Back to Blog
Normal.14/4/2024
It is a shame that it takes many chronically ill patients so much time and self-advocacy to get a solid team together to support their health and well-being. Once it is in place, the fear and dread remain at the idea of any changes. New people may bring back the old experiences.
The bigger and stronger the choir, the more it can allow for a false note from one person, or a pause for breath by another. It is worth the investment, in my opinion. On the whole I now have a brilliant team. By its mere existence it creates pressure on new professionals joining to step up to the plate. It appears to have an internal safety mechanism, which makes it easier on me, leaving a little more energy to spend on things that ensure my quality of life in other ways. Lately, of course, most of that has gone to my book ‘Recognise ME’. To a lay person it may sound odd when I say what a relief it was to hear my GP almost finishing the sentence she was inadvertently about to utter, ‘in other circumstances, I might say chances of this happening are slim, but you are not no…’ I laughed, as did my husband and the doctor joined in. It is a wonderful acknowledgement, rather than an insult, when a physician states I am not normal, if it means they are prepared to expect the unexpected. This was the case, as I consulted her about the ongoing abdominal issue. The pain is still at a level at which it was initially assumed to be due to kidney stones. That should give some idea as to what I have been going through for weeks now. I have an appointment with my favourite gastro- enterologist at the end of May. It has been years since I saw him. He has moved to a university hospital further away and become a professor there. He was always clued up on my combination of conditions, and willing to work in tandem with me. He is worth the wait and the drive. The GP and I were speculating what could be the cause. We were trying to decide how to deal with it until we know more. Tears rolled as I expressed my fear at having countless investigations performed again, only for the cause to remain a mystery until in years to come, by accident, proof that there is a physical issue explaining it all is found. Together we agreed to try some medication that helped in a similar situation over 20 years ago. Only, it turns out it is off the market at the moment. Honestly, if any of you happen to have a spare packet of Lynestrenol (a.k.a. Orgametril) lying about, please send it to me. Equally, if you know where I can get one (preferably, legally…), please let me know. Meanwhile I have tried to identify patterns in response to lifestyle, but it is becoming increasingly clear that gives me precious little control over the symptoms. Painkillers are, again, the answer. I am trying to stop myself from seeing this as a failure, after having managed to reduce my heavy schedule to almost zero after my neck operation. Thankfully my memoir and its launch have offered distraction. It is, also again, a balancing act and a case of prioritising to get done what needs doing. It is pretty much as Justine Steckling (a.k.a. Bipolar Beauty) and I discussed in relation to our recent interview. The fact that we look like we are managing, despite both claiming to be in severe pain is due to being well-practised. It has reminded me of a lecture on optimum stress levels, which was part of my OT training. With the support of my family, my publisher and my friends, I am managing to keep the pressure at the exact point where it motivates me to perform at my best, accepting that that best is affected by the circumstances. Exciting things are happening. We are set to go to the UK mid-May for the launch and to give a few talks, including a couple for the University of Leeds. I will be speaking to ME-patients in New Zealand online, I believe that is in the summer. The pre-publication version is almost ready, a press release has been written, the official photographs from the shoot have been received, and we are set to start receiving pre-orders soon. If you would like to be kept informed and receive invitations to any upcoming events, make sure you are on my mailing list!
1 Comment
Read More
Shoshana Korets
15/4/2024 05:54:54
What struck me as I read this is both how different and how the same we are. Crazily cramping muscles, in reaction to a tetanus shot drove me back to my PCP for help, in part because he’d…misrepresented the type of shot. He kindly prescribed some muscle relaxant as I searched like a madman looking for possible causes of the cramps. Fell twice before the prescription came through, only to discover I couldn’t take it. I started by looking at its ingredients and found one bad for my struggling liver and another my ND wants me avoid for now. But when I mentally stepped back, I wondered if I’d ever be able to take prescription drugs as I once did, with “Ultra-Processed People” still ringing through my head….
Reply
Your comment will be posted after it is approved.
Leave a Reply. |