile. We need help to not fake that we’re happy, and actually genuinely feel it. We need for people to not make us feel shit about something that we already do and hate that we do - we’re not in control. And it won’t be easy for you, but it’ll be so much harder on us. It can be hard for many people to understand, but some days just dropping a cup of water will bring us to tears. You may think “Oh this is just one little thing” but we see it as “Oh my God I can’t even get water without fucking up and now I’ve made a huge mess - I shouldn’t even try.”

Next time you see someone struggling, don’t tell them to man up, don’t ignore them, don’t make them feel worse. Ask if they’re okay, ask if there’s anything you can do to help, ask them if they need a hug. See if they maybe want to go and do something as simple as going for a walk/drink/food/10 minutes in the company of someone who cares, as simple and feeble as it may sound to you, stepping out of the front door can feel like climbing Mount Everest. 

I am fully aware that this is a depressing, emotional, unusual first blog post, but it has to be said, especially if you're gonna carry on reading my posts, poems and desperately sad rants.