As I Lay Me Down To Sleep…

Where were you…When I was lost in a sea of thoughts unable to pick them apart… drowning in an abyss of overwhelming anxiety, over analyzing and desperately seeking a way out…

Where were you when I spent a thousand nights crying myself to sleep from the indescribable pain… disgusted with myself, by myself…

Where were you when I sat there alone, staring into the beyonds but not seeing… lost in panic, utter fear and trying to divulge any solution that would take life on a different path…

Where were you when I learned that escape from my own mind was to numb the screams with substances… to create a void of nothingness where I felt nothing but the effects of what I had consumed… 

Where were you when they stopped working and I was alone again with my thoughts unable to quell a silence long enough for me to feel sane…

Where were you when I decided I had had enough… and decided to depart… as I sat there swallowing what I felt would put an end to my life… where were you? Didn’t you see?

Where were you when I slammed doors and screamed angrily and told you I hated you, I hated my life, I didn’t want to be alive anymore. You never thought to ask why… where were you?

Where were you when I fought those demons over the years succumbed to addiction because it was easier to not feel than to feel… it was easier to swallow a pill than to talk about it. It was easier to escape from myself and not have to bare my soul to anyone for public humiliation…

Where were you when I began to rebuild my life, when I tore my own self apart before anyone else could. And put myself back together again piece by piece while trying to raise my own…

Where were you when illness struck and life became impossible other than sitting on the judgmental fence, dictatorial about how to do this and that but unwilling to help carry the load…

Where were you when I became strong again and learned to love myself enough to start loving others… where were you to tell me you were proud of what I had overcome and that life could have been so much different…

Where were you when I lost my best friend this world had to offer… who sat with me on the floor letting me scream while my world fell apart… who joined me to tell the kids he had gone, leaving me to comfort the children he’d left behind… trying not to fall to the floor as they cried over his body on the mortuary table… and the months since…

Where were you when we were homeless and poor with no place to turn… until strangers came to help pick us up and help us fight to turn it around…

Where were you when I reached a pinnacle where I became impenetrable, but for the love I feel for others and the craving I have to be loved just the same… 

Where were you when life’s battles hit hard over the past year but we saw it out and came out of it with a better perspective with more blessings and a greater appreciation for life…

Where were you when the little girl inside of me learned of horrors that most couldn’t dream of… but learned to live and overcome, to love and not to judge and to break the chains of addiction to face the demons head on and quell the fear found in silence…

Where were you when I learned that having helped myself I could now help others… and began on a journey to ensure nobody ever felt as alone in their lives as I ever had several times throughout my own… where were you now that I don’t need you? 

You sat there judging, thinking I didn’t know what was best for my own life. Not realizing that it was me and those who travelled the road with me that put me back together…As I realize this, the judgement means even less. Because when I needed you, where were you? 

Don’t judge what you cannot comprehend. Walk a mile in my brogues…I am stronger than I had ever hoped or believed I could be. I wish the same strength for those I love dearly. And to all of my people who gave me this courage through helping me tear down what seemed like impossible walls… 

I know where you were… and I love you.

Titch πŸ’™

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Big Boys DO Cry… (an oldie but a goodie) #alwaysrelevant

So… That old cliche, “BIG BOYS DON’T CRY”. Every time I hear it said to a young male child it grates on me to the point that it takes willpower not to allow my opinion escape my pursed lips. Growing up in a generation where men were expected to “grow a pair” and get on with it, I find it extremely frustrating to see my generation (not all of you!) treat a man that expresses emotion as a form of weakness, a taboo, something that is awkward and uncomfortable…
I was one of those kids and I’m sure most of you were, that if you fancied a good old cry, the Mammy or Daddy turned to you and said “Keep it up and I’ll give you something to cry about!” Or “That’s not worth crying over!”. Find logic in that. Sometimes we all have those days where the world feels like it’s caving in, everything you touch goes wrong, your mind is going a mile a minute and you want to blow, to nuclear proportions, and that’s just us adults.
To a child, crying comes naturally, to try an set a precedent in making the child feel like their problems aren’t worthy of such a form of expression is stunting their emotional development. Sometimes having that cry is exactly what is needed.
Encouraging expression of emotions should be the norm. Just because there may be no physical pain involved doesn’t mean their isn’t an erratic undercurrent of psychological emotional trauma going on underneath their fragile little surfaces.
I recently discovered the joys of crying over recent years, thanks to my darling angel, my boy’s father. I could explode on a water-works snot fuelled rampage and he’d sit there listening to me trying to explain where the crazy had come from through huge sobs. Even if I’m being completely irrational he lets me go on until I run out of steam. Granted, I did feel ashamed and like a complete eejit the first few times it happened but that was because I was raised in a manner where crying wasn’t an acceptable form of unleashing the beast so to speak.
Do I want to impress on my young sons that bottling things up is the right thing to do? Let is fester away inside until it manifests itself in the form of a physical ailment. No, thank you vey much! Crying is normal. A part of life. I find myself sitting down with my boys saying it’s ok to feel sad and it’s ok to cry. Heck, every time I watch the Lion King and Simba’s Dad Mufasa dies, I fall to pieces, I cried because Bambi’s Mother got shot and I cry because I’m afraid, happy, sad and sometimes it even happens when someone shows me kindness. I know this may make me seem like an emotional wreck but I assure you it’s quite the opposite! I’m sure my sons getting pushed over or falling are far greater reasons to cry than a fictional Disney character becoming an orphan. So we encourage it!
I want our sons to be able to express their emotion and learn to master their coping skills as the grow and develop. I want them to feel it’s ok to cry both tears of joy and sadness. I want them to be just like their father, and be able to feel comfortable allowing their future partners to open up in heaving sobs if they feel it’s all too much. And I want my sons to be able to comfort that person assuring them that it’s okay to be sad and it’s okay to cry. So we continue to blub at movies, we cry because we’re overjoyed and we cry because it’s normal. And then the calm rushes in and the smile reappears on their cherub like faces and they assure me they feel better after letting it all out. And we hug and talk it through and plod along knowing that little men and big men do cry. And that’s okay.

Besides… I’ve always loved a bit of heart in the men in my life.

Mikey, 2 years you legend, thanks for all the favours…

Hey Mikey,
It’s been a while! You’re still missed as much as you were to begin with, I don’t think that will ever change. Although the sadness isn’t as bad as it once was, it’s still there when we remember the fun times we can no longer share with you in a the ways we want to… oh where do I start…
Things have been interesting to say the least… we had to move house again, but that’s not the end of the world, we’re grateful to have a roof over our heads and the kids have made good friends here as have I! So I decided to shake things up in January, and turned everything around for the better (I hope), I was sick of being sick and found a good guy willing to help me out. When I think of all the time wasted being ill it really makes me angry that we missed out on so much even though we still tried. Long story short I copped on and changed to vegan and decided cannabis oil would be my meds from now on. By April a few months on the results medically were coming back better than ever, for the first time in a long time I felt human and could properly start enjoying life again rather than going through the motions. Thankfully this has lasted! Although I know I’ve been asking you to pull many strings for myself and the kids and I feel you’re working your magic since you’ve left, as no matter how bad things have become, it’s always turbulent for a while but it always seems to balance out in the end!
My body got so well that now I’m expecting again… a wee brother or sister for the chaps, I expected they would be annoyed but they weren’t, but it’s a deal breaker if it’s a girl they tell me. Although Cor is having second thoughts on this and tells me now it would be somewhat acceptable to have another female in his midst! Saoirse is also really happy about it! Telling me she doesn’t care that she’s still going to call it her brother or sister. She’s a proper little warrior same as the boys… taking everything in stride just like you! I’ve got the honorary title of “step-Mam” amongst her friends. That gives me a little buzz because in a way she’s always felt like one of mine and this is how she will always be treated no matter how old she gets! She’s not to keen on school, nor is Fionn, Cor doesn’t mind it! She’s also tried out her makeup skill on Cor, he was faaaabulous daaaah-ling , he was delighted with himself! Think we could have a performer in our midst. She’s turning into a stunning young woman although when she dresses up I think noooo! I still remember you as that two year old that couldn’t say “sausage” properly! Time has gone so fast.
 I’ve been asking you to help me out a lot with this pregnancy too, and I know you have been… because for some reason my body is managing what should be impossible. But you always told me that it would. So thank you for staying with us.
The kids have been amazing, Fluff is hitting the tweens now we’ve been calling them! He can be testing at times when he gets the little burst of hormones or the little burst of “ugh Mam, you’re so uncool…” but I know that’s par for the course, my usual response is “I love you too babe!” I can tell this peeves him off, but we are picking our battles. Deep down he always will be a Daddy’s boy but he is also a Mammy’s boy and does and awful lot to help me out… he’s very intuitive and sensitive to what’s going on around him, so I know when he’s asking if everything is ok, he’s picking up on a worry or a change in atmosphere. But the one good that’s come from all of this is the brute force honesty in emotions, and he will now sit down and pour his little heart out no matter what it is and say how he’s feeling. I know he’s missing you terribly still. But he copes with this by reminiscing over the fun times! He has his little tribute to you in his room, a photo of you holding him on the beach when he was a baby. He says goodnight to you before bedtime every night. We’ve a photo of you on the landing hall table too… I’ve noticed he touches this every time he passes it, for comfort or to bring him luck or strength I don’t know, but he’s got his rituals that help him feel closer to you. I know as he gets older and we are missing you for the big events, he will always find a way to include your memory. This is important to him and to all of us, that you’re still part of this family no matter where you are…
Cormac is just absolute gas, the clown that you were, he’s become. His goal is to make everyone smile and be happy and if he accomplishes that then it’s been a good day. He hates to see anyone sad or hurt. He’s a real sticking plaster and worries a lot about me going like you did but this is something he needs less assurance of as time goes on. As he sees me become stronger I think his faith is being restored a little. He reminds me of you so much, the eyes, the smile, the humour, the sensitivity… he was devastated to discover the tooth fairy wasn’t real this year.. silly mammy forgot two nights in a row to put the money under the pillow! We had meltdowns of mammoth proportions. He very much believes in magic. He is convinced Santa is very ready because there is no way I could’ve been in hospital that same Christmas you had died and Santa still brought all those presents! I’m so grateful to the group of parents that got together to do this for me at a time I couldn’t, you kept the magic going for my chaps when the light was pretty much extinguished. 

People have been amazing. We have some really top notch people in our life who I call family and I would have been lost without them these past two years. My gran Nancy passed away recently… it made me think of all the times Joe used to carry you from the car up the hill into her house on his back for a cup of tea and the two of you giving it good ould banter, she loved you to bits. I never forget the year she bought you socks for Christmas same as she did for all the men, but this was a privilege because no partner got socks other than her son in laws! She was mortified when the lads told her you didn’t have any feet to put them on! But you broke your arse laughing when I told you and jeered her over it afterwards, I think it was cigarettes you ended up with! But she gave as good as she got, I always loved seeing you two together and I like to think you’re up there having the craic since… that helps me deal a little better with the fact you’re both gone…
Mikey I could go on for days, most importantly we love you to bits, always have and always will. You’ve left a massive hole that we try to fill with the epic memories you’ve left behind although we know this is impossible. Thank you for being in our lives and leaving the 3 wonderful gifts you have, as long as they live on you’ll never be gone. They all remind me of you in so many different ways but they all have your good heart.
I hope you got the messages they sent up to you this evening! We’ll chat soon babe, thank you for helping us heal through being such a big presence in all of our lives.

Love you to the moon and back always,

Titccccchhhyy and the Sproglets πŸ’™


Anger… The Red Mist… whatever you call it… what does it solve…?

First of all, I want to say I’m guilty of having a bitch fit every now and then, although a few years ago these could range to many a day! Something simple, being late for an appointment, or spilling sugar while trying to put some into my much needed cup of coffee was enough to make me feel like a raging bitch that felt the whole world was pitted against me. It didn’t make me feel good, in fact I just about hated that so little could trigger me, in order to justify it I would blame it on what had happened or what someone said, rather than coming to the realisation that only I control my emotions. Nobody else! Easier said than done when you want to punch the wall or scream like a banshee when the latest fuck up occurs! 

It took me longer to realise that I might be angry over something someone had said or done, it took a while for me to connect the dots, that by me sitting there seething with fury, that wasn’t affecting the person I was feeling angry at. They were completely oblivious to my “plight” yet I was stuck on this hamster wheel, unable to step off or unwilling to. These happy-go-lucky people absolutely turned my stomach, I physically felt ill (even a little angry if I’m honest) that some people seemed to breeze through life as I interpreted it! Obviously I now know that this isn’t entirely true, some people have a nightmare but choose to put a bright face on it with an attitude of positivity because they realise to be anything else is burning up much needed energy, using it up on anger just ensures when you come to dealing with the next dilemma it is next to impossible. Why? Because you’ve already burnt yourself out giving too much of a damn to things that didn’t earn or deserve that much of your time and energy… but this is something that takes time to realise and something that we need to realise before we can begin to make those positive changes that we so need in our lives. In simple terms – it’s the first step in the process of becoming one of these happy-go-lucky feckers!

Negativity breeds negativity, if you’re first reaction is to explode the second something goes wrong, it sets off an anxiety in those around you, those who care but cannot do anything to appease how you react, that is in your hands. I am also guilty of this. I used to explode and have a rant and completely disregard the people in that space at that time and how it was impacting on them. My general reaction when someone used to explode around me was for me to shrink, to become so small I was almost invisible, afraid to make eye contact in case I then because the focus off their anger. I now realise this is the effect that I had in others when I carried on this way. Apart from making everyone around me uncomfortable, I was making myself ill without realising. All the anger was fuelling physical decline. Regardless of what you believe, mental and physical health are directly linked, if we feel crappy in our minds we will feel crappy in our bodies and visa versa. 

Does anger actually solve anything? My honest opinion is not directly, no… it serves as a catalyst if we direct it in a purposeful manner. So that thing or person you’re pissed off at… instead of having the rant, get proactive and decide how best you’re going to move forward, anger only serves to drag you backwards, the situation might have began in an unbearable manner, but your anger only serves to make it more so…

Who’s this benefitting? Not you that’s for sure! Nor those who are trying to help you pull yourself back up to start again. Speaking in anger is never wise. Things are said at we can no longer take back. That off the cuff sentence that might have seemed like a good idea to you at the time, can cut another so deep that there is no repairing that seed that you’ve planted. No matter how much you apologise, it doesn’t undo what has been done or said. I’m a massive believer that kind words cost nothing. This has come at a cost. I was once such a spiteful, angry, small minded individual. Why? Because I felt the world owed me something, terrible childhood, terrible teens, adulthood wasn’t shaping up to be much better, everything that could go wrong did go wrong, and the more it did, the angrier I became. Then what? I got sick, so sick that I was told I was dying. And then the anger became insatiable. I was furious. I couldn’t understand when I was going to get a break. Everything was doom and gloom and here I was literally being told I had nothing left to look forward to… 

I battled through this with the support of some amazing people, that I really don’t know how they tolerated me at this point in my life. I know I was unbearable. I didn’t deserve the understanding I was given from those who loved me enough to keep chipping away at my walls while I sat there just building them up twice as fast, afraid to let anyone in because I couldn’t take anymore pain…

I began to improve health wise after having my lung removed… but the anger was still very evident although not as much as when I was bed bound! Then less than a year on from this wondereous feat… I lost my best friend in the whole world, the one who stuck beside me no matter what. My boy’s dad, Mikey. He passed away in the middle of us having banter at his hospital bed. This was unexpected, and in a moment my whole world shattered. The anger rose within me as I felt this was the final straw and I literally couldn’t take anymore. At that point I wanted to die. I screamed at him to wake up, I got so angry that he had left me. I felt so afraid. That I literally couldn’t do this life on my own… the very thought of it set off a fear in me that to this day I have never experienced again nor would I wish to. But I do know if it wasn’t for my brother I wouldn’t be here today. I would’ve left that hospital and fired myself off the bridge or drove home and taken all my meds. More than anything in Sept 2015, I wanted to die. I didn’t want to face this world without my partner in crime.

We were due to be made homeless shortly after his burial, just before Christmas 2015. A routine appointment at the hospital led to me being brought in as an inpatient for the kids first Christmas without their dad and now their Mam couldn’t be there either. Without the support from an amazing group of parents at my boys school that year, Christmas wouldn’t have happened. They took care of Santa and let me focus on getting better, my friends cared for the boys as my family were in New Zealand. It was then I realised that no matter how angry I was, I wasn’t going to get home any faster. It wasn’t serving any purpose. It was time to literally snap the fuck out of it. I realised instead of spinning around on the hamster wheel, I could get proactive using the anger for purpose, and learning to change my situation through the right channels.

I became immersed in a new group of friends and activist comrades who have since very much become family. My life would not have changed without this amazing bunch of folks, and my own cop on! The anger now is driven towards changing a system that is unjust for everyone. But when I feel seething hatred for those who are pissing me off. I realise that instead of focusing energy on pointless arguments, it’s best to speak my mind, but in a respectful way. Make my point and then move on. I can’t change anything beyond that… 

So to all of you who are feeling an intense anger for pointless stuff, literally lads, get the feck over it because it’s only destroying yourself, your relationships with those who love you, it serves no purpose other than to keep you where you are. On that hamster wheel, with that chip on your shoulder, hating life…

Take it from me, someone who was that prick. Don’t be that person. Ooze positivity through positive thoughts. Instead of focusing on what is wrong, focus on what is going right and build on that. After all, Rome wasn’t built in a day. Nor are we, we are a constant work of progress, if you aren’t constantly changing and learning you are wasting a wonderful gift of life.

Be that spectacular being that you are meant to be, reach your full potential and realise that no matter how tough things are, you can still have a great time with some epic peeps. Start the healing, find out what is hurting you and attempt to fix it, to begin living a life that you deserve. Your happiness in in your own hands, nobody else’s… πŸ˜‰

Titch 

πŸ’™

Friends and Stonerology by Candlelight – Farewell Lung Partyο»Ώ

I was walking along the town last week with a friend when we bumped into another friend. A friend who has been kicking cancers ass. As we stopped to chat, I asked him how he was getting on with everything as I knew he had shaken things up, sticking to plant based diet and using cannabis oil. He proceeded to tell me that he had been given a call to go to hospital to have his left lung removed. As we chatted briefly about it, I wanted more than anything to be able to appease the anxiety I could see in his eyes which he was trying to divert by the smile on his face. He asked a few questions about what lung removal would be like, so I told him a little bit about my own experience, but reminded him that everyone was going to have advice, the best thing to do was to do what felt right for YOU! He explained that it all seemed very surreal still, it hadn’t properly sunk in. I could understand this, I remember when I was told that this was happening I went partially deaf to everything else. Even though the surgeon was still speaking, I didn’t really hear much else beyond “lung removal” and neither did my friend in his case! As we said our goodbyes, we embraced, squeezing each other tightly for longer than usual, the hug speaking more than I ever could. “I know you’re scared, but hang in there” I said and he squeezed tighter. I wanted more than anything to take the fear away… so I decided if I couldn’t do a whole lot, the least we could do was host a little get together to try and keep the minds occupied with a bit of banter!

So we decided to throw a party to celebrate… a Farewell Lung Party if you will! The FAREWELL LUNG! was made, a very informal invitation was sent and some food was put together both veggie and meat and of course the obligatory sweet treats although we tried to keep balance, with fruit and nuts to munch on in between, for a little get together among friends who are as good as family. In the midst of making a batch of guacamole the guests rocked in, we all awkwardly stood in the kitchen for a few moment, unsure of what to say to each other, passing pleasantries not wanting to say anything to ruin a good time. The host showed the guest into the living room and I made it my mission to keep keep piling food into the living room to make sure everyone was fed. Wine started to flow and of course the obligatory cannabis sesh kicked off among us circle of hippies πŸ˜‰ the conversation began to flow more freely between our small group, Bob Marley tunes filling the background.

I sat down to have my veggie curry next to our guest of honour and we had a frank chat about the experience of having your lung whacked out! It was a positive conversation, even with the seriousness of the topic we still found things to laugh about in between. Here he was this absolute legend keeping the good side out, we all agreed that the most important thing in this was to keep a positive mental attitude, I firmly believe that’s more than half the battle, then healthy food and plenty of rest! 

Darkness began to creep in as we all got lost in conversation in true hippie style as we had no electricity we lit up tea lights placing them around the house, the atmosphere was perfect to get lost in some of the greatest philosophical conversation I’ve had in a long time, as Sheeva the dog annihalated stick after stick, Arthur insisting she’d be shitting toothpicks for a week judging by splintered wood all over the floor! Wined out, we moved on to tea and cannabis, and the conversation deepened with relentless teasing between us. Arthur’s brother in the middle of teasing him, then inhaled a good mouthful of tea and began to splutter everywhere, we all laughed as we judged it karma, he looked at his brother cheekily and said you’re a fine one to be talking! The discussion ranged from, quantum physics, how we are all atoms working in conjunction with one another, politics, basic income, media influence, medicinal cannabis, what the future holds for our youth, the illuminati, one world order and Schroedinger’s Cat which completely blew my mind! This is where a cat, a flask of poison and a radioactive source is put into a box. When the monitor detects radioactive decay, the flask shatters poisoning the cat,  based on quantum mechanics the cat is classed as being both simultaneously alive and dead at the same time. It is only when the box is opened and viewed by someone that the cat appears either alive or dead but no both. Before viewing it is both. This was a complete mind fuck! We then moved onto how screwed America is and before we knew it we were moving into the wee hours of the morning but still deeply immersed in conversation. We all laughed so much, it was an absolutely amazing night amongst friends. We coined the phrase “stonerology”, promising to do it again soon…

At 3.30am we decided to call it a night and hit the road as out guest of honour had to be up bright and early to make his way to the hospital. Driving everyone home was quiet, there was a lot of food for thought, hugging each other tightly at each drop off we promised to see one another soon. Blessed to have such amazing people in our lives…

This morning I spun over at 6.30am to be with our warrior before he headed down for the op at 7.30. He was in good form, taking the piss out of himself. We had a little bit of  a serious conversation but mostly trying to keep it light. Arthur got gowned up and then allowed me the privilege of taking a photo to show the world his sexy pressure stockings! All set up on the trolley to head to theatre we gave each other a tight squeeze, holding on tightly, no words needed… as we both left the hug he cheekily grinned and said “I’ll see you on the other side either way!” “That you will my friend, I’ll be here to annoy you when you wake up!” and off he went, keeping a grave smile on his face, pure determination in those eyes as he headed up to completely kick cancers ass! An absolute hero…

All the good vibes in the world buddy, we’ll be seeing you soon, you got this πŸ’™ 

Totally rocking those stockings! πŸ˜‰

Titch ☺️

#FuckCancer

A gargantuan request – and little old me…

As I sat speaking to a very special friend of mine, my phone buzzed with a number I didn’t recognise… I picked up the phone to answer expecting that it was another person amid a housing crisis issue as the phone has been almost manic the past few weeks with requests. “Aaaawwwrrriiiight TITCHY!” came the booming greeting! In my weirdness I responded with the same accent “Awwwwriiight, WHO’S THIS?!” –

A friend I hadn’t heard from in a long time. An absolutely inspirational hero that has literally been through hell and back for the majority of their life time. I nearly burst I was so happy to hear from him. “Well kinda ringing for the sociable but kinda not at the same time Titch, I’m afraid I’m calling in that favour that we spoke of way back when, d’ya remember?” 

I didn’t, this was a friend that I had many long winded conversations about life with, someone who always guided me in the right direction when I was an anxious mess and unable to overcome the hurdles in my life, this favour could have been anything! Although I knew that I would grant it as this person means the world to me. “You know I’m not well girl, and you know how I hate to be lying around feeling sorry for myself… well the time has come. I’m checking out…”

As I stood there on the phone listening to him describe this with a jovial voice, I felt my knees slightly buckle. I wanted to shout “BUT I DONT WANT YOU TO GO!” Instead I found a feeble “oh fuck…” come out of my mouth as my heart raced and my body felt weak at the thought that my friend was telling me they were ready to die, but on their terms. More than that, they wanted me present, to have a cuppa, a chat, and sit with him until he did what he had to do… I felt sick, I could feel the tears pooling in my eyes. I felt like I wanted to hang up the phone and bounce it off the wall and start screaming about how unfair life was. But instead I listened and as he tried to cheer me up by filling me in on the trials and tribulations of hospital life that led him to checking himself out, out of complete frustration, I found myself laughing along with his anecdotes. I discovered the more I spoke to him that he wasn’t afraid that he was at peace with his decision… so I agreed to be his companion and company for the night until he did what he needed to do to find peace. He gave me a time to arrive and we ended the conversation. 

As I returned back to the living room of my friend, they stood up gave me a warm hug and I tried hard not to cry. I was telling myself that I’ll be fine… this was his choice not mine to make. I think my friend picked up on my need to cry because as we both sat on the couch he wrapped me up in his arms and held on tight telling me it would all be ok. With that, the floodgates opened and I sobbed for a bit, unsure as to whether or not this was something I could go through. But knowing full well that my conscience wouldn’t let me back out. I spoke to my friend about this over a cup of tea, they were supportive but wanted to make sure that I was ok with what was happening. After a lengthy conversation, I hit the road to make it to my friend for their final journey…

As I walked in the door, he was sitting in his usual spot, pink floyd blasting and the smell of cannabis and insense wafting through the air. “TIIIIITCHHHYYY! FUCKING GREAT TO SEE YOU GIRL YOU LOOK A MILLION YO-YOS! C’MERE N’ GIVE YOUR OLD PAL A HUG,” we embraced tightly and I started to cry again. “Hey c”mon now, you know what it’s like girl, we reach a point and that’s it, BOOM, DONE! You know I’m fine with it. I can’t let this monster take me it has to be on my terms…” as I went to turn the tunes down so we could talk, he boomed “NO IF I ONLY GET ONE MORE CHANCE TO ANNOY MY NEIGHBOURS THEN WE’LL LEAVE IT PUMPING, IF THEY ARENT HALOY WITH IT, LET THE, KNOCK, ITS NOT LIKE ITLL BE HAPPENING AGAIN!” 

“I’ll make the tea so” I said grinning, hitting 60 he was still very much that skin head youth from his hay-day, the rebel, the I-don’t-give-a-fuck-what-you-think-of-me, the fuck-the-establishment-anarchist, and even though he was full of bravado, his eyes told me that he was scared, even if he was too “macho” to give that away in the moment. 

As I was stirring in the honey into the cups I could hear Bohemian Rhapsody take over the speakers and I smiled, I knew what this meant. This meant he was expecting a sing-along… this was “our tune” as I went out to the living room I took my place behind the drum kit and he took up his bass and we blasted from the top of his lungs and the top of my one lung the tune with such vigour it lead to sufficient head banging for the chorus… “You’ve not lost it girl, now pick a fuckin’ tuuune and let’s have a little sess, clear the cobwebs and then we’ll get down to business! As I hooked up the iPad to the aux cable, he put his hand on my arm and I turned to look at him. “This means the world to me girl, you’re one in a fucking million, and d’ya know I’m fuckin’ petrified. When I get to the other side I’ll be looking out for you…” “You’d do the same for me bud, honestly, no thanks needed, I just want you to be happy…” 

“You’re a fuckin’ angel girl, now pick a decent track!” So I hit the playlist and chose Snow Patrol “This Isn’t Everything You Are…” I drummed, he bassed, we both sung, rolling into The Killers – Mr Brightside and finishing with Matchbox 20’s – 3AM… we gave it our all and I loved it, I could tell he was too. Getting lost in the music and not feeling anything other than that.

As we rounded up we went into his room and he went through the boxes of medicine he had been stockpiling for the occasion. He laid it all out on the bed and then he sat on the bed himself, put his head in his hands and cried, big heaving sobs, asking out loud “what did I fucking do in life to deserve this? I was a good dad, I was a good husband, I was a good worker, I helped anyone I could, why am I suffering…?” I sat beside him and held him tightly as he cried, and I cried and we both spoke frankly about life and death, what I meant and the importance of making sure he had done everything he wanted to do in this life before passing onto the next.

So, a decision was made. Not to take the medication. Not yet. Instead we sat there and I helped him form a “bucket list” of a  a few things he wished to do before he is gone. We did have a good laugh at a few of the,  I won’t repost them here for fear of retribution when he gets them done, but I will say watch this space they will give you a good giggle…

When we finished the list he said “one more tune” so we did, Johnny Cashs – Hurt, another cuppa or three and a lot of banter. As it came nearer the time to leave, he looked at me sincerely and thanked me for not leaving him alone in his decision. He said that the loneliness was what scared him the most. He told me that this wasn’t a decision not to do it but rather to live out the bucket list and then get “back to business” as he put it. As we embraced one last time I promised him I would always be there. And he retorted with a “don’t worry I’ll be calling on you again, jamming session before I go out, what better way to make it there?!” We both smiled at one another and hugged one more and then I left…

As I drove home I shook, and I cried, and I thanked Michael for giving me the opportunity to see my friend again before he went anywhere. But in that I became angry. Because I recognise the pressure that is put on a chronically ill person who is literally pushed to the brink of not being able to suffer anymore. I’ve been there. I’ve had other friends who’ve been there and have chosen this route. Not out of depression but out of a decision to want to take control of the situation and go on their terms. I wholly agree with this principle, your body, your life, your choice. And I know my decision will be the same in years to come when I’m given my “marching orders”, and I can only hope I’ll have a friend who would be willing to see me out ’til the end. Euthanasia should be made legal in this country. People should have a right to choice when it comes to prolonging the suffering or choosing to opt out. I became angry that this was not a choice my friend or any of my other friends I’ve lost over the years have had when they choose to go. If you don’t want the illness to take you, you should have every right to control those circumstances and not be prevented from doing so by some archaic religious beliefs that are legislated for… we never know what is going on in anyone’s life, or the suffering that they are experiencing on a daily basis. I’m glad my friend decided to hang on in there to get up to a bit of devilment but I know it’s only a matter of weeks before he will call on me again. I’m honoured in a way to think that I am the company he would choose. I think the law becoming involved in such a choice is abhorrent and cruel. 

Things need to change… people who are chronically ill are some of the most marginalised in our communities, I was the once too… kind words cost nothing. Make sure to check in from time to time. But most of all support the decisions of those making them for their own reasons. Who are we to judge a path we aren’t walking?

Lots of love,

Titch πŸ’™

Organ Donation Week… The Day I Decided Never To Do What I Was Told… Ever Again… #pulmonaryhypertensionawareness

I went to a routine outpatient appointment on a Monday a couple weeks ago in St Vincent’s Hospital in Dublin to see my Respiratory team… I was sure it would be simple enough a quick chat see how things were and I’d be home again in no time. “Anything changed since the last time we’ve seen you Claire?” “No, not really, just been having anxiety attacks out of nowhere, I feel fine and then all of a sudden my heart starts racing and I feel all panicky but I wouldn’t have been thinking about anything for it to happen.” “Ok can you explain what these attacks feel like and how often they’re occurring?” “They don’t happen every day really, the odd time I’ve had two or three in a day, sometimes I can get weeks apart without anything happening. If I run they seem to happen. If I walk up the stairs too fast. If I bend over to pick something up. But as I said it’s not always every day and sometimes I’m just sitting down watching a movie with the kids and my heart start racing but it doesn’t last any longer than a few seconds to a minute and then it’s gone so it’s not too bad really.” “I’m sorry Claire but we need to bring you in straight away, there’s a few tests we’d like to run to get to the bottom of this” “It’s anxiety, I’m fine.” “But it might not be anxiety, we need to be sure” 

So annoyed and telling them I needed to arrange childcare for my boys that I couldn’t come in straight away, I was told to present myself back for admission at 11am on Wednesday but had to return on Tuesday for outpatients appointment with my surgeon. 

Lots of phone calls to health nurse, social workers, school and friends later I made my way to Dublin on Wednesday courtesy of an epic friend. Straight away I was asked to hand over my list of medications of which I had none. Instead I showed them the syringe of cannabis oil that I used in place of my medicine. They were baffled and I got fired lots of questions about the oil but on physical examination and breathing tests they noted a marked improvement and noted I had not been taking pharma for lung disease for 16 months. A heart monitor was slapped on me for telemetry to monitor from downstairs and then I was told that it wasn’t possible to take the oil in the hospital and that I needed to take my prescribed drugs. I argued and explained my vomiting was not managed on the pharma. To prove the point I ceased the oils and allowed the nurse to administer one of the four anti-nausea drugs as I had been throwing up into a bowl beside my bed for a good half hour with the careers changing the bowl every ten minutes. My stomach was empty but my body kept trying to wretch and vomit. 15 seconds or so after administration of the IV drug my arm was red raw, swollen, my heart was racging and I was soaked in sweat and the dry wretching became worse with blood starting to come up as my stomach lining was tearing.

The phone rang and the nurse ran out, it was telemetry telling her my heart was going erratic on the monitor and she needed to check on me, she ran back in and slapped the blood pressure monitor on me. Oxygen 98, Heart Rate 155 at rest and blood pressure 153/115 it was too high. My heart seemed to be going so fast i thought it would just stop. The phone rang again, it was telemetry for he nurse to tell her my heart was off the charts and she needed to get an ECG done and take bloods for troponin levels as they thought I was going or in caridac arrest. The monitor was put on again and the heart was 172 BPM. At this stage the pain in my chest my bad. It wasn’t there before but now it felt like someone was standing on my heart my head was splitting worse than any migraine I ever had, I had to close my eyes the light was piercing. They made me lie flat on the bed while telemetry rang again to say the levels were unsafe. Finally the doctor arrived and I was given something to counteract the medicine and all levelled out after a few minutes. I felt fine again but asked not to be given the medicine again. I was assured that it normally doesn’t cause reactions like this but they could see clearly what had happened… but they couldn’t understand why.

I finally got my answer after batteries of tests… the consultant arrived at the bed, team in tow. “Hi Claire, how’re you feeling?” “Like I really want to go home” “I hear ya, but unfortunately a few things have pinged up this time and it’s important we have a chat about them.” “Ok, take a seat”

He sat next to me sand paused for a moment as if he was thinking what to at next. My stomach began to churn with nerves. “Ok, he said, firstly we’ve found a liiiiitle defect in your heart, you would’ve been born with it but it went undetected, it’s a tiny hole but don’t worry, that can be closed” feeling relief flooding through me I thought that’s not so bad! Then came the “BUT…” “We’ve noted through our various investigations that the pressure in your blood from your artery goi from your heart to your remaining lung is elevated.” “What does that mean? Is not all blood pressure the same around our bodies? Can I not sort that through diet I eat healthy anyway so maybe I should exercise more…?” They all began to share looks between each other and I began to feel a mixture of nervous and angry. “So what can I do to fix it?!” “You can’t Claire, we have two blood pressures one that we can measure through the blood pressure monitor on the arm and a second pressure that feeds blood from your heart to your lung. Normal pressures are below 25 in a healthy person, to go above that is an elevation and it means that the pressure is too high putting your heart under pressure” “I don’t understand, can this not be fixed?” “Claire your pressure is registering as 40. This is extremely dangerous in your case as you’ve only one lung. It’s called pulmonary hypertension. There are 4 stages on this, you are in the second stage of it. It will eventually mean that the blood will find it harder to be pumped through the artery, this means it will back up in our heart causing enlargement leading to heart failure.” “Ok…”I said feeling ill, “I don’t want to know all the details I want to know what my life expectancy is with this…” silence…

“I want to know…” part of me wanted to and part of me didn’t. And with that I got a look of pure empathy from my doctors and a gentle touch on the shoulder and told “five years expectancy would be typical of this.” 

I vomited everywhere. I started shaking violently. I got so angry I asked them to “stop fucking talking I can’t listen to this I can’t take in anything else I need you to leave” I got offered valium, diazepam something to relax me and I got more angry, I don’t want your damn medicine just leave me alone!” I didn’t hear anything after that, everyone was talking and all I could think about were my children… I asked them again to leave and they did. I cried and cried O much until I heaved with sobs, I literally didn’t know how to process this new information or who to even begin to talk to it about. So I turned to my friend Anne, who was in the bed next to me, stage 4 lung cancer cancer and tough as a nut. “Fuck them” she said “they don’t know you and what you’re capable of! I felt the same when they told me I had cancer, I didn’t hear anything after that, and believe me when I say I cried I roared. But you know what, you’re a fighter and you’ll have your cry and you’ll dust yourself off and you’ll prove them wrong, because you’ve got that in you. Look at the state of you last night after the medicine and all the panicking they were doing and you were there cool as a cucumber with “my chest is sore now” like it was a cut knee, she said you’ve very little fear girl, channel that into this now and god yeah, they’ve said five years, but I said twenty.”  We spoke for a couple of hours about everything in our life p, our illnesses and our fears for our loved ones left behind, the burdens we felt we were and what we hoped for and what we didn’t want to experience. For those few hours I felt like I could truly talk to someone who understood and didn’t care about me talking about it because she needed the same. And as tough as we both pretended to be, we let the masks slip for that time and I’ll be forever grateful to this fabulous lady for that. And her amazing daughter… Which reminds me I must give her a ring this evening to check in!

I returned to me bed and did the worst thing you can do… I googled it. Doctors weren’t lying! Life expectancy is short, no cure, progressive disease, symptoms, worsening of symptoms… and then I stopped, rang my bell and when the nurse came in asked to speak to my team. Two of them were up shortly after. I firmed every question I wanted answered at them. I gained all the knowledge I could from their understanding of this illness. We discussed medications that help slow it down but cannot cure it. We discussed the possibility of nutrition being able to manage it but most importantly I wanted to know if now I would get a transplant in the future. I was told that I don’t need it right now but I will in the future. How soon a year or three or five they didn’t know. Then they explained because I was born missing a right pulmonary artery they were unsure if they could connect a second lung. What I would eventually need is a double lung and heart. I am still waiting on an answer as to whether of not I can get that. Vincent’s think it may not be a possibility but they have also said that part of my care needs to be transferred now to the Mater Hospital as they have a specialised unit there. Once I see the doctors there I should get the answer to the transplant question…. until then, I just have to remain positive. After speaking with my team and discovering why PH can develop I began researching again. I came across an interesting Stanford University study where they managed to completely reverse pulmonary hypertension in rats in the later stages. This hasn’t yet moved onto humans. But it came down to replacing the unhealthy cells in the rats pulmonary artery with healthy cells from a rat that wasn’t ill. Within 24 PH effects were halved and within 72 completely reversed. So who knows maybe I’ll be as lucky as those rats someday!

But it was that day I decided that what I’ve been told, is a guideline, I’m on a quest to fix myself, so far I have discovered nitrates are key in this so lots of leafy greens and plant base. I’ve to be monitored every 6-8 weeks for pressure levels for the time being so I’m hoping that one day they’ll discover they’ve miraculously declined in pressure to the normal range…

The day I was handed a death sentence was the day I decided to abandon ship for a more positive route. I’ll leave no stone unturned in my mystical magical adventure to find a way to cure this. Not just for me but for countless others who ar struggling to balance life with this. I’m adamant I will see my children grow up. So I say five years…?

I call BULLSHIT, I’ll see you five and raise you fifteen…

I will make it to 50 at the very least, if nothing else, my stubbornness will drag me there πŸ˜‰

And to my bad breathing buddy Heather in the later stages of this, you kick ass girl, you’re so brave and have been such a calming influence. I owe you so much. Much love πŸ’™ you’ll get your transplant cuz we are gonna nag for this Organ Opt Out Donation Scheme 😁

Please leave a legacy and save lives. Sign up to be an Organ Donor, you’ve no idea how much joy you can bring to someone else’s life. Be a hero this Organ Donor Awareness Week, I’d be forever grateful to be given a second chance when my time comes if I am fit enough to withstand it.

Lotsa love,

Titch πŸ’™