I’m getting to the end of this period. I had almost 4 days of very light bleeding/spotting, then the last two days have been heavier bleeding. All the time I’ve had the same pain levels, the same abdominal bloating, levels of tiredness and headaches. While its fantastic the bleeding is more under control than it has been in the last few months, having all the other symptoms for the previous 7 days, and initially no idea of what was going on with my bleeding (it doesn’t usually take so long to show up) was really stressful. I had tried to ‘plan around’ having this bleed, by stopping the pill mid-week so the worst of it was over the weekend, and my life would be as least disturbed. Given I’ve gone through all of my leave, not needing days off work is a huge bonus – keeps me a bit more financially stable given all my medical related expenses at the moment. But alas, the 2 days I needed off came on Monday and Tuesday.
Having the bleed being outside my control is not something I deal with very well. I think my desire to have my bleeds in my control comes from the few years I had where they were so uncontrolled I struggled with basic functions, like going to the bathroom, making a cup of tea, or showering. Plus, it also comes from the way I think and approach the world. I’ve always appreciated structure, logic, reason and order. My bleeding disorder is the universal opposite, the actual other end of the scale in reality. It is unpredictable, it is both severe and mild, it cannot be recognised or prevented, and it seems to be un-tamed. My mind and my genetics are pulling in different, extreme directions and reconciling it is immensely challenging. So challenging reconciliation is yet to be acheived.
Further complicating matters in my own mind is that the situation I’m in is rare. The bleeding disorder in itself is rare, being severe enough to need daily medications is rare for those with bleeding disorders, and needing to get the whole treatment plan completely reassessed 10 years after initial diagnosis because I’ve built up tolerance levels to everything is rare. I think I’m a bit of a odd case for my doctors, and they’re proceeding somewhat blindly too. Not that I have an intellectual issue with doctors taking a best guess for an unusual situation (what else are they going to do? I certainly don’t expect even medicos to know everything about everything!), but I think underneath, lurking somewhere inside me is “why is this happening to me? What the hell is going on? Why is this happening now? Why am I being the tester for this? Surely its happened to someone else? Why won’t other things, like food and exercise be given the status they should have for my treatment? ARGHHH!!!!!”. Or something like that.
I’ve only recently become aware that while my conscious mind may be ok with most of what happens to me, or be able to understand it, there is still part of me that is struggling. And this is causing stress, I can feel it, my lovely R can hear it when I get all tired anc bitchy at him, and my body is using it to create a severe reaction to a medication I inject on occasions (you’ll hear about that next week after I go in to the hospital for some tests). The primary idea I’ve had to work this out is meditation. Which I’ve always sucked at, I’ve never been able to shut off the nattering and rambling, the insane internal monolouge of crazy that flows through my head. The closest I get is the savasana at the end of my Barre fusion class each week, and even then its more physical than mental, turning off the crazy train is pretty damn difficult. So what has changed my mind on this? I recently watched a vlog by another woman with an inherited blood disorder and she mentioned she uses meditation to help calm her mind’s response to her illness and needle use. So I think its worth a re-visit.
If you have an inherited condition, do you get stressed by it? Have you tried meditation techniques, what has worked? Have you ever felt like or been the first person with your medical history your doctors have treated?