Kidding Myself

Over the past 20 odd years of suffering the symptoms (and many variants) that we are all so familiar with, I have very (all too) often given into the external pressures of work, or more often my own stupid(man the provider) pride and as soon as the worst of any flare has subsided I have returned to work. More often than not I have coped with the fogginess and forgetfulness and pain, and managed to slowly recover to the point of relative normality within the stressful environment within which I had become accustomed. Then slowly the memory of the worst of any flare would fade into distant memory. I would even manage to ignore or cope with the initial warning signs of any oncoming flare, and yes even cope through some of them, telling myself that recovery was only a day or so away and that if I could just make it to weekend and not take work home with me then I could rest and everything would be better next week. Sometime I was right, sometimes I was wrong, but I also all too often would hide behind my worst and most obvious symptom (abscesses) and the medication given for those. Sometimes it wold be days, sometimes weeks or even months before I would be unwell again. But managing it this way I always knew that a flare was never far away and I found myself, for several years on end measuring my life from one flare to another. Sometimes I would flare very badly and end up in hospital once again being cut, these occasions however always resulted in me taking extra time and care and at least being a long way into recovery before I would attempt to go back to work. Funny how these more serious events and extended recovery time always seemed o be followed by a prolonged period of relative wellness.

Yes I have spent several years kidding both myself and anyone who cared to ask that I was alright, I just had this nasty habit of getting abscesses every now and then. And anyway at least I never had a cold! (I can't remember the last time that I did). But maybe it's the onset of age, maybe a rare attack of common sense (being a man I very much doubt it), but this time, even though I now feel like I am beginning to pull out of it, this time I am not going to give into the pressure, nor my pride. No this time I have taken the time, effort, and sheer persistence to finally find out what this is and to start to deal with it properly, be that through medication or whatever means, this time I am going to get this sorted and either accepted or (dependent on the diagnosis) beaten.

No more kidding myself

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  • I am sorry to hear your story - it is so like mine. I was a teacher (SLD students, and all that can go with that) and took early retirement, which seemed such a good idea. Running away from the undiagnosed problem. I was always SO tired, and struggled through the paperwork with sore eyes, which couldn't focus after 2 hrs, on the pc. Retirement is very good, although I joke occasionally that if I was still working, I'd be off sick a lot!! You have to laugh through the tears (you CAN do that, I do). And when I get tired, I also get frustrated but without the stress. I still argue with the doctors that I may not have Lupus, but as I feel better (mostly) on a low dose of hydroxychloroquine, I may as well take it instead of lots of pain killers which made me feel spaced out.

    This is such a good forum, with lots of people all over the country with similar conditions and good advice. My GP and I are learning about lupus together (they can't know everything :/ ).

    You won't be beaten as you sound like a very strong person; just be kind to yourself, and carry on being responsible to yourself and family. And don't be a man, be a person :) PS a "flare" is a good chance to sit and listen to music/the radio/read a book/or what-ever-takes-yourfancy! Don't feel guilty, it is a responsible thing to do :) :)

  • Thanks for that.

    Given that this time I have resolved to sort this out, I have forced upon myself little option but to sit and listen, read and ponder on many things (yes even through the fog my mind refuse to just stop and not busy itself). To ponder with some amusement at some of the idiotic things that I have done and risks that I have taken with my health and body.

    For example one that sprung to mind today whilst composing the above post, and that gives a shining example of how stupid I can be;

    I was once invited by a friend to take a fortnight holiday in the Galapagos islands. Unfortunately a couple of days before we flew I had begun to feel unwell and had started to develop a large abscess. However I decided that the opportunity was too good to pass up and so off we flew .A couple of days in we found ourselves on a launch in a channel between to minor islands watching with some great amusement as a large pod of pup seals were playing beneath and around us. One by one everyone plunged into the water to swim with the seals. Although by this time my abscess was very large and at the point of bursting, I just could not resist the temptation, so on went the fins and mask and in I plunged with great delight and anticipation at the prospect of enjoying a lifetime experience. As the cold water met my warm body my abscess burst very convincingly, but I didn't care and continued my swim. After a couple of minutes the puss and blood from my wound obviously started to mix in the water and this got the attention of one of the Bull seals that was watching over the frolicking pups, he at first came over to investigate, then recognising the threat he decided to attack and get the bleeding thing away from the unaware pups before it attracted any passing sharks. Luckily for me his first attack was bye way of a warning, and thankfully the boat crew were alert and managed to pull me from the water before he had turned to pursue a more serious attack and I escaped with nothing more that a broken ankle.

    Yes I even managed in my head to justify this and turn it into a positive. After all effectively turned a two week holiday into six, as they wouldn't let me fly the distance home until the cast was off and the swelling down! Never mind the fact that my medical insurance didn't cover anything as obvious as a seal attack and so I landed in blighty not only to a disciplinary for such a lengthy absence but a rather large medical bill..............................After all it was a great holiday!!!

  • This is a great story! But I must say, where was your head that day?!

  • This story made ne laugh!! I would have done the same too, and never mind what might happen. As you say, it's the chance of a lifetime!

  • I have spent my life thinking "I'm alright". Guess I have always been like a baby, never really recognise risks, and when I do I very rarely stop to consider them, especially when there is a slice of life to be experienced.

  • that IS a grrrreat story!

    I totally can relate to your mindset: both before this turning point you've reached, and now.

    So many times over the years I've had some big bad clearly v nasty thing develop while I just toughing it out, telling myself it was "normal"....only to be whisked into A&E (sometimes from work, driven in by a colleague) often ending up an inpatient.

    But I reached my tipping point 3 years ago.....and I'll never go back to that old me...even though the adventures I somehow managed to seize were wonderful...but now, at 60, I've got a life back...and, to my amazement, am doing exciting stuff I never dreamed I could do at my age

    Am wishing you all the best

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