Do you think anyone who works for customers services actually likes helping people as my current experience is not leading me to believe this – at all?
Frustration is one of those things that none of us want to feel. It feels yucky, uncomfortable and miserable. No one ever wants to feel any of these emotions right? But did you know that frustration, although it may be associated with negative emotions, can lead to your true happiness?
Frustration is a good thing in the sense that it takes you out of your place of contentment and into a place where you try to understand where you need to be going in life. You would think that it is important to be content in life because when you are content you are happy with where you are in life. This couldn’t be further from the truth. What you need is gratitude for what you have.
Contentment vs. Gratitude
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When I went to see the consultant charged with diagnosing me, he asked me so many questions obviously trying to narrow down what I was suffering from. He wanted to know my medical history. To be honest, I didn’t think I had much of a medical history. I’d had the mumps at some point. I had stitches in my head from being pushed by a boy in my Primary 2 class and cracking my head open on a table. (In his defence, he was my ‘boyfriend’ and I was pulling his hair – we were together on and off for 6 prepubescent years – and in my defence it was his birthday!) My tonsils were removed when I was 18. I had my wisdom teeth out at 20 (I was one of the lucky ones, I didn’t look like a hamster after that op) and a bout of German measles also in my 20’s. Other than, that I had painful periods but I didn’t even think that was worth mentioning. However, when the consultant asked about my parents’ history and I told him my Mother had had ovarian cancer when she was just 36, his ears pricked up, alarm bells started ringing, clang, clang, clang.
He wanted to know as much as I could remember. I was 11 at the time. I always thought my Mum’s op had happened in the August but chatting on the phone the other day she said it was exactly 34 years to the day on October the 24th, 1981. I remember being told Mum was going to hospital and for an operation. I also remember she’d been quite ill fairly regularly throughout the year before but had been told, as she had, that she had ‘spastic colon’ – ‘a working mother’s complaint’. What Mum didn’t tell me then was that when the time, finally, came for her operation, she was sure there was something very wrong.
She spent a long time in surgery – much longer than we thought she’d have to. What the Dr found, was a lump on her left ovary which he thought was ‘suspicious’ and whatever else he found he made the decision there and then that Mum had to have a hysterectomy. There was no time for questions. So she woke up at the tender age of 36 to be told that she could never have any more children.
The singularly most vivid thing I remember about this time happened a couple of weeks later. Mum was still in hospital recuperating and Dad and I would visit every day and every lunchtime we would take in her mail to her. My Mum has a great deal of affection for her doctor, she believes he saved her life, but what happened one lunchtime made me hate him! My Father innocently handed my Mother her mail. She opened one letter, read it but what the letter telling her was that her cancer required further treatment and not on the island. There had been a clerical error and that letter which should have gone to her gynaecologist was sent to her. There is no easy way I imagine to be told you have cancer, nor that post surgery you require further treatment, but surely there was a better way than this? Let’s not forget than in 1981, very few people even dared to mention the word ‘cancer’ nevermind talk about it. She burst into tears, as did my Father. This was the first time I had seen my Dad cry. The doctor hearing the commotion came into the room, took me by the shoulders, marched me backwards out of the room and shut the door in my face. To this day I can still see him looking down at me, over the top of his half glasses. I had no idea what was going on. I just knew it was bad. Catastrophic. Only in recent years did my mother tell me, the reason she was so upset, was because her treatment would coincide with Christmas.
As an adult I now know that the surgeon was taking care of his patient but I don’t think, with the severity of the situation, my folks realised my despair on the other side of the hospital room door. I wanted to help but I’d been shut out.
When my Dad did tell me himself what the situation was and that my Mum was really ill, he told me at the end of the school day. My Mum and Dad were both teachers till their retirement, in The Nicolson Institute in Stornoway. My Dad was a Maths and Guidance teacher and my Mum taught English and History. I was a teacher’s kid – not pet! At the end of school day I would go to where my Dad parked our car just outside the Springfield South building that way I could get a lift home. I was in 1st year. This day, I got into the back seat of the car, as usual, and Dad while sitting in the front seat told me the news. I didn’t think that was odd at the time, the news was enough to take in, but I realise he couldn’t have wanted to look at my face as he told me. It was too much for him and of course he didn’t know how I would react. I knew it was bad, I knew it was real bad but I forced myself to cry as I figured in terrible situations that’s what you do. So I cried. I realise now, that was just shock.
Mum had cancer. Things changed and fast. After chemotherapy sessions in the Lewis hospital she was sent Glasgow for radiation treatment. She lost weight. She cut her hair so it wouldn’t fall out, her beautiful auburn hair that she’d never cut short in her adult life. She wouldn’t let me hug her at the Beatson in Glasgow when we visited; she was worried about the radiation she was harbouring. There was a big radiation sign on her hospital door. On her tummy there were four black dots marking where the radiation had to be aimed, which remain to this day. Treatment for cancer was much more crude 34 years ago, as were general anaesthetics and operation scars. She regularly vomited when we visited but I guess that’s because the treatment made her sick a lot. Christmas Day that year was the worst day of my Mother’s life, she was so ill but we were ‘holidaying’ with friends and they helped us make the very best of it. I was really too young to realise that and too young to be grateful but I remain very grateful for their support. At no point did I think Mum would die but was naivety, denial and youth. She watched other women she was having treatment with die and had to live with that guilt too. Her prognosis was not good but she’s still here. Sometimes I think she’ll out live us all. She was determined not to leave her 11 year old without a Mum. She was determined to beat cancer and get her life back.
So, 19 years after all that trauma, I relate it to my consultant and find out that I am now being booked in for a laparoscopy. I ‘jumped the cue’; I was ‘fast forwarded’. Some women go undiagnosed for years; years and years and years. Though I still hadn’t been diagnosed, the doctors had an avenue they wanted to pursue. You see endometriosis has symptoms, as I said, that are very similar to other conditions but the only way doctors can diagnose it, is to see it inside you, to see it for themselves.
When I was nine or ten, I went along the road in our village of North Street, Sandwick, to help a neighbour Peggy with her garden. She ran the small post office. I liked Peggy, she was an older lady, probably a little younger than my own Granny, and I became friendly with her as I used to go along to the little post-office to pick up my Granny’s pension. I came back from a long day in the garden, delighted with myself, but one of my eyes was bothering me. I remember distinctly saying to my Mum, who was ill in bed, that I had ‘gum in my eye’. I think at first she thought I meant chewing gum, that wasn’t so but my eye was definitely irritated, something was in it. My Dad took me to the hospital; they didn’t know what it was and I was sent home, thankfully though, that never happened again. When I was eighteen I got a rash all across my body, from my neck down to hips, red, weepy, itchy sores. I was just at that vain enough age to be glad I didn’t have them on my face, my Mother worried about that too and also about my body as she was concerned they would leave scars. They didn’t. I went to the doctor and seemingly it was: ‘a rash that you get in the spring or autumn when the pollen count changes but you’ll only get this rash once in your lifetime’. They were a horrible few weeks but it never happened again. When I was in my mid-twenties I was travelling in England around Yorkshire. I woke up the morning after my travels and my eyes were completely stuck shut. A somewhat disconcerting start to the day but I figured that was a reaction to the myriad of rape seed fields I’d passed the day before. Again that was a once in a lifetime experience.
Would I be this lucky with my trip to the hospital that Sunday afternoon?
About a month after the Sunday afternoon incident I was on a night out with some friends. Not too far from my home therefore, thankfully, not too far from the Western General A & E. It was probably now about midnight and ‘the pain’ started, so did the fear. My friend Malkie ordered a taxi, a black cab, and literally in the time it took to drive the half a mile to the hospital I was doubled over in pain. Malkie waited for me as I again went through the process of test after test, waiting for the results, endless agony. The only other information that I could give them this time was – that this wasn’t the first time I’d experienced this.
I spent that night in hospital, my boyfriend was away on tour so the hospital didn’t want me home alone. It wasn’t a pleasant night; it was morphine induced but at least the pain again abated. No one was able to tell me why I had this second ‘attack’. Again, no one was able to tell me what it was. No one told me what would happen if I didn’t get the morphine and I was really too frightened to ask. In truth; I thought I might die. Anyone who has suffered endometriosis pain will know this is no exaggeration. The next day before I left the hospital, I was told I would receive a letter about an appointment for a follow up consultation. I think I sat by the letter box every day I was home till that letter arrived.
On the 27th of September I was shocked to see the first headline in The Guardian newspaper was: “Endometriosis: the hidden suffering of millions of women revealed” Wow! This was front page news? Most recently there had been pieces about Jeremy Corbyn which I gladly read – even the crazy allegations – or the desperate stories of migrating refugees, but this was a front page article about Endometriosis. Unheard of! I had to read on.
‘1 woman in 10 of reproductive age has endometriosis’ and approximately 176 million women around the globe may be suffering from it which are similar figures, according to this article, to the number of cases of diabetes but still very few people know about this disease. However Endometriosis is not unheard of to me. I’ve suffered from it since 2000, well actually I’ve probably suffered it since well before then but that is when it really raised its ugly ‘freaking’ head.
I had always had painful periods. I considered it my norm. My Mum had painful periods before me and told me stories of Feminax tablets being passed to her under toilet doors as she crouched, doubled in agony. We girls compared stories in school but I just accepted that periods were painful and that you just got on with it. While growing up I don’t remember them ever being so painful that I was unable to do things – once I had pumped myself full of painkillers at worst – but then maybe I’ve blocked those instances out. I think we have a habit of blocking out physical pain, as well as emotional pain, I mean why would you ever wish to remember such things?
The path to my diagnosis was not a pretty one and began one Sunday afternoon in my, then, flat on Church St in Glasgow’s West End. I was making some food, it was early afternoon and felt that telling abdominal pain that my period was likely coming soon. That dull ache. Nothing serious, at first, but over time the pain intensified. I began to pace about the flat unsure of what to do. Sitting down didn’t help, lying down was useless. My boyfriend at the time was with me and was concerned, never having seen me like this before. I felt like an injured animal, bewildered by the pain, pacing and pacing. As it was Sunday I couldn’t just pop into the doctors which was only fifteen min walk away and by this time I was in so much pain I was obviously not thinking straight as I phoned the emergency doctor to ask how much pain you have to be in before you can go to accident and emergency. Gosh we women are strong when it comes to pain! I mean you can’t go to A&E for period pain?? I was in and out of the toilet. I wasn’t quite able to explain to my boyfriend what was happening to me. I remember he genuinely, helpfully and well meaningly told me through the toilet door at one point (this was probably after my sixth visit there in 40mins) that I ‘probably needed a good fart’ and that I shouldn’t be embarrassed. (Oh I wish that I were that genteel). You have to laugh, if you don’t laugh you’d cry….though I don’t remember crying with this pain, that day. Again another thing I may have blocked out. What I hadn’t told my boyfriend was while I was in the loo I was bleeding from both orifices – yes endometriosis is a very attractive disease! – but I didn’t tell him as I couldn’t compute it myself. The blood itself, was black.
Thankfully though I eventually figured out how much pain you need to be in before you go to A & E, that’s when you begin ‘involuntary’ projectile vomiting; which happened most spectacularly in the stairwell when I thought maybe I should begin my journey to A&E. (Actually writing this it just occurred to me did I ever clear that mess up? At the time, however, I realised the seriousness of the situation and just kept going). When I got to A & E, an aching three minute walk across the road to the Western General Hospital (and to think if it had been a weekday I’d have walked the fifteen mins to the GP’s) I was not triaged. The nurse took one look at me through the glass at reception and said the words I will never forget ‘we’re taking you in straight away, you’re grey’. I was in too much pain to care, the way I looked didn’t register with me at all, I was just relieved she said ‘straight away’.
Now when a nurse says ‘straight away’ you think: ‘Oh thank God, any minute now this will be over’ but that wasn’t to be. The symptoms of endometriosis are similar to many other illnesses such as gall stones, urinary tract problems, bowel problems, so I began a series of tests and the tests could not happen quick enough neither could the waiting for the results of the tests. I was roaring with the pain.
I am probably perceived as a fairly chatty person, who is noisy when laughing mostly, but I’m a very good patient. I become very ‘Yes, Doctor, thank you Doctor’ as I have the utmost respect for hospital staff and the job they do and don’t wish to cause them any more trouble than they may already have, but I just could not stay quiet. I felt like a thousand knives were stabbing me repeatedly in the stomach. Stabbing and twisting and ripping themselves out then entering again harder, meaner than before. It was endless. It just got worse and worse. The dull ache was long forgotten. Eventually, I don’t know how long it was but it felt like days, I was given morphine and finally, slowly, the pain began to ease. ‘Yes, Doctor, thank you Doctor’ returned and I was told to sleep. I was out for a few hours and when I woke my ‘vitals’ were taken and shortly after I was told I could go home. That was it. 3 mins back across the road. Home.
By this time it was early evening and that night I was sitting on the sofa, doing what I had always intended to do that night, watching ‘The Royle Family’ on TV. Except, this was different. I had just been through the most excruciating pain I had ever in my life experienced, a life changing pain, yet here I was sitting on my sofa pain free, as if nothing had happened. There were no external signs. I don’t think I felt dopey or anything. Everything was ‘normal’.
Yet no-one had been able to tell me what happened, why it had happened and, most importantly, if it would happen again.
When I started blogging I wanted it to be about my travels while performing. I visit so many different countries and I think I wanted to have a way of documenting it and all the different bands and projects I work with. I feel very lucky to do this and am constantly learning through meeting new musicians, singers, performers and people. The problem with this is, being on the road can be exhausting. The most important part, the very reason you are there, is to work. You have to concentrate on the job. On a 4 week tour that can become more difficult.
Travelling nowadays is not necessarily as ‘exotic’ as it used to be. You are often stepping on a sky bus when you fly these days. Multiple airports in one day can be draining, especially now with intense security checks – the level of which vary from one airport to the next. I still love my job but I found I was not able to write about it all the time while travelling. I have to get my head down and rest, as my voice can be weakened with different climates and temperatures, lack of sleep and we still have to keep to schedule despite weather disruptions.
Then there are the different projects – there are so many – sometimes you just have to get the work done and there is no time for writing. When you get home the desire might be to rest and not recount all your wanderings for a while or you have to get on with the next gig. The problem/blessing of being self-employed! So, health on the road and at home is something that started to feature a lot in my musings.
I was then hit by a headline in the Guardian, UK, that took me totally by surprise. It was about endometriosis. That ugly disease. Now that is something I feel I NEED to write about. It is maybe the biggest journey I have ever been on. Dealing with it is also a project that is ongoing and can take time. However, it doesn’t occupy my time as it used to, but I’m still working out if that is a good or a bad thing. You see, in some ways I have learned to live with it and don’t think about it all the time but before I used to have think about it constantly, what it meant each day, the next month – would that be another hospital visit? – what it meant for the future? Now I wonder, am I so relieved to be beyond the pain have I given up? Or is it just acceptance.