When I first saw you, you presented with the highest number of Lyme symptoms I have ever seen in one person. You were really very, very ill. I can not believe that your regular GP missed it. Especially as you had the EM rash and a defined onset.
No, not a dream but the words of my wonderful consultant yesterday.
I was also told that I would never have 100% cast iron test results and in any case they were not that useful per se anyway and it was probably a waste of money testing for all sorts of things when all the clinical signs were there in such a massive number. And yet every other medic I have consulted over the last miserable, bloody, frustrating 16 years had missed them, ALL. A point not lost on me, WH and the consultant.
The medics who asked if I was really that bad, the medics who thought I was hysterical, the pain specialist who said "Well of course a lot of these symptoms are not proved to exist anyway", the medics who said "You'll just have to work through it", the medics who said "Try exercise", the medics whose faces fell when I walked into their surgery, the medics who said "Get out more," the medics who told WH to let me get on with it, the medics who said "really it's not that bad" the medics who said "Here take these antidepressants, you'll feel much better," the medics who told me to get a life.
I only wish.
This revelation seems to have really affected me. I know I was told before that Lyme was 99% likely and then the treatment started working so it looked as though the diagnosis WAS right, but never before had it been said in so many words, so definitely,categorically: "This is what you have got and have always had, since 1991."
So today I am still weepy and feel like I have wasted 16 years of my life but at least the end is in real sight now, it's not just a maybe. And also the realisation that all these odd things were not just me being awkward/attentionseeking/lazy they were a REAL illness.
And how many more people are there out there like me?
ETA Whats with the colour?? Blogger misbehaving again, at least it beats my dashboard coming up in German which was last week's surprise.
3 comments:
"At least the end is in real sight"
*raises glass* Here's to you, Jas. And to your future!
Thanks very much! Been away this w/e, so only just seen this.
I'll be having a few glasses myself. LOL.
xx
I can really relate to your frustration. I've had it up to hear with being dismissed, with contempt, by docs who don't believe in Lyme Disease. I'm so tired of this crap. And I'm tired of not being able to get help. It's mind-numbingly frustrating.
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