A WALK WITH THE MUGGLES

                                          

            

I have lots and lots of subjects that I want to cover regarding my journey. A lot of paths would love to walk you down.

However I think the first path that really urges me to take you and indeed myself down whilst writing, is the rocky, emotional and sometimes frustrating path which is RELATIONSHIPS.

 A path that is riddled with hidden landmines laid unexploded for weeks,days, months even years, which we as the chronically sick and you the MUGGLES (as I kindly refer to the healthy ones as) have tiptoed around, stumbled on and yes on occasion fell on and ... BOOM !!!!

Now when I say relationships I don't just mean our partners for life if we are lucky to have, but our relationships with parents, siblings, friends, even the medical profession.
For believe me that can be a relationship for good or bad, in fact my consultant has seen parts of my body more frequently than my husband, even to the extent I think has he seen that bra before!

Here are a few things us chronically awesome folk would like you dear sweet  Muggles to know ...

 I also think that Muggles come into shall we say categories. 

Now I suppose in this sense I just mean just our family, friends ect. AND  this is certainly no disrespect to any of my love ones, as I do love them with all my heart ! and I cant push that strongly enough as ...
 A) I mean it
 B) I know they will be reading this and ... BOOM !!!!

Ok here we go ...

. THE IN DENIAL MUGGLE
 
In this case I mean my dear dear old mum, who is 75 and miles away from me. On the phone she will ask how I am, when my doctors appointments are and how they went. Then promptly hides it away in the back of her mind when she is with me in person. She knows somewhere back in her mind Im sick, but acts like I'm ok, like I'm just tired and will be fine after a cup of coffee ( that would be tea but yuck).
In person she will never ask me how I am feeling as this then will make it real, she will say come on lets do ... when Im clearly unable to leave the sofa.
With this reaction I find myself pushing myself, doing more to keep up the pretence that iv just got a cold. Then comes my frustration, sadness and anger. I end up shouting " MUM IM SICK IM NOT GETTING BETTER" and feeling guilty after for breaking her bubble when she replies " I know dear " and ... BOOM!!

. THE OVER CAUTIOUS MUGGLE.

In this case Muggles, my children, whom I love with every bone in my body my world.
My children bless mainly my eldest would have me wrapped in cotton wool on a sofa 24/7 my youngest I suppose is a little more lenient and usually to my frustration always right.
One example I was visiting family and only had a short few weeks so I wanted to try and do as much as I possibly could and ok I pushed it to far my body said
" I HAVE GIVEN YOU WARNINGS, NOW LAY DOWN AND STAY DOWN!"
Hmmm which yes resulted in a whole day and half in bed. Now my eldest went mad
 " you've done too much again, you wont listen you wont learn, I cant believe this I told you and told you." and I shout back "BUT DON'T YOU UNDERSTAND IT WAS WORTH IT TO BE A MUGGLE FOR A DAY!".... and   .. BOOM!!!.

. THE WHEN ITS CONVENIENT FOR THEM MUGGLE

Now this is in my case is a friend, one who again I love with my heart, and one who I know doesn't even realise they are doing it.
They are the friend that listens, understands what your saying, and sits have cosy movie nights with. UNTIL THE EVENT, this could be a shopping trip a night out we have planned together.
This is when I find my self sat in a corner alone, feeling tired and upset that I cant party too, feeling sick and needing to go home,  and frustrated that the friend has gone dancing without a care in the world has totally forgotten the fact I cant do this any more. Next, next comes my anger and wanting to scream "ONE NIGHT, ONE NIGHT YOU COULD HAVE SAT WITH ME"
This however soon leads to guilt for not wanting her to be carefree for a night... and... BOOM!!!

THERE ARE LOTS OF SCENARIOS I COULD TELL YOU AND YOU ME, BUT SOMETIMES YOU'RE LUCKY TO HAVE ...

THE OTHER MUGGLES.

In my case three ( well four my husband who tries his very very best)
,
One Munkey Muggle, who I have known for such a short time, but understands, listens, and has been there every step encouraging me.

One that has been there a little longer and is a non Muggle and is chronically amazing. she has been through so much but yet has the time to listen to my illness stories.

One that has been there forever, reads every post on my page I think, because she quotes them in what she says bless her.

And this ladies and gents was just i little short walk down one of many winding bumpy paths I have found on my continuing onward journey

much love
Chronically Jo

HOW IT BEGAN

       I remember the days my journey through chronic illness began two years ago. I had started a job as a chamber maid at a local hotel ( why I did this hmm not a clue, but may be explored in a separate chapter).

I started to have really sore feet, and feel very tired. My new work mates said "ah you're not work fit yet, you will be fine". Instead of getting fitter as time went on as you would expect I started getting weaker hmmmm . 

Ok firstly between my husband and myself we established something wasn't right, then the merry-go-round of doctors and specialists began as did the medications still no real answers except you may have an autoimmune disease!! 

In the end after a course of methotrixate I began to feel dreadfully out of breath, fatigued and very poorly. Went to doctors who promptly sent me to the hospital.

Now this is when the big bad bombshell is dropped, we can't see any evidence of an autoimmune disease however you have got heart failure mouth opens in shock!!

I was in hospital for 12 days in which time I had MRI scans Echo cardiograms the list goes on. 

Soo I still coping with with shock goes searching for answers to the constant pain, enters Dr Pengilis with his diagnosis of Fibro .

So there we have it I have one illness that wont kill me but can't be cured and one that will kill me and hmm maybe if i have a transplant be sort of cured .

Now this is the beginning of my journey in a very short nutshell, and by all means not the full story.  No the full story, well this is about how i came to have heart failure, how I coped with and still coping with the shock and how I am trying to live a life with my illnesses.

Hopefully my journey will be similar to yours, maybe not but I hope you will feel you have the time to peek in now and again and maybe even comment.

This is a new part of my journey trying to turn something rubbish into something that will help me and hopefully you. Also please check out my page on Facebook.

https://www.facebook.com/pages/Chronic-illness-support/290993151091842