THIS TIME LAST YEAR

You know on facebook how sometimes in the sidebar you can see your status from the same day in previous years? Well I was just looking in my diary- I keep a health diary otherwise it would all be a blur! On 27-10-10 I had one of the worst days of my illness to date. I had been unwell for days but resisting it like you wouldn’t believe. On the preceding labour day Monday I had been at a lunch BBQ with friends when pain struck, instead of causing a scene I tried to hold it in, by the end of the BBQ I quietly called my sister to collect me and vomited the whole way home just from the gravity of the physical pain.

Two days later on the 27^th my younger sister (who also suffers from endo) took a bad turn and I had to rush her to the hospital, Mum was at work and so I stayed with my sister until mum got to the hospital in the early afternoon. I was still in considerable pain and feeling awful so I went home as soon as Mum arrived. On the drive home I got progressively worse, I recall joking to myself that I might as well turn around and go back to the hospital. I got home and lay down for a short time before the pain got really bad really fast; in addition to this I had terrible bowel symptoms so was back and forth to the bathroom.  I reasoned with myself that if I could get back to my bed and take more pain relief I might be able to get it under control – it was the first time I had been by myself when the pain was this bad and I was struggling to decide what to do.

As I walked back into my room I was struck down with an incredibly sharp pain which must have caused me to black out. The next thing I remember was the sensation of carpet fluff in my mouth and a great throbbing lump on my head, I had clipped the desk with the side of my head on the way down. Needless to say the fall did not help with my decision making and I remember becoming a bit hysterical and feeling frightened. At that moment like a little blonde angel my youngest sister came home. I should have asked her to call an ambulance but I didn’t want to freak her out so I gave her my other sister’s (I have 4 sisters) work phone number and she rang and told her, in a very casual voice I might add, to come and take me to the hospital. In the midst of all that had happened I had sort of forgotten that my other sister was already in the hospital.

A couple of the nurses looked at me with déjà vu when they read my surname and before I knew it Mum was also by my side. Poor Mum had to race from one end of the emergency department to the other for several hours trying to support us both. In the end once we were both stabilised they put us in the same room together which made things slightly easier. My sister ended up being admitted and I was free to go (thank-god!). We were all very glad to see the end of that day, it stretched our family to the max and as usual Mum was the rock holding it all together for us. She even managed to kick up a good old stink so that the specialist decided to bring my procedure forward GO MUM!

The panic and despair I felt that day when I was alone was something I hope I never ever have to experience again. Thank-you to my wonderful support network (you know who you are) for always being there. Your love, help and support reinforces me it makes me stronger than I think I can be and carries me along when all my fight is gone. I love you guys.

DRUGS...NOT THE FUN TYPE

So far in my journey of illness I have become acquainted with many different drugs and medications. When I first met some of them I thought they may be a one night stand sort of arrangement, some of them carried on for a dirty weekend together, others continued to affairs with dramatic consequences, and some have entered into serious long term relationships with me (a whether you like it or not sort of scenario!).

It was at the onset of this next bout of sickness that I became so unwillingly reliant on constant pain relief. Medication was the only thing that gave me a chance at staying out of hospital. In addition to the endometriosis pain I began to get an incredibly sharp pain in my left hip and running down the front of my thigh. This pain nearly always coincides with the endo pain, and after ruling out injury or mechanical causes my GP found that the two must be linked. So in came another constant companion to me and my medication; a bright green walking crutch. The embarrassment quickly dissipated when I discovered how much easier it was to limp along with the help of the crutch. Although over time that too became a burden, not only did I get sore arms and hands, but the surrounding house and furniture also took a bit of a hiding due to my lack of coordination.

I had spent more than my fair share of time in hospital so I was avoiding that place like the plague. September, October and November went past in a blur of pain and medication. I was still trying to go to uni and had just started a new job which I loved and my diary is full of entries like: “to take pains meds and be veged out in class and not take on any information, or to suffer in pain and not take on any information?” and “please please let me make it through work tonight, this job is going so well, I really don’t wana let them down...again”. My daily life was becoming a trade off with pain relief.  I was putting a lot of pressure on myself and it might sound silly but now I look back and I’m glad I did, without that pressure I don’t know if I would have done as well mentally through that time as I did.

During this time period mum and I were investigating and trying quite a few natural and alternative therapies, some of them worked a bit in the short term, but many of them were expensive with varying results. I began to tire with them and decided to try the conventional path again. It was time for a little less conversation and a little more action please!

WHATEVER NEXT?

So now we are up to B-semester 2010 and all-in-all it was going quite well. Grades were okay and I was able to work casually too. From memory nothing stands out that much from this period. I think I have a diary entry around this time that says: “man I’m crap at keeping diaries now, when I was in hospital I wrote everyday..... just clicked why that is – I have BETTER things to do with my time now yeeeehaaaar!”. Around this time I got some of myself back. I went from being constantly worried about getting sick or being a burden, to only letting it cross my mind a few times a day. I enjoyed socialising again, and my friends (bless them) were happy to pick up right where we left off, there were many MANY toasts to good health. For a few weeks I got back into the driver’s seat of my own life again, granted my health had only moved to the passenger’s seat, I was still the one in charge...or so I thought.

University semesters are divided into 6 week blocks with a two week break in between them. At the beginning of the break after the first half I felt knackered, I had put in a lot of hard work during the semester so I was looking forward to a rest. As fellow students are probably already aware you always get sick in the holidays, it’s like the minute you slow down the whole semester catches up with you. This is something I am familiar with so I didn’t think too much about feeling unwell for the first few days. In the middle weekend of the break when the pain came back worse than ever I was completely overwhelmed. Had it not been for debilitating pain I would have thrown my arms skyward and screamed: “Are you serious? Really? What the F**k now!” because that is exactly how I felt.

Before I realised what was happening, there it was again, that big black cloud lingering over me. Fear. How was I going to cope with this again? Did I even have it in me? Is this how it’s always going to be? Why didn’t my surgery work? Will I fail my university papers? Will I lose my job? Can my support network be by my side...again?  At the time I remembered a story book that mum read to us as a child, and after a series of unbearable and unexpected events the main character, exasperated, declares “Whatever Next”... that sums it up!

Spoke To Soon...

I was able to enjoy approximately 36 hours of my own bed after being discharged before I was rushed back into the emergency department. My concerns about being discharged so soon after surgery were confirmed. After the pain was addressed the doctor on duty wanted to check my wounds for infection. After looking at them he told me that one of the wounds was very unusual, this was a bit alarming so I asked him which one and what was wrong with it. He pointed to my navel piercing (there was no jewellery in it at the time) which I have had for about 10 years and had long since healed. When I told him what it was he did not seem at all phased and left without saying anything.

This marked the beginning of another on/off stretch in hospital. It was during this time that I contracted several different illnesses simply from being in hospital; firstly a (not so) super bug which was gastro hell, then the flu, topped off finally with an eye infection. Needless to say I was frothing at the idea of being outta that joint for good! I had had A-semester off university for obvious reasons and I was really keen to try and get back to study if my health improved. I hoped and prayed like crazy that I would soon feel the benefits of the surgery. Thankfully about 2 months after the operation I was, for the first time in 6.5 months, feeling okay. I wasn’t feeling great and I wasn’t pain free but I was able to enrol in B-semester and carry on with my studies at a local campus affiliated with my university.

Much to my delight, the academic part of my brain seemed to have come through the hospital experience relatively unscathed. After spending 6 months either lying or sitting down doing sweet fanny all it was quite enjoyable to be interacting with my class mates and learning new things. Life was looking cheery, I was getting good marks, I was getting over a no-good relationship, I had good family & friends around me and if I squinted and stared out into the distance I could almost see a hint of happiness on the horizon. 

I Told You So!

Let’s just say if I had a dollar for every test that came back clear or every doctor who told me they couldn’t see anything wrong, I would have a small fortune; actually I would be going private instead of mucking around with the public health system. (side note: if you don’t have medical insurance then go and get it NOW, it’s only a few dollars a week but once you have an illness its either completely unaffordable or you cannot be covered, better to have it and not need it than the alternative!).

There was one doctor in particular (I will call her ‘Doctor A’) who vehemently denied I had any valid gynaecological problem, she looked at me and spoke to me as though I was a mosquito buzzing around her face. In the months preceding my operation she and the team she represented had done their best to swat me away. I can recall three instances where she told me directly that there was no way at all that I could have endometriosis or poly-cystic ovarian syndrome, and in hindsight I believe she may have been the point of contact that was stopping me from having any further gyny investigation (bear in mind that when I finally received the surgery it was because another doctor had bypassed her and her team). 

The time after the surgery was a bit of a blur to begin with, I can remember having a very kind nurse in recovery, yet I cannot remember the transfer from recovery back to the ward. Upon arrival back to the ward I was hooked straight up to a PCA (morphine pump) which also contributed to the blurriness. However one thing that stands out crystal clear in my memory is ‘Doctor A’ abruptly entering my cubicle, announcing curtly that I did have endometriosis and then turning sharply on her heels to depart again. Thankfully Mum had the presence of mind to probe for more information before she could escape and ‘Doctor A’ explained briefly that the operation had gone well, moderate endometriosis had been discovered and removed.

Prior to the surgery I had allowed my mind to imagine the feeling of elation that would come with a diagnosis, the satisfaction of finally knowing the source of my pain and having options and information about treating it. I had imagined it would feel like lifting your head out of a dark stormy cloud and smiling a sweet victory grin at all of those who didn’t want to believe me or help me. I was quite shocked to find I felt no such thing. I was ANGRY, I had suffered so much for long and it could have been solved earlier if fuckwits like ‘Doctor A’ had just taken the time to hear me out and do their jobs properly. I was also overwhelmed rather than elated; I cried tears of frustration and sheer exhaustion from the long journey it had taken to reach that point. On top of this I was so sore, I was in a lot more pain than I had been told to expect. Despite only having 3 small laparoscopic incisions I couldn’t stand or lay completely flat without pain bolting through my abdomen, I was also unable to walk.

I asked to see ‘Doctor A’ as I had done many times before, this time however she actually came. When I saw her again I wanted to scream out “I TOLD YOU SO” but choking back tears all I managed to ask her was why? Why had it taken so long for this to happen? Why did she tell me I wasn’t a candidate for surgery when in fact I was? Why did she deny for so long the possibility that I had a gyny problem? Her response contained a lot of shoulder shrugging and pre-prepared bullshit, when it became clear she wouldn’t give me any answers I cried and she left.

Two days later I had the pleasure of ‘Doctor A’ again, she was there to tell me I was being discharged. I couldn’t believe it when she told me, I was still in a lot of pain and had only managed to walk a few steps, I had no idea how I would imagine a whole flight of stairs at home. Nevertheless I cast my fear aside and I figured that my treatment would now be in line with standard procedure for patients with the same condition as me. I also didn’t want to be in that hospital a moment longer than was necessary, so Mum packed up our gear, wheeled me to the car and we left. So long suckers won’t be seeing you again anytime soon! Hasta La Vista Baby!

Rock Bottom.

Being sick isn’t a part time thing, it’s all consuming and even in the cherished moments of wellness, there is the ever present fear of impending sickness for which a contingency plan must be made. There is the pressure and fear of becoming a burden to those around you if you do go out to do something and it all goes pear shape. In addition to this there is a part of your soul that just resigns sometimes, too much for too long, I’m too tired sort of thing. When you have just turned 21 this truly SUCKS. You are finally at the stage in your life when you can go where you want to, when you want to and you don’t have to ask anyone for permission. In my world I couldn’t even go to the toilet without buzzing for a nurse to come and unhook my drip (a skill that I quickly mastered due to understaffing – NO WAY was I going to wet the bed!). So I swung between the two extremes; at one end of the scale I was miserable, didn’t want to go anywhere, do anything or see anyone. At the other end of the scale I made big plans in my head and felt I could do anything if I just pushed my illness to the side. Happy medium was not in my vocabulary at the time. An example of this pendulum mentality occurred in March when I was due to go to a music festival that my girlfriends and I were turning into an annual event. I had been given the tickets for my birthday and a week out from the event I still fully intended to go, despite the fact I was still in a hospital on the tail end of a two week stay. Four days before the festival, sitting in the hospital, drip in arm, hospital gown on, it hit me like a ton of bricks that there was not a chance in hell that I was going to be able to make it, I couldn’t get to the TV room without a wheelchair, there is no way I was going to be able to rock out with 20,000 people and camp for 3 days. Seems so obvious in hindsight but at the time I was pretty devastated. F**k this thing, f**k it whatever it was, making me so sick and stealing my life. To cut a long story short I sold my ticket and proceeded to sulk miserably. Mum, bless her, managed to score cheap flights online to Wellington, my sister and I had never been there so she booked them for the middle of May. It was such a lovely gesture and cheered me up considerably. My mind was in overdrive planning touristy adventures and picking out accommodation. For a brief second I had the horrible thought ‘what if I’m still sick then?’ but I quickly brushed it aside, the trip was two months away I’d DEFINATELY be better by then. March came to a close, as did April and still my condition had not been resolved. As I mentioned earlier this was a hellish crazy time for me, my hopes were sky high - my trip to Wellington was going to mark better times to come. I was due to fly out on Wednesday. The weekend prior to that, sitting in the hospital, drip in arm, hospital gown on, it hit me like a ton of bricks AGAIN that there was no way I was going to be able to get on that plane.

If I thought I was disappointed last time, this was a whole new level of despair. The thoughts that had been lingering at the edge of my mind, that not being alive would be better than living this pathetic pain full half life, were beginning to come to the forefront of my mind. I had lost all hope. I was struggling to see myself living a full and happy life again. I didn’t want to be strong, I didn’t want to be positive, and I didn’t want anyone to tell me that it would get better. Being positive and strong hadn’t helped and so far things were only going from bad to worse. I was on a one way street heading straight towards rock bottom. And then I got my lifeline.

It was the Tuesday afternoon before I would have been flying out. Mum sensing my despair had really been pushing the doctors to do something for me, she knew that I couldn’t carry on much longer the way things were going, something had to give. I think I mentioned earlier how there is such a shortage of resources with the different specialist field teams. Once you are assigned to a team it is very hard to get another type of doctor to even take a look at your file. For months Mum and I had been ‘lobbying’ the gynaecology team to have a look at me, basically begging them to try and help me to absolutely no avail. So you can imagine my surprise when the head specialist/surgeon pulled the curtain of my cubicle back an announced that he had a cancelation in his schedule and would be performing a diagnostic laparoscopy on me the next morning.

On May 19^th as my sister was at the airport about to fly to Wellington, I was preparing for surgery and I couldn’t have been happier. For a split second the thought crossed my mind ‘What if they don’t find anything? What if I really am crazy?’ but deep down I knew that this surgery was going to change my life. From where I stood (well lay), things could only get better.

Fear. Teetering On The Edge.

For the months of February, March, April and May I spent most of my time as an inpatient at Tauranga hospital. The care I received ranged from outstanding to below poor, inconsistency was the only thing that could be counted on! It was during these months that fear became a part of my journey.

Primarily was the fear of pain. Medical professionals often ask you to describe your pain on a scale of one to ten, prior to endometriosis I thought I had experienced 10 out of 10 pain when I had broken bones or had extensive dental surgery, getting a tattoo was about a 6 out of 10 on my pain scale. With the onset of endometriosis pain I experienced a whole new 10 out of 10 pain wise! It completely blew me away; I wondered how my body could experience so much pain without shutting down or dying. One incident stays vivid in my mind; it was a Wednesday afternoon on my 2^nd or 3^rd admission, the air-conditioning in the ward was undergoing repair and the heat was unbearable, Mum suggested we go outside for some fresh air so she got a wheelchair for me and we went to the hospital roof garden. We had only been up there for a few minutes when my abdominal pain began to get intense, in the short distance between the garden and my bed on the ward the pain became unbearable, it took my breath away and paralysed me; I had never experienced anything so painful. From this point onward I have only partial recall and rely on Mum’s recollection. The pain stayed at fever pitch for approximately four hours, because it was outside ‘normal’ hours there was no duty registrar on the ward and it took what seemed like forever to get a doctor up to prescribe IV pain relief. During this wait I blacked out several times and begged Mum to smother me with a pillow, I truly believed I could not survive that pain. Although it sounds dramatic now, at the time I genuinely wanted to die rather than endure any more pain. I was eventually given IV morphine on top of all the oral pain relief and it did very little to stem the pain. At some stage I was transferred into a private room, I imagine my screams were making the other patients quite uncomfortable. Finally after 4-5 hours of this pain it began to reduce, I was able to speak again and describe my new 10 out of 10 pain to the doctors. After this episode I was given a PCA morphine pump to use for 5 days – a week that on reflection is mostly a blur. Now that I had a new benchmark for pain I became very fearful that my pain would reach such high levels again. Every time I felt pain coming on I became very anxious to the point that my breathing became shallow and I had tight sharp pains in my chest.

Secondly was the fear of procedures. I have little or no fear of needles, I can watch a needle being put into my veins without feeling squeamish, and I don’t think it hurts very much either. The majority of IV lines that I had during my stay were a different story. It just so happened that I got more than my share of; trainees doctors learning to find veins, distracted phlebotomists and hurrying nurses, which resulted in drips tissuing, veins collapsing,  infected entry sites and a whole lot of scar tissue. I require high levels of sedation and anaesthetic, often when I explained this I was treated as though I had ulterior motives and enjoyed the drugs or some such thing. During my first procedure under sedation I came around after only a few minutes and needed extra sedation, even after the extra dose I still came around before the procedure was finished. Luckily that procedure involved minimal discomfort so it wasn’t to alarming to be conscious for some of it. However when it came to my next procedure which was very invasive I wanted to be sure that I was completely sedated the whole time. Initially I asked about anaesthetic but was advised that it could not be done under anaesthetic at Tauranga hospital, only at Waikato hospital; however I was assured that I would experience to pain or discomfort. On admission to the day-stay surgery unit I explained my concerns to the nurse and she made a note of them on my chart. After being wheeled into the theatre I also explained my fears to the nurse who would be assisting my procedure and to the doctor who was actually doing the procedure. I went so far as to ask them to read my previous procedure notes and look at the specific doses so that they knew how much more I would need. I also requested that if I came around during the procedure I would like them to stop, I can still remember saying to the doctor “I am in so much pain everyday as it is that I really don’t want to add to that in any way”. It was my understanding at this point that the team was very clear on my needs and what I wanted should the sedation fail. Just twenty minutes into the procedure I began to come around, I was awake and I could speak and I begged them to stop, the pain was unbearable, I was crying and screaming. The doctor did not stop, instead I was held down as he continued with the procedure. At one point I arched my neck and looked into the nurse’s eyes and said “get your fucking hands off me” I was so angry but did not have the full body strength to fight them off, not to mention I was in a huge amount of pain. I didn’t know this at the time but mum could hear my distress, I was wheeled out to the recovery area curled in the foetal position sobbing, she could see straight away that I was very upset. All of the other patients in recovery were still completely out to it, yet I was able to stand up, walk to my clothes and dress myself, evidence that I was very much conscious! I was ready to walk right out of there and never return but Mum insisted that we see the doctor and get an explanation. The doctor who actually did the procedure was conveniently unavailable so another doctor was sent to see us. I angrily explained what had just happened and Mum who was equally as upset backed me up. The doctor couldn’t tell us why I hadn’t been listened to or why the doctor didn’t stop, all he could offer was an apology stating that the doctor had clearly failed me and that it was a medical misadventure. Afterwards I considered pursuing the matter further, but I just didn’t have the fight left in me and I knew nothing I did was going to change what had already happened. Thus my fear of procedures was confirmed. In addition to this I went for a CT scan, a common procedure with low risks. I forgot to mention earlier that anything you have done in hospital comes with a pamphlet containing basic information about the procedure and its risk and benefits. A CT scan has a 1 out of 500,000 chance of adverse affects according to the pamphlets. I had never had a CT before so I had a good read through the pamphlet as the orderly wheeled me through the maze of corridors and I felt comfortable that it would go smoothly. The imaging department was undergoing extensive upgrades at the time so it was a bit chaotic down there but the staff were very friendly. The nurse reread the pamphlet to me and explained that when the contrast was injected into me I would feel warm sensations and the urge to urinate. As soon as it was injected I felt the sensations exactly as she had described, however instead of easing off after a few minutes the warm sensation began to burn, my throat felt tight and it got hard to breathe, my body broke out in large raised welts and I began to cough. When the nurse at my side figured out something wasn’t right the room sprang into a frenzy, 3 or 4 staff members rushed in, I heard one of the staff shout “oh fuck” as they realised that the emergency trolley wasn’t in the room , it had been shifted during the renovations. My body was having an allergic reaction and I was in anaphylactic shock. I can’t recall the exact order but I was given two injections (one of them was from a HUGE metal syringe like you see in horror movies), inhalers, oxygen and cream for my skin, and it was all under control quite quickly. I think the staff got just as much of a fright as I did; none of them had ever seen such a sudden reaction occur during a CT scan before so it was a first experience all round! As you are probably beginning to understand, my faith in medical procedures was rapidly depleting as my fear increased.

My third and perhaps worse fear was for my own sanity. Endometriosis can be a difficult disease to diagnose, you have to actually have a laparoscopic surgery and physically see it to diagnose it. My symptoms did not fit with ‘typical’ endometriosis symptoms which also added to the confusion. I had had every type of test you can imagine, scopes in every orifice, scans, x-rays and ultrasounds, even a rare test in the nuclear medicine department that I had to travel to another hospital for, and apart from a few small incidental findings all of the tests were clear. I could tell that some of the nurses thought I was exaggerating the pain, they didn’t speak it out loud but it was written all over their faces. The first instance I had where somebody questioned my pain outright was actually another patient. Just to be clear this lady was a right bitch, she was rude to the staff, made it obvious that she was an upper class woman with considerable wealth, who for circumstances beyond her control was begrudgingly using the public health service. In a rare break from her constant self talk she asked me why I was in the hospital, I gave her a brief rundown concluding that the cause of my pain was still unknown. She came straight out and said that it must be psychosomatic and the doctors should seriously consider that I was making the whole thing up. I was so shocked I had nothing to retort, I wanted to cry but I daren’t give her the satisfaction. As time wore on and the weeks in hospital turned into months and I was still experiencing this ‘mystery’ pain my mental health began to come into question more. On top of the not so subtle inferences from the nurses the doctors also made suggestions and went so far as to ask me whether I was having problems in other areas of my life that were causing me to seek attention. To begin with I completely rejected the idea and curtly informed them that the only problem was them not being able to find the cause of the pain. It became harder to withstand the allegations and I began to question myself. I knew I was feeling the pain, but I began to second guess the intensity. I doubted myself and felt anxious all of the time, I had questions running through my mind; was I mentally ill? and would I even know it if I was? How could I convince everyone that what I felt was real? Was it real? I questioned everything and it was really getting to me. Had it not been for Mum’s unwavering support and belief I’m not sure I could have come through it.

Fear had now become another complex part of the journey, one that I am still working to overcome. For a long time I felt bitter about much of the treatment that caused my fears to develop and become real, I have since managed to let go of a lot of that. However a by-product of this fear that I still carry with me is the need for reassurance, even though I am an adult in my own right I feel scared to make decisions about my health and am constantly asking my Mum for her advice and opinions. When I experience pain I often still feel the need to explain or qualify it. These are issues that I hope I will overcome in the near future.