Up In The Air


Normally I would get angry and bite when it comes to my health and when I know something is
right. Today I just feel defeated. Like I deflated upon hearing my consultant’s words.  And now I just feel empty and numb.

I'm tired of fighting all of the time. 

Fighting for treatment and fighting with people. It's tedious and it's exhausting. I don't understand why every single little aspect has to be a battle all of the while. I shouldn't have to be using my energy on fighting to be listened to, battling to be believed. 

I should be saving my energy to use on valuable things. Health is valuable of course, but it's not something that you should have to fight for, it should just be a given. However I guess the difference between what 'should' be and what is are two very different things.

Due to the Ehlers-Danlos and the chronic pain and fatigue that is all part and parcel of it, I have had no choice but to learn to value the energy that I do have, even though it's minimal. I would much sooner be using that energy to play with my daughter and just be 'mummy' to her, instead of using valuable energy to fight, battle and argue.
Pain wise I'm not doing that great at the moment, nor am I with nausea. 

Everything always feels so up in the air. I get diagnosed with several things and am given umpteen surgical 'offers' (I use that term lightly). 

Yet because of the state my body is in, surgery is not an option.  I'm just frustrated. So, SO f*cking frustrated. 

I'm just frustrated. 
So, SO f*cking frustrated.

...I was accused of rubbing my Hickman Line against my Venting PEG to give myself Sepsis.  

POTS Down The Pan
It's like with the POTS.  I'm "much too underweight and dehydrated" to be eligible for any of the medication that's used to try to get on top of it and reduce symptoms enough to improve your quality of life. 

Yet the only way of me gaining weight and having better hydration and nutrition, is to be back on TPN

Yet I can't go back on my TPN because my body won't handle it for various reasons and I now have my Nutrition team saying they think a big part of my illness is psychological. 

Yes I HAVE struggled with Anorexia Nervosa and I was nothing but honest with them about that from the start. 
Same as I told them that I do still have my bad days with it. 

Heck, is it not common sense? 

I've had a bad relationship with food and have had an eating disorder for 13 years now, and it's damn hard to develop a healthy relationship with food and weight gain when food causes intense pain and relentless vomiting, and weight gain feels like being in a foreign body when you've spent so long being underweight. 

It's like it's not your body anymore, it's a completely unknown entity.  You look in the mirror and you don't recognise yourself, you look twice because it just doesn't look like 'you' anymore.  My Nutrition team said that improvement on TPN wasn't even close to being satisfactory.  My bloods improved but my weight didn't. 
Which isn't even true.  Yes, my bloods improved but so did my weight.  

I put on 12kg on TPN but then I kept losing weight when my body was fighting Sepsis, the duration of which my Hickman Line couldn't be accessible, or had to be removed. 

I fought Sepsis four times and every time it was a 
damn difficult and a damn lengthy fight to overcome it. 

It's like it's not your body anymore, it's a completely unknown entity. 

 You look in the mirror and you don't recognise yourself. 

Institutional Abuse
My body was burning calories fighting those life-threatening infections, whilst receiving no nutrition because my line could not be used. Common sense there says a person will lose weight under given circumstances. 

That's not my doing.

Although I was accused of rubbing my Hickman Line against my Venting PEG to give myself Sepsis. 

Laughable, I know. 

However, whether I have or had Anorexia or not, it makes no difference because either way I still have extremely compromised absorption as a result a Gastrointestinal Failure, Oesophageal Dysmotility, Small Intestinal Bacterial Overgrowth and Chronic Intestinal Pseudo Obstruction. 

So as much as I'd like to be able to absorb things and gain weight, it's nigh on impossible with these conditions! And that's just to name a mere few of them.

Anyway, my TPN has been decommissioned and I'm just waiting for it all to be removed from my house.  In the meantime I'm still shoving my face and praying for a friggin' miracle. 

I've not managed to gain any weight and instead just keep filling up with fluid, having umpteen hospital admissions and/or paramedics out for various reasons and I've just well and truly had enough. 

No, I'm not suicidal, I'm just tired of this ridiculous 'life'.  I'm still plodding on and doing all I can 
to push through, it's just mentally and physically exhausting when there's seemingly no light at 
the end of the tunnel and no let-up in between it all.

To read more from Keeley, visit her blog - Stripes Of Strength.

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