Game over.

What do you do when there’s nothing left to do, and nothing that anyone else can do to help you? That’s what I’ve been wondering to myself for the past couple of months and I’ve came to the conclusion that you don’t do anything at all; simply because you can’t. So nothing changes, you take each day as it comes and you wait for the inevitable. Every day passes in the same monotonous way: Wake up, feed Isla, carer comes, feed Isla, carer comes, get Isla from afternoon nap, feed Isla, keep Isla entertained, feed Isla tea, give Isla bottle, carer comes, Isla in bed, carer comes. 

It’s been really odd, having carers in. I can’t stand asking for help and admittedly it’s something that I’m still getting my head around and struggling to accept. It’s not that I find it shameful or embarrassing, I guess it’s just because I’m younger than most with carers and it also means me having to accept that I wasn’t managing as well as I tried to convince myself that I was. Admitting I’m not stronger than my physical decline and that no matter how headstrong I’ve tried to be; there’s no denying the evident decline and the rapidity of it all. 

This was originally going to be a big long ramble of a blog post, but I’ve completely lost where I was going with all of this so instead I’m going to get wine and I shall leave it on this note...

Don’t bury your head in the sand because like it or not, if shit’s gonna happen then it’s gonna happen regardless. Life’s a bitch and all that!

PS - sorry for the arsey post. No point in sugarcoating anything though, that’s not why I do this. 

- (pissed off and miserable) Keeley. x

Life is one big potassium joke - K?

^ Science nerds (or fellow potassium deprived friends!) will understand that 'K' reference in the title of this post.

Basically this post is just going to be me banging on about lack of potassium and the terror that comes with it.

I am tired. So. So. Tired. Exhausted, actually. Mentally and physically exhausted.
It starts with thirst, such extreme thirst that you fear you may well drink the entire country out of its water supply. But then you're sick, or it drains via your Venting PEG, which then further depletes your potassium. You clamp off your Venting PEG but then that makes you sick, too. Then all of a sudden your head feels like it's swimming in all of the water that you've been drinking. It's as if your head is under water and you're swimming in the depths of the ocean with that crushing pain that feels like your head and face are being crushed in a vice. So much pressure and so little tolerance to it. Then you get the tingling sensation like the onset of pins and needles. Everywhere. And I mean everywhere. Your whole body feels like it's vibrating and the nausea overwhelms you. Then it cramps. Everything cramps and spasms. Your thumbs fold in to your palms, your fingers fold in to one another, your limbs fold in to the spasming muscles and the bones feel like they too are being crushed by the vice that's taken over your skull. Your heart starts skipping and you feel faint as it does so. You stand and before you know it your body has dragged you back down the place you tried to stand from as your blood pressure goes havoc and your oxygen saturation drops. Your heart is going too fast and then it's going too slow and then all of a sudden it stops. It stops and you fall unconscious. Your chest is aching, stabbing, hurting and everything goes black as the pain stiffens your neck and your jaw. And your eyes roll to the back of your head.

Heart attack, they said. Again and again and again. So they replace your potassium, albeit very very carefully so as not to overwhelm your system. And you feel better, somewhat.

Until next time, a week or so later, when it all happens again. Over and over and over again. The vice like crushing sensation persists and the pain and the cramps and the nausea and the fainting and all of the above mentioned becomes all that you can think about.

"Another heart attack" they said. "Cardiac arrest" they say. "Get the defibrillators" they shout.

V1-3 S&T Wave Changes with Ventricular Ectopics with bi/tri-gemini  and Atrial fibrillation. Heart can't cope. 30% normal function.

And eventually, you're just waiting for the big one.

All is not always as it seems

Just a quick reminder, which definitely has the possibility to turn into a very lengthy, ranty and rambly post, so take that as your pre-warning (haha)!


Just because people don't post the entirety of their life on social media to be fed to and scrutinised by the public eye, doesn't mean that things aren't going on behind the scenes. It doesn't mean that this person is absolutely fine, but nor does it mean that they're not.

There are many times I have been accused of lying about things or not telling the full story. Truth be told, it's no skin off my nose. People will only see what they want to see and will interpret anything they see/read/hear however they want to, no matter how much or how little you post or say. I posted on Saturday saying about a new diagnosis that I'd had and how fab my consultant is for going above and beyond to get me some answers, despite him not specialising in the specific area that I contacted him regarding. I then had several people message me asking what my new diagnosis is, then when I didn't reply I was called 'rude', 'arrogant' and 'attention seeking' by a fair few. Again, no skin off of my nose because at the end of the day if those people actually cared then they'd have appreciated that maybe I don't want to talk about certain things, and those who know me would've just appreciated the fact that I have a consultant in my team who is amazing enough to do something as huge as he did for me. Because those that know me, know the struggles that I have had - and still do have - with many of the consultants that I am under. The post itself was an appreciation post, not a 'I've got a new diagnosis but I'm not going to tell anyone about it' because quite frankly I really don't care. New diagnoses don't really faze me anymore, it's just something else to add to the never-ending list of what doesn't work with my body anymore.

Some days I go quiet on Facebook and people panic,  thinking something has happened. Which in all fairness is understandable given that I normally post 204872958 times a day. But some times I'm 'ok' physically, I'm just not in the mood to talk to anybody and I'm mentally exhausted from pretending to be okay when I'm not. When that happens, I'm known to sleep for days on end and only wake to feed Isla (which funnily enough is only ever really when she's awake, too, haha. She likes her sleep! 'Sleep , eat, repeat' is very much her mantra!). Pain is also absolutely knackering. I actually forget that it's not normal to sleep for the most part of a day and wake up feeling like you've not slept for weeks. It wasn't until someone said to me last week "how can you still be so tired when you've slept all day?!" that I remembered that it is, in fact, not 'normal'. I guess these things - though abnormal they may be - become our normality. It's not normal, but it's a normality for many people with chronic illness(es).

I can't actually remember where I was going with this post so I'll just leave it at that I think because my brain (or lack thereof) has gone to sleep on me now. My potassium has dropped again today so when I started this post this morning I was much more 'with it' than I am right now! Sorry for the pointless post, I've completely forgot what I was going to say apart from to all remember that all is not always as it seems. You can pretend to be happy when you're not, and you're entitled to do so. Just as you're entitled to not explain every single aspect of your life if you do not feel the need - or feel comfortable enough - to do so.

Keeley. x

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 consultants 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 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 surgery '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. 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. 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/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.

Anyway, I have loads of other bits to blog about so I'll leave this one now and get cracking with another!

Keeley. x