Month: May 2021

Blog Update · Chronic Illness · Personal

Blog Update

memyselfandchronicillness6 Comments

Hi Everyone – So this blog post is a little late considering I said I would do it after the blog’s birthday post – sorry for that. Awareness month came along and I thought it would be good to do a couple of posts for that, but anyway here we are..

For anyone who read my blog birthday post, I said I would discuss how I would be structuring my blog posts going forward. I have given this a lot of thought because I have always been keen for my content to be meaningful to not only people who read it, but to me too. I am brimming with ideas, but feel I need more of a structure. So from June onwards I have decided to do the following:

  • Have the first week of each month off from the blog to focus on other writing bits and pieces – I have been doing this for a little while now and I think it works better than me trying to write about multiple things at the same time and risk repeating crap!
  • For the rest of the month do 3/4 blog posts (one a week – like normal) depending on how many weeks in the month there are.

Of these blog posts I would like to do:

  • 1 post on mental health
  • 1 post on chronic illness/condition specific
  • 1 or 2 posts on a particular topic obviously related to chronic illness e.g. work, hobbies etc. etc. I would be really keen to hear if there are any specific topics anybody would like to request. You can find me on the contact tab above if you would like to make any requests. If not no worries, I have plenty of ideas.
Photo by Pixabay on Pexels.com

On a slightly separate note, I recently wrote (I say recently it was finished several months ago and it took me an age to do!) a short fiction piece on chronic illness which I tried submitting for something else, who didn’t believe it was for their audience. I know, I know chronic illness is such a boring theme right? Anyway, I want to do something with it and not have it sat in a folder so if anyone knows of anywhere I could send it please let me know. If not, I was considering sharing it on here – maybe I could put it under a tab or something so it doesn’t get mixed up with all the other content – because although it is a short story it is an extended short story!

So this is the plan – for now. Because let’s be honest, things may go out of the window depending on life. My health may mean scaling back, or certain things may take my fancy one week and not another. But, this is my current plan.

Thank you for taking the time to read my post today – let’s face it this was more for me than for you and was a chance to get my thoughts straight. Even so if you got to the end of this post – thank you for your support!

According to my plan I have next week off, so see you the week after.

Sarah xx

Activities · Chronic Illness · Letter · Mental Health · Personal

A Letter to My Chronic Illnesses

memyselfandchronicillness5 Comments

Dear Multiple Chronic Illnesses,

It is strange to think we have known each other for the last eight years, maybe more, and yet it is only now I have decided to speak directly to you and not just about you. To be honest, I think it has been the recent awareness days/weeks that has made me feel I need to speak to you one on one. Let me make this clear there may be five of you, but for the most part I am going to address you as one, seeing as you all make me feel the same way.

For a long time, you have been a stranger to me – somebody I have kept at arms length whilst trying to find reasons to why the both of us cannot and should not co-exist. I am not surprised I felt this way, you did decide to enter my life in the period that should have been the best days of my life, hitching a lift on a body that didn’t belong to you. Nevertheless you did and you have hung on ever since, digging your heels in as I tried and I tried to shake you off.

How does it feel knowing you have robbed me of precious time? Knowing that because of you and your power over me, my ability to live a ‘normal’ life is long gone. Knowing that with you by my side, the future terrifies me.

The thing that gets me about you the most is, the fact you want to be so noticeable to me, yet invisible to everyone else. It’s almost like your a performer in a pantomime – you know when the audience screams ‘their behind you’ and the person on stage turns round and they’ve disappeared – only this is in reverse. I’m in an audience of one whilst everyone else is on the stage struggling to see what I do.

You know how cruel that is to do that, right? To not only make me suffer physically, but to make others question my sanity too. To be laughing at me, as eventually I started to question it myself. I’m curious do you ever think of the mental health impact you have had on an already anxious mind? Did it ever bother you watching me get gaslighted time and time again by many a health professional and even people who knew me?

Photo by Castorly Stock on Pexels.com

When all is said and done, there is really only one question I would like to ask you – why me? What was it about me and my life that made you want to tear it up so badly? Was it my accident, my struggles in life, my mental health, or was it random? And why was one illness not enough, why did it go to two and three, then four and five, why did you need me to keep gathering illnesses like some people gather junk? I guess my initial ‘I have one question’ was a bit off – maybe I have several – but that’s what carrying you around does to me, it constantly changes my direction.

Over the course of the last eight years my life has changed it’s path on so many occasions. You have single-handedly stopped my working life, my relationships, my social life and my future plans. I should hate you, and trust me at times I really really do, but you’re apart of me, so if I hate you am I not hating myself too? Hating you won’t change anything though because I now know you are here with me for the long run, and for us to get through it we have to work together.

I know this is still a work in progress at times, but I don’t know about you I feel we have been working more in sync lately. Like with any relationship though it’s give and take, and you definitely need to work more to match me in the giving department. I know, I know, it’s all about you, like literally all day everyday, but you have to give me some air time too. I get it you thrive off attention and you find nothing more enjoyable than rearing your head when I least expect it .

But, guess what? It is me who is going to have the last laugh. That’s right, me! Because I am no longer trying to run from you, no longer hiding from you and no longer trying to find a way to push you off the moving train, because I accept you. And because I accept you, you have no power not really.

You see you are the weak one, not me. That’s ok though, I am strong enough for all six of us.

Sarah xx

Awareness · Chronic Illness · Fibromyalgia · ME/CFS · Mental Health · Tips

The Month of May – Awareness Days/Weeks

memyselfandchronicillness6 Comments

Wow the month of May really is a busy one when it comes to awareness events. Especially when three of your conditions have their awareness days all in the same week, the same day even!

We have Fibromyalgia awareness day on 12th and depending on where you are in the world for the whole of May. M.E awareness day again on 12th and awareness week 9th -15th (Updated for 2022) . Finally, Mental Health week from 9th-15th May. (Updated for 2022).

For more information on living with each condition – check out my previous blogs posts here: Fibromyalgia, ME/CFS and Mental Health.

Why are awareness days significant?

Many people would argue that technically awareness of conditions should be something that is happening all year round and not just at a particular time of year, and I would agree. However, awareness days are great for a number of reasons too.

Firstly, they help you to engage with others with the same conditions as you come together to get the word out.

Secondly, when there is an influx of information on social media things are more likely to be seen and read rather than be dismissed, with the hope to educate others.

Thirdly, it can help to reach people who may be struggling and give a sense of community.

Finally, they can hopefully help to raise some much needed money for the charities that help us the most.

The downsides to awareness days

As someone with a chronic illness you can often feel an overwhelming pressure to fly the flag for your particular condition, like it’s your duty. When you blog about chronic illness, you can feel an obligation to do something to show support.

This year I started out with vigour, researching what different charities were doing for the day/week (online of course), and made a conscious decision that I would show my support with various ones in order to represent all three of my conditions. All it would take was sharing a few social media posts each day, and completing a few ways to wellness activities (mental health related).

Day 1 was great, I felt positive and productive and by day 2 I crashed. A mere two days in!! To begin with I couldn’t understand this overwhelming fatigue – sure I am used to it happening, but usually I have an idea why. Then it hit me – it was the awareness planning. Not necessarily the tweets themselves, but the planning of what to write, accessing templates, when to send them, and the fact I was trying to do it for three separate conditions.

Photo by Andrea Piacquadio on Pexels.com

It was this moment I decided I had no choice, but to scale back. Still show my support yes, (luckily I had scheduled several tweets to go out later in the week), but to stop and put my needs first, and if able to pick it up a few days later.

In hindsight, I think maybe I should have picked one condition to focus on , or maybe one day. Nevertheless I did my best and that is enough. Wow wee, with comments like this I think my mental health has definitely improved!!!

What I am trying to say is you should never feel guilty for putting your health first. As I mentioned at the start of this post technically awareness is all year round, not just for one day or one week.

What you can do to raise awareness.

Equally if you do feel like you would like to do something, don’t be confined to a date and make it an action that is doable for you. You could:

  • Re-tweet or share a post
  • Start a conversation with a loved one
  • Direct people to your favourite charity
  • Make a piece of art
  • Donate or purchase an item from an online charity shop
  • Share your story with others

Being chronically ill you are raising awareness all the time through the people you meet and your family and friends. In turn these people will also raise awareness when talking about your situation with others, and hopefully the domino effect begins. This is what awareness is all about – changing perception, teaching others and getting the word out there.

Sarah xx