CFS/ME Diagnosis

I'll be honest,
this is one of my planned posts that I'm least excited about writing, but it needs doing, & now's the perfect time...

Everyone's road to diagnosis varies quite extensively.
I'm one of the fortunate ones, as I didn't go through the ordeal of fighting for medical professionals to believe me.
In fact, for me, it was quite the opposite.

Background.

Summer 2015 I was taken into hospital with stroke like symptoms- right side paralysis.
Cut long story short, the brain scans came back clear & I was diagnosed with hemiplegic migraines.
(Classic migraines + weakness/paralysis)

The diagnosis seemed to fit my symptoms, except as time went on, there was one little thing that couldn't quite be explained- the persistent weakness.

My right side was, & still is, predominantly the weaker side, but I also had this general weakness all over, that never went away.
Fatigue was also an issue, but I put that, as well as brain fog, down to medication side effects.

I couldn't even pick my toddler up majority of the time, or get myself up the stairs.

I kept going back to the doctors, telling them my medication wasn't working- explaining that it seemed to be helping the 'attacks' but that it wasn't touching the 24/7 symptoms.
I'd accepted my diagnosis by this point, I just didn't believe I was on the right medication.
It was actually my nurse practitioner who said to me...

"I think these symptoms are separate from your migraines. I'm going to refer you to the CFS/ME clinic."

I remember wondering how on Earth she'd come to the decision to refer me there.
I had chronic daily migraines with aura + hemiplegic migraines; that was my diagnosis. I'd even paid to see a consultant privately, who confirmed that diagnosis (waste of time, by the way, but that's a story for another day)- where did this idea of me also having CFS/M.E come from?!

Admittedly, I knew very little about M.E.

It wasn't until I was filling in the extensive booklet you have to send off, before the CFS/ME clinic will even see you, that light bulbs started coming on.
[In the past, people have argued that M.E is diagnosed when doctors 'can't be bothered'- I can't speak for all areas, but in Cambridgeshire, that's far from the case; the diagnosis criteria is a very strict & lengthy process.]

So many, different health issues of mine, aside from the fatigue & weakness, suddenly all sat under one big umbrella.

3rd February 2016- diagnosis day.

I hardly slept the night before. I've always got anxious before hospital appointments anyway, & with this one, I had no idea what to expect- I was more nervous than when I took my driving test!
I really didn't need to be... Every member of staff I came into contact with at the CFS/ME clinic, were the type of people we need more of in this world. Kind, empathetic, beautiful.

Here's my Instagram post from that day...

Some people with M.E know exactly when it started/what caused it, I'm not one of those people. I do however now know that despite being diagnosed in 2016, I'd actually had it for about 11 years prior to that.
My school attendance was low from when I was around 10 years old, I was constantly unwell- not only did I catch every virus going, but I also went through phases of experiencing unexplained fatigue.
I was actually diagnosed with Seasonal Affective Disorder at 12 years old, but it never made sense to me how, for the most part, I would be fatigued & physically unwell, without feeling depressed.
I do still suffer mildly with SAD, but the point I'm getting at is, the chronic fatigue, weakened immune system etc, were actually a separate issue.

I now know I actually had CFS/M.E all that time.
I was obliviously pushing myself, making myself more unwell, for all those years, until 3/2/16, when I was diagnosed with moderate to severe M.E.

Whilst I said at the beginning of this post that I was one of the fortunate ones, as I didn't have to fight for medical professionals to believe me, it did still take over a decade before any medical professional even considered CFS/M.E.

Had it been diagnosed earlier, I genuinely believe it never would have even reached the moderate stage.

CFS/M.E is massively underresearched & underfunded!
May the 12th is National M.E awareness day, which is why I've put everything in to publishing my diagnosis story on this day.
I will do everything in my power, every year, to raise as much awareness as possible, for this debilitating condition, that even I knew very little about, before being diagnosed.

One day, together, we will end CFS/ME. Maybe not in my lifetime, but maybe, hopefully, in our children's.

I hope you've enjoyed reading my diagnosis story, & hope it didn't bore you too much!
I'd love to hear your feedback & appreciate your support in raising awareness x

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