Inspiration….

Inspiration;

Noun

  • the process of being mentally stimulated to do or feel something, especially to do something creative.
  • the quality of being inspired.
  • a person or thing that inspires.

Pretty impressive word isn’t it??? I don’t think it really describes me, although recently I have been called this many times & whilst it is an honor, it really isn’t me… is it?!?

inspirational-quotes-you-were-given-this-life.jpgTruth is I am 38 years old & terrified.

The truth is, every day I wake up, normally to a beep & boop of a machine, a nurse asking me to sit up & take a drug, oxygen flowing into my lungs through tubes & check my phone, cry, pray & refocus.

Truth is… all you see, the fight, the strength, everything, it is fake… (hold your horses people, keep reading & breath).

Reality is… I have no choice but to wake up, I have no choice but to fill my body with drugs that keep me alive, I have no choice but to fight this as it tries it best to kill me.

I wake up every day afraid, I get weaker & weaker with every attack, I think every day why I am being punished? why I can’t be loved? what did I do so wrong to deserve this?

I am far from an inspiration; I am someone that just has no choice in this. This is the hand I was dealt, the choices I made in life, the words, the actions, the places, the people, everything I CHOOSE to have, led to this path.

I am not an inspiration, I am a fraud. I smile & say I will fight this, when inside I want to curl up into a little ball, go to sleep & not wake up, because that will be easier.

I am not an inspiration, I push everyone away through drug side effects, self loathing, trust issues & knowing I am not worth having people in my life.

I am not an inspiration, I am someone that has no choice.

On the 26th April I was at (my now ex) boyfriends home, an attack started and an ambulance called…. I was taken to resus as usual, though this time was different. This time I was away from my usual hospital, they didn’t know me, ITU appeared & I was taken upstairs.  I was scared, they don’t know how to treat me, will they read it all wrong, D was kept outside the room a lot of the time, I needed someone anyone to fight in my corner so I could focus my fight on breathing, we are now a month on & a lot has happened during these few weeks, I spent 3.5 in Winchester hospital, backwards & forwards to ITU when it was decided I was no longer stable enough to be discharged.

I lived in that hospital, for 3.5 weeks waiting for a bed to become available in a specialist lung unit.  During that time, I met many people on the ward, some that have now become very close friends, some that helped me cope with not only failing lungs but a breakup which I hid from everyone for a few days.

A break-up with someone who I thought would understand, who helped keep me strong, who had been through things before, who had been my best friend for years… one which hurt me more than I thought was possible, one where even though I needed to cry & have a hug & get mad, to ensure he wasn’t villainised. So with everything going on medically, I kept secret, told lies about him going “up north”, ensured he could come back at any point…. Well he didn’t. Thank you to my rocks on that ward, I got through it, although still very raw & painful, I long let go of the hope & with help, long chats, venting my INSPIRATIONS got me through.

People on a ward that knew I was so far from anyone & anything, offered to wash my clothes, get food things for me to eat, gave me hugs, held my hand during asthma attacks so brutal, I would & should have given into them.

THEY are the inspiration, no matter what was in their life, or when their visitors came to see them, they made time for me.  They stopped everything and focused on this grown up, this woman, who could barely cope at life at some points. That wasn’t faked, or for show, or so no one could hold it against you, you where all as sick, if not more sick than I, yet helped me, that is true inspiration having a heart so pure you would do that, I cannot thank you enough.

As I am now sat in Portsmouth Queen Alexandra, unstable in the Respiratory unit & even more scared than ever.

I am sicker than anyone realised, I know that I often hide the true dirty side…. There is no need to have it all out & I will always try & find something to laugh at, anything if even myself.

I am still alone (in the physical sense), my family still in London, friends still dotted about… but I have an AWESOME group of people, we whatsapp till the early hours, post silly memes on Instagram & Facebook, group chats about Drama Llamas, snapchats of … well anything & everything. They make me laugh, send messages though at just the right point, we plan trips and things to do, holidays, concerts, life will go on. They are my inspiration to keep fighting.

The truth is, I refuse to be the reason people cry, or hurt, so I keep fighting this, mainly to prove a point…. I will win. I have a battle to end all battles coming, as much as the Doctors keep telling me I am running out of fight, strength & options, that my time is limited, I will fight for all those people that INSPIRE me.

For my family that have to hold down a job & look after family, who drive 2 hours each way, with clothes & food that I can eat to sit with me for a few hours. They inspire me to know this isn’t about me, this is about who we are. About how we have always been raised to fight things together, to love together, to do things as a unit.

For my friends that are going through health battles like mine & take time out to check I am ok, if I need anything, if they can give me a hug. That keep me laughing, that sit there at night when they should be catching up on sleep or life, take time for me and put me first, they are an inspiration.

For all my other friends who keep me laughing, sit up till the early hours talking crap with me, who could easily walk away like so many other do & have because it became so hard to deal with, Who no doubt are sick of the hospital selfies or posts about needles or drama llamas … but still find time to cheer me up …. they are an inspiration.

To the Doctors, Nurses, Health Care Assitants and Consultants that are fighting for me, that keep going until they are out of options, that are battling through everything to give me my life back, or a life. They are the inspiration

I don’t fight for me, I lost that… I fight for everyone that gives me the strength to carry on and beat this, you are the inspiration I am just someone who is here. I am far from an inspiration, I am just me. Someone that will never be able to thank you all enough for the past month and everything that has been done.

Love you all xxx

Drama-Lama…. or just the pure hard reality.

I often don’t post the full drama behind an attack, there is a reason for this.  It is scary… it is very hard to go through & most of all, I don’t like others to worry.  With the fact that my Brittle Asthma seems to be trying it’s hardest to kill me, maybe it’s time to let people know, to say thank you to my family & friends, to acknowledge that it takes teams of people to bring me out of an attack… that it has been a rough few weeks here in the Gardner-Smith household & we are still very much at critical points in my recovery.

On Monday 3rd April 2017, I was working from home with a little but of a tight chest, still recovering from the last hospital admission. Suddenly my airways began to close and a full on major attack began. Dan had to call the ambulance & sit there watching, helpless as his Girlfriend starts the fight to keep breathing.

As I live in London, normally first on the scene is a rapid-response, sometimes these are advanced paramedics. They are normally here in minutes before Dan has even hung up the phone. They quickly work as my oxygen levels are dropping, they rush to get an IV line into my arm, shoot adrenaline into my body along with hydrocortisone, pump me full of oxygen & nebulisers.

They will keep me going until the ambulance gets there, at which point I will be loaded up, hooked up & rushed to hospital on blues.

RESUS - HospitalWithin minutes I will be in RESUS, Heart Monitors will be on, another IV line will be put in, more nebulisers & oxygen, bloods taken. By the time Dan gets the few miles to the hospital… there will be around 10 people in my bay, working with me to get things going.

Imagine getting into a bay to see your GF in a gown, soaking wet from sweating so hard, fighting to breath with 10 or so people around her, oxygen tubes in her nose, nebuliser masks shooting drugs into her lungs, leads every which way, beeping of machines, alarms, IV lines of Magnesium, fluids & potassium going in on multiple lines.

The first attack on Monday lasted around 4 hours & took a lot to fight, once it was finally under control I was taken up for a night on CCU.  Now with Brittle Asthma, we have different markers, my attacks are hard, severe & long.  They exhaust me, every muscle hurts. The drugs I need to save my life cause my heart to enlarge & beat at a rate that it so fast it causes a danger of cardiac arrest.  After a night with the AMAZING team & being stable, it was decided with my consulting team, I would be allowed home to continue my medications/treatment.  It is never a good idea to remain once stable in hospital mainly because the risk of an infection from someone can, as I have no immune system be life threatening to me. Everything I did in the hospital, I can do at home. We monitor oxygen, carry out nebulisers the difference is my bedroom is clean air & I can sleep. I can either have one attack or clusters of them, but I cannot sit in hospital waiting for them.

Dan & I took it slowly down to the car, stopping for coffee & a bite to eat.  My lungs a little tight, but all ok & to be expected. After lunch we walked to the car, a mere 100 meters… it was a little humid out, but by the time I got to the car I couldn’t breath.  I got out my nebuliser as (luckily I have a portable one) & got in a quick Atrovent hoping it would help & everything would calm down.

NO SUCH LUCK!!! being a few meters walk to the A&E department Dan reluctantly let me walk there, within seconds I was back in RESUS, this time a lot worse off. My body was a Art Linelot weaker, I could not fight this one easily.  As usual the IV lines went in, my oxygen was down low, my Co2 levels dangerously high & my heart rate so high it would cramp & restart itself.

ITU soon appeared & tried their hardest to get an Arterial Line in, but my arteries where so bad after 3 attempts they had to stop as my breathing had got so much worse.  Dan had to sit there and prepare to sign paperwork to allow them to ventilate me as we tried a last attempt at nebulisers knowing my heart was already too enlarged.  As the ketamine was prepared & a new tray of items bought in, we managed to just pull it round enough to allow me to keep fighting even though exhausted. 6 hours since the beginning of the attack, some 30 medical staff later…. I was finally stable to be taken to Critical Care to be looked after.

CCU2

For a week I was on Critical Care, fighting to get my Co2 levels back down to acceptable, whilst having levels of the life saving drug Aminophylline adapted until the max was in Wiresmy blood stream, as they dose me up on Antibiotics to give me a false immune system, increase the steroids in my system to allow my airways & lungs to repair.  I spent the days hooked up to so many wires it is unreal, not being able to shower without help, if I was fit enough to shower at all.  To have people help me eat, go to the toilet, not being able to walk more than 10 meters without loosing my breath. slowly lowering the oxygen until I could breathe without it & maintain levels.

Having mini-attacks & keeping them under control as soon as possible,  as you have been told if you have one more major attack you will be ventilated because you will not make it through.  The reality of having the equipment needed in the corner of the room  to ventilate you in minutes because your levels are volatile.

The reality of being so scared but having to stay strong because you don’t want to worry anyone, when in fact you cry everyday because of the pain, the muscle fatigue, the fear… the heart spasms which rip through your body & cause so much pain you sieze up. The fact that every time you breathe your lungs scream in pain as the muscles are so tired.

When everyone has to help a 38-year-old to the bathroom, help me shower, sit with me when I eat or watch me constantly as I sleep as my oxygen keeps going dangerously low even on oxygen. Where to get any water you have to drink through a straw & oxygen mask as you can’t remove it even for a second.

When reality is pretty scary, you don’t want to let people see it in the moment, in 48 hours my boyfriend had to watch me fight for my life twice, we had to live waiting for me to stabilize enough to come home, knowing that at any point … this can happen again.

Reality is that you feel like you have let people down, plans change, work has to pick up things I was doing, people need to do things for me.  You worry you will loose your job as you have been so sick, that friends will not understand as you have to cancel long set plans, that you have to learn to let people be strong for you, when you have been trying to be strong for them.

Reality is… I cheated death twice in 48 hours because of everyone around me. It could have easily been another story, I don’t often speak about the reality of an attack or how it affects people.

Reality is… I am scared, I stay strong for my friends, family & Dan.  I am 100% terrified of the next attack, I am scared you will all be afraid or sad… I can only promise that I will always fight to keep breathing, no matter how tired I get & how much I feel I can’t …. I will always find a little bit more to give.

Reality is… its 12:38, I have been awake 4 hours, done my medication, 2 nebs, sat in my clean air bubble all day, Dan is with his son doing man things & sending me funny updates, my friends are working, my family busy. I can barely walk to the bathroom today with low oxygen.   As hard as it is to do nothing (yep this is hard for me), I know to stand a chance of stopping this flare up.

Reality is…. 10 days ago, I was happy to be back & working. I was finally getting back to me. 10 days ago, I thought we had beaten this again & we where back to normal… I guess the Drama-Lama had different ideas.

Just Breathe……..

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As you know I have Brittle Asthma.  I was diagnosed after a very severe case of Mycoplasma Pneumonia in 2012, whilst spending nearly 3 months (thank you again to all the staff at West Middlesex Hospital) treating the infection & getting the Asthma under control.

What is Brittle Asthma I hear you scream… or maybe roll your eyes & go its just Asthma dude… thousands …nay millions have it.  Well my friend, you are a little wrong….

Brittle asthma is a type of asthma distinguishable from other forms by recurrent, severe attacks. Brittle asthma is one of the “unstable” subtypes of “difficult asthma”, a term used to characterize the less than 5% of asthma cases that do not respond to maximal inhaled treatment.

Sounds pretty awesome so far right???? no??? we are just getting started in what this crazy form of Asthma is. So within this rare form, we have 2 sub-types, I am Type 2

Type 1 is characterized by sustained, chronic variability of PEFR, while Type 2 is distinguished by sudden unpredictable drops in PEFR where asthma symptoms are otherwise well controlled and the function of the lungs is not substantially impaired.

So what does that all mean??? well pretty simply, I will walk around, as if everything is perfect, have lung function most people will be jealous of, then BAM!!!!!! I will have an Acute Asthma attack with very little warning.  This (at the moment) is normally after what we call “tremor attacks” where I will have a couple of small warning attacks close together.  My Acute Attacks are notoriously hard to get under control & require days of recuperation.

Until July 2016, my Asthma was very much controlled & I took it for granted that I could do anything I pleased.  I could Hike, learn to Scuba Dive, dance in sweaty & humid Festival tents…… not at the moment though. At the moment I am lynn - nebulisergoverned by medications & limitations.  My Asthma is currently classed as very unstable & we are working with the Royal Brompton & my Respiratory Care team at Hillingdon Hospital,  to get this back under control.

I often think people should know, that those on a lot of medications are effected by them, I am VERY lucky that I have the support network I do. What we do forget is that those around us are affected too. My family have to see me some days with no Oxygen and struggling to even walk up the stairs, where my muscles are screaming in pain because they have nothing fueling them, where the effects of the drugs are pushing me to limits mentally & physically.

Every day I need to monitor my Peak Flows, Co2/Oxygen levels, Heart Rate & Body Temperature, so my first thing each morning is to take the waking readings.  Today we are sitting at a waking HR of 102, temp of 37.3, Co2/Oxygen stats of 93% & a low peak flow of 80.

As I sit downstairs at 7:30am… dealing with a couple of work emails & hugging my first coffee of the day. Dan is asleep upstairs all snuggly as I run the first of 4 nebulisers of the day. Another day he will be there monitoring my Co2 levels as I have suddenly dropped & hes had to wake me to get a Nebuiliser in before my airways close.

The Nebuliser runs for about 30 minutes & has a lovely cocktail of 5mg of Atrovent & 2.5mg of Ventolin. Now I have to run these 4/5 times a day, so that’s when I wake up, then every 4 hours after until I go to sleep.  This combination of drugs, gives me around 4 hours of open airways before the drugs wear off, though this can often be shorted.

After I have finished these, I then need to have my morning round of inhalers… Symbicort 400/2  is up first & I breath in 2 puffs 4 times a day.  Then we need to spray 200mg (so 4 sprays)  a nasal steroid Mometasone.

Then I will take some supplements, I am a big believer of vitamins & herbs, so before I eat I have a little Acai Berry & Super Greens.

Then remeasure the Peak Flows to see if they have come up… mine now are sitting at 100.  At this point I finally get to drink the now cold coffee (which has to be decaf), & my first liter of water.

The above 4 drugs (Atrovent/Ipatropium Bromide, Ventolin/Salbutamol, Symbicort & Mometasone) come with a whole heap of possible side effects, what I tend to see from them though, or what I can attribute to those are:

  • Headache.
  • Dizziness.
  • Dry mouth & Cough
  • Bloody mucus or unexplained nosebleeds
  • stuffy or runny nose
  • fast, irregular, pounding, or racing heartbeat or pulse
  • Shakiness in the legs, arms, hands, or feet

Still sounding fun??? nope, well it is still just getting started. About an hour after waking I eat… nom nom nom, there will be way more on diet coming on another blog post, but I need to eat to be able to take the next round of medications….

16a06001c8578dd60bc55b67fe0ad7a4First up we have Prenisolone, the drug we all hate. I am always on this one & the lowest level I can ever be on is 10mg, but the dosage goes up & down depending on how well my Asthma is coping.  Currently I am on 35mg & it effects you BIG TIME.  This is the one that is hardest to deal with, it takes a lot of patience, love & understanding. I suffer with the following side effects known to be caused by this drug & it is why it cannot be suddenly stopped, you also need to be monitored so carefully when on it. It does save my life so I cannot complain, but daily we have to deal with…

  • Depression & sudden mood changes
  • Agitation & Irritability
  • Anxiety & nervousness
  • Dizziness
  • fast, pounding, or irregular heartbeat or pulse
  • Headache
  • Water retention
  • Massive weight gain *** this gets me down more than people realise ***
  • Moon Face full or round face, neck, or trunk
  • Dry Mouth & Increased thirst
  • Fatigue
  • Nausea
  • Needing to pee…. ALL OF THE TIME
  • muscle pain or tenderness
  • sleeplessness
  • sweating

The higher the dose, the harder the effects are to manage.  I know I have said it before but I really do have to thank my family & friends who I don’t know how they put up with me sometimes, as for Dan well he really is a saint. For instance, if my sugars & oxygens drop low at the same time, I will suddenly get very very short or confused. He has to figure out if to feed me or run for his life.

Next up on the morning drugs.. we have Omeprazole, which I need to take to combat the effects of the drugs I take. This stops the acid reflux & some of the sickness caused with the amount of medications I put in my system.

Then we have the most important drug of all Aminophylline…. 350mg of the life saving drug, the one that truly does keep me alive. Dramatic isn’t it…. but we have figured that if my levels start to drop, so do I. I have to have the bloods checked on this one regularly to ensure it is in my system. This does however cause the foloowing side effects….

  • Headache
  • restlessness
  • trouble sleeping
  • fast,  pounding, or irregular heartbeat or pulse

The major one for me is the Heart Rate, mine is always at a level which is dangerous, it sits around 100 at resting & has to be watched.  A lot of the drugs I am on push it up, some days I can sit around 160 for hours on end.

I also often need to take an Antibiotic as I have no immune system, this is kept suppressed by the steroids.  So I run frequent courses of Doxycyline (I happen to be allergic to most antibiotics to make life easier). I have pain killers which I try not to take to combat the constant muscle fatigue & headaches, but sometimes I need to give in and take them.

I then throw in some more supplements, which include Multi-Vitamins & Minerals, Garlic, Hemp Oil, Ginseng, Green Tea, Q-10, Aloe Vera, Dandelion extract, Probiotics, CLA’s & Potassium.

So this is all around breakfast time & I am already pumped full of more drugs than most people would take.

During the day I take other supplements such as BCAA’s, Taurine, Warrior Greens, glucosamine, collagen & a thermo cap. I take these with full support of my medical team, Dan & my trainer.  I am back in full training & so to ensure my body is getting what it needs I do ensure that it is supported with diet & supplements.  I do hate the fact I have put on weight & have to battle the Pred-gains, but this is being done safely…..

But you will also see I need to repeat the Nebuliser & Inhalers around lunch, dinner & before bed (as a rough guide). Also making sure that through the day my stats are constantly measured.

I have a nebuliser at work, thankfully but I do have to carry an emergency nebuliser in my handbag, with emergency nebs, including an adrenaline epi-pen.

So after a long arse day, its all tucked up in bed with my sleepy time tea, snuggles with Dan & another side of medications… before we get to say goodnight.

Aminophylline is first up, putting in the second dose of the day to make sure I get through the night, it is around a 12 hour running time, so you can imagine what it is like when I miss a dose.

Then I have to pop a Cetirizine which is one of 2 antihistamines I need to take, along with Montelukast, both of which help with any allergies and swellings of the airways due to them.  At night is when I have to take some pain-killers normally co-codamol as the headache is too much to sleep with.  On top of this there are a couple of additional supplements in the way of Zinc, melatonin & magnesium which I take here to aid
e sleep. Along with a digestive aide to combat everything else in my body…… so below is my daily intake…..

drugs

So there you have it, life with a chronic illness, medications & routine.  Its all fine when the side-effects are at there lowest, but when it is a really bad day, when you can barely function, when your heart rate is sitting at 140 for the 3rd day in a row, your head is pounding & the pred is making you want to jump off a cliff…..  you sometimes wish you could stop all the drugs, get off the roller-coaster & for one day just be normal.

But then again I choose life, I choose to fight this & with the people beside me…. I win daily battles.

Hi, Hello, Howdy….. my name is Lynn & I am a survivor of domestic violence…….

Otay, actually I am many, many more things.  I am a successful career woman, girlfriend to D, a Daughter & Sister, the Domestic Violence is something though that I still live with the effects of.

On the morning of the 26th of March 2016 I would walk into the kitchen, ask for my bank card back, be told I was disrespectful for asking & be beaten up for the last time at his hands. I would make a phone call that would change my life, I finally had the courage to speak up, to let people know, to escape.

Fear would set in, the police would show up, I begged them to leave, I was in ripped bed-clothes, I was bruised & hurting.  My friend where on their way, I just wanted to get out.  A few moments later they would take him away & the beginning of a hellish few months would start.

I would have things stolen, thousands of pounds of money & items, things destroyed, have to deal with internet-trolls & bullying from grown adults.  Stalking & being followed by grown people who had listened to how he acted in “self-defense” & was totally innocent.  None of that would matter in the weeks that passed, I got used to living in a house that was dark & empty. Not brave enough to turn lights on, sleeping on friends couches, doing what I could to not be in a house where I was beaten more than once, where my blood was often cleaned from the walls, where items were smashed & repaired so many times it became hard to hide it.

What would happen is months of hospital treatment for the worst injury I had ever received
from him.  During a bare-footed kick to my shin, whilst I was backed in a corner, I would develop a 12cm by 12cm hematoma (among a lot of other bruises from that attack).  This would take months of blood thinning medications, pain killers, hospital trips & months off work…. excuse the picture there are thankfully only a few that remain around of this time.

What we wouldn’t know is after the trial, after I had started to live & laugh again, I would collapse in a field at a festival.  On July 18th… the last selfie at Truck Festival would happen & in a matter of hours I would be fighting for my life in RESUS followed by nearly a month laid up in John Radcliffe, before becoming stable enough to leave the hospital.  Whilst there I would be eating in the restaurant when I would find out he was sentenced for a year in total for ABH & other charges for other times…. hardly a small relief for what I was & had just gone through.

What we didn’t know, is that it would start a flare up in my Brittle Asthma.  One of which I am still fighting to get under control.

Fast forward now to today, it is the end of March 2017 & because of that blood clot I have been admitted to hospital some 8 times for extended periods of times.  All down to the issue that my lungs have been damaged by parts of that clot. I have battled for my life more than once & pumped full of so many drugs it is insane.  My boyfriend & family have had to hear as ITU are giving me minutes to pull through before a tube is put down my throat.  They have had to see me struggle to breathe & stay calm. I have a rare type of Asthma which I was diagnosed with in 2012,  this has rapid onset acute Asthma attacks which are notoriously hard to control. It was for years very under control, now with part of my lung effectively dead & my body weakened from treatments, it is now very much doing it’s own thing, with every attack I become weaker.

My day is now governed by medications…. every 4 hours I need to be able to nebulise to ensure my airways stay open.  I take a cocktail of drugs a lot of people would be impressed by, but the side effects drive you crazy. *** Big sorry to family & friends who have seen how much Prenisolone can do to a person. ***  I have to live in clean-air & can’t open the windows, often need to be on oxygen & any strong smells can make it impossible for me to breathe.  The house has to be as bacteria, dust & allergen free as possible. I can’t go out when the pollen count is too high or when pollution (I live in London, so trust me this is a hard one) is too high or I have to wear a face mask…… not a good look unless you are a ninja.

D & I battle daily with the restrictions, but we know that my mates are beyond awesome, that my work & the company I work for is more than supportive, that most of all… I GOT THIS SH@T. That we are unstoppable & between us all, our families, mates etc, we make awesome teams.

So yeah I might have this Chronic Illness which can on bad days get me down, can cause me to fight for my life.  I may sometimes have to change my plans last-minute, but I travel the world, I dance at some of the best concerts, I laugh so much I almost pee myself and I have something much much better…. I can hold my head high, say I survived, kiss the boyfriend on the lips & dance the night away in which ever country I happen to be in at the time.

One year ago, I was afraid, I was a little girl in a lost world, I was living with a monster who made me believe it was all my fault, someone who always had every excuse under the sun.  One year ago… I was a mere shadow of who I am today….

My names Lynn & you know what I am AWESOME.