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Life is a journey and not always a pleasant one!

popping my blog cherry!

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Hi my name is Tammy and this has been the worst year of my adult life so far.

So I thought what better way than to give myself some therapy and sort  things out in my head than to write a blog about the journey life has taken me on.

I don’t expect anyone will be interested in what I have to say this is more for me than  anyone else but you never know. I’m sure I’m not the only one who has had a shit time lately but my journey is not just mine as my husband and children have also been on this journey too, in fact it’s not even mine or my children’s story it’s really my husbands and we have been watchers but what affects one in a household affects all.

So I will be treating this pretty much as a diary, my perspective on what has happened. Going back in time to the beginning of events and going through to the present day and beyond.

If anyone out there does read this I hope you take one lesson from what I have been through and that is to live, love and cherish life as you never know when life might give you a wake up call with a massive slap round the face!!!

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Homeward bound

When I was a kid I didn’t really like food I ate because I was forced to but in my early 20’s I discovered that food had so much taste and texture and it was amazing. A love affair was born and with it a weight issue as I have battled with the scales ever since yoyoing up and down constantly which was made all the more difficult after having my girls. Watching my husband choke to death instantly made me dislike food all over again I don’t like eating now and fear what it can do to someone and how helpless it can render them. My husband has no such fear of course and was pretty fed up with having to be weaned back on to solids! I hated being in the room when he was eating and actively avoided it.

His first visit home was on a Friday afternoon and the hospital staff realising my issues around food made sure he was only allowed home for three hours in between hospital meals. It was amazing having him home but also strange as he wasn’t himself still, he was incredibly weak and looked so poorly having lost 2 1/2 stone since the accident. Also his hair was getting really long and unfortunately he isn’t blessed with good hair it kind of grows out in a big fuzz rather than down so I instantly got the clippers out and shaved it all off, just that small act made him look so much better. The girls clung to him for the whole time he was here and we all just sobbed at the situation we found ourselves in. He knew he would be coming home soon but I just couldn’t get my head around it when he still had so much recovery to do.

The following week we had a big meeting with his team of therapists, his consultant and the community care team leader to discuss further visits home and his discharge from hospital and what kind of home support would be needed to get him back to full strength. I was elated that things were moving in a positive direction but part of me wanted to shout at them that he wasn’t well enough how would I cope with everything!? It felt a bit like when I gave birth to our girls and a few hours later they would be sending us all home, I would leave feeling so overwhelmed by the responsibility of caring for someone who was totally reliant on me for everything. The thought of having my husband home for good left me overwhelmed with a feeling of responsibility.

The following weekend he was home again for the three hours and I was just beginning to feel comfortable with this until the bomb was dropped on me, it was during his physio session in the gym, the assistant physiotherapist asked whether he would be able to come home on the Thursday for dinner as a preparation for his weekend overnight stay at home, I heard myself say yes that it would be great but inside I was rigid with panic. He was on a soft mashable diet what on earth would I cook him? I was given a sheet on acceptable foods for him and foods that he definitely wasn’t allowed. I decided on mashed potatoes, fish, broccoli and cheese sauce all things that could be mashed up easily, he lived on that for quite a while at home! he also had to put up with me feeding him as I couldn’t bear the thought of him overfilling his mouth due to not being able to see what he was putting in it. I would also separate dinner times so that I could sit and watch the girls eat and then sit and feed my husband.

The dinner at home went smoothly so we were all set for him to come home on Friday afternoon and return back Monday morning ready for his discharge the following weekend. During our team meeting the previous week it was decided that he would receive an extended care package so he would get physio, speech and language and occupational therapy everyday.

His first weekend home was amazing but very tense I panicked every time he went upstairs so I would follow him around like an overprotective mother walking behind him when he went up and in front of him coming down poised to catch him if he fell and even though he had lost weight he was still much bigger and heavier than me especially as I had lost weight as well being now just 8 stone rather than the 9 I was when he went in to hospital. Having said that I was ready to face whatever challenges came my way with having him here full time no matter how scared I was and trust me I was petrified!

Making strides

Rehab was a horrible place made worse by the fact that the doors were locked at all times. It felt like my husband was being held prisoner. When I was informed that they were moving him to this ward I was told they were very relaxed about family members coming in a bit early and leaving a bit later at visiting times but this couldn’t have been further from the truth as we all queued up at the front door waiting to be let in (they would not unlock the door a second before 2pm) and at the end of our 2 hour slot we would all be informed to leave by a ringing bell. My husband who was now completely aware of what had happened to him and where he was hated being there so the strides he was making to get himself well enough to come home were huge. After a week on this ward he was walking to and from the gym everyday and had been allocated his own bathroom so he was also able to lose the catheter bag and go to the toilet.

It was a lovely warm summer so at visiting time I would get him into his wheelchair and take him outside for some much needed fresh air. He still couldn’t see much but he had odd moments of perfect vision mainly after he had been very emotional. No one could explain why this happened but it made me certain that it would only be a matter of time before he got his vision back properly.

It’s odd but I had it in my mind that he wouldn’t be home until he was completely back to normal and ready to step back into his life where he had left off like it would all have been a bad dream but now things could get back to normal. So when after a week and a half on the rehab ward they started talking about home visits my initial thought was of utter panic! What would I do? how could I cope? I would have two girls and a husband that needed my undivided attention! I didn’t feel strong enough I was so bruised by the whole episode but I knew for my husbands sanity that I needed to set aside my own feelings and get on with it. I knew I needed help as he was not strong enough to walk from the car to the house so I asked a neighbour if he would help and I made sure that my family would be here in case anything went wrong everything was in place for a smooth visit home. I felt sick with anxiety and couldn’t stop shaking. At the hospital we practised getting in and out of a car… Things like that you normally just take for granted but now every little thing seemed like a massive obstacle. The hospital arranged for me to have a wheelchair and a commode so my husband wouldn’t have to do too much walking he would come after lunch at the hospital and be back in time for dinner. I was officially petrified!!!

Turning corners 

My life revolved around the hospital, I think my car automatically knew the route. By this time my mum had gone back home and I was at home on my own with the girls, they were getting used to me crying all the time but I would constantly reassure them it was only because I missed daddy so much. I couldn’t really explain why I was so emotional I couldn’t tell them how damaged and traumatised I was by the whole experience and why when they ate I would watch them like a hawk waiting for any sign that they might choke or struggle, every bite they took I would be waiting for something bad to happen. Even when I ate I would chew and chew trying to make it as mushy as possible before I would swallow and all food was cut into tiny pieces for us all. My mum or dad would come over every afternoon so I could spend visiting times with my husband where we would spend our two hours together crying on each other. He had spent three weeks in ICU and three weeks on the stroke ward recovering from ICU. After a week on stroke ward they took him for the all important MRI scan and when I spoke to the consultant he said nothing bad had shown up, I was so relieved but he also said that he had to wait for the radiographers official report, I never heard anything more about it and I was too scared to ask not because I was scared to talk to the doctors but because I was too scared to know. My husband was also having to get regular chest xrays mainly because he kept pulling his feeding tube out and they were having to reinsert it, so much was happening at this time. We live on a small island off of the coast of England and our facilities are limited so there were lots of conversations about him being transferred to the mainland for more specialist care. I wasn’t too happy about this thought, it’s expensive to keep travelling on the ferry and what would I do with the girls?! But I wanted whatever was best for him. He was also having lots of physio to try and get his head upright and to be able to control his arms and legs properly and to ultimately get him walking again. He also had the speech and language therapist with him daily to get him swallowing properly which he hadn’t quite mastered yet. So when I went in one Sunday evening and he told me he had, had a bowl of porridge I was quite stunned, turning to the nurse I shook my head to say he hadn’t, I thought he had been hallucinating again, but she confirmed that one of the volunteers had indeed given him a bowl of porridge at breakfast but not to worry nothing bad had happened! she hadn’t read the big red notices outside his door and on the wall by his bed that he was nil by mouth. Panic gripped me, what if something bad happened overnight what if he ended up back in ICU? did they not understand what had happened to him in the first place? They could have killed him! I was so upset and angry. I smiled at the nurse through gritted teeth but the next morning I let my concerns known to his team of therapists. Even though that could have gone horribly wrong from that moment on he seemed to turn another corner he was allowed a pureed diet and was drinking through a straw which helped him to stop hallucinating which was good because it was a bit freaky every time he said there were people in his room when it was just me and him there, I half expected him to say ‘I see dead people’ I was so glad that he was becoming more of himself again. By the time he had been on the stroke ward for three weeks he was walking a bit and had control over his head and arms again so one Friday evening I got a call from the hospital to say he was being transferred to the general rehab ward. This was the next step to getting him home and that thought made me ecstatic and petrified all at the same time. 

Living in hope 

It’s new years eve 2017 and I’m sat here thinking over the year I’ve had. I have to say that it is the worst one I’ve ever experienced but looking back I find it hard to recall all of the details, the emotions are still raw but the small details of dates and conversations seem to have blurred at the edges. Once my husband came round from the sedation in ICU things just seemed strange I was living in a world where nothing was right anymore and the only way I could deal with things was to bury my head in the sand and pretend he was fine. The reality was that he was far from fine he was suffering from ICU delirium and was saying strange things and when I say saying he was more whispering and slurring strange things. I started taking our girls to see him after he was transferred to the stroke ward but they were so upset at seeing daddy in this way. He finished his antibiotics and slowly came off of all oxygen. He was nil by mouth and badly dehydrated from it so I would give him little sponge swabs in his mouth which he would bite on furiously trying to squeeze every drop of water from it but he wasn’t swallowing properly and I was petrified that he would bite the sponge off of the stick and attempt to swallow it. Still I was in a constant state of fear worrying all the time about how he would come back to me. I also gave his friends the all clear to visit him which they did most evenings. They were brilliant and helped to bring him back to me but still after two weeks of being on this ward he would continue to say strange things and was convinced I was having an affair. He would cry constantly and he was developing a terrible stammer but I could tell he was in there, I could tell he was frustrated at not being able to do anything he couldn’t walk, he couldn’t talk properly, he couldn’t eat or drink he could just lay there while me or the nurses attended to him. I ignored the fact that he couldn’t see anything either I pretended it was just the drugs and that it would be OK soon. While I was with him I was happy pretending that he would soon be back to normal but as soon as I left the hospital I was a mess I cried all the time and felt so angry. I was angry with the world and all that inhabit it. I wanted to scream and shout and rage at the top of my lungs at how unfair the world is. What did we ever do to deserve this? My husband is a good man he helps anyone that asks, he is well liked and known by so many people he shouldn’t be in this situation. I couldn’t get my head round any of it. While he was sedated it was easy to pretend that he would wake up and be fine but now he was awake it was a whole different story. I longed for our lives back and to be honest I still do. The more he came round the more I realised I couldn’t pretend anymore he was not able to see and that was devastating. He would look around trying to talk to people but his head would be turned in Completely the wrong direction he was hallucinating and would shout at the nurses. He was more and more frustrated by the day. No one warned me this could happen I was confused and scared all over again. How had he lost his vision this was something I just didn’t get. This is something I still just cannot accept and neither can he. But this is just the beginning of our journey and in truth I still have no idea where it will end but I live in hope that 2018 will be a much better year and that by this time next year we will have things figured out. Hope and positivity is all I ask for these days. 

Fear and dread in ICU

It’s amazing how quickly life can change, one minute you are moaning at your husband for not doing the washing up how you like it done or hanging the wet clothes on the dry clothes on laundry days and the next minute you are praying with every fibre of your being that you could be moaning at him again about trivial matters rather than living in this constant nightmare of not knowing if he will survive the day. Life had become a blur, I could barely function, my mum had moved in with me and the girls as I just couldn’t cope. My parents had become my children’s parents while I spent every moment of my time at my husbands bedside the only thing I could concentrate on was bringing him home. The day I told our girls that daddy was in hospital I also made them a promise that I would bring him home soon and I intended to keep that promise although I had no idea how I would make it happen so for me spending all my time with him was the only way I could think of to deliver on my promise.

Fear became ingrained in my heart, I was gripped by it and it was paralysing me, the fear of the unknown and the fear of the known it was the scariest and darkest of days for me watching my husband fighting for life, fighting for our family, fighting to stay with us and every day there seemed something new to fear. Starting with the mass swelling in his brain and then the pneumonia that came due to his choking, the doctors just kept coming at me with all this scary information and I was left by his bedside so helpless to do anything so for three weeks I watched and waited, I would whisper in his ear how much I loved him and needed him and how much the girls needed their daddy, I would read him the sports and sing him songs I would play music and cry listening to all of our favourite songs. The doctors told me that he may wake up and not be him anymore so I decided the only way to ensure that didn’t happen was to talk constantly and keep reminding him of our life together and how happy we were.

I have never really known what it is like to live in dread to feel panic rising up through me every second of every day and I have to admit I didn’t cope with it very well in fact if this was a test I was failing it miserably. I wanted and needed something to take it all away and in the end I had to get pills to help me through which they did for a while but I was living a life that had gone from good to bad in moments. I couldn’t eat or sleep I cried constantly which actually for anyone who knows me would say I did that anyway but these tears were different they weren’t me welling up for no apparent reason these tears represented a heart that was broken, I felt shaky and panicked I could barely sit still except when I was at my husbands bedside and then I had to be forced to have breaks otherwise I would sit there until the nurses moved me to the family room while they saw to my husband. I started doing odd little things to make myself feel better like in the car to and from the hospital I would flick through radio channels constantly trying to find a song my husband would like and at the hospital I would park in the same place everyday or at least in the same area of the carpark, on the days when I heard the right song or got the exact car parking space I would be convinced that I would get positive news, on the days when I couldn’t find a song or had to park somewhere else I would be devastated. looking back now I can see how irrational that behaviour was but rational thinking had no place in my life at that time in fact rationality had run for the nearest exit screaming like a lunatic.

ICU is the strangest of wards and becomes like a community of grieving families you see people at the lowest times of their lives watching their loved ones try to make it through each day, you start to swap the stories of what bought you to this place and get regular updates from each other as to how their journey is going. while my husband was there I saw families go through the devastation of losing their loved ones and other families go through the jubilation of seeing their loved ones get well enough to be moved out to a more normal ward. I had no way of knowing which kind of outcome our story would have but I prayed constantly for the latter. I started to know all of the nurses on the ward and the clerks and the cleaners and everyday when I arrived they would all say hi to me the familiarity was a great comfort. I also learnt how to decipher the bad news from the good, as to the untrained ear everything sounds bad but I learnt words like reasonable and potential were actually very good words to hear.

My husband in the meantime was being poked and prodded and pulled and stretched he went from doing ok to doing terrible to doing better his chest and the pneumonia became the biggest fight for him even under heavy sedation he would cough constantly in the end the doctors told me that they were going to prone him which meant turning him on his stomach which would help clear his chest but would not help the swelling on his brain. I didn’t know what to think or how to react to this so I just let them go about the business of saving him while I sat numb watching, hoping and praying things would be ok. When they turned him on his back again his face was so swollen that I could barely recognise my handsome husband he had pressure blisters on his face but his chest had improved and the doctors were satisfied so I decided it was worth it. After this my husband started to turn a corner he started to improve daily, his sedation started to be decreased and slowly and groggily he started to wake up.

When my husband arrived on ICU I was told that it would be a rollercoaster ride and they were not wrong I had never felt so many emotions all at once, been so low and so high all at the same time. I prayed every moment of every day and made promises to him and to God that if he could just get better then I would change my ways. I wanted my husband to wake up and just go back to being him again and I really thought that would happen I didn’t realise what kind of journey him waking up would take us on but I soon would…

 

 

Intensive times 

I left my husband in intensive care at about 2am on what was now 3rd July 2017. I didn’t want to leave him knowing he might not make it through the night but I was also aware that I had two children at home and my husbands voice rang in my head ‘Don’t worry about me just look after the girls’ I knew that’s what he would say to me if he was awake that’s what he always said whenever I fussed over him. So I got my dad to drive me to my car which was still at the hotel and then I drove home. It was like living in a dream everything just seemed so surreal. 

Walking in to my front room soon made reality come crashing down on me though. my mums face was staring up at me with concern and fear and confusion at what had happened (I think we all saw my husband as an unstoppable force). My dad made me a cup of tea not knowing what else to do or maybe I asked for one who knows, that night is a blur now but all I could hear was this screaming voice inside my head saying ‘I want my husband’ until I became aware that, that voice in my head was not in my head at all I was actually screaming and crying it out loud. My lovely mum and dad tried to calm me down, reminding me of the two sleeping beauties in the room above me but I couldn’t stop I was so scared and frightened and I wanted to run away or wake up or whatever you do when you don’t like what’s happening. I did eventually calm down and went upstairs to stare at my girls, our girls who we love and adore and who drive us to be better people, I watched them sleeping but only for a while I didn’t want to wake them not while I was in such a mess. I had blood all over me, my husbands blood and my make up was smeared down my face if they saw me like that they would be very scared and I didn’t want them to know what had happened I wanted to keep them safe and innocent and for them to be able to see their daddy the following evening, I was scared that they might not ever see him again. 

I remember being struck at the innocence of youth, the absolute trust you have that mummy and daddy will make everything better. I wanted to be a child again, I wanted someone to make this better for me, to protect me and tell me everything would be ok, I didn’t want to be this adult anymore, I wanted to be cradled in my mums arms and have my head soothed ‘sshhh it’s ok, everything will be ok’ but I knew that wouldn’t happen, I am the parent in this situation and I had to be strong for my girls and the responsibility of that weighed heavy on me, I have never been known for my strength so I knew I was going to have to dig deep. My husbands words constantly rang in my ears ‘you just have to get on with it Tam, its how you deal with things that makes you’ he was always saying stuff like that whenever I started moaning about anything. He has become the voice inside my head now. I told my parents that I wanted the morning to be normal for them until I knew what was happening and then after they had eaten dinner that night I would tell them what I could, until then life was to stay normal for them, daddy was at work and mummy had a busy day ahead.

I didn’t really sleep when I crawled into bed I was still crying I just wanted to wake up in the morning and it all just go away. My mum came in to check on me she was so worried and I was aware that she wanted to make it all better for me, being a parent never stops no matter how old the child. She laid down beside me and I was grateful for her being there, I’m not sure if either of us slept but we lay in silence until my alarm went off for the start of another week. What will this week bring though and the fear in my heart returned.

I don’t remember how I managed to stay normal that morning in fact I don’t think I managed it at all but my mum and dad took over for me making sure the girls got to school while I went to collect my mother in law to face whatever came next. I didn’t know what to expect or how to feel no one ever prepared me for this eventuality. 

When we got to the hospital we were told to sit in the family room as the doctor wanted to speak to us. I was living my own personal nightmare, how had life changed so dramatically like this?! The doctor as always said nothing positive my husband was awake but not responding in the way they would have liked but he hoped that seeing us would help him to come back round. We were escorted to his bed where he was gagging on and fighting with the oxygen mask he looked scared and confused like he was still choking, still stuck in that terrifying moment before the blackness takes over. After a while I managed to calm him down he started giving me kisses and tried to ask about the girls but nothing he tried to say made any sense, but he knew who I was he responded to me! the nurses told me he needed to rest as much as possible as his brain was swollen so I tried to make him sleep but he wouldn’t he was too busy fighting was happening to him. I told the nurses that he would fight every inch of the way as he is the most determined man I know and that was to become my mantra over the next 3 weeks while I watched my husband fight for his life.

Despite everything I left the hospital that afternoon knowing he would make it, I just knew in my heart that he wouldn’t leave me and the girls! So at about 4pm I left to tell our girls that daddy had, had a nasty accident. I left out most of the details telling them that daddy hurt his face and his throat while he was at work, it wasn’t a lie he did cut his cheek and his nose and his throat was bruised I just didn’t tell them the extent of the damage they would be frightened enough without knowing all of it and so we all sat on the settee hugging and crying on each other while my mum, dad and sister looked on.

By the time I got back to the hospital that evening they had decided to sedate my husband again to make his body relax so his brain could begin to heal. The nurse told me that before he went back under he was trying to say hello and ask about the children, she told me that she had worked in intensive care for a long time and had seen lots of things, she said you could never tell what was going to happen but in order to make it you needed determination and fight as the ones who fight normally  make it and she could tell he was a fighter and that he would make it through. I felt so grateful for her words they kept me going for weeks. I decided to block out all the negativity and stay focused on the fact that he would pull through no matter what and even though I stayed in a state of constant fear I kept hold of the fact that he wouldn’t be in there forever. I just had no idea what to expect when he did finally come round but that was to be much further down the line. 

Memorable dates

So my first official entry and I am thinking about my memorable dates like the date I met my husband and the date we got married, the dates of our daughters births and when we finally moved into our little house. I thought that as far as memorable dates go we were pretty much through them and could now just get on with the business of living our lives working and raising our children I didn’t foresee any more dates being memorable until they had grown up but boy was I wrong as 2nd July 2017 will forever be etched in my memory but not for happy reasons as this was the date that life gave me and my family a massive slap round the face.

It was a day like any other, a Sunday which meant family day and we were taking our girls horse riding it was gloriously sunny and hot and we melted in the heat waiting our turn but it was just lovely to be all together as this was the only day of the week that it happened, both me and my husband run our own business so we work a lot to keep our family comfortable we also worked a second job to see us through our quiet months so we cherished our family day.

Our second job was evening work where I worked behind a bar in a hotel and my husband would work as the night porter in the same place. He had been doing it for 4 years and as I had decided to scale my business back to spend more time at home we decided I should work there too, to supplement my income I went to that job kicking and screaming but I could see the sense in me doing it so with a deep breath I got on with it knowing it would only be for a few months.

That dreaded Sunday I left my family playing around while I went off to my evening job expecting to see my husband shortly after 11pm which as always I did.  Nothing out of the ordinary nothing special my mum was at home looking after our girls and I knew I would soon be there having a nice cup of tea before collapsing in bed but then something different happened, I left my husband sitting in the lounge, he was eating the roast dinner that the chef had left him, the dinner that he had every night he worked there and every night I told him not to eat as I could cook him dinner at home rather than him eating so late but he always told me he would eat there so as to save on our food bill. So while he was eating I decided to finish up my duties, with a quick glance over my shoulder I was off going about my business but no more than a minute later he was behind me patting his back. I knew something was terribly wrong and by the time the ambulance arrived 15 minutes later he was as good as dead. My husband was choking and no amount of back smacking or Heimlich manoeuvres was going to dislodge it, in fact I don’t know how they removed the slice of roast beef from my husbands throat (I was too busy being hysterical) but I do know it took brute force and determination. He Suffered a cardiac arrest and was rushed to hospital where they quickly took him to intensive care and made sure he was sedated to give him plenty of rest.

I have been with my husband for 10 years and I have come to depend on him for his strength and constant presence in my life, I love him with all of my heart he is my best friend and sometimes I feel he is my only friend and in that moment when I saw him choking my whole world collapsed, the bubble we had been living in was well and truly burst, I have never been so petrified and so alone. What would I tell our girls?, how would I live?, would he survive this? With so many questions the person who I would naturally turn to for comfort and solace was the one person who couldn’t give it I was utterly lost. The doctors gave me no assurances the only thing they would say is that he was alive for now.

I was escorted to intensive care and was again told nothing reassuring but to see him he looked like he was just having a nap nothing extraordinary unless you count all the machines and wires.

So yes the 2nd July 2017 is unfortunately a memorable date now and one that will replay again and again in my head forever lets hope the next memorable date will be a joyous one.