The Survival Kit.

So this is it. This is how I am moderately functioning. What it takes for me to live an 'average' 20 something life. But this is what nobody sees. Really. Yeah they might see a quick puff on me blue inhaler when I'm flagging near the red traffic light but they don't see the medication which is labelled serious and you get the whole 20 questions by it every-time you go through airport security or asked by another medical professional. You wanna bet?! Something along the lines of 'what are you taking it for? Is it just you taking it? Why such a high dose for someone your age? What you can up the dosage if it gets worse?'. Don't worry about me clueless doc, I'm just taking 1200mg of it. And I can tell ya for free, that is on a normal day. Whilst we are here, that medication has stopped working for me so off ya pop and get me a little something stronger. 

All this sums up living with an invisible disability. What is behind closed doors. The shit that gets me through. Some daily and some when I go through a rough patch.

My day one pill poppers

Your probably thinking oh so ya day one pill poppers, your meaning necking back a couple of ibuprofen every 4 hours and bobs ya uncle. Good joke, get out. I wish it would cost me a measly 25p ibuprofen to get my shit together on the regs. Nah, why have one thing when you can have everything. and everything at once. 

So there is the average person daily pill poppers on the ibuprofen and paracetamol. Let me just stop ya in ya tracks, who the sweet fuck takes paracetamol nowadays. Might as well swig a bottle of calpol down ya neck and be done with it. Probably have better side effects with that. Taking a frying pan to my head would do the trick over some paracetamol. Anyway moving on from #paracetamolgate, I like to keep things light around here when it comes to pill popping, starting my day off with a nice swig of gabapentin at 600mg to start the day off nicely, followed on by a few swigs on the blue (Salbutamol) and red (Salamol) inhaler. It always cracks me up when I go for asthma check ups and they are like so just blow really hard into this infested tube they have lying about to pop the bubble on the screen. Day 64 of standing there in a coffin sized doc's room and I am nearly kicking blue after the doc thinks it is the crack to ask 'let's just do it one more time for luck?', mate my luck ran out 23 years ago pal. Great chat. It makes me laugh as they ask you this like your lungs are built like a shit brick house. To this day, 23 years old and they still ain't grasp the concept that I am here because breathing ain't my strongest point so cut the crap with many breathing attempts. 23 years and I have never ever burst that sodding bane of my life drainer of a bubble on the screen. Let's be on with it. 

Side note - when I signed up for organ donation, I ticked every box except the lung and heart to donate. For some reason, looking back through my hospital notes I kinda got the gist that I would probably hinder a person's life further rather than benefiting them. I'll take one for the team. Here for a good time not a long time.

And lastly, I ALWAYS without fail will carry round a pack of hearing aid batteries. In my pocket on a dog walk, on a night out out with the pals in town, on holiday etc. Someone could nick my phone and purse but if someone decided for the bants to nick my hearing aid batteries, i'll be triggered. Just putting it out there.

My shit has hit the fan, drug the fucker up days

I have some medication which I like to whip out when I ain't got control of my shit and everything feels like it has been hit by that rare juggernaut that has come through the city centre, run over me and then reversed back over for good measure. Those days where the normal reg stuff you do just ain't cutting it. Not even touching good. The slight problem I have is because my pain threshold is higher than a fucking kite, I struggle to say when is enough. Enough of the pain. Enough of not sleeping. Enough of being moody (what's new?!). They are the signs of when is enough. But normally when it gets to this point, it takes a few days to recharge. I ain't at the tender of 23 learnt quite yet to know where the middle ground is. To gauge earlier when it starts to spiral so I can put in a 3 prone attack to combat the situation. The pain, the numbness, the aches etc. 

Anyway, for me lungs to keep them just about afloat, I will have a good old 30-45 min sesh on a nebuliser which is a really attractive, look at me boys, paint me like one of your french girls contraption where you breath in and out of a tube sticking out of your mouth whilst you inhale, the simple fact of sea salt water. I whack about 2 salbultamol (the medication part) to 3 part saline (posho sea salt ya get on prescription) and crack on a film or read whilst I can feel the tension on my lungs start to ease off and does not feel like I've got a bunch of cracked ribs and a crane is sat on them. 

For my back, the constant everyday drainer, I use a tens machine. Blooming god's gift I tell ya and I ain't religious. I hit a bad patch last August to the point where I couldn't sleep, a bath was not cutting it and just moving felt like I was being kicked repeatedly by a truck (I love a good motor vehicle to aliken everything to, don't think they get much credit otherwise!). My mother, birth giver suggested this TENs machine which I actually was not stubborn by this point and ordered it before she even drew breath. I must have been in agony if I was not giving back chat or ignoring the suggestion and being a stubborn old cow. Cheers to Amazon Prime, 24 hours later I had all four patches stuck directed to the pain coming from my back, whacked on the electrodes, turned it full up, shoved the device in my pocket and sat feeling my back getting more and more numb the longer I kept it on for. You can technically have it on for up to 36 hours but knowing me I would nod off and cause a mini house fire in the process but you do you. It cracked me up as whilst setting it up, reading the instructions to make sure I didn't electrocute myself in the process, it said to turn the pulsing and electrodes gradually to get ya body use to the mini electrocutions it was sending to your system. Yeah, nah, ain't nobody got time for that. You know my name, not my story. Just stick it on, ramp it up and be done with it. Best £19.99 I have ever spent. Call it a massage if anything. 

Since then, things have kept at bay, touch wood. I know I ranted on about ibuprofen saying I'm too good for that but I do take that alongside everything else just as a back up, a fail safe. Just probably not at the level I should. My tolerance to medication ain't normal but when you've had 23 years of having things shoved down ya neck, trying new medications, tubes in and out everywhere, operations etc, you just slowly overtime become resilient. Your body is so use to all the different medications, that side effects don't really hit ya like an average person. You do you and all that.

I like to feel like an average person, when ibuprofen is taken daily for most people to treat ailments, I treat it as a bit of light relief. A detox if you can say. Along with hayfever tablets, I take those cause my mum thought it would be an A class idea to get a cat when both of her children (runts!) are allergic to the sodding thing. 10 out of 10 there. It's a challenge she has set up for us to just trip and get dragged under. Happy families. But I like that it is a normal medication. 

A medication that you can just chuck into your trolley from the shelves in the supermarket. You don't have to sell a vital organ to pay for a prescription over the counter which you have to order, wait and then go to a pharmacy 10 miles up the road to pick up. Yes I know and fully understand that loads of people have it way harder. They can't leave the house. Their survival is single handily on the medication. Without them, it's not a day in bed to recover, it is a trip to the local A&E and admitted. But that doesn't mean that your situation is any lighter. I am so thankful that over the years, my condition has leveled off, majority of the time with a few hiccups now and then. I'm over the years where it was a middle of the night, blue light ambulance scenario bombing it down the road or motorway to the local hospital. Can't think of the amount of times, my mum has had to dial the fearing three digit number. The amount of times she has ridden in the back of an ambulance.

 My health is balanced and stable, for now. I've learnt how to live with it all, some of it I am still in denial over or just shrug off but that is just being human. I don't ever say I am a condition. I am an average 23 year old gal and living with a condition on the side. A little hindrance from time to time. But everyone has some kind of struggle. This is just mine. I ain't a condition. I am not defined by a condition. No one is. Everyone needs to stop slamming or judging on others and instead help pull people out of ruts, struggles and pains. You will feel better for reaching out and the person in need will feel wanted and loved. Even if it is a quick text of 'how are you?' can lift anyone's spirit. Yes they might not instantly text ya back or may just see the message but the sheer pain prevents them from picking up the phone to reply straight away, it does not mean they do not care about your message. Honestly, it makes you feel warm inside. The kindness in the thought. But they will respond when they feel ready but I bet ya bottom dollar they are so grateful for the little text message to help them feel like they are present. A struggle, a condition, a challenge you may be fighting. It does not mean you are any less of a person. You wouldn't be you without it. Try and embrace it, you'll feel a lot lighter and more than likely people will reach out to you once they know they are not alone.

I hope you enjoy the read and it's class being back. Getting the mojo to write again, slowly.

Cheers for sticking by me. 

Love,

T

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