I’ve been meaning to do another post for a while but time has flown by and it seems putting what’s in my head into physical words just hasn’t felt possible.

A little health update is needed i suppose. For me, I guess I’ve avoided this one. Since writing everything down has been my way of attempting to process everything; by putting it off, I’m pushing it all to one side like it’s not there. I can’t shut it away forever though, I can’t pretend it’s not happening.

I’ve found my health has been…yep you guessed it..deteriorating yet again. I had a lovely overnight stay in hotel hospital thanks to an amazing 2 week headache (can you sense the sarcasm in this post yet?). I won’t bore anyone (including myself) with the finer details of my stay, because let’s face it – we all know hospital stays suck. They’re not exactly made to provide you with a 5 star worthy trip that you’ll recommend to all your friends. To sum it up though, I got next to no sleep and somehow managed to leave the hospital with more medication prescribed – who would have thought that was even possible at this point. Let’s also add in the absolute meltdown I had when I was faced with the possibility of another lunbar puncture and the concerns I had some kind of bleed on the brain (I didn’t). I’ve had at least 6 lumbar punctures in the past with varying degrees of pain and success – the first and last being the most traumatic. I won’t start unearthing all of that baggage right now, but I took the small win of avoiding the procedure (I’ll take what I can get these days).

After weeks of constant headaches that I pretended didn’t exist as a terrible attempt to avoid visiting the dr, I finally caved. Well not exactly caved, more along the lines of; I got fed up of the pain, but also gave in to the non stop badgering of my friends to get it checked (I call it peer pressure in their presence just to avoid the classic “told you so” malarkey). So, to cut this long story as short as I can – the consultants explained that the tension throughout my body had now managed to progress up into my head. This meant that somehow my already crappy condition was even worse. More importantly it also meant that this headache wasn’t going away. Not then and not even now, it was here to stay. In fact, I don’t know when I’ll next wake up without one and I’ve now had this headache for over a month. The medication never really gets rid of it either, lights make it worse, being tired makes it worse (let’s all laugh together at this sick joke the world is playing on me with that one), screens make it worse and so on… Actually to be honest I could provide a lengthy list of the many different things that make this damn thing worse. Do you know what I can’t do though? I can’t give you any kind of list of things that make it go away, or even better for that matter. I tried a headache cap and that got so cold it gave me a bigger headache (oh such irony), I also tried lying in dark rooms, painkillers, massage etc and here I am, still sat here with it. It’s taken up residency and it’s not going away anytime soon.

Every time I go to the dr for an update, I never seem to leave with good news and you know what…it’s exhausting. Life is exhausting but where’s my break? So many people tell me I’m looking well, I don’t look tired, I seem okay today or I’m doing better. No one understands the reality because I don’t let them see it. Here’s the brutal reality. In what is now more than a year and a half, I’ve not had a single day free of exhaustion and excruciating pain. I’ve not woken up without constant reminders of my limitations. I’ve not been able to walk into another room without being drained, without needing a list of medications, without needing someone close by all the time. I’ve not been a single day without crying. It’s hard to admit because I really am much more positive than I was previously about all this. But it’s so damn hard to face the hard reality that this is my life and it doesn’t get any easier with time. I would give absolutely anything to have even 5 minutes without pain, actually, just give me an entire 1 minute and I’ll take it. Every single day I wake up and I’m immediately disappointed that I’ve woken up. It sounds so depressing because I am happy to be in this world and I’m really trying to make the most of each day, but the pain just never ends. It’s so hard to explain just how difficult it is to feel my body being completely drained of all types of energy at every moment of everyday. Trying so hard to find a way to explain the need to sleep all the time and still being absolutely shattered. To feel the neverending aches in my joints, the sharp shooting nerve pains down my back and into my legs, the muscle weakness and feeling as though someone has hung heavy weights off my entire body with every movement. The pain is genuinely so unreal and that’s a tiny slither of it. I’m not afraid to admit that I’m not ok. I don’t want this; I don’t want the pain, I don’t want to rely on people all the time, I don’t want to cancel plans because I’m too sick, I don’t want all these medications and the side effects. I don’t want fuss, the sympathy and those looks of pity people give me without even realising it. I just don’t want it.

I look at myself in the mirror and I don’t recognise the person staring back at me anymore. I feel sick looking at my own body physically – I used to hike, run and keep active. I don’t have that anymore and I hate myself for it. I feel disgusting all the time and I become obsessed over it. I cried recently because I ate a chocolate bar. It was all I’d eaten that day but yet here I was crying in the toilet at work for a single chocolate bar. The mental impact my conditions have on me is crazy to be honest. I look at myself and all I can think is: What happened to me? This isn’t the person I recognise anymore. I’m not myself anymore at all. The longer I battle this, I worry about how much more I can take – both physically and mentally. I feel like my body is just ready to give up at any moment, and yet I still keep waking up each day.

Here’s the thing though, I know everyday is so hard, I know there’s no guarantee it’ll get better no matter how much people try and reassure me that it will. But here’s the other thing, life is never easy anyway. If it’s not this then there will be something else. There’s always something in life that we find hard if we look hard enough for it (granted I didn’t really look for this). I can’t lie and say I’m being positive about it because sometimes it’s simply just not possible. What I can do though is try to find the good where possible. I can make the most of what I am able to do rather than get myself into a state about what I can’t do. I can continue to surround myself with all the incredible, supportive, beautiful people I have in my life and keep making more memories. Then one day when I’m better (I try to still be hopeful for that) I will look back at my hardest times and remember it for all the things I did and all the amazing people I spent that time with. I’ll be grateful for all the new experiences I did during this time and the strength I had.

So for now I’ll keep fighting because that’s all I really can do. I’ll keep making plans; I’ll keep trying to make the best out of this awful situation by doing the things I can do with the people I love, and hopefully one day it’ll be worth the battle. It’s the memories that last a lifetime so I might as well keep making good ones. I only get this one life, so I might as well try to really live it and not just survive it.