Life Via a Line

In life there is always something we feel we cannot and should not do for fear of humiliation, regret, having to explain ourselves to others, and sometimes to ourselves. When you think about it, the word should is an instrument of regret. Decisions that we make everyday may not lead to the results that we want in life, but does it really serve to tag on a conditional disclaimer to everything we have said or done in the past? It does if you want, as F. Scott Fitzgerald once wrote, to “beat on, boats against the current, borne back ceaselessly into the past”.  In the real, modern world without prohibition, flappers, speakeasies, jazz, and glam, it doesn't serve you to caveat your life with  should  if you want to experience life in the moment, at its fullest. It’s not easy to remove the word should, this seemingly harmless word from vocabulary because we’re programmed to blame ourselves when things don’t go according to plan or as we hoped they would as if there...

I have always believed that surrendering equates to failure. Earlier this year, I felt completely defeated by life. I was down for the count.  I knew while being down for the count, that I couldn't get back up on my feet until I surrendered. Every part of my life flooded before me, my life felt perfect until this point.  My golf, my career to date, my wife, my family all of it on a conveyor belt flooding my mind.   7 years prior to having my line fitted while I was out playing golf, Life had thrown me a massive curveball, more like a shower of curveballs that ripped my life up into a billion pieces.  To everyone around me, I appeared to be living the dream.  Lady Captain off of +2 while holding down a job in the NHS.  My life was never the same again.   After a few years of this, my life was unravelling before my eyes and after knowing nothing but success, I started to encounter nothing but failure.  Exhaustion, pain and my ...

It is often said that it is better to leave too early rather than too late, whether that is your career, a party, or life itself, But the problem is to know when that might be. The only certainties in life are death and taxes. We all try to avoid both.  Our NHS is collapsing and I fear one day will no longer exist and free at the point of need will be just a distant memory. In most countries the population is ageing and needs more medical attention, and high-tech modern medicine is ever more extravagant. We all want to see cancer cured, but this will only drive costs up and not down. Not just because the complex genetic and drug treatments involved are so costly but because more of us will then live longer, to die later from some other disease, or slowly from dementia, requiring constant and expensive care. Rather than the discovery of new antibiotics, the human race, especially in the poorer countries, faces decimation within a few decades from bacterial antibiotic resistance....

Relationships are part and parcel of life.   I haven't actually had many relationships even though my siblings believe I used to run a black book. Some people love relationships while others prefer being single.  I openly admit I wasn't sucked into dreams of massive fairytale weddings and living like a princess.  I've watched my siblings go through heartache, loss and the grief of relationships breaking down on the road to their current happiness.   Regardless of how they happen, breakups aren’t easy, and it’s common to think of a relationship’s ending as a failure.  I  may in my teens of got upset over dates gone wrong, I could tell some great stories but will save the for some other posts.   I got married last year to my long term girlfriend, we have been together a very long time and she openly tells me she married me for my pension.  If the point of a relationship is to be together until death-do-us-part then yes, a breakup is n...

Today, someone knocked into me and I said sorry, they just carried on with their day completely oblivious.  If you’re anything like me, you apologize far too often, and most of the time, when you haven’t done anything wrong!! Sometimes, I even find myself apologizing for matter's beyond my control.  I apologize when someone else was actually in the wrong and sometimes I apologize for life choices I have every right to make. As a human being, I apologize because I am highly sensitive to people around me and never ever do I wish to be the cause of causing pain to someone else.  It is my nature to apologize when I have done something wrong or if I have in some way, god forbid, hurt someone's feelings. I do though, readily admit that sometimes you will not find me saying sorry for;  - Being who I am - I never apologize because someone demands an apology from me - Giving my opinion, In life there is no right or wrong opinion, and I will never apologize for giving...

We live in an age of information overload, television, internet and magazines flooding our senses with a myriad of things, combined they can affect us just enough that the subsequent thoughts we may have seem like they are our own, and the decisions we make based on those thoughts seem rational. Everyday, we are primed to spend our time or money on objects that often we do not even need.  A thought is planted in us so carefully that suppressing it feels like denying our most basic instincts.  It stirs our primal desires of power, sex, and influence. The results are obvious, and all around us. We are always looking for the next TV, the next smartphone, the next model of Car or the next television series to binge on.  Today, we are all consuming information and material possessions at a startling rate, and we don’t seem to mind.  Society has become throw away and when it comes to entertainment and information, it's as if there is no such thing as too much....

My chest line is now part of me, just like my right arm is.  My chest line is a permanent fixture.  My line is a soft, hollow tube that is actually about the size of a large drinking straw.  It's main use is to take and return blood from my body. It is extremely strong and made from medical grade plastic.  The tip of my line has been placed into one of my large blood vessels near the atrium of my heart.  It is placed here because of the large volume of blood flow.  In order to hold it in place, along the line is a cuff.  Gradually over time, my tissue has grown over and in between this small cuff which makes it more solid and holds it in place and more importantly helps stop any bacteria from entering my body through the exit site.  The hub of my line sits on my chest and I always cover it with a dressing, a biopatch and tape the legs, or lumens, down for safety and of course personal comfort.  I have two lumens, one blue and o...

Everyone in life has choices, even when it comes to love.  Each of us take responsibility for our lives, we give ourselves the power to create the things we want. As humans, we tend to think that matters of the heart are outside our realm of influence, but I completely disagree. If we would only take our love lives into our own hands instead of leaving things to chance, I believe we could all have the love we so long for. It really is up to each of us to create the best lives possible for ourselves. The vast majority of us go with either our hearts or our heads. We tend to think we must choose passion and accept the pain that comes with it, or settle for people who bore us but are good to us because they have a pension or a successful career.   I think it takes work but it is achievable to make a commitment to yourself and the life you want,  You can then make choices that are consistent with the commitments you make.  We do this in other areas of life like wha...

I've realized that I waste a lot of energy on explaining my decisions. Sometimes, my explanations are an attempt to connect with another person or to step a little further out of hiding. Often, they are a result of my own self-doubt and desire for people to like me. As I have explained in previous posts, I feel an obligation to say yes to almost everything.  Sometimes I'm glad to agree, other times I'd prefer to do something else entirely. It can get very tricky when the thing I'd prefer to do seems unimportant, wanting a quiet night at home doesn't seem like a valid reason to decline an invitation, but half the time, I'm exhausted and maybe feeling a little sick and I have a lot I need to get done the next day and… and… and… When someone asks me, I often think that is a sufficient reason to say yes but in order for me to say no, I always feel I have to prove that I have an abundance of important and inescapable circumstances that are in the way.   In life, as...

My wife has bipolar, her bipolar does not define her, it is a small part of her make up.  For one second, I will not even pretend that I am the caretaker or caregiver in our relationship.  I am not expected to hold everything together when emotional hurricanes hit us.  We hang on as a couple, with everything that is flying around us and we just wait for the calm.  To be honest, living with her is far from easy and harmonious sometimes, but believe me, I am no bloody angel, I can't make a decision no matter how basic - that would drive anyone to dispair after a few days let alone 17 years come January 2018.   The stigma of mental illness isn’t just connected with those who are ill, like my wife,  but also to those of us on this journey with them.  Many people who know us as a couple and as individuals know that we are both strong and independent and we can both be heroically brave. Just like my wife, I have weaknesses and fears. My fa...

All Blonde Women are dumb Italians are good lovers All Muslims are terrorists All Women are terrible drivers All Men are good at sports All the above are stereotypes that people use. Every Race, Culture, Country, Religion and Community have stereotypes.  It is a way of oversimplifying groups of people. It is one of the easiest ways of establishing identity. Whenever we don't have a good understanding of a subject, such as a group of people or countries, then we tend to make assumptions about them. A stereotype is nothing but an assumption that has become common knowledge. Whenever you make judgments about people without knowing them, you are stereotyping them. Stereotyping makes people generalize things. More often, they are all false assumptions. Though there are both positive and negative stereotypes, a majority of them are offensive. People generally stereotype out of bias against a particular group of people or religion. Stereotyping becomes a way of conveying their ...

Learning to adapt is vital in life, good and bad comes in and out of everyday life because everything changes.  Resilience is therefore critical, it’s not the strongest or most intelligent that survive but those who are most adaptable to change. Most people plan their lives expecting good to come their way, to get what they want, and for things to work out how they plan. At the same time they are chasing the good and trying desperately to avoid the bad. I think unhappiness in life comes from not being able to adapt to change, humans cling to things that we have lost like a loved one or we get upset because things do not go the way we want.  Humans often overlook the ups and downs and the ebbs and flows.  Things come and go as nothing ever stays the same and no matter how hard we try we cannot control the things that we want to.  Acceptance is needed to help us adapt.  In life, everything has pros and cons and every cloud a silver lining but it's what we ch...

Looking back, I know that I have spent most of my time striving to improve myself instead of living. For many years, as I have discussed in previous posts, I thought I was never good enough. I am girl next door, plain Jane, not in anyway beautiful, somewhat smart but not super intelligent.  Tennis, Church Youth Group and later on Golf filled up my free time.   I have been successful within golf and I have invested heavily with time, and energy into studying and growing in my career.  Despite all my studying, there is one area that I was never schooled in and that was how to know my own value.  I wish back then that I knew my own worth because I would have stopped focusing on my flaws, imperfections and weaknesses while being truly unaware of my natural skills, talents and strengths .  Knowing my own worth would have stopped me fighting for perfection and punishing myself for every mistake I made. I would have known that perfection was nothing but an...

When we are young it is incredibly easy to make major mistakes in our perception of others, but within this perception are the seeds of an issue that can continue to show up. I believe there is imperfection in perception.  My misinterpretation of a teacher’s quote aged 14, is an early mistake in “encoding” and “decoding.” Encoding and decoding are just fancy talk for the complicated interaction that is communication, and how they’re related to something called the confirmation bias.  When I read those words on the board aged 14, the words on the board spoke to me in a way that I thought was universal: my fourteen-year-old brain knew  exactly  what they meant. When words are spoken or written on board, the intention of the communicator can easily get lost in the understanding. When I say something to you, I’m encoding information that I want to communicate; I’m trying to get you to understand me.  The trouble comes I believe when we forget that each person und...

Since my three sessions of plasma at the start of this week, I have been in pain, under the skin, just above the exit site of my permanent chest line. My wife will often ask me “Are you okay?” this week, 97% of the time,  I have replied "No, I am not"  For the past 7/8 years, I have endured pain, the greatest pain of my life to date for prolonged periods of time.  I know I am very strong both physically and mentally but I’ve always really struggled with having blood taken due to the depth of my veins.  As many nurses, doctors and consultants would take several goes both emotionally and mentally this would effect me greatly.  As time went on, I struggled more and more.  Having no venous access meant the chest line was fitted as a permanent solution to allow me to have the ongoing treatment I needed.  It's odd because going to theatre and having temporary Vas Caths fitted in my neck while I am under local and therefore awake and going to theatre to hav...

Yesterday I attended the first face to face meeting of the Content Advisory Group in Birmingham, the meeting was held the day before the National Annual Muscular Dystrophy Conference 2017. The Content Advisory Group (CAG) started in January 2017, it is a voluntary group and includes people from all over the UK. If, I was asked the question - What does this group mean to you?  without a second thought I know I could easily convey that the groups means that the voices of people with muscle-wasting conditions are reflected in all of the content created by MDUK, basically keeping the people at the heart of everything created by the charity  from leaflets to event posters. I would be joking if I didn't admit, that leading up to the CAG meeting I felt a little apprehensive and actually a little nervous.  People that know me well know that I like nothing more than a good chat, with anyone!  Unsure of what to expect, I made my way on the train (9 minute journey f...

For the past 3 days I have had a shit time and this is actually putting it mild. Monday, I started my first session of plasma at midday, by 12:10 the machine was alarming and it continued like this for the duration of the prescription of plasma.  We kind of decided that the machine was being overly sensitive as we kept swapping the lines over and could not find any clots. I felt shit, I was cold and extremely tired. Yesterday, I arrive at the hospital at 10am and firstly the machine was not primed, meaning we were at least 45mins away from starting.  Around 1hr plus later, time had passed incredibly slowly and eventually we started, the machine was having none of it and decided it would audibly alarm every couple of minutes, lines swapped and flushed and we took over 40 minutes to exchange one bottle, often this only takes under 10 minutes.  We knew this was not a happy situation and we started a difficult conversation about the line, just as we start the conversati...