The Martian Princess and The Bear: A Shared Journey Through Chronic Illness

When I first met The Bear, I was a party-girl; drinking, smoking and dancing into the wee hours.  Spontaneous and unpredictable, perhaps even slightly unhinged – but not enough to fall into the cliche of a terrifying histrionic.

We were from different cultures but shared similar, mildly chaotic upbringings. We both had an overly religious mother and a shamelessly philandering father. My dad stayed (essentially meaning he used the family home as his base of operations while he carried his myriad indiscretions) but The Bear’s father left – quietly and without fanfare, leaving The Bear and his sister to wonder if and when he was coming home.  Much like my parents’ marriage, a boy who lost his mother marrying a girl who lost her father, our backgrounds should have been a recipe for disaster; and as neither one of us had had any meaningful therapy, we were dragging all of that baggage into the relationship with us.  But somehow, we were making it work.

We seemed to be mirror images of each other, with both of us doing the same thing only believing the other was going about it in the opposite way.  We would go to the cinema and watch the same movie but give wildly differing descriptions of the film we had just watched.  With those little quirks constantly playing in the background it became impossible for either one of us to become bored with the other: we were constantly looking at each other in confusion or amusement, but rarely in pedestrian familiarity. And we didn’t care how odd a couple we appeared to be.

He understood when I decided to quit smoking, was a little perturbed when I quit drinking (I hadn’t yet reached the age of thirty, but I felt as though I’d had a lifetime’s worth of alcohol) and seemed annoyingly inconvenienced when I chose to send dairy down the same path that I had sent meat and fish.  But, in time, he came to realise that I’d just dropped some bells and whistles – I was still the nut job he’d fallen in love with.

The only glitch in our bliss was the fact that my menstrual cycle was truly Hellish.  Before I made the transition from vegetarian to full vegan, my PMS made me more than a little difficult to be around; and the horrendous pain I would experience determined that several days would be lost as nothing was capable of stopping me from writhing around in agony.  I had been raised to believe that this was simply a woman’s lot in life; so as the symptoms worsened to the point where, for at least two days a month, I was bent double on the toilet while digested or semi-digested food tried to escape from both ends, I still accepted what was happening as being ‘normal’.

One afternoon, close to the end of my work day, I was forced to admit that my constantly reinforced idea of normality was askew.  I am usually one of those people who make attempts to ’style-it-out’ when something is clearly wrong (I would rather alter the way I walk entirely than display the vulnerability of each painful step – or use my crutches as often as I should); this was, in essence, the reason why so few people realised just how great my suffering was.  But this time, as I struggled to remain upright let alone fully composed, I knew that faking wellness was something I was gong to fail horribly.

I took a cab home that day, unable to stomach the thought of waiting on the train platform, and with the full knowledge that there was no way I could govern the ten-minute hill-walk from the station to my home.  I thanked the clearly worried driver profusely as I laboriously clawed my way out of the car, before crawling on my hands and knees up the steps to my first floor flat.  I sequestered myself in the bathroom, hunched down on the toilet, raising my head only to vomit into the sink.

Considering my menstrual disorder to be ‘just another part of womanhood’ meant that I was woefully under-informed…

Unbeknownst to me, The Bear had been standing outside having a cigarette while the bulk of this nightmare was occurring.  I hadn’t been able to straighten up enough to reach a light switch, so he assumed that I still hadn’t arrived home from work.  To say he was shocked to find me curled up on the bathroom floor would be something of an understatement.  The throes of an (as yet) unidentified illness had stolen my voice – my communication was guttural; grunts and strangled monosyllables.  My lower abdomen had distended to the point where a ‘John Hurt, Alien’ moment looked inevitable.  The Bear did what I knew had to be done, but had been too scared to admit – he called an ambulance.

Considering my menstrual disorder to be ‘just another part of womanhood’ meant that I was woefully under-informed about the possible, and manifold, malfunctions that can occur within the female reproductive system. As such, and because I hadn’t stepped into an Accident and Emergency department since I chipped a bone in my little finger at age seven or eight, I was scared. ‘Period pain’ isn’t supposed to put you in the hospital, so what was really going on?

It was already quite late in the evening by the time I was lifted out of the ambulance, so any and all treatment I received was based around pain management rather than attempting to garner a diagnosis.  Nobody was willing to speculate, as doing so could have led to a world of legal trouble as well as a tonne of unnecessary stress for me.  I was admitted to a side room (because vomiting, regardless of the cause, makes a patient an instant infection risk to the general population of the ward) with the promise of a full investigation beginning in the morning.

Even with all of the day’s unexpected drama, due to the exorbitant amount of painkillers I’d been pumped with, I fell asleep rather easily.  When my eyes finally prised themselves open, sometime after sunrise, I saw that The Bear had spent the night in the uncomfortable, high-backed visitor’s chair to ensure that I didn’t awaken alone and afraid; how he managed to swing his overnight stay with the nurses on duty still remains a mystery to me! What neither of us realised at the time was that we had just stepped onto an endless road…

Before that day I had never even heard the word Endometriosis but that was apparently what I had silently been suffering from for at least seven years.  The pain that had forced my hand, however, had been caused by a tear in a chocolate cyst, approximately the size of a grapefruit, that had led to a back-flow of blood into my right ovary.  The ovarian issue was explained in a very clear and concise manner – the Endometriosis, less so.  I was still unsure what I was dealing with when I was discharged with the agreement that an operation date would soon follow. That operation became the fist indication that, although he clearly cared, the Bear wasn’t that interested the details.

How you are treated after day surgery is highly dependent upon the hospital itself.  This particular hospital was extremely diligent about after-care, including how life was conducted once you were off their grounds.  I was told, very clearly, that I couldn’t operate any ‘machinery’ (including a kettle!) and that I had to ensure that there was someone who could stay with me, for at least twenty-four hours. The reasoning was that there is no way of truly knowing how a person’s body is going to react while there is still residual anaesthetic in their system; with a tangible risk of the person passing out, making a cup of tea could become quite a dangerous endeavour.  With that in mind, the medical team had to make sure there was somebody to catch me if I started to fall – without a guaranteed safety net, they would cancel the procedure.

I had no comprehension of the impact that synthetic hormones would have on me…

I relayed this information to The Bear and he agreed to work from home that day.  At least, that was his initial reaction.  A few days before the operation date he told me that there was a strong possibility that he would be called into the office.  I was livid.  I tried my damnedest to get a straight yes or no answer from him, whilst reiterating the fact that the operation will be cancelled without this assurance.  Still receiving nothing but a vague ‘maybe’, I called my sister and asked if she could step in. She agreed and booked a day of annual leave.  When it came to the crunch, there was no urgent call into the studio; and I was left feeling guilty for asking my sister to use her holiday time to do what my partner had been ‘umm-ing’ and ‘ah-ing’ about. Making sure I had a backup plan became a theme I had to deal with as the surgeries stacked up over the years – but The Bear was also to become acquainted with his fair share of frazzled nerves.

Women with Endometriosis get a lot of hormone treatments thrown at them, and I was no exception. Having always used the ‘barrier method’ for contraception, I had no comprehension of the impact that synthetic hormones would have on me.

Firstly there was all the blood: initially dismissed as breakthrough bleeding, it soon became apparent that there were certain elements of that contraceptive pill (the name escapes me) that my anatomy didn’t like.  The second ‘pill’ caused almost as much pain as the illness itself, only without the two-week reprieve I would usually get as I moved into the luteal phase of my cycle.  It felt akin to somebody stabbing me with a piece of jagged flint, then twisting it interminably.  Eventually, an uneasy compromise was found with the progesterone only pill, Norethisterone. I was still bleeding on a daily basis, but the pain was kept at a manageable level and any potential cysts were suspended in a perpetual state of infancy.

Unfortunately, it was to be an asymmetric trade-off. For the 30-40% reduction in symptoms, I had to deal with inexplicable weight gain and the lowest sex drive I had experienced since hitting puberty. I never became openly hostile to The Bear’s affections, and I clearly still found him attractive – I just had no compunction with us ‘living like cousins’.  To make matters worse, on the rare occasions that we did actually have sex it hurt – a lot. Any physical arousal immediately left me with a nausea-inducing pulsating pain in both of my ovaries, making them feel like two supercharged bombs just waiting to destroy me from the inside. I could barely wait for it to be all over so that I could curl up into a foetal position and ‘squeeze’ the pain away.

The bear kept a very level head through all of this.  Maybe it was because he always believed that the situation would change, or the condition would be cured (at that point even I believed Endometriosis could be completely eradicated with the right treatment); but I felt nothing but support doing the time that my body was essentially being wrecked by the one thing that was supposed to save it.  He refused to remark upon the fact that my weight had crept up (despite my eating habits remaining the same) and patiently waited for me to fall back ‘in lust’ with him.

Almost seven years after my initial diagnosis, I discovered through a random blood test that the Norethisterone was doing more than just annihilating self-image and erasing my sex-life – it was destroying my liver.  My GGT levels were elevated which, a locum GP told me, usually only occurs in heavy drinkers.  Having quit alcohol entirely before I was even diagnosed, I knew that the most likely culprit was the artificial pregnancy hormone.  This was the first time that I truly enlisted the help of the internet  – and  Dr Google agreed with me.

It was almost a given that gluten would have to go…

When I returned to my GP, he told me that the doctor who claimed the damage could only have been created by heavy drinking was misinformed – I had inadvertently been using what should have been a short-term solution as a long-term treatment.  Why I hadn’t been informed of the risks of prolonged use is beyond me, but I knew at that point that it was time for me to step away from all medical intervention (after all, I wasn’t dying…) and  take care of my problems myself.

After reading the book ‘Endometriosis: A key To Healing And Fertility Through Nutrition’, I decided that with careful control of  what I consumed, I would be able to exert a similar control over my symptoms.  It was almost a given that gluten would have to go, but I also had to modify the amount and type of soy I was consuming – anything unrefined (like soy milk) was a no-no, and all soy consumption would have to be eliminated once I reached that all important luteal phase.

However, stopping any medication will have its consequences, and Norethisterone stayed true to that course.  Let’s just say that Niagra Falls had nothing on me.  Before I started taking that insidious little drug I would usually have about two hours before I would have to make my excuses and head to the bathroom: after; I had half that time if I was really lucky, but forty-five minutes became the standard.  Heavy bleeding is a known side effect after the cessation of Norethisterone, so I hoped this was a temporary glitch: besides, the upswing was that I was returning to my regular dress size, and my suppressed physical desires were returning – much to the satisfaction of The Bear.  For a little while we experienced the lion’s share of what most people would regard as a normal relationship and, after seventeen years together, we decided to make our relationship official in the eyes of the law.

The heavy bleeding wasn’t a glitch.  It had, for better or worse, become part of my new reality; but it wasn’t something my body could sustain, and the toll became more and more obvious. I had become used to being out of breath after climbing a flight of stairs, and my heart racing from the slightest exertion, but when I started to experience those ‘effort-created’ fibrillations whilst lying down, I knew that I had to take some sort of action.

That action (getting my iron levels checked) resulted in both an emergency blood transfusion and a slow-motion medical car crash. (To anybody who has read this post, I apologise for covering old ground…)  There was something about the blood transfusion that my body took extreme exception to.  It may not have been the blood itself, it may not even have been the procedure (which did start out with a lot of pain due to a problematic canula), it may simply have been the final straw for my already battered and internally scarred re-animated corpse.  Whatever it was, within days of being told I would ‘soon be feeling better’, I was feeling so much worse.

Those resting heart palpitations seemed like nothing in comparison to the feeling that somebody was continually trying to drown me.  Initially believing that I hadn’t allowed myself the adequate rest period that I needed, I assumed that if I just took life at moderately slower pace, I would eventually feel that elusive ‘wellness’ that so many members of the medical staff had promised me.

After approximately three long and wearisome months of ‘waiting’, I decided that I had little choice but to get myself signed off from my part-time job.  Over the next year and a half, I literally exhausted my sick pay allowance as I spent more than six months trying to will my batteries back to something resembling a full charge.  During the times I was able to work, I could barely manage to fulfil my contracted hours.  The basic pay was fine for a student living with their parents, but for those of us trying to fully ‘adult’, we needed the overtime.  For the first time in our entire relationship, I was being financially propped up by The Bear.

…if you come home from work and your spouse is in bed, just accept that that is where they need to be at that moment…

That essential financial support eventually became everyday, mundane, living-life-as-a-human support.  I was using what little energy I had to fight with doctors in order to be taken seriously, but that was leaving me with very little in reserve for the normal rites of day to day living. On a good day, I could just about shuffle between the bedroom and the bathroom; on a really good day, I made it as far as the sofa.  Our home began to resemble Steptoe’s Yard as I needed so much help with every aspect of housework, and The Bear found himself slipping further and further into the role of primary carer.

It took almost three years (with a lot of encouragement from my awesome osteopath and a final nudge from this legend) for the diagnosis of Fibromyalgia to be made; but what should have led to treatment and an attempt to return to a semblance of normality, led instead to confusion and a medical stalemate that is still yet to be resolved.

Remember a few paragraphs back when I mentioned that The Bear isn’t really interested in details?  Well, his disinterest sky-rocketed once I had a diagnosis.  I can only speculate as to why that was, but his refusal to hear what I was trying to tell him about the condition has led to some very fraught moments.  Despite the fact that he’s seen me at my lowest points, where I barely had the energy to feed myself, but still refuses to learn the difference between ’tiredness’ and ‘fatigue’ is something that makes my blood boil. (Note to any spouses of the chronically ill: if you come home from work and your spouse is in bed, just accept that that is where they need to be at that moment – regardless of how much you want their company in the living room…)

As we approach this impasse in my treatment, it does feel somewhat as though we are looking in completely different directions.  However, I do try to remind myself constantly that it took The Bear a long while (years, in fact) to understand just how much havoc Endometriosis can wreak upon a sufferer: so I may simply have to be patient and wait for him to want to fully comprehend what is wrong with his wife. The difference now is that Endometriosis would grant me a two-week reprieve, (as long as I didn’t stuff my system full of perceived poison) and it has the clear finish line (in theory) of the Menopause.  Fibromyalgia is constant and may follow me to the grave.

But perhaps it’s that very same lackadaisical attitude that has kept The Bear by side throughout all of this, even if it does sometimes feel as though I’m being dragged up a hill by my hair. I’ve come across so many Endo-Sisters in various support groups whose partners traded them in for someone ‘less sick’, or did not have the coping mechanisms to  be part of the support network for someone who is disabled. Maybe embarking upon this journey without a map is what has enabled The Bear and I (as much as we infuriate one another) to keep moving forwards, despite the discernable obstacles.