Chronic Fatigue Syndrome – My Recent Battles

As I write this up as my first draft, I lay in my bed having spent an entire day unable to move, I can just about type at the moment. I though I was on the road to recovery, to progress, to university, but apparently my body has other plans.

For those of you that do not know my story, I became very ill and after a lot of investigating it was decided I was at the end stages of glandular fever – that was 6 and a half years ago. Due to the fact that my symptoms were ignored for so long and I didn’t give my body what it needed, instead I tried to go back to school then end up in hospital over and over again, I was then diagnosed with a little something called Chronic Fatigue Syndrome.
I will never forget being wheeled into the consultants room watching my parents silhouette against the big windows come in and out of focus as I was laying on the table listening to the strange man who kept poking me explain what was then and still is a very uncommonly known illness. If I knew then, the troubles i would later face in just 6 years, if you piled them up in front of me and told me everything I would need to overcome and to fight I would have laughed at you and told you I would never be able to do that.

Yet here we are, today is one of the many ‘bad’ days and by bad I mean bad.
I woke up at 9am and was unable to keep my eyes open until 1:30pm. Yes, you read that right and I don’t mean I couldn’t help but fall asleep, no, I mean that the rest of my body was numb with exhaustion and the only thing I could manage to do was open my eyelids for a couple of seconds before falling straight back to sleep, my mother woke me up over and over again until eventually I was awake long enough to build up the energy to tell her what I wanted to eat, tea and toast.
After feeling a little more energised having actually eaten, I wanted to sit up and watch something to keep me entertained and more importantly, keep me awake! My mum pulls me forward with one arm while arranging my pillows behind me with another, all I can do is fall where she guides me, my arms still too heavy to lift properly themselves.

It is now 6pm and heres what I managed to do today:
Eat dinner.

I make jokes about being disabled – as do my friends – because every now and then I am able to do big things like vlog, go to the cinema, go to London, go out with my friends, go to church, but without a doubt, every single time I do any of this, I end up back in the same position I am now.

This makes me angry and frustrated which leads to depression, there is a lot of people asking the question “Is depression the cause of CFS or is CFS the cause of depression?” Well I will answer that question by telling you this:
I was a cheeky, happy go lucky, sarcastic opportunity grabber, I knew what I wanted and would do anything to get there no matter the cost. I had big dreams of travelling, singing, filmmaking and I had no respect for lazy people or anyone who didn’t do the one thing they felt called to do because it was too hard. I was a risk taker and a thrill seeker not afraid of anything but spiders. I was going to be in the olympics – the youngest swimmer there.
Really, I was your classic 12-13 year old girl who was a bit of a ‘tom-boy’.
Then I got ill, my brain was slower, following a storyline on tv would be so much effort it would tire me, my body was weak and my mind was either dead or racing, trapped inside an old womans body.

And I still am today… Depression did not cause me to get ill, i didn’t even know what it was! CFS beat me down until I got depressed.
 
I am working on that now, instead of locking my self away I do the things I want to do then pay for it later… for weeks on end most of the time.
Those around me that refuse to understand me I either am in the process of educating them or I don’t talk to them.
 
CFS has stopped me from doing so many things, I am not your average teenager, I am not able to do what everyone else my age is doing… but it has also taught be unbeatable tenacity, it has taught me to stand tall in the face of adversity and refuse to be beaten, it has taught me to understand those who have mental health problems, it has taught me that not all disabilities are visible, it has taught me to spend my time wisely with the people I really care about instead of wasting time and energy on those I don’t or who don’t care about me – after all, if I’m going to be needing help to sit up I want it to be because I was with someone that made my heart smile rather than my eyes roll.
It has brought me closer to my mum, who is the only person on the planet who is even close to fully understanding my condition and what I need. Most importantly, it has shown me who God is, I could have easily used CFS as an excuse for many things – including not going to school – but if I have used CFS in any way, it has been to grow with God, to pray constantly, while I’m spending my time in bed I am learning what he wants from me, I am reading the bible, listening to worship, improving the gifts he has given me whilst chatting to him to make sure he is at the centre.
When I feel like the loneliest person in the world, is my God who I turn to and surrendering to freedom is best gift I could’ve asked for.
 
So how am I doing? 
Terrible, actually, but I have a roof over my head a family that may be ‘interesting’ at times but I love with all my heart, friends I have always prayed for and lessons I would never have learnt without the pain that came with them.
 
Thanks for being my sort of therapist.
 

One Comment Add yours

  1. Alice Hobbis says:

    This is such a personal post and had me tearing up, I'm so sorry you have to go through this and constantly be suffering. I love how grateful you are for the things in your life and I wish you all the best for the future, I hope you can overcome this or at least learn to live a little easier. A blog is a great way to vent what you're feeling and the blogging community are all here for support x

    Alice http://www.accordingtoalicex.com

    Like

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