How It All Began… Post Diagnosis

In the last ‘How it all Began’ post I talked about the lead up to my diagnosis of ME/CFS. That was in July 2014. We’re now coming up two years since then… TWO YEARS! Where the time has gone, I really don’t know, but what I do know is that A LOT has happened since then. I have grown so much as a person, I have found new hobbies that I now couldn’t imagine life without (hello, blogging!) and I made such good friends with people who I didn’t even know back in July 2014.

Did I expect this all to turn out the way it did? Absolutely not. Life has completely changed for me, and not in a bad way. I am so much happier with myself, and the way things have happened, and honestly? I wouldn’t change a thing.

So what has happened in the past two years that I am so grateful for?

Well firstly, my diagnosis of ME/CFS.

That may seem strange as it is such a horrible diagnosis, but if it wasn’t for this illness, none of this would have happened. Like I would never have met Angus had I not had glandular fever, had I not had ME/CFS, life right now would be very different.

So let’s go back to July 2014.

diagnosis, illness, ME, CFS

 

Initially after the diagnosis, I went through a very down period. I was convinced that my life was over, and despite feeling relieved that I finally had a diagnosis and therefore a reason for why I was so ill, it didn’t actually make me happy. I felt like it was a sentence that I couldn’t escape. A sentence of chronic illness. But really, that’s what it is. There was no cure, there was no magic medicine you could take to get rid of it, and it’s likely that it’ll last a lifetime.

That’s not something an 18-year-old wants to hear, never mind have to live with.

I somehow convinced myself that there was no going to Uni; I wouldn’t even get in, never mind manage actually going, so why worry about it? I spent the beginning of August doing very little. I had a job at a local Soft Play area, but barely managed that. On the shifts I did manage I would leave in agony, and would spend the following two days struggling to just get out of bed.

I remember that summer being in unbearable pain, all the time. I remember having to get my Mum to support my back as I tried to sit up in bed. I remember having to use her walking stick to be able to walk to the bathroom just to go to the toilet. I remember being in so much pain that I couldn’t even cry properly without my whole body aching afterwards. I remember my periods being so late, and so irregular, I ended up just giving up with them completely because they never came when I was due. At worse, I was every 7 weeks. Every 7 weeks. Even now I can’t quite believe that. And every week that went by after I was due and it didn’t come would just be another week of uncontrollable pain and suffering for me. My back, my groin, my tummy, all ached. Day and night, they ached, until I finally came on.

Now I’m talking about the absolute worst days that summer; there were plenty of days that weren’t like that, but unfortunately, those good days are all a bit of a blur, masked by the bad ones.

When it came to results day, I had lost hope completely. To tell the truth, I had begun to come round to the idea that maybe, somehow, I would get in. I had even been assigned a flat and was getting to know my flatmates. But in the back of my mind all I was thinking was ‘you had a panic attack in your main exam, this is not going to happen for you’.

I woke up that day and did what any A Level student did – I went straight onto UCAS to check my status.

I’d got in.

I’D GOT IN!

York St John University had actually accepted me!

That only meant one thing… I had got the grades I needed!

Mum and I got in the car and drove through to my school where I would find out my results.

CCC. EXACTLY what I needed to get into Uni. I was chuffed, ecstatic even! I burst into tears right there in the hall! I cried, my Mum cried and when we got home, my Uncle Duncan cried.

Flowers

One month later I was on my way to York.

To cut a long story short, I left after 6 weeks!

Remember through the summer when I was really ill? And remember me being so excited to have gotten into Uni?

Yeah… after seeing I’d been accepted there was absolutely no thought process that went into that decision to go to Uni. In fact, there was no decision, just getting in and being accepted had been my decision made for me and I didn’t really think about the fact that I might not have been well enough to go.

And I wasn’t well enough to go. Out of the 10 hours I was supposed to be in Uni each week, I think I made about 5. The rest of the time was pretty much spent in bed. I went out about 3 times in total, and despite making a few friends from my course, I just wasn’t happy.

My best friend and my boyfriend were both in York with me but that didn’t take away that constant ache I felt when I was homesick, or the constant cloud of fatigue that followed me wherever I went.

After 6 weeks, it was time for me to leave. Enough was enough.

And as I realised later, it was the best thing for me.


I’ve decided to leave it there for now! Only because if I didn’t, this post would go on forever!

That means there will be a Part 4, and that will be coming out at the beginning of July! That post will be talking about what did after I left Uni in October 2014 and how I ended up where I am today!

I hope you enjoyed this post, although I’m not sure ‘enjoyed’ is the right verb to use on this occasion! Please don’t forget to like, share and comment below with your thoughts!

 

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8 thoughts on “How It All Began… Post Diagnosis

  1. Thanks for sharing. I echo most of your feelings post diagnosis. Also get the period thing. I lost so much weight mine stopped for six months but I still had all the period symptoms. Sucks ! Look forward to hearing what happens next x

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      1. Yeah it was helpful being asked If I was anorexic and not eating. Had to convince them with the help of my mum that the weight loss and lack of period was not an eating disorder !! x

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      2. That must have been so hard! I really hope you’re over the worst now! It’s so hard when the Drs don’t believe you! I’m the same but the other way round, I can’t lose weight at all, despite eating super healthily and exercising regularly and my Mum has to come with me to convince the Drs that I am actually eating properly etc because they don’t believe me! Xx

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      3. Thanjs for your message It’s awful isn’t it when they don’t believe what your saying and so embarrassing having to take someone to vouch for you like your a child not to be believed !! X

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      4. It really is! I always try and go to the Drs on my own and be independent but sometimes when I just know there might be problems I can’t help but take my Mum along for support! I wish they could just accept that some people simply can’t control their weight loss/gain no matter what! X

        Liked by 1 person

  2. I thoroughly enjoyed this post. I didn’t enjoy your negative experiences but I enjoyed having real insight in to your life. I look forward to your next post to see what you did from leaving University.

    Jenna von x

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