20

Dec

Hope Springs Eternal

“Hope smiles from the threshold of the year to come, whispering, ‘It will be happier.’”        – Alfred Lord Tennyson

The end of 2022 approaches. It’s been another gruelling year. For me its been a hard three years. It amazing how much a small amount of swelling in the wrong place in your body can cause you so many fucking problems. Five centimetres in my duodenum. That is all it took to drastically change my life.

I’m hesitant to even write the words.

Surgery seems to have been a resounding success.

I am just over 3 weeks post op and I feel like I’m practically back to normal. I mean bar round two of covid. Five vaccines and a round of antivirals seem to be doing the trick though.

It feels like tempting fate to say it, but it’s going so unbelievably well that I have to pinch myself to check I’m not dreaming.

I ate a fucking burger yesterday. A well-seasoned, moist, grilled to perfection, with cheese, bacon, crispy potato bits and harissa mayonnaise. Adorned with fresh lettuce and tangy slices of pickle, all nestled between a toasted brioche bun. Jesus I could have cried. That’s a lie, I did cry. It’s not the first time and it wont be the last. For the first time in a long time I have cried not because I am overcome with despair and hopelessness but because I am so overwhelmingly happy that my life finally seems to have turned that long awaited corner and I’ve left the valley of the shadow of death for now. I’m filled with cautious hope for my future. It’s almost scary going back to some kind of normality. It feels like I’ll be snapped back to that dark place at any moment but I have to trust and hope it won’t.

I wonder how much longer I could have sustained what I was going through. Every body breaks at some point right? I guess I’m just glad I never got to that point.

As hard and shit as the last three years have been, and as much as I’d like to forget them I can’t. They have taught me a lot about myself, the world and other people. It’s all experience be it good or bad.

 “But there was no need to be ashamed of tears, for tears bore witness that a man had the greatest of courage, the courage to suffer.”
― Viktor E. Frankl, Man’s Search for Meaning

Frankl talks about suffering and finding meaning within it. I try and find meaning in what I have been through so that I don’t view it as a total waste of my life. My experiences have granted me many things. I believe they have granted me gifts of empathy, resilience, compassion and understanding among others. I hope my experiences make me a better person. People would have paid therapists a good deal of money to have the same journeys of self-realisation that I have had. It certainly has made me look at life differently. I am very conscious of how precious life is and how important and fragile good health is and that really any of us could have that rug pulled out from under our feet at any moment. Lives are turned upside down on a daily basis. Hundreds of people across the country and the world will sit in a doctors office today and receive the news they didn’t want to hear or end up lying on a gurney in an accident and emergency department, upending everything they know and hold dear. Suddenly everything insignificant fades away into unimportance and every thing that really truly is meaningful becomes crystal clear.

“Health is a crown worn by all, that only the sick can see”

I love this quote as its so apt. Look at your hand. How well do all of those 27 bones, 27 joints, 34 muscles, over 100 ligaments and tendons, and many blood vessels and nerves all work so perfectly? If one of those were to go wrong, its suddenly very noticeable. How many times do you flex your fingers in a day? 100 times? 500? 1000? The better they work the less you notice them.  Very different story as soon as they go wrong though. So appreciate what you have, while you have it. Make the most of it. Make the most of life. Our lives are such a tiny flash in the pan and many of us will never make the most of them through fear of failure, fear of peoples and societies expectations of us. So many of us will settle for mediocrity in our lives, don’. Go out and live! Don’t end up in hospital, lying in a bed filled with regrets wishing and praying for a little more time to live your life over again. It doesn’t work like that. You have to make the most of it now.

There is a quote I fell in love with from Chief Tecumseh, a Shawnee Chief and Warrior.

“So live your life that the fear of death can never enter your heart. Trouble no one about their religion; respect others in their view, and demand that they respect yours. Love your life, perfect your life, beautify all things in your life. Seek to make your life long and its purpose in the service of your people.

Prepare a noble death song for the day when you go over the great divide. Always give a word or a sign of salute when meeting or passing a friend, even a stranger, when in a lonely place. Show respect to all people and grovel to none.

When you arise in the morning give thanks for the food and for the joy of living. If you see no reason for giving thanks, the fault lies only in yourself. Abuse no one and no thing, for abuse turns the wise ones to fools and robs the spirit of its vision.

When it comes your time to die, be not like those whose hearts are filled with the fear of death, so that when their time comes they weep and pray for a little more time to live their lives over again in a different way.

Sing your death song and die like a hero going home.”

If we all followed this advice, the world would be a far better place and we would be far better people. The take away from this though is that we should live full lives. Whatever that means for you. If that means a great career, or having a family and children or dedicating your life to a cause then go and do whatever it is that is going to give you meaning, purpose and happiness in your life.

We are about to start a new year. Imagine for a minute its 2350 on the 31/12/23 and your sat with your friends and think back on the year past and think “Man this has been one of the best years of my life so far” what would need to happen to make you feel like that? Write your goals down. Long term, medium and short term. Make a plan and just chip away at it. Make your life great. Of course there are things outside of your control, and to those things, I say fuck em. You can’t do anything about them so don’t worry about them. However, everything else is down to you. Effect positive change where you can. Be patient. Be empathetic. Be kind.

Just be a good person.

I hope you all have a wonderful Christmas and a lovely new year. Be thankful and pay it forward where and when you can. Raise a glass and imagine where you will be in a years’ time.

“Be the reason someone smiles. Be the reason someone feels loved and believes in the goodness in people.”
― Roy T. Bennett, The Light in the Heart

1 year ago Short URL 1 Comment

Uncategorized

///////

10

Dec

Memento Vivere

Well its been 5 days since I came home and two weeks since I had surgery. Both my surgical team and my gastro team decided to discharge me on Monday, that I was well enough to go home. Honestly I was shocked. In my head this surgery was going to mean at least two weeks in hospital and a very large midline incision similar to my last two surgeries. Instead I had a small two or three inch incision which went over the top of my old scar anyway. It’s been amazing and unexpected how quick the recovery process has been. I couldn’t have hoped for this to have gone this quickly.  Generally my recovery has gone pretty smoothly, in the grand scheme of things. I had a certain degree of ileus. This is when your digestive tract is still paralysed and asleep from being handled during surgery and possibly a combination of the anaesthetic, doctors aren’t entirely sure exactly what causes it. Most ileus resolves after twenty four hours to seventy two hours, however sometime you can get prolonged ileus which takes a number of days to resolve. I always seem to fall into the latter camp. Now I have had ileus to some degree every time I have had surgery, my second surgery being the worst, its lasted nearly 2 weeks and I was a day away from having to have a central line put in and be fed via total parenteral nutrition which is basically where you are fed directly into your bloodstream via drip. This time round it looked like me vomiting up copious amounts of bile on a couple of days. The working hypothesis was that some sections of my small bowel were asleep and some bits were awake. This was causing pain as the active parts pushed food through the inactive parts and essentially was causing a slow moving traffic jam in my bowel. My abdomen was very distended and I felt very bloated and uncomfortable. Then a knock on effect from that is all the bile and digestive juices that enter the beginning of the small bowel were backing up and being forced into the stomach through the new opening. Now you stomach is not the biggest fan of these juices, especially in large quantities and for prolonged periods of time. If they don’t leave of their own accord the stomach will eventually evict them which was what was happening to me. Luckily this really seems to have calmed down. I’ve luckily only been sick twice since leaving hospital which is about probably par for the course while my body gets used to its new rerouted anatomy and my guts fully wake up.

I have been eating three meals a day for a week now. I don’t remember the last time I was doing this. Its been so long since I have seen any semblance of normality with my eating habits. At the moment I am sticking to a very low residue diet so its all food that is generally easy to digest and softer, just till I am used to eating a bit more normally and have built my appetite up. Then I can start trying to eat more adventurous items. I found a chap on social media who had been in a similar situation to myself and had had similar surgery, in fact his was more extensive. He had 20cm or so of his small intestine removed as well as having a gastrojejunostomy. So he had that surgery done about four years ago, within a month he was eating steak. These days he is eating 3500kcal a day and training 6 days a week in the gym, prior to that he was like me, pretty much only managing a liquid diet. So clearly this can really work for some people. I’m cautiously optimistic in hoping this really will work and enable me to have some kind of normality again and that this surgery will become the footnote on the end of a shit three years.

It’s been a strange experience so far. Every time I eat there is a small voice in the back of my head going “When is the pain coming? When am I going to be sick?” but its yet to happen. I’m reluctant to let myself really believe that this has fixed the problem. Its like my brain trying to protect my ego from more disappointment. I remain hopeful, but cautiously so. Its going to take time to get used to eating somewhat normally again and building up an appetite and putting some weight. I can’t tell you how happy I am just to be eating the way I am. Hopefully for Christmas I might even manage a couple of pigs in blankets. I mean I threw caution to this wind this morning and had my first bacon sandwich in god knows how long, with seemingly no ill effects. It was like fucking mana from heaven. I’m not ready to go vegan yet, sorry guys.

I cant express my gratitude properly to my surgical team, my gastro team, the dieticians, nurses on the wards and everyone who helped looked after me, and all the other people who make the hospital run from domestics, porters, to guys that run round making sure the IT system works and the electrics work they all help the system work as one whole. Watching how hard all of the people work in the NHS is just astonishing. I always try and sincerely say thank you to staff I encounter. They are up to their elbows in piss, shit, blood, piss and it’s a pretty thankless task and they are not compensated fairly for what they do. Working 12 hour shifts, with shift patterns all over the place from what most of the nurses I spoke to told me. There aren’t enough of them so they are spready thinner than they would like to be. We really owe them a great deal more than they get. Clapping and slapping pots and pans together honestly doesn’t cut it. I really don’t think people understand quite how dire the situation is in the NHS unless you work in it or have been a patient in it and experienced the waits, lack of appointments, cancellations and other bits. I really hope that meaningful change is made within the NHS in how it operates and spends money and how we treat, pay, retain, recruit and support staff. In its current form, its unsustainable. It will fail at some point. Please remember this next time you go out to a ballot box and really vote for who you genuinely believe will make positive changes for us as a country and for institutions like our NHS. I know I wouldn’t be here without it. Any ways that’s enough from my political soap box.

I’m off to go and sit and watch the football with friends and enjoy my weekend. I did not expect this to be the case so soon after surgery. I’m so happy.

“Enjoy life. There’s plenty of time to be dead.”
― Hans Christian Andersen

1 year ago Short URL Comments

Crohn's disease

//////////

01

Dec

Ad Astra Per Aspera

Times, dates and days kind of loose meaning in a hospital, they are just numbers. You acclimatise to the rhythm and patterns of the hospital. The heartbeat of it, nurses handing over shifts at 8am and 8pm, doctors and surgeons doing their morning ward rounds anywhere between 8 and 12, physios and dieticians a bit later and the worst alarm clock in the world on this ward, is the phlebotomist waking you up at 7am to stick you with a needle and take your blood. At this hospital you have the addition of the dull rumble of the 2 thundering Pratt and Whitney engines of the London air ambulance lifting off or touching down on the roof of the adjoining building in all hours of daylight. Often lifting off just before, or at the very cusp of sunset to return to its base at RAF Northolt for the evening.

Time doesn’t mean much in here, what matters is has you improved from yesterday? Well a couple of days ago I woke up and vomited nearly a litre and half of bile, very quickly overflowing the bowl and coating the floor. If we were filming a reshoot of the exorcist the director would have called cut because special effects have gone overboard with the vomit and its not believable. Honestly I thought instead of a nurse I was going to get a young priest and an old priest just shouting “THE POWER OF CHRIST COMPELLS YOU!” For the last two days I haven’t woken up like that. So that’s an improvement.

I had been tube fed slowly overnight and that seems to have worked. The pump for the feed was very temperamental and kept stopping and starting, we found out later that is because the tube is basically blocked. So they tried me drinking my favourite meal replacement shakes again yesterday which seemed to have gone down ok, so I believe they may remove my tube today which would be lovely to be able to properly pick my nose again. Don’t judge me you all fucking do it! That and just to not have this fabulous piece of NHS face jewellery adorning me, as grateful as I am for it. It essentially has been keeping me alive so I can’t be too harsh on it.

I think I got very excited by the fact my incision was so small and it meant I was able to get up and about the day after surgery, my catheter was able to come out. Nobody enjoys those, if I just kink shamed you I’m not even sorry you should be ashamed. I have been up and about and pretty mobile with my surgeons parting words yesterday morning were “get up and walk today” so I’ve done multiple laps of the ward, shuffling along in my hospital issue red socks, dragging my rattling drip stand. I am however walking with a slight hunch because it feels like there is something tight in my incision preventing me from getting totally upright. I later found out that this is probably due to the two wound catheters I have that are sat in my tissue dispersing local anaesthetic at a constant rate. I am also due to loose these today but I feel like that will be a help not a hinderance. So with being up and about and being so chipper I think everyone has assumed it’s all gone well, and while yes the physical aspects of the surgery have gone well in themselves, I’m yet to try and eat anything substantial or solid and really we won’t know how successful this is really going to be until I start eating.

Man I am so optimistic this could work and give me my quality of life back, but I still have little voices that say “yeah but what if” and the most physical manifestation of this I guess has been having to see the pain team and them offering to see me long term should I need to. While I am very grateful for that offer, I kina thought the whole idea was I won’t need to see you guys, but I guess I have to acknowledge that it’s a very real possibility this might not work as well as expected. Only time will tell.

Well this morning the surgeons came round to see me. Full steam ahead. I’ve had half a bowl of porridge for breakfast and I’m having mash potatoes and gravy for lunch. Wound catheters are coming out. NG tube is highly likely coming out. Then words I did not expect to hear left my surgeons lips. “All goes well, I see no reason why we can’t send you home Saturday” I now feel like that child in the video asking if this is real life. Home within a week? This was not in my wildest dreams.  Suddenly time has a very new real meaning, I’ve still got to see gastro but I don’t see them saying anything drastic to keep me in, I think the only thing that would change that was if I started vomiting or couldn’t tolerate nutrition or some other drastic step backwards.

Porridge has gone down a treat. It was strange thought because it’s so ingrained into me now that eating is going to cause me issues for a minute I was like hrmm when does the pain or vomiting start? I had to stop and remind myself the whole fucking reason we are where we are is so that this hopefully doesn’t happen again. Honestly this hasn’t really sunk in yet, but I guess I’m also waiting to see the real proof in the pudding. I guess you can’t blame me for that after the last three years. This could be it. The end of all this shit and suffering. Getting my life back, shit I took for granted every day. I tell you one thing this illness has given me perspective in life that I probably wouldn’t have got otherwise without either some other type of traumatic experiences or years of age.

I look at life very differently to many people. I think when you have to look at your own mortality really hard it makes you change your values and thoughts about what is really important in life and what isn’t. Don’t sweat the small stuff man, it ain’t worth your time trust me. Go out and live your life now while you still have the chance to, you never know when you might not. No one wakes up planning to end up in A & E.

Go and make the most of it.

Carpe Diem

1 year ago Short URL Comments

Crohn's disease/surgery

/////////

27

Nov

D-Day + 1

I don’t understand what’s happening. Things are going good, for once.

I was fully expecting to be in agonising pain and have everything go wrong and terrible things to happen, but they haven’t.

I’m bewildered at the lack of negative outcomes thus far.

So let me explain what has happened thus far.

I came into the hospital at 0700 on Saturday. Now last month when I came in they said “oh you probably won’t go down till the early afternoon at best as they want to get the day cases in and out before you. So I assumed this would also be the same process this month. So in the morning I was admitted by the charge nurse and was seen by my surgeon and anaesthetist to review and revise my consent forms.

This is where things started to change. My surgeon asked to have a look at my abdomen which of course I obliged. She indicated that the incision  would only be approximately two to three inches in length. I had to double check she had meant that and she responded in the affirmative. That was a pleasant surprise. She did caveat that by saying that’s the best case scenario. Also she then said hopefully she won’t need to move my stoma. Hold up, this is news to me. This hasn’t been mentioned at all, last month or today, until now. My surgeon explained that due to my previous surgeries there is a good chance that adhesions had formed between my bowel, other bowel and other organs and my abdominal cavity. She would have to spend time carefully cutting through this scar tissue that joins the organs to be able to separate them and manipulate what she needed to safely. So with all the paperwork signed I was left alone with my thoughts in a side room.

I had been managing to healthily disassociate from my upcoming surgery for most of the time. There was no point in thinking and worrying about it, I couldn’t change the fact it needed to happen, I couldn’t really effect the outcome. Well that last bit is a lie. You can help sway the odds in your favour for better outcomes. I had given up smoking. If you are a smoker you massively decrease your bodies ability to carry oxygen and therefore heal and repair. Smoking is generally awful for your health and I could sit here and list loads of negative aspects and very little positives if any. Other than doing this, there’s not much you can do to effect any change, you just have to accept what’s happening.

So with regards to the surgery I was hoping for the best and preparing for the worst. Some of these things were very realistic expectations like a Ryle’s tube which is a tube that goes up your nose and down into your stomach to drain the contents of your stomach so you aren’t sick after surgery. Trust me I can attest to the fact you don’t want to be sick after you’ve had someone cut through your abdominal muscles and then staple them back together. Personally I find this way the best way for me to mentally prepare for something like this by acknowledging all the negative things that can happen, but actually you look at the statistical chances of some of them happening and they are miniscule. I had more chance of dying in the car on the way down to the hospital that morning that I did dying on the table in the operating theatre.

A sharp knock on the door interrupted my thoughts. It was a healthcare assistant who had come to take me down to theatre. Here we go, Standby. We walked the short walk to the lift the we went up or maybe down I don’t remember turned a corner and followed them into the room marked ‘Anaesthesia Room 2’ Here was the anaesthetists I had met earlier and one or two of his assistants. I climbed onto the bed in the middle of the room. On the side there were two large 100ml syringes in syringe drivers filled with milky looking fluid. I’d hazard a guess this was propofol, this was the shit Michael Jackson was using as a sleep aid. That’s like doing chemotherapy for your hair because your tired of cutting it. Propofol is lovingly referred to as ‘milk of amnesia’ because of its milky colour and amnesiac properties. The anaesthetist hooked me up to the two syringe drivers and set them off, I remarked about how crazy it is that he’s about to paralyse every muscle in my body, take over my breathing and wipe my memory. Then the lights went out like a warm fuzzy blanket was pulled over my head.

Now waking up is a hazy affair. I forget bits, remember bits, its very hazy thanks to the milk of amnesia. I’m going to go with the bits I definitely do remember. I woke up and started to give myself a vague once over, this is where things got weird. So I had my feeding NG that I thought they would have removed and I had no Ryle’s tube. I had no central or Picc line so that was good. I had a catheter which was to be expected. I looked under my gown and saw one small dressing only about two inches by three inches. There were a couple of cannulas in my abdomen that were slowly administering local anaesthetic to near the incision. My stoma was where it was before it hadn’t been moved. Now this can’t be right I thought, maybe they have forgotten to put things in and they are going to have to do it later. Also a tiny voice in my head was telling me that this was the best case scenario and it could just mean everything’s gone really well. I couldn’t believe it thought. I never get lucky let alone that lucky.

Well I should probably buy a lottery ticket because it didn’t finish there. At 5am today the nurse came and asked if I’d like to get up and get a wash, I thought fuck it, why not, I managed to sit up on my own in the bed with no assistance lets see how far we can push it. I sat up in bed and the nurse gave me a bowl of warm water and some wipes to clean myself with. Once I had finished doing that I managed to turn myself to the side and stand up. I was a bit wobbly and light headed but I’d had zero calorific intake for the last 24 hours and water had been limited as well. I managed to move across to the chair by my bed and sit in that where I could sip water as my stoma had been active and had output (which is key for knowing that you are not suffering with Ileus, where your guts are asleep and paralysed). I stayed in the chair for the next hour or so I was exhausted as I hadn’t managed much sleep so I moved back to the bed and tried to doze off again. It can be irritating with a cacophony of bleeping and whirring from the various infusion machines. I cant remember who it was but a doctor or surgeon came to see me and said that my catheter could be removed given I was mobile enough and was able to sip water.

So the NJ tube remains in as they are going to use that to feed me whilst the anastomosis between the small bowel and the stomach heal up a bit before I start to eat and pass food through it. This is the sensible  and safest option.

I’m just in disbelief that this has all gone well and not only has it gone well, it’s gone really well. I get so prepared for the worst outcomes I honestly rarely ever give the positive ones any thought. So these positive outcomes have been a breath of fresh air for me. Now there are still time for things to go wrong of course, like when I begin eating but just as I have been hopeful, I remain so. Tomorrow they are going to start feeding me with the NJ tube so that the feed avoids the anastomosis and allows it to heal a bit quicker and with no complications.

So tomorrow I hopefully can start feeding via NJ tube to get some calories in me which I desperately need right now. I am running on fumes, hopes and dreams. Then hopefully I will start on a strict low residue diet and gradually increase the quantity and how solid the food is until I am eating some semblance of a normal diet. Something that gave me some optimism about being able to eat normally again was a gentleman I came across on reddit called Austin, he had a small bowel resection and a gastrojejunostomy all in one go. You can see his old posts from years ago where he was clearly very skinny  and then had surgery and he is now eating totally normally. He eats enough to take in 3500kcal a day and is in the gym 6 days a week. He is absolutely shredded as well. I don’t know if I can be bothered with going to a gym, not at the moment anyhow but its nice to know that he has managed to do it. I have some slight concerns like dumping syndrome which experienced a little when feeding larger amounts down the NJ tube but there are ways to deal with that. Just got to wait and see what happens with it when I start eating.

Right I have fought the urge to fall asleep during the day. I am battling to keep my eyes open, It took me nearly 5 minutes just to write the previous sentence. So I think that’s me done for today. Nap timeeeee.

Ad astra per aspera

1 year ago Short URL 1 Comment

Crohn's disease/surgery

//////////

25

Nov

Fresh Starts

I toyed with the idea of starting a new blog, a fresh start, but honestly I couldn’t be bothered with the rigmarole of it and I still remember the log in for this, so that’s easy. It’s been a long time since I wrote anything on here and much has happened since 2017. I find myself wanting to communicate my thoughts randomly and social media feels very self-indulgent and I know at its heart it’s a toxic drain on society so maybe I should move away from it. I probably won’t but I can dream. This just feels like an online journal that I can word vomit onto and anyone can read it if they feel like it. This is going to be a rambling mess with no structure, hold on.

So in short the world seems to be slowly sleep walking into oblivion. Imagine the human race is a passenger on the sinking titanic. We have been offered a spot in a life boat since we started taking on water but we are too busy admiring the night sky to take it seriously. Then one of the ship’s officers is telling us the boat is sinking and we need to abandon ship but again, we have more pressing things to do like check Facebook, see how our bitcoin is doing and what’s on TV tonight. Right now it feels like we are ankle deep in the cold night water of the Atlantic and there are only a few lifeboats left, but we are too busy on our phones googling “Is my boat really sinking?” and reading articles about “Boats can’t sink and life jackets are a form of illuminati control”

 On a global scale we have had Covid, war in Ukraine, our economy has gone to shit, the climate is almost beyond repair in the UK our politicians are beyond a joke, but don’t worry “I’m A Celebrity” is back on. It feels like an old quote my grandad used to say “Don’t worry we haven’t got a plan, so nothing can go wrong” Its bleak times for many people globally. Sometimes it makes me quite nihilistic, wondering what the point in even trying at all is if as a species we seem quite content blindly marching towards our demise. Social media and mainstream media just drives more and more division, the polarisation of our society is coming to breaking point in many places, take the US currently for example or Iran, killing civilians because they don’t agree with wearing a headscarf because your imaginary friend says you must. Is it all even worth it?

The answer is I don’t know. What choice do we have but to carry on and make as positive an impact in life as we can.

We are sold a bit of a dream that we live in a democracy and a free country where we can achieve our dreams, earn loads of money, get a nice house and we will be listened to by our politicians. I mean other than voting in local and general elections, how much change can you and I exert on anything? Yes there is protesting and of course we love a petition that really objectively achieves nothing most of the time. But how much change can you or I really effect on society and how we are governed?

Now I understand I was not dealt the same cards as everyone else at the table. I’m watching friends develop their careers, buy houses, get married and start families. So evidently it is true for some people that you can carve out a good life for yourself with some hard work and self-discipline. I’m also aware I’m from a white working class background and many of my friends and parents you’d maybe put at middle class and we have had an advantage over many other people who haven’t had the same opportunities or help that we have had. Many people are not in this position and a lot of these things like property ownership are a pipedream, that really will never be attained. I’m 35 years old, still living in a two bedroom flat with my mum and I’ve been unable to work for the last 3 years because of my health. It’s been a shit show for the last 3 years. I had to leave a job and hopefully a career that I was just getting my teeth into, working in TV production. I would love to go back to it, but the longer I’ve been unwell and depending on what happens in the future will dictate if this is a possibility or not.

So ok, it’s been pretty doom and gloom up until this point. It’s not all bad though.

Being unwell for the last 3 years has been an interesting rollercoaster, especially coupled with covid. My mental health took a nose dive for a period of time, as I think anyone’s would have if they were put into the same situation that I was. I found myself pretty despondent with life, seeing no purpose in it, no light at the end of the tunnel so to speak. I don’t know what clicked one day, but I had decided I had enough. I realised that no one was coming to save me. I had to self-rescue.

It started with small things like making my bed, putting a wash on, walking to get a paper and just building on top of these small things. I had started to ingest a lot of stoicism from social media and decided to freefall into that rabbit hole reading Marcus Aurelius’ ‘Meditations’ and other bits from other stoics and philosophers. Reading a really good self-help book called ‘The Feeling Good Handbook’ by David Burns was invaluable to me. It was recommended to me by my psychologist and its worth its weight in gold. I would honestly recommend it to anyone and everyone even if your only mildly struggling or having trouble with any type of anxiety or depression.

Sadly in the UK our mental health system is in tatters. So many people are struggling to access the support they need and often its left to absolute crisis point where it’s even harder to walk someone back to good mental health. To use an analogy I saw the other day I feel like most people reach out when the barn is smouldering, but often don’t get the help till the barn is ablaze or even charred ruins. We need to do everything we can as individuals to help ourselves and solve our own problems. I am not naive enough to think that this can apply to everyone, there are people who absolutely will need to access professional help to get them to where they need because of the severity of their conditions but for those of us in that grey area who might just be struggling a little bit or even a lot, there is so much we can do to help ourselves in these situations. We have access to the internet and so much information. Do you know there’s more computing power on your smartphone than NASA had when they landed men on the moon? and your using it to look at cat videos.

If you are struggling with your mental health please reach out to someone, anyone, me. I would make an appointment with your GP as a first port of call. They can help to signpost you and refer you to the most appropriate help. You can also refer yourself to your local IAPT Service (Your GP can also do this). This stands for Improving Access To Psychological Therapies. This is basically the NHS’s kind of front line mental health service for people who may be having issues but aren’t acute enough to warrant urgent attention. If you google the name of your local authority and IAPT it will usually bring up your boroughs service. You can then usually refer yourself to the service online, they will then contact you to carry out an assessment of your needs and they will then come back to you with a recommendation for the most appropriate help which could be guided self-help or a course of CBT for example. In an emergency contact 999 or the Samaritans on 116 123 twenty four hours a day, 365 days a year, your local authority will also usually have a crisis line that is usually operated 24/7.

I had a thought the other day. I have been diagnosed with Crohn’s Disease for 17 years now, out of those 17 years you can effectively write off nearly 9 of them as me just existing and trying to stay alive, with generally a very poor quality of life during those times. That’s nearly a third of my life so far that I won’t get back. Now I could sit here and cry and shout that its unfair, ask why has it happened to me? but that’s not going to get me anywhere and I don’t have any more tears to cry for things that I can’t change. I read a book recently that I hadn’t previously heard of  and knew nothing about ‘Mans Search For Meaning’ by Viktor Frankl. Reading this book had such a profound and enlightening impact on me and I regret not having come across it sooner.

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
― Viktor E. Frankl, Man’s Search for Meaning

Viktor Frankl was a psychologist who during world war two was interned in various concentration camps. He lost most of his immediate family in the camps and witness the sheer horror in and inhumanity of the holocaust first hand. He drew on his experiences as a psychologist to help him and others survive. When he was liberated by allied troops he went on to found a school of psychology called Logotherapy. He wrote his book which can basically be split into two halves. The first being his experiences of the holocaust and the behaviours in himself and other prisoners that he observed, how people found the will to continue and survive and also how they resigned themselves to their fate and died. The second half is Logotherapy in a nutshell. He does a great job of explaining the base concepts so even a layman can understand. There were bits I had to look up but learning is always good.

Now I will probably butcher this but the basics of logotherapy is based on the premise that the primary motivational force of an individual is to find a meaning in life. I could flood this with great quotes from Frankl but I’m resisting the urge to. He argues that even in suffering we can find meaning and no matter what is taken from a man, we still have the choice about how to react to and feel about whatever happens to us. As Marcus Aurelias says “You have power over your mind – not outside events. Realize this, and you will find strength.”

Reading his book gave me many profound realizations about my own life. I cannot control what is happening to me right now, I can’t do anything about it, but I can decide on how I react to it. Tomorrow I am having surgery, I should actually have already had this a month ago but unfortunately my operation was cancelled because of a bad chesty cough I had and the anesthetist decided it would be safer to postpone it. Considering how I felt the few days after it was definitely the right call to make. I’m waiting on surgery to bypass a narrowing I have in my duodenum. To do that the surgeon is going to perform a gastrojejunostomy which is a procedure where a section of the small bowel, further down from the narrowing is pulled up towards the stomach and then is stitched to the stomach creating a new opening between the stomach and that section of bowel, allowing food to pass directly from the stomach into the small bowel further down from the narrowing ergo avoiding it.

Best case scenario this surgery will fix all my problems and I will be able to go back to eating somewhat normally again with no pain or vomiting. It will mean I am able to go back to work and have more of a social life than I do at the moment, hell maybe even travel. Worst case scenario, well we will worry about that if we get there. No point in fretting about it now. I’m cautiously optimistic about this surgery. All I can do is put my organs quite literally in the hands of a very capable surgeon and her team and hope for the best.

A couple of weeks or so ago I had a nasojejunal feeding tube fitted. This is a tube that goes up your nose, down your throat, through your stomach and in my case through the narrowing I have into the beginning of my small bowel. They put the tube using an endoscope which is a camera on a tube essentially. Now an last time they did this they could get the scope, which is about a centimeter or slightly more in diameter through the narrowing with no issue, this time it was too narrow for them to be able to get it through which shows its getting progressively worse and will probably totally close up. This probably explains the awful crippling pain I’m getting even when I am only on meal replacement shakes and other liquids. As much as I am dreading the surgery, it can’t come soon enough.

Anyway, I digress. Reading ‘Man’s Search for Meaning’ showed me that if a person in such dire circumstances such as living among the horrors of the concentration camps can still find meaning and purpose in their life then surely I have absolutely no reason as to why I cannot also find meaning and purpose on my own life in my own particular set of circumstances, even if they are far from ideal. “Man does not simply exist but always decides what his existence will be, what he will become the next moment. By the same token, every human being has the freedom to change at any instant.” V. Frankl Our meaning in life can change from day to day and moment to moment. Right now the meaning and purpose in my life is to get better and regain some semblance of health and normality. If and when I achieve that, my meaning in life will change. It’s a fluid concept in the way Frankl describes it. Your meaning in life right now may be to provide a good upbringing to your child, to care for a loved one with a  terminal illness, any number of things. Your meaning will change though. By changing what you believe to be your meaning in your life and controlling your narrative you can control how you react to your circumstances. You can’t control becoming sick, losing a loved one, being made redundant but you can control how you react to that. Finding meaning in my own suffering gives me a purpose. I’m suffering to be able to get better and then hopefully improve the other things in my life like being able to go back to work and earn a living. Focus on the short term and the small goals and the larger ones will materialise naturally. I’ve found a lot of comfort and wisdom in books I have read recently, they have certainly opened up my mind to new ways of thinking and the change the way I look at and think about some things, hopefully in a more positive way.

Its amazing what we can do with the power of thought alone. Look at the placebo effect or psychosomatic illness. We are capable of convincing our body crazy things sometimes and I have learnt in the last 15 or so years of my life just how important having a positive mindset is. Don’t get me wrong, sometimes its very hard to stay positive and you see a lot of toxic positivity these days where you should be happy and ok all the time. You have to remember sometimes its ok not to be ok. It’s perfectly normal to be sad when a love one dies, or a relationship fails. It’s still normal to experience negative emotions they make us who we are and make all the positive ones so much more worthwhile. Look if your sitting in bed sobbing for most of the day and drinking Jack Daniels for breakfast, then yes that’s when I’d say you have an issue. However if you can remain positive and try and find something good in even the most negative situations you will help yourself to be more mentally resilient and not succumb to bouts of elongated low mood which can end up leading down the path of depression.

Finally after a month of waiting I have my delayed surgery tomorrow. I really hope this helps me. I’m aware things could go wrong or there could be complications but it could also go swimmingly well and fix everything. Time will tell I guess.

See you on the other side.

1 year ago Short URL 3 Comments

Crohn's disease/surgery

///////////////

04

Jan

Another revolution around the sun

So, we are done for another year and what a bitch of a year it’s been for the world. Celebrities are battening down the hatches and hiding in bomb shelters for fear of being taken by the reaper who appears to be on a form of celebrity bounty hunt. I for one think that an armed to the teeth SAS regiment, with drones for overwatch should be taking Ian McKellen, Patrick Stuart and David Attenborough to an undisclosed location, wrapping them in bubble wrap, surrounded by a mile-wide minefield to protect them during 2017.

This year for me has had its ups and downs. I can’t grumble as this time last year I was still recovering from having my entire large intestine removed, trust me that will knock the wind out of you.  Now I was previously banging on about how life will not hand you breaks. Shortly after I posted that blog I managed to go and land myself a much better new job. I now work for a charity, it’s different from what I have done before but in good ways. You aren’t just chasing profit and revenue. Especially to the point whereby you put earning money above risk to people, and ignoring legislature as I have previously seen some companies do in the past. That’s not my cup of tea. This is actually about putting the people you are supporting first, which is how it should be. So it would appear someone upstairs may have be listening and actually cut me a break. I might be able to afford to move out this year at some point. There are many times when I was ready to give up in life but you just have to keep cracking on and work towards something better and occasionally with a tiny sprinkle of fairy dust, luck and a black magic spell I paid £200 for a shaman to perform, its might just work out.

I also ticked something off my bucket list recently. I was granted my first shotgun licence and purchased myself a brand new Browning Sporter, over and under shotgun. “Why do you want a gun?” I hear you cry, because if used responsibly it’s as fun as shit. It’s something I have always wanted to do and it’s a good laugh. It also bodes well should there ever be a zombie apocalypse. By the way, should the zombie apocalypse happen, gather your supplies, meet at my house where we will make our way to the coast, hijack a boat and go from there. At the moment I am honing my skills on clays, and to be honest I am happy with that. I would maybe try one proper shoot for pheasant or something but only if I was confident I could hit what I was aiming at and it would be eaten or used after which I am sure most are. I went today and hit thirty six out of fifty. Destroyed the first three stands with ten out of ten, eight out of ten and then ten out of ten. “I want to see you hit one on this one.” says the gent escorting me round. Well that sounds ominous. “This is the demoraliser then?” Fucking one out of ten and only because I skimmed it. Quickly brings you back down to earth and makes you realise how far you have to go. Practice makes perfect.

20170104_131907

 

Christmas was the usual affair of meat and alcohol although it was somewhat overshadowed but the fact I had a wisdom tooth removed the day before Christmas Eve. Why on earth I thought that would be a good idea was beyond me but it needed to come out it was agony. Now, nobody told me that if your tooth is really impacted, as mine was, THEY CUT IT IN HALF with a drill first. That was the least fun thing I did all Christmas. Once they have cut it in half, the doctor took out what looks like a mini pry bar “You may hear some crunching now” It sounded like someone was stomping on gravel in my head. Once the first half was out the remainder was dragged out with a pair of long nose pliers. That was that, done. Explicit orders not to drink or smoke for the first 48 hours or you could end up with something called dry socket, which sounds like an out of business hooker, but I am told it is actually a painful condition due to not following the doctor’s rules. Here I am now, six stiches later with next to no pain. Although, I quickly learnt the hard way, for the love of all that is holy do not put cold water anywhere near that hole or it will reduce you to a crying five-year-old girl.

So now is the time of year where we all lie to ourselves and tell everyone what better people we are going to be, that we are going to eat healthily and exercise and not kill hookers but we all know its lies and we will keep doing the same crap we do every year. What I like to do is set my expectations for the year really low then anything that goes well is a bonus.

However, after saying all that I popped down to the Royal Free to see my cardiologist today for my follow up after all the tests I had done. I had recently had a letter that basically said all the tests look good and my heart function, which was originally what they were concerned was quite bad, it turns out to be at a normal good level. So, I originally had an echocardiogram which said that my heart function looked quite impaired and the top two chambers were only working at as little as fifty five percent. This would explain why I got out of breath when I was thinking about walking. They started me on a couple of drugs, sadly not the fun kind, and then performed a cardiac MRI a bit further down the line. Now the results of this showed that my function in these chambers was normal so in theory the drugs may have worked fantastically well and allowed the function to return to a normal level. All the other tests they performed showed nothing untoward or out of the ordinary. Generally speaking, they are quite happy although they don’t have a definitive reason as to why my heart is beating so fast so have been given the diagnosis of inappropriate ventricular tachycardia aka your hearts beating fast and we don’t know why. On the bright side, I have been told I am allowed to go back to the gym. I’m going to look at getting myself a personal trainer because it’s going to be hard enough to start from scratch with a level of zero fitness. I will be one of those blokes in the gym panting and sweating a great deal, not moving far from one of the defibrillators.

New year, new start and all that jazz I guess then. No excuses now. I might just slowly document this over social media to shame myself into action. For those of you who know what Reddit is, I subscribed to r/discipline where I was reading some bits and I came across this which struck a chord with me.

“Don’t rely on motivation for anything. It is fleeting and unreliable. Discipline, however, is unyielding. Force yourself to follow through. Things are going to come up in life that get in the way of your goals but that’s no reason to let them stop you completely.

Can’t do a whole run? Do half of one. Don’t have time to go to the gym to lift? Do pushups. Any action is better than inaction. Don’t like the food you need to eat to meet your goals? Tough shit. A little discomfort is worth the change, and at the end of it you’ll have a mind as tough as your body.”

Time to put words into actions I guess.

7 years ago Short URL Comments

Uncategorized

25

Aug

Playing The Cards You’re Dealt

Life does not hand you breaks. Life does not give you what you think you are owed. It will get better is something I get told a lot. Often it either doesn’t, or it does but not to the extent you need it to. I always have had the outlook that you shouldn’t worry because there is always someone worse off than you, 99% of the time that is true. The problem is everyone’s problems are relative to them. You could be a homeless man with a booze problem, could be worse, you could be an ISIS captive in Syria. Millionaire on a yacht has just lost five hundred thousand pounds in a casino, could be worse, you could be normal and not have a yacht or have five hundred thousand pounds to blow on roulette. Your problems are relative to you and your life, and they will always seem shit to you.

Now a lot of the time these problems can be solved, sometimes they can’t and you have to deal with it. The worst ones are the things that really shouldn’t be a problem, and should get solved, but for one reason or another they don’t. I’m 28 still living at home, not earning anywhere near as much as I would like, can’t afford to move out, live month to month, can’t afford to save, will probably never ever be able to afford to actually buy a house, stressed out at work, I shit in a bag for the rest of my life, just been told 2 chambers in my heart are only working at anywhere between fifty-five and sixty-five percent and will need meds for the rest of my life. You think life would cut you a break at some point. It doesn’t. You have to make your own breaks. However, this seems harder than trying to crack a safe, in the dark with a rubber hammer.

I don’t want things handed on a plate to me but I wouldn’t mind being able to get a foot in the door at least. At 28 I’m watching my friends get married, buy property, start families, getting ahead in careers and generally making lives for themselves. I’m still lagging behind living like a 19-year-old in their first job. I got accepted into a job I would have love to have made a career out of in the ambulance service. The week before I was due to start I ended up in A&E in the Royal London Hospital and ended up staying there for 2 months, so that knocked that on the head for the time being. There was no real job security as well because due to the amount of time I had off in the past 2 years before that meant that if I had 1 day off in my first year with them they could have taken the job off me. I’m now in a job that I enjoy with fantastic people, but at times like any other line of work it gets stressful and sometimes demoralising. To compound matters, we have just have had the awful premature loss of an integral, well loved, hilarious member of staff who passed away. She was remembered in an amazing and individual fashion whereby, as per her wishes, we all turned up to her funeral in our pyjamas. Jesus Christ did we get some funny looks. She wouldn’t have had it any other way. In the short time I knew this lady you could see that she had an infectious wicked sense of humour and always had a smile on her face regardless of the intense battles she was fighting every day. She put up a fight to the end, a fight she ultimately lost but none the less a fight any battle hardened soldier would have won medals for.

Recently we also found out we are now due to lose another key member of our team due to changing circumstances in her personal life, our mother hen, the lady that manages to control 3 feral undomesticated men on a daily basis whilst managing a branch, the lady that is always there to talk to when we would rather take to an elevated position with a high powered rifle, our branch manager Tracy. It will be with a heavy heart that we see her go but now that she’s going to be a lady of leisure enjoying the sun and her grandchildren, we can’t argue with that. I’d probably leave as well. I’m debating a sex change just for the lady of leisure title.

Life has its ups and down but it’s how you deal with them and what you make of it. Sure some days you can’t face getting out of bed and you’re strongly debating on whether it’s worth wrapping your car around a lamppost on the way into work just enough for a couple off weeks of work rather than actually turn up. Then you have great days where you feel really productive, get loads done, have a laugh and can’t wait for tomorrow. You have to take the rough with the smooth. This is the same with any job, and life in general. To quote Alexandra Dumas,

“Life is a storm, my young friend. You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes.”

Most people you encounter on a daily basis are fighting battles. Big or small, long term or short term, everyone is fighting. I want to do everything I can to move myself as far forward with my life in the time I have. At the moment I’m fighting to better my life but limited by my dysfunctional and constantly misbehaving body in the form of a pair of angry siblings. Senior Dickhead le Digestive system, which to be fair seems to be behaving for once and of course how could we forget my crappy cardiac friend, my heart, being too hyperactive and then being rubbish and only working at half pace. Still you have to crack on and make the best of things, it’s not the end of the world.

We had the Olympics recently, two of the swimmers had Crohn’s. Now a lot of articles read “Olympic athletes overcome/beat their Crohn’s disease” ( https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/ ) which is fantastic but slightly misleading. It gives the impression this illness can be beaten, which sadly is not the case. It can’t always be beaten. Yeah some people will suffer with next to no symptoms, or only mild ones. However, there are people that can’t beat this illness no matter how hard they try, no matter how hard they fight. There have been a couple of articles recently about people that fell like they take flak for allegedly faking or exaggerating their illness because they also go out and have fun and live their lives. I do it. There used to be a few years of my life where I couldn’t leave the house, then when I got to a certain level I could go on a night out, as long as I didn’t eat for 24 hours before hand and even then on the night out I’d have to go and use dodgy bogs a few times a night and often ran the risk of an unauthorised bombing run for want of a better word. Then the day after I would spend firmly attached to the bog with my laptop and a packet of wet wipes from the freezer but it was a price I was happy to pay so that I didn’t miss out on the last year of university.Photogrid hidden battle.jpg

We might not look like it, but we are all fighting battles. Don’t always be quick to judge if you see someone who looks perfectly abled walking out of a disabled toilet or if you see someone you know with a chronic condition or illness out having fun. You don’t always know the outer half of the coin. Untill next time I will continue to crack on with my plans of world domination. I’m just taking the scenic route.

Just remember, you’re never out of the fight.

Till the next instalment of hate, stay safe.

 

 

8 years ago Short URL 3 Comments

Crohn's disease/Hatred/Uncategorized

12

Jul

It’s time to book into Dignitas

What world we live in today. Half of my friends are getting married and having kids, the other half are running around catching Pokemon. We have a new unelected Prime Minister who I wouldn’t trust to preside over a toddler’s birthday party let alone run a country. Bad apples in the American police are showing that they have a total lack of discipline potentially causing a race war, only to be compounded by mentally unstable polar opposites who think the best idea is to then go out and shoot other police officers.

Our world seems to currently be on a severe downward spiral to chaos. We have Daesh/ISIS running around the middle east coming up with the most imaginative ways to execute men women and children, North Korea is basically one large concentration camp, the EU is having a mid-life crisis with an angry teenage Britain that wants to move out, America is potentially about to elect a retarded version of Hitler, they are also about 2 gunfights away from a full blown race war and as usual its pissing it down in summer time. I wonder how we would act as a planet if our average life expectancy was 1000 years and we were being attacked by aliens. We would be far more worried about our long term problems and working together instead of this constant narrative of looking after your own isolationism.

One of my big gripes is the machine gun wielding, black clad psychopaths with imaginary friends running around the middle east executing anyone that doesn’t toe their line. I have read and seen horrendous things. Children being crucified, men being blown up in various ways, burning people alive, drowning human beings in a cage with cameras attached to it so they catch every painful, panic filled, terrifying last seconds of those men’s lives, crushing people’s heads with rocks, stoning’s, being thrown off buildings, decapitations, the list goes on. Now one could argue that due to our involvement in the Iraq war, you know that one that the Chilcott inquiry just said essentially we didn’t need to have? We are partly responsible for this, we caused a massive power vacuum and we had no long term plan with what to do once we had gone in and remove Saddam and his government.  So now ISIS are running around trying to create their own little backwards country. Please explain why on earth we are letting this carry on? I know it’s not only this issue, we could pick any horrendous violation of human rights like North Korea, certain places within Africa, Mexican drug cartels, the list goes on.

Yet most of the world stands idly by. Not too fussed because it doesn’t directly affect them. After discovering the concentration camps we said never again will this happen. Erm guys, it is. It is happening, in various formats around the world.

Why as a planet do we allow these people and groups to carry on in such a manner. I’d like to think if Theresa May forgot to take her pills and started publicly executing anti-fox hunters and supporters of gay marriage at least one country would go hold on a minute, we should probably give those poor sods a hand. Yes, we have sent some drones, planes and special forces over to support local opposition in Syria and Iraq and I know it’s not a clear cut situation but do we, as a responsible country, stand up and say we won’t stand for that and go and put boots on the ground. I am well aware that one outcome of this would be some loss of British lives and the argument will be its not our problem, but it is, we helped created it and the fact that as human beings we should help those in need.

The other day I was standing at the entrance to Barnet Hospital when I heard a commotion about 50 meters away in the car park. A lady began to shout for someone to get security. I could see one man leaning into a car and screaming and most people just standing and watching. So I walked across to find a man in his 50’s screaming and shouting at an elderly lady sat in her car. What had transpired was the man was waiting to reverse into this disabled parking spot and the elderly lady had failed to see him and pulled into the space. So ok the British thing to do would be to tut, mutter wanker under your breath then drive around for twenty minutes looking for another parking space. Hell no, this bloke went full Gordon Ramsey on this poor old dear and managed to fire of a string of expletives longer than the Geneva convention at her and when the old lady had dare try to show her disabled parking badge to him he snatched it off her then viciously threw it back. So at this point I and a few other people shouted at him to calm the fuck down with a bit more gusto and he turned round and realised myself and a stocky nurse were stood behind him looking none too pleased and that he had gathered the attention of most of the car park. Then it begins, oh but I’ve got this wrong with me, my wife’s disabled I’m stressed. Yeah mate it’s a hospital, it’s not like people come here for a nice day out, I shit in a bag, get over it. Most people here have something wrong with them. I informed the fella that regardless of whether the older lady had nicked his space or not, his reaction was totally unjustified and uncalled for. Luckily security arrived and escorted the bloke away leaving the older lady in tears being comforted by hospital staff. The problem was there was at least 20 people much closer than me standing by doing nothing but watch. The nurse that got involved walked about as far as I did to get involved. Yes, it’s a smaller scale but we as people seem to be quite happy just to stand by while others harmed in some way. I know I’m drawing a comparison between two drastically different situations and I’m not suggesting we set up SAS teams in hospital car park bushes to call in apaches for car park road rage.

We are a funny planet. We aren’t perfect but its home. So for the time being we better make the most of it, look after it and look after each other. We need to stop killing people because their views are different from ours. However, that being said, if there are people that refuse to give that up and are adamant they will kill people that don’t agree with them, then let’s wipe them off the earth because in the long run they will only be a negative impact on humanity. Everyone should have freedom of choice, worship, expression, speech, love and every other choice a human should have.

Ah well. My biggest problem this week is I’ve spent most of my wages and we are in a long month. I’ve got about £20 to get me through the next 3 weeks. Good times.

Until the next instalment of hate, don’t assault old ladies in car parks or join ISIS.

8 years ago Short URL Comments

Hatred

29

Jun

Are you still here?

I keep meaning to pick this blog back up but then do nothing about it. This is a combination of my chronic procrastination and also the fact that now I don’t have any problems with my ileostomy I lead a pretty full and borderline normal life. This will be the second time I attempt to make a serious effort to pick this back up regularly. I enjoy writing and if I could it would be what I would do for a career, alas this is unlikely and it will remain my cathartic megaphone to the masses or at least the 12 people that might read this by accident.

So there have been may a development in my life since the last time I wrote a proper bit on this. This is basically an elongated Facebook status. Since my last surgery life has been pretty cushty. So I am now working for a local homecare company managing their complex needs desk initially. This involved the day to day running of this desk which provides care to people with serious physical disabilities, mental health issues and long term care such as people that need live in care. However, my job role has recently changed to solely focusing on the marketing of the business for my desk and the standard elderly short calls. It’s a rewarding job and I enjoy it a lot, not to blow my own trumpet but I’m not bad at it either. The people I work with are fantastic and have found a bunch of great new mates.

It’s rewarding to see your making a difference to people’s lives young and old. It does make you question things about our society such as how we care for our elderly who, at the end of the day, are people’s mothers, fathers, brothers and sisters and in some cases a sad look at how little a family want to be involved in their care. I’m well aware there is always family history but as a society elderly care has become a very clinical thing. When you get old you go into a care home and at some point you will die there, in a hospital or a hospice. Up until the 80’s up to 80% of people died in the comfort of their home with their family looking after them. At what point did we become so above caring for our loved ones who raised us and wiped our arses and nursed us when we were sick as children. We too easily palm our loved ones off onto the care of others. Out of sight, out of mind.

So my health has been pretty good. I had surgery nearly 3 years to the day after my first to deal with a very large angry abscess in my abdomen that refused to respond to antibiotics. As a result of this they removed all of my large intestine and gave me an ileostomy which has been so much more convenient that a colostomy. I really have been able to lead a practically normally life with this without having to worry about changing bags having leaks. Yes, you have the odd problem now and then but generally it’s pretty well behaved. However, at the end of my last hospital stay the NHS finally decided they wanted to investigate my high resting heart rate, to the point they weren’t going to discharge me after my surgeon said I could go home. I promptly told them to do one and I would be discharging myself if they didn’t let me do the test as an outpatient. My surgeon convinced them that this would be ok as I had it for years and it hadn’t been a problem. So eventually I have an ECG and an echo on my heart which showed that my left ventricle had a slight impaired function so nothing major to worry about but we will refer you to a cardiologist just to make sure everything is ok.

Last week I went to see said cardiologist at the Royal Free Hospital. The consultant was very pleasant and took my full history and organised an ECG and an echo on the spot as he didn’t have access to my full previous results. So the long and short of it is that my left and right ventricles are only working at 55-65% and that I will need to take beta blockers for the rest of my life to prevent any further damage. He also informed me that should they not work I will be looking at a significant impact on life expectancy. Cheerful thing to be told and another problem unrelated to Crohn’s I now have. Fuck it. Got to keep your head down and soldier on. However, it does mean I can’t go near a gym as I was specifically told no exercise until they get it more sorted than it is now. There is a chance of the beta blockers actually fixing some of the damage but the way I was told the consultant didn’t sound too optimistic. It’s another thing that I will hit head on and overcome. I have good people round me and that counts for everything.

 

Until the next instalment of pure hate. Stay safe.

8 years ago Short URL 4 Comments

Uncategorized

01

Jul

Woman, 23, becomes Facebook sensation over colostomy bag bikini picture

10 years ago Short URL Comments

Uncategorized

Create a free website or blog at WordPress.com.