As I mentioned in my last post, over the last few months my menstrual bleeds have grown a mind of their own and require a new treatment plan. I’m currently testing option one, and for the last 3.5 weeks it has held off the bleeding quite well, but this week, comes stage 2 of the medication testing – finding out how well the medication is a raising my factor levels and therefore reducing the severity of my withdrawal bleeds/periods. And since I’ve had almost 4 weeks break from the out of control bleeding, this week is when I’m going to find that out. On Wednesday, I’ll take the last of the new pill I’m on for a week and see how it goes.
Physically, its a big case of just not knowing. I’m anticipating a couple of days at home on the couch with hot water bottles, this pudding , and lots of hot tea. Not to mention meds to stem the bloodloss and hopefully avoid low iron levels like I’ve had recently. But I might also be able to cope alright. I just have to wait and see what happens. Yet despite the unpredictability, its relatively easy to manage the symptoms in a physical respect.
Psychologically, its a completely different game. In a different sport, from a galaxy I’ve never heard of and the rules make no sense. I’m just waiting to see how much crap my body is going to put me through. How much pain, blood loss , how many drugs I have to take, if its the kicker that also makes me sick with the cold I’m currently fighting off very well, how much of an inconvenience I’m going to be to my lovely partner, R (especially sucky because he’s having a week of annual leave and probably doesn’t need to waste even more of his days off taking care of me), how much work I miss out on, how much more my doctor’s appointment and associated medications are going to cost me, and if I’ll be able to make time to spend my winnings on Saturday.
I’ve always found the hardest part of having my chronic illness to be the other stuff that comes along with it. The worries about how bad each bleed might be. The knowledge others are probably judging me for not being social or keeping dates. The money worries (I know we have it pretty good here in Australia, but I usually get floods of bills then droughts for months or years, not a carefully broken down easy to manage flow), the burden to my family, the impact it has had on my education, and missing out on opportunities or even just being able to get my stuff done at work. It is amplified in my mind by the knowledge that stress makes bleeds worse (I’ve definitely experienced this with nose bleeds, where any kind of stress tends to amplify the intensity, it most likely effects my menstrual bleeds, and I’m currently investigating with my haemotologist if it is behind a fairly violent reaction to one of my drugs).
To be honest, learning how to manage all this is a bit new to me. Despite being diagnosed over a decade ago, I was never really given any information on this aspect of having an inherited illness, so its been left to me to sort through. Which I haven’t really! But in order to fix a problem you have to be aware of it, and now that I am I’m certainly going to make an effort to learn how to manage the emotional consequences of this illness. I’m sure you’ll hear more about this from me as I slowly work it out, mess up and try again. And if you have any particular methods for dealing with your own illness I’d love to hear. Coz I’m guessing I really don’t have it down yet…