Health & Wellbeing

Am I Invisible? Nah, that’s just my illness..

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Am I invisible?
Nah, that’s just my illness..

“Definition of invisible. plural invisibles. : an invisible person or thing : someone or something that cannot be seen or perceived.”

I’ve been around but not around at the same time. I’m massively behind with my blog too! So here’s a little update on where i’ve been..

and SHOCK, it’s all down to my abnormal immune system..

For the last 12 months i’ve felt ill on and off, but explaining it was near enough impossible. I went to and from the doctors and GP and was always told i just had low iron levels and that i was anaemic.

About 16 weeks ago enough was enough and there i was, back at the doctors surgery, refusing to see anyone but Dr T. He’s in charge of the entire surgery. My theory was, if he couldn’t work out what was wrong with me, thats it, it was all in my head after all and really it IS just low iron and i’d just need some stronger iron tablets.

My appointment was already 25 minutes late, so in that 25 minutes i was just doubting myself over and over again and worrying if i was wasting the NHS’ time.. Yet deep down I KNEW there was something wrong.. but i couldn’t understand why nobody would listen, or help me.

I got to the point where unless i was with Dan, or going to 2 of the venues we work with, or to work I couldn’t leave the house. I was repeatedly seeking approval on how i looked, if i could leave the house like this, sending photos of outfits to people, or asking my mum repeatedly before i left the house. It got to the point that I knew every single weekend that Dan came to see me, I wouldn’t be 100%, i’d plan stuff and get SO excited to do it, but when it came down to it, I just felt too out of it. I also got to the point where I truly believed he’d be better without me and the anxiety of that was over whelming..

As soon as i was in the car, I was fine but the nervousness, anxiety and irritability was way too much. I was SO tired, yet couldn’t sleep. My legs would go dead, my heart would race and I was just constantly weak.. Yet put me into work, watch me at work and i was fine. I could be around 1000+ people at a time – I just couldn’t be with 2/3, the nerves took over.

When I woke up in the mornings, I wouldn’t have fallen asleep till 5/6am, work or not yet i’d be waking up before my alarm at 8am instead of 9am / 10am.

Was I just over tired? Dehydrated?
Every time I put on some weight and began to look normal, i’d lose it the week after. It wouldn’t be a small amount either, it would be a stone off and off, week by week. I knew this wasn’t healthy… but I was at my wits end.

Finally, it was my appointment time, I went into the GP room and I broke down to the GP, convinced I was crazy. He gave me endless tissues, told me his room was always open and booked me in for blood tests the very next day.

I had my blood tests, they took what I thought was a lot of blood, and I passed out.

I woke up, went to work and pretended everything was normal.

The following day, at 9am I got a phone call back from my Dr and was asked to come to the GP surgery. I hadn’t got in from work until 3am, didn’t sleep till 7 and I was told I wouldn’t get results for a week. Yet, here i am, walking to an emergency appointment the day after, less than 24 hours after..

As I arrived the doctor was there to meet me and we walked straight into his room. He started listing off symptoms and I was verbally ticking them off.. Everything seemed like it was starting to make sense :

  • nervousness, anxiety and irritability.
  • mood swings.
  • difficulty sleeping.
  • persistent tiredness and weakness.
  • sensitivity to heat.
  • swelling in your neck from an enlarged thyroid gland (goitrte)
  • an irregular and/or unusually fast heart rate (palpitations)

Finally – he knew what was wrong with me and again (shock) I broke down in tears. It turns out i wasn’t losing my mind, i wasn’t crazy, there has been something wrong with me!

He diagnosed me with a VERY Over Active Thyroid. He was shocked it had been left this long and tests weren’t done before. He’d also tested my liver levels to check which medication I was okay with. He gave me a prescription and off I went..

He’d booked me into various appoints at the Leicester Royal Infirmary in the Endocrinology department.

Sounding good right?

Nah! 

So far we’re around 3 months in of medication – my medication is being added too every other week and the MG’s i’m on is going up and up..

I’m currently meant to be finally in my appointment next Friday, then we’ll talk about Radiotherapy and Graves disease – I’m crossing my fingers this appointment doesn’t get cancelled too..

I guess the moral of this post is to say, YOU know your body and YOU know when you’re not feeling right. So listen to yourself and push, push, push as much as you can, until you finally get an answer.

I’ve got half my answer and i’m still waiting – I guess i’m happy to know it wasn’t all in my head though.

This isn’t a dig at the NHS either, they’re amazing and they do amazing things, just sometimes things clearly get missed.

Now i’m ready to plan summer with my favourite humans and puppy dog and make the most of it.

Invisible illness’ are just as important as visible ones.. Sometimes they’re just harder to explain.. 

Bees xo 

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