So How Did I get Here?
Well being a bloke..............................the hard way, I suppose!!!
Let me introduce myself, and as briefly as possible try to explain who I am, and where I am at.
I am Adrian, I am 48...........ok, ok, nearly 49!! And if indeed it turns out that I have Lupus (as yet to be confirmed), then I have probably had it for around 28 years, or more, and being a bloke I have managed to disguise, make light of, cheat, come up with clever simple bloke work arounds to my many symptoms, and lied (yes even to myself at times) just get on, just to get through whatever I have been experiencing at the time.
Way back in the distance and fog of memory, I had a very high pressure, very consuming career and I was responsible for making snap decisions regarding tens, frequently hundreds of millions of pounds worth of business on a daily (almost hourly) basis. I would work an average of an 80 hour week (often much more), and for relaxation I ran a charity and diving school aimed at disabled and disadvantaged children. I also dived (Scuba) a minimum of 3 time per week often night dives where I could fit them in and every weekend all over the world. I have over 30,000 hours of logged dives to my name. I even took a long weekend in my mid thirties to fly to Peru and dive Lake Titicaca (the highest navigable lake in the world) just to take some pictures.
Slowly, but surely though over the years I let these activities, these responsibilities fall bye the wayside one after one (yes even the exciting career), often using one excuse after another, lack of time, too busy, or even just needing to face another exciting challenge (which obviously never materialised). Never once telling (even myself) that I was slowly but surely losing the ability to generate the energy or even the motivation to sustain them anymore.
It started (I think) one evening with what I thought was going to be flu, I applied copious amounts of cheap vodka and tucked myself up in bed. I drifted to sleep safe in the knowledge that I would awake the next morn feeing terrible, and the fever washed over my slumber. I woke early the next morning in some discomfort and more than a little confused as to why I couldn't move properly, I soon discovered the very large (child's football sized) perianal abscess that had developed overnight. It was laid open in hospital a couple of days later, but it proved to be a plague that I have suffered very regularly ever since. Perianal, and Pilonidal, became my buzz words for a number of years. I had a name, I knew the symptoms of their onset and I very quickly learned how to deal with all but the most serious of them myself so that only a very few would result in me having to attend hospital. Having said that I have had the same procedure over 20 times to date. But much more often I would (and still do) lay in a hot bath and open them myself and then follow that up with a quick trip to the GP to acquire some more antibiotics just to avoid further infection, always of course playing down the seriousness of my suffering. Like I said I am a bloke and I found and continue to find simple practical work throughs and tricks to deal with and cope with many of my symptoms. I go to the GP or hospital only with the worst (most unbearable) of my symptoms at the time and as soon as I get an explanation or diagnosis that makes some kind of sense to me, as soon as I have a name and am able to do a little research, then I am happy and assured that I will find some way of dealing with it, some way of carrying on, of coping.
Eventually, around 20 years ago a junior consultant suggested that my abscesses were HS..........BINGO!!! I had a new buzz word and was even more assured that my self coping was the way forward. I knew that I was safe self caring through the now very regular attacks. I knew the symptoms of onset, hell I even started to plan my care by ordering antibiotics in advance when I knew that I only had a couple of days before an attack. The flu like symptoms were a dead giveaway. I even reasoned with myself that I never seemed to get a cold or flu, or indeed any other kind of bug, and yes my condition was embarrassing but, I now was very practiced in dealing with it and I had after all only worsened my condition once in all this time and I could now cope better with my symptoms than I could with the dreaded flu. I batted on!!
The stomach upsets and uncontrollable bowl was some years later explained as Crohn's...... BINGO once again! Around 4 years ago the stomach discomfort (my code for excruciating pain that would often knock me off my feet got given the label of Diverticulitis , once again off I toddled with my little label, happy as Larry that I could explain it away, that I could cope. The summer rash was explained away several years ago as 'prickly heat'. No matter to me that none of the preparations that I was prescribed or it ever worked, that was just me, just he way I am, and I would just have to accept the fact that when the sun came up I was going to get a rash that would not recede until the onset of autumn (at the very earliest). The blinding headaches I explained away as stress, or too much VDU work or just being run down. The stabbing pains in my wrists, my knees and ankles was just a sign of me getting older, or the inevitable result of the terrible wear and tear of my abused body. The weakness and pain in my thumbs that made it impossible to even pick up a pen were............just me being weird. My feet swell up the second the seasons start to warm up to the point that wearing shoes and socks becomes painful, sometimes impossible, this one was easy and didn't need a name, for several years now as soon as the weather warms I start wearing flip-flops and shoes 2 sizes too big for work! The inability to any longer just leap out of bed in the morning as I once did, because of either the crippling pain in my body, especially my sides and lower back, or even without the pain knowing (through bitter experience) that if I do just bounce up then my knees and ankles will just fold under me is just explained as me just getting older.
You see I am a bloke, and I have been (and am still) bloody useless with my health. I have (up until now at least) got away with it.
Then around 4 months ago I once again started with a bout of abscesses and although I prepared myself well and self cared as usual, they persisted and I continued to feel ill for a number of weeks, gradually becoming weaker and ever more depressed up to the point around 4 weeks later when I had run out of energy and had to succumb and I had little option but to sign myself on the sick. Even though my working week is now much reduced and I now work no more than a 36 hour week in a very relaxed undemanding job, I could no longer just get up and carry on. I consulted my GP, and the only other titbit of information I allowed him was my depression which I readily explained away as being caused by personal pressures. He signed me off with nervous tension and away I went to recharge and self heel, only this time it isn't happening and I appear to be getting gradually worse. The abscesses have stopped (thankfully) but the other symptoms that would normally assuredly begin to fade seem to be getting more intense. I was due back at the GP surgery late last week for the results of some bloods (the GP was investigating the presence of Celiac) and after several years of constant nagging from my mother, and at the insistence of my new partner, I blurted out nearly all of my other symptoms.......................................it took him about 2 seconds to suggest Lupus and he highlighted that I had shown several markers over numerous years to suggest the illness but no mention of it was ever posted with any of my several biopsy results. He has referred me to a Gastroenterologist for further investigation.
So here I am..............a bloke desperately seeking information so that I can build my coping mechanisms, and yet the more that I learn (for the first time in my life) the more I become scared. I am in need of making contact with someone who knows what I am going through, understands the next stage(s) and how diagnosis will happen and what happens after that.
OOOPs sorry that was longer than intended