I wanted to write a positive post. I am mostly feeling positive. However, my health has been interesting again. I say this in the full knowledge that someone endlessly telling you their symptoms is profoundly uninteresting, except to the person in question who is ‘enjoying ill health’. However, I do need to write things down just in case I need to go and bust some NHS balls, so I’m going to write it here, and at least you have been warned, and can skip this whole post.
Last Monday morning I started to feel really dizzy. I assumed, at the time that it was down to me being mostly furious all day with Uber. I panicked that I was reaching peak rage, and might die of an Uber related aneurysm, and was annoyed at how ironic that would be after everything else. I refused to take my BP (I am supposed to take it 3 times in succession, twice a day) because I just couldn’t cope with any bad news
When Jason got home from work he, sensibly, took it for me. It was normal. Like properly normal. I still felt as giddy as a kipper. This continued until Wednesday when a friend suggested it might be that my BP was too low. Given that the readings we were taking were settling to normal levels on the third read, she suggested that my white coat syndrome was still distorting the readings, and when I was going about my day to day business, I might actually be experiencing low blood pressure. So I cut my 10mg pills in half to test this theory, and booked a GP appointment. Thursday and Friday my BP was ok when I took it, and I didn’t feel giddy all day. So I went to the GP armed with this information to ask to come down to the 5mg dose.
Let me say at the outset, that I got what I wanted and am now on the 5mg dose, which was the goal. However, the appointment was frustrating to say the least. Last time I saw him, he was willing to entertain the idea that my BP is linked to my hormone levels, which is why it still fluctuates weirdly, despite me being on meds. He was willing to entertain the idea that it doesn’t fluctuate quite as wildly post-surgery as it did pre- surgery because I don’t have major surgery hanging over me, and I spend less of my leisure time with people telling me I’m going to have heart damage and a stroke, which surprisingly is much less stressful for me. He was happy to talk about the fact that my goal, which is to be off meds entirely, was possible, and we could wait to do any serious interventions until my oestrogen levels settle, which may take a few months.
This time however, he was not happy that when my readings settle they are on average 125/83, which apparently would have been ‘perfect’ a few weeks ago. He thinks it’s still too high. He wants the bottom figure in the seventies now. He has moved the goal posts when I know that a reading in the low eighties is actually ok. It’s not my first BP rodeo, and the fact that he was so negative, really pissed me off.
He is not happy to accept that the first higher readings are white coat syndrome, or that the days when it is all over the place and stays all over the place are oestrogen related. He wasn’t particularly thrilled about bringing the dosage down, despite the fact that I’d had two days of not being giddy on a lower dosage, and he had previously said that if the readings were coming down and I was getting symptoms of low BP we should definitely drop the dosage or even come off it.
This whole situation was really upsetting, but there were two things which were, to my mind, beyond the pale.
Firstly, he started talking about the fact that some women, after hysterectomies have high BP and I might be one of them and it could be linked to my hormones, but not in a way I was saying. He started to try to introduce the idea of me being put on some kind of HRT to bring my BP down. I pointed out that this was the exact opposite of what the entire hysterectomy/decapeptyl months were for. I pointed out that when I had my full complement of hormones, I would have killer migraines every month, and if there’s one thing GPs do acknowledge it is that with migraines comes insane BP, and that maybe, just maybe, this yet again proves that my oestrogen levels are directly linked to my BP, and that putting them back would make matters worse. I also pointed out that by doing this, I might as well have not had a hysterectomy in the first place, as the deal with the consultant was that we had proved that the hormones are responsible for my continued ill health and that I was well without them, and I would under no circumstances be having HRT. He shrugged and said he would need a letter from my consultant to stop him pursuing this if my BP didn’t settle down on its own.
The second thing that really upset me was that he had asked me to monitor my BP and to come and see him if there were any anomalies. I hadn’t wanted to. I hate being at the mercy of doctors and constant testing and endless pill adjustments. I had agreed because I thought it was important to meet him half way and try and toe the party line. It seems I might as well not bother. At the end of the appointment he gave me the prescription for the 5mg dose, made it a six month repeat and basically intimated he didn’t actually want to see me again about it.
What was most offensive and upsetting was that as I was leaving he said that if my BP went into the high eighties/low nineties or higher, I should not come and see him any more, but I should know that these figures are serious threat to my health and could cause me to have a stroke, and what I absolutely must do in those circumstances is go to the A&E where they will give me drugs sub-lingually to stop me having that stroke.
This is exactly the kind of scare mongering I was talking to him about earlier in the appointment. The scare mongering that I have repeatedly explained does not help. And is not in fact, helpful to anyone. I have been living, for the past couple of months with blood pressure in that ball park. I lived through three pregnancies with pre eclampsia with blood pressure in that ball park. If I rushed off to A&E every time my blood pressure hit that zone, I would be permanently in residence and the city’s biggest single drain on resources.
I came out feeling like shit. I had thought he was on my side, that he was actually listening to me, and that he was working with me, rather than rolling over any of my concerns or the things that I know to be true about my own body, because I live in it. Apparently not.
On Saturday night, watching telly with Tallulah I started to get a visual migraine. I haven’t had a migraine since weeks before my surgery. Visual migraines are strange because they’re disorienting and deeply unpleasant but generally you can head the pain off at the pass, because the pain comes later than the visual distortions and other symptoms. I took some pills and got Jason to take my BP out of interest. It was high. Unsurprisingly.
I spent the night on the sofa. The visual stuff flared on and on and made me feel really disoriented, but worse was that fact that I had hot flush after hot flush in a rolling succession that went on for hours. In the morning I had a weird, throbbing headache, my boobs were incredibly tender and my taste buds were all over the shop. I gave up trying to be brave and cried and cried. I felt like shit, and then after crying it out, I felt a bit better.
In the night, as I lay there, I kept wondering whether I should go to the hospital. I kept wondering whether I was actually having a mild stroke. I kept replaying everything the GP had said and second guessing myself. It was shit. It did not help one iota.
The next day after I’d finished crying and gone off to pull myself together I thought about what had happened to me over the weekend. On Saturday, when I was out and about with Tallulah I had been craving chocolate (chocolate is not really a thing I actively crave any more, although it is delicious), which we had all commented on that evening before my migraine started, as being unusual.
Craving chocolate is, for me a PMT thing. Breast tenderness, rolling hot flushes, tearfulness, changes to my taste buds, and MIGRAINES are a hormonal thing for me. They are what happens when I am having a period. Only because I don’t bleed any more, I hadn’t thought about it as being hormone related, even though I know that my hormones will take a few months to fuck right off. I just decided, in my tired, ill, state that I was probably having a stroke, because some well meaning GP had told me that it was more likely than the things which have been happening to my body for decades. Last night, when I was starting to feel better, Jason took my BP and it had already started to drop.
I’m so fed up with having to fight to be listened to. Every time I go forward three steps it seems like the system pushes me back two. I know I am making progress. I know I am getting better. I know that everything I believed to be true about my condition, seems to be being proved to be true as I go on this journey, but it is infuriating that progress is hampered by those who are supposed to be helping me, not hindering me. I know I am tough and I can do this, and every time I get knocked down I get back up again and keep fighting, but sometimes, when I am tired, and low and in pain, I really wonder why it is necessary to have to fight so hard. Sometimes I think about all those people who are more poorly, who are more tired, who are less angry and determined and who don’t have the ability to fight like I am, and it makes me sad. So that’s how I feel today, battered, bruised, determined to keep going, and yet really bloody sad.