Oscar is 11

Dearest of dear boys,

Today you are eleven.

Eleven years ago this morning you came into the world a small, fat, naked bundle. Our failure to pack adequately meant that the nurses handed you to us swaddled in a hospital blanket.  Then they put you in the ugliest, yellow knitted hat in existence. By the time you’d finished crying for your lunch you very much resembled a pimple about to pop.

You’ve come a long way since then, particularly in terms of height and sartorial leanings, although your yearnings for lunch are still as strong.

Today as we went out for your birthday lunch and you slipped your hand into mine, it was most apparent that it won’t be long before you are able to loom over me, just like your sisters. Your legs seem to be lengthening by the day. I note that this year I will have to make extra financial accommodation for trouserage. It may come to paying by the yard.

A good job I love every particle of you, to your very bones then. There’s clearly going to be a lot more of you to love in the coming year.

This year you have done me proud, young man, for that is what you are now. You may not need quite as many cuddles. You may walk yourself to school and back, and be the proud owner of your own front door key, but you are still the kindest, most thoughtful, most generous hearted boy I know.

In the last year you really seem to have found your groove. I love your excitement for everything you do, from basketball to hula hooping to acting. You meet every challenge with enthusiasm. I am particularly proud of this year being the one you conquered so many fears and came out the other side stronger, more confident and happy in your own ability to do whatever you choose to do.

I love that finally, this summer, you had a holiday like I remember summer holidays from my own childhood. Bikes permanently dumped outside our house or your friends houses, endless picnics, park trips, and noisy games with an ever changing mob of friends, both boys and girls. It’s been wonderful to see your confidence grow as much as your legs.

It’s great that you’re finding your feet, but I don’t want you to abandon us just yet, please. You are such an important part of our family, and we love what you add to the mix.

It’s particularly wonderful for me, how you still read to me every day, and our journey into the world of Pratchett continues to grow and deepen. It’s a privilege to share my pleasure in it with you. I love that you have branched out into your own, more mature reading, and that you pester me to read the books you love, as I do with you. Considering you were never going to learn to read, it continues to be a bridge that connects us, and I am so grateful that you changed your mind. We have had so many brilliant, life affirming conversations because of those times we’ve spent snuggled up on the sofa, sharing books and the thoughts that come from them.

There is so much else to say about what you bring to my life, and our life together as a family. If I had to sum it up though, I’d just let you know that you complete us perfectly. I waited a long, long time to have a son, but you were worth everything it took to get you here. You are and always will be ‘just Oscar,’ and that is everything.

I love you, heart of my heart. Happy Birthday.

 

 

This was supposed to be about books, damn it.

The work I have been doing on being less enraged about stuff has really been put to the test today. I can safely say that it’s working. It’s not perfect, but it’s definitely improving. If I had had this day at the beginning of the week I would almost certainly have exploded by now. As it is, I have spent quite a lot of time laughing. It’s been wry laughter, don’t get me wrong, I’ve not turned into one of those people who embraces every day with unalloyed joy and looks for rainbows in a mountain of shite, but I have not lost either my shit, or my sense of humour, so this is good.

Wednesday and Thursday were good days. I was able to function. I felt fairly stable. Things were on the up. Last night I didn’t even make it to bed before I started with the hot flushes. Rolling, rolling, rolling, as The Blues Brothers would sing. Then the giddiness started. I couldn’t walk in a straight line. Couldn’t see straight. BP, through the roof.

I was up six times in the night with the hot flushes. I wake in a lather, rip all my clothes off, cool off, go back to sleep, wake up because I’m cold. Rinse, repeat. Also feel the need every time I wake up, to go and pee, because I am trained, like Pavlov’s dog.

When I finally got up I had a crashing headache, probably dehydrated thanks to all the peeing and sweating (don’t let anyone tell you the menopause isn’t glamorous). I Was about to stagger downstairs to minister unto myself when I heard Oscar’s stereo talking away to itself (Harry Potter). I went in to turn it off. Instead of him being at school, he was wrapped in a sheet, groaning. He had got up, thrown up, and been put back to bed by his father before he went to work. His temperature is impressive, as is his ability to project vomit away from any receptacle provided. We’re on our second set of sheets, one sponged down mattress, and a lot of groaning.

He seems to have come down with the virulent sickness bug that we had, up to now, avoided. It is highly contagious and is currently ripping through every family in the neighbourhood. I am sad about this, as it seems likely we will all topple like ninepins. I sat over my morning coffee debating whether it would be best if we all go down together and just knacker the washing machine and go round dressed in pillow cases like Dobby the House Elf, or have it one by one over an agonising, sick filled fortnight.

Of course, the added complication is that it is half term next week. It is also Oscar’s birthday. Jason is flying to Vegas on Wednesday and the children’s granny is coming from Canada to spend a few days with us from Monday. Oh, and I’m having a Drag Race inspired Halloween party in a week.

I called the GP today again. It’s been two weeks since my last confession and I miss the old place. My BP meds being halved is not working. Nor is the GP’s suggestion for me to go to A&E every time it reaches a certain point. It is constantly at that certain point. So, meds will go up again to stop everyone shouting. I just wanted to double the dose, but no, I have to have an appointment, so I’m popping over there this afternoon, where my anger management skills will be put to the test as we engage in another pointless conversation.

My endocrinology appointment had not turned up either, so we talked about that too. I was told to wait another two weeks. Half an hour after that very conversation a letter plopped onto the door mat, informing me that my appointment at the hospital on 11th December has been cancelled and another one will be made for me.

As I didn’t know about the first appointment, this was all very surprising. I rang the hospital helpline. It was rather complicated. Of course it was. Apparently I may have an appointment on December 12th. I need to call the consultant’s secretary to confirm. I was given the number. I rang it. She answered and then immediately hung up. It was then engaged for half an hour. Now it just rings out and goes dead after five minutes. So the situation, endocrinology wise is still uncertain.

While I was figuring all this out, the hot flushes started again. I ripped all my clothes off. Thankfully I did not have to Skype the hospital. One good thing about a cancellation letter from University Hospitals Leicester is that it is very effective if you need to fan your under boob sweat.

Too much information will certainly be shared.

As all this goes on, I am eating lots of green, leafy veg and lentils. Lots and lots of lovely dal. I highly recommend Nadiya’s recipe from the BBC website. I believe that with every lentil I consume, my BP will drop by at least a point. I shall be horizontal by Sunday.

Vitamin, mineral, oil and supplement intake is staggering. I am a human maraca. I swear that when I was fanning my sweaty boobs with my rejection letter, the breeze actually made them rattle. I am also trying to keep hydrated. This means that when I am not rattling, I am swishing. Sometimes it’s a Tsunami of swish/rattle proportions.

I’m also meditating.

I do all this with full apologies to my rebellious, 20 year old self, who would be shaking her head and offering me cocktails as a solution for what ails me.

If all else fails, I will try it.

I have also ordered a fanny magnet. I have no idea what they’re really called. I don’t care. They are forever and always, fanny magnets for me. My friend had one and stuck herself to the fridge. The lady at the GP surgery has one, and accidentally stole a letter opener with hers. A review I read online said one lady stuck to her shopping trolley with hers. I care not. I have been told they can reduce hot flushes by 75%. I don’t care if I stick to the bloody pope, I’m risking it.

I shall keep you informed with a running tally of the things I stick to on my menopausal, lady garden adventures. It will be something to do.

I wondered why this time around, the menopause is being so much more of a bastard than the last time around. Then I realised that I have been ill since last December with this hormone shit. Then I had Decapeptyl which shut down my entire pituitary gland function. I had ALL the menopause in a month thanks to that. Then it stopped everything. After two months of feeling great, the effectiveness of the Decapeptyl started to decrease and I then had two months of side effects, including crippling joint pain so that on some days I could not dress myself. Then I started to come down off the Decapeptyl when they stopped it, and I had withdrawal AND the hormones coming back. Then I had high BP and everyone shouting at me about having a stroke at the same time as having breasts full of cysts and treatment thereof. Followed immediately by major surgery. Now I still have high BP and everyone shouting at me. I have the looming possibility of a hereditary ‘syndrome’ for this which may only be solved by surgery. I am on BP meds. I am recovering from the major surgery physically and mentally, and I am currently in my second menopause of the year, which is not being treated with anything, because my hormones are trying to kill me. And as I have no idea how long Decapeptyl lingers in the system, and the best I can find online is ‘months’, I may still be having issues with my pituitary gland.

It’s asking a lot to ask a magnet and some lentils to cure it.

As my mother says. It’s being so cheerful that keeps us going.

 

 

 

 

 

Chin Up, Katy

Today needs to be another pep talk day, frankly. I spent most of yesterday evening in either floods of tears, mild rage, rolling sweats or palpitations and exhaustion. Add to that a killer headache and being so tired I didn’t actually exercise yesterday at all, I’d say it was a bit of a shit show. And that’s me being optimistic.

Today I have woken up late, still exhausted and headachey and have cried four times already, and there isn’t anyone else in the house.

That is not an excuse for not picking myself up and doing what I can. That has to happen as well. This probably explains the exhaustion.

Here are the good things:

I cooked a bloody lovely dinner yesterday. Jamie Oliver’s Empire Roast chicken (basically a chicken marinaded in home made curry paste before you roast) with Jamie’s Bombay roast potatoes. I also made Sabrina Ghayour’s tomato and green bean stew as a side dish, and we had a huge green salad that I tossed with peas, garlic, coriander and spring onions that I had lightly fried in olive oil. The oil from the pan with salt and pepper were the dressing for the salad. It was great. Today, because I need it, we will have chicken and vegetable soup made with the leftovers. I have made a malted, seeded loaf to eat it with.

I have meal planned the rest of the week and done an online shop so that we actually have the right ingredients.

I have done more research into oestrogen and its lingering effects. Turns out that all the foods I craved post surgery, where I lost 4kg and my BP started to drop, are oestrogen chucker outers. I feel that this is significant. I have planned to put some of these foods back into my diet pronto ( oily fish, oats and seeds, dark green veg) to see if that helps. On the understanding that it’s not a magic bullet, but that it won’t hurt, and I am lucky in that I like these foods anyway. Also, it gives me something to do.

For some reason, I had stopped taking all my vitamin/mineral supplements post surgery. I started taking them again yesterday. I rattle when I walk, but that’s ok.

I am still reading. Things are slower as my physical activity rates and exhaustion rise and fall, but still reading. A book blog will be forthcoming.

I am listening to the podcast, My Dad Wrote A Porno. I know I am late to the party, but it is very funny, and it is giving me joy.

I have nearly finished watching season six of Rupaul’s Drag Race. I still want to be a drag queen when I grow up. It makes me happy.

I did some light dusting yesterday. The children helped with other jobs. The house is a little cleaner. I feel a little better.

Andrea bought me some M&S dark chocolate (52%) with freeze dried raspberries in it. I am savouring it, a square at a time. It’s lovely.

Oscar is reading me Night Watch by Terry Pratchett. We are both enjoying it so much, and it is a pleasure to snuggle up on the sofa with him while he reads to me. Grown ups do not get read to enough. It really is a wonderful treat.

Jason paid the balance on our holiday today. We are going away to my favourite cottage in my favourite corner of North Wales again for the week before Christmas. We did it last year and it was such a wonderful respite from the stresses of the season that we decided to do it again. All my other holidays this year have fallen by the wayside. This one will not. The thought of it, shimmering on the horizon is what is keeping me going.

 

 

 

 

Personal Pep Talk – Part one of an ongoing series, probably

This year feels like a bit of a watershed in my life.

Looking back I realise that when I was a kid there was a time when I wrestled with what it meant to become a teenager (I don’t know if I ever found that out to be honest). When I was a teen there was a time when I struggled with what it meant to be a grown up. When I had Tilly I had to learn what it meant to be a mum and think of ‘we’ rather than ‘I’. Now I think I’m going back to what it means to be ‘I’ again. It’s not that I’ve dumped all the kids in a box outside an orphanage or anything, but they need me less in the more practical elements of life and I have more me time.

With this year being the one I finally got my hysterectomy I am also hoping that as I recover, more of that me time will be spent doing what I want, rather than being a professional ill person, tied to the ebb and flow of the hormones that have commandeered  large parts of my life, both physical and emotional.

I have found all of these transition periods hard, because life doesn’t stop while you’re learning to be your new self and shuck off the old bits, and even though every new phase brings bounty, there is grieving to be done as the old self recedes. It’s also not a straightforward process. In just over a week I will be six weeks post surgery and am hoping to be be signed off by the consultant. I will be technically ‘well’. I will be able to drive again, and pick up kettles (p.s. I am already picking up kettles, because that’s the kind of crazy ass, rebellious woman I am. Don’t tell anyone).

But I am fully aware that it may take longer for every part of me to catch up with that piece of paper that someone else signs on my behalf. So until I myself, feel ‘well’ and reassembled, I need to keep looking after myself and not run before I can walk, even though I might be frustrated with the pace of progress.  I need to remind myself that any progress is progress, and I can help myself, or hinder myself. I’ve been working on helping myself over the last few weeks of being a mostly resting sort of person. It’s not easy. It doesn’t come naturally, and sometimes I really fuck up. That’s ok. I’m just going to keep going.

Anyway. I’m going to write myself a few reminders that I can come back to when I feel, as I have done sporadically over the last few weeks, that I am fucking up. I have tools at my disposal to help myself, and when I use them, I feel better. So I can moan and wail, or I can use the tools. Or, sometimes when it’s necessary I can moan and wail AND use the tools.

TIPS FOR SELF

Sometimes moaning and wailing is good for you, even when it feels like you’re letting the side down. You’re not. Sometimes you will feel better when you moan and wail, and let the feelings out rather than hoarding them all like some weird ass dragon of depression, sitting on a pile of carefully collated woe. This does not mean you have to give up. It just means you can make time to moan and wail, and then get on with shit anyway.

You ALWAYS feel better when you have a bath or shower. Cleanliness is truly next to saneliness or something.

Ditto having clean sheets. They’re like a blessing. Despite the agonies of having to wrestle with duvet covers.

Also, having a clean house. If you’re stuck in something emotional, clearing something physical can help. This does not mean you have to clean the whole house. It is not a punishment or a marathon. Cleaning the bathroom before you allow yourself to have a delicious bath, makes the delicious bath feel better. Clearing a cupboard of junk and getting someone to take it away to the tip or charity shop can help clear a mind.

Remember how annoyingly holistic the universe keeps turning out to be? That.

You are allowed to sleep a lot. It is not an admission of defeat to be tired. You’re creating the space for yourself to process stuff without your conscious mind getting in there and being in charge. Lots of the time, your conscious mind is a bit of a dick and needs to learn to shut the fuck up.

You are processing a crap ton of emotional AND physical stuff. You need to look after both things. It’s no good if your body is a temple if your mind is the wreck of the Hesperus.

It is not shameful to enjoy shopping. You are really good at it. It makes you happy.

Cooking real food is good for you. It makes you feel better in all sorts of ways. Cooking is creating. Creating is nice. Cooking food you want to eat is a lovely thing to do for yourself, and given your problem with portion control, everyone else.

Cooking things with love always makes the food taste better.

Home made soup always makes you feel better. Sometimes Heinz Cream of Tomato Soup also makes you feel better, because – childhood.

Remember that no day is either all good or all bad. In every good day it is ok to experience some things that aren’t, and in every bad day there is always something to be grateful for (even if it’s just: I didn’t kill anyone today. Or: I didn’t kill myself today). It’s good to be honest about what is really happening, rather than pretending. Having said that, there are certain times when it is absolutely ok for you to ‘fake it to make it.’

Be grateful for the fact that you are surrounded by people who love and like you. On the days when you’re not feeling loveable or likeable, think about these people and realise they are not stupid. If they love/like you, you must be doing something right. Be comforted by this.

Don’t take your blood pressure. Just don’t. It is, at this moment in time, the most self-sabotaging thing you can do for yourself. This will change. You know this. So keep buggering on.

Everything will be alright.

 

Coda

Yesterday was not great. Let me amend that. Parts of yesterday were not great. As you know, I hit a kind of wall with health stuff, and went through rather a crisis of confidence with everything.

Then things changed. They changed because I was able to write about how I felt. Sometimes I feel like I should give up the blogging. Then I inevitably get reminded that it has saved my sanity so many times in the last eleven years, I’d be a fool to bin off something that time and again contributes so much to my ongoing mental health. This is the space where I can sit, take all my tangled thoughts and lay them out, far enough away from myself that I can get perspective. The best things about it? It’s free, and I can do it whenever I want.

Once I’d blogged, I didn’t feel any better, but I did feel that I understood myself better and that I could articulate my feelings clearly. Jason was working from home yesterday. He gave up his lunch hour, the time he spends decompressing, ready for another afternoon at the coal face, to talk to me about what was going on. I am so grateful for him, particularly because he has learned the very valuable skill of hearing me out, rather than trying to fix me or tell me what he thinks I’m feeling, or what he wants me to do. It’s not easy to do that for someone you love, particularly when they’re having a hard time, but he does it, and I love him for it.

As I was talking, I realised, because I now had the mental space, that I was really angry. Really, really angry. I also realised that every time I walk into a doctor’s office I am on the defensive, that I am already saying ‘no’, that I am already in battle mode, preparing to be angry. My response to my own dealings with the NHS is basically, when it comes down to it, a massive, toddler tantrum.

Now, don’t get me wrong, this is sometimes exactly where a person needs to be, and it has served me very well in the past, but, it is not always where a person needs to be, and it is exhausting and stressful. It’s certainly not going to help my blood pressure.

I have learned a lot over the past year, working with a rather wonderful lady who is, let’s say, an energy worker. If that sounds wank and new age, well I don’t care. I’m not asking you to see her. I’m not asking you to believe. I’m just telling you that she came highly recommended by a couple of very dear friends who were going through some difficult times. Both recommendations came independently of each other within a few weeks, as I myself, was in a particularly difficult place in my life. I took the hint and went to see her, and since I started working with her, my life has changed for the better in so many ways.

One of the things I knew, but have now learned (if you see the difference), is that if I want a situation to change, the most empowering thing I can do, is change myself. There are so many things I cannot do anything about, but the one thing I have autonomy over is myself. I have learned that if a situation is stuck, and I have done everything external I can to change it to no effect, then I need to look at myself. And if I do really want change to happen, it has to start with me.

This is not a new insight. I knew this before seeing her, but seeing her has allowed me to apply it better, and not forget, or remember more quickly where my power is. Yesterday I realised that I may not be able to change the NHS, the system, or my actual, physical blood pressure, but I do want change, and it has to be me that changes.

I can get rid of the anger. I can get rid of my knee jerk polarity response in this situation, I can get rid of the fear. I can work on creating a calm, safe space in me that allows me to act in my own best interest and not be riled by what others do.

Yesterday I was feeling unhappy about all sorts of things, and in particular the fact that I felt that I need to pay attention to my health, because that is a sensible and self-loving thing to do, but that I was being pushed into a corner about how to do that, and none of the options I was being offered seemed helpful or healthful. I felt that the only other option, which was to walk away from them all and ‘fuck that noise,’ was the one I wanted to take, but that rationally it wasn’t wise (at this particular moment). I was frustrated and angry because I acknowledged that I had choices, but they all seemed shit.

Going through this process of ordering my thoughts, feeling my feelings, and understanding that I had real power and choices over them, gave me another way, a way that seems sensible, self loving AND healthy.

If I change these things, it gives me back my power in a good way. I know that in NHS meetings I often feel powerless. When I respond with my angry ‘No’, voice, it is my way of taking back my power, which can be useful, except when it isn’t. Sometimes I need to say yes. Sometimes I need to know deep within me that I have the choice to say yes, or no. When I own my power healthily, I can, because giving myself options is not losing any more. I’m not giving anything away, I’m giving what I need to myself, and that makes all the difference. It means that rather than opt out of dealing with my health at all, I can do what I need to do, on my own terms, without feeling trapped or sad or angry.

It’s not magic, this stuff. It takes work, and time, and a willingness to own my own shit, which can be hugely uncomfortable. It doesn’t necessarily work every time, even when the work seems done, but it works more often than it doesn’t, and I have already experienced such a profound shift in my circumstances where I’ve worked this stuff, I am willing to do whatever it takes. Reaching a resolution regarding my health already makes me feel more powerful and I’ve not actually done anything yet except figure out what it is I want to do. I have booked an appointment to see the lady who helps me put into action the things I have figured out. I know that whatever work I do with her is only going to improve things, so I am feeling calmer already.

And my blood pressure? I have no idea. I decided yesterday to keep taking the tablets, but only take my blood pressure when I feel like it, and right now I don’t feel like it until I’ve done a bit more work on myself. I’m meeting myself half way until I can figure the rest out, and it feels ok.

 

A very long health update. You have been warned

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.

Damned if you do

On Monday morning I had to take Tallulah to an orthodontic appointment. Given that I can’t drive at the moment in case I explode like John Hurt in Alien, it was something that family members were going to do for me. For various convoluted reasons, by Sunday night it was apparent that nobody was actually free to take her. It was decided that I was well enough to do it as long as all I was required to do was to sit in a cab, sit in a waiting room, and then reverse the process.

So I ordered an Uber for the following morning. I installed the app after Tilly and her friends started using it, because I really liked the security of being given the photo and registration of the driver and being able to track the journey.

I confess to feeling a bit uncomfortable with using Uber, because I’ve done my research and certainly in terms of their gender track record, they’ve not been doing themselves any favours. Now it appears they’re not really that keen on the idea of a living wage either. However, for practical purposes it seemed undeniably safer than getting in a random cab and hoping for the best. (I am aware it isn’t perfect, but it’s better, ok?)

I say this as someone whose father and grandfather owned a private hire taxi firm in my city for sixty years between them.

I used Uber once to get home from a drunken party, and it was great. The orthodontist trip was my second journey with them. For reasons which I have bored everyone shitless with, the journey ended up costing me four times the quoted amount and I spent all day across all levels of social media, trying to sort it out. Eventually, after Tweeting the boss of Uber in London, they resolved it with me, and I was able to get a refund and pay a sensible rate for my journey.

I can’t say it’s been fun. I can only thank my lucky stars that it’s an industry I understand. I still have a case outstanding with Trading Standards because I think it is important to dispute their transparency over charging, and their policy on ‘surge’ pricing as a direct contravention of the Consumer Rights Act of 2015, and just because I’ve had a happy resolution to the case, doesn’t mean everyone will.

I think I was successful because I know how to use social media effectively and Uber are on the ropes at the minute, just having lost their contract with TFL to operate in London, so they need to be seen to be behaving themselves. It still needs looking at as a wider issue, rather than how it affected me personally. My Uber account is linked to my credit card, so the cost of the fare was covered regardless, but we had talked about sending Tallulah on her own (I was really poorly on Sunday). What if I’d sent her with cash at the price they’d quoted when I booked? How stressful would that have been?

All that however, is merely back story to the point of today’s blog.

My Tweets to Uber have been being steadily picked up and RT’d by cabbies over the last forty eight hours. It was to be expected. They’re fighting for their industry and their right to make a decent wage, which is something Uber is threatening. I have a certain amount of sympathy with them. As I said, family business and all that.

However, that sympathy has been stretched to breaking point today, as I have dealt with cabbies who think that their cause will be helped by telling me that it serves me right for what happened because I was greedy. Rather than blocking them from the outset, I explained the safety aspect of my choice. That has, with the odd exception, led to further and repeated abuse. It cuts no ice that if I win my case with Trading Standards it will benefit them.

Apparently I’m stupid and greedy. I’ve been mocked because I had surgery and can’t drive. I’ve been mocked for admitting that I feel vulnerable in a random cab. I’ve been called a troll because one driver, who works in London, told me that £75 was the correct fare for my journey and by insisting on being refunded I was supporting Uber’s undercut prices. When I was kind enough to educate him on the correct fare in my own city, with my own actual expertise, he said he was entitled to his opinion and subjected me to a barrage of abuse. Because apparently, actual, stone cold, take it to the bank fact, does not trump the baseless opinion of a moron. I have been asked if I can really call the abuse that’s on my timeline actual abuse, by people who have already been rude to me and don’t like being schooled.

It’s been a master class in how not to win friends and influence people.

Here’s a tip. If you have people who are sympathetic to your cause, don’t abuse them repeatedly on a public forum. Don’t deride women for feeling vulnerable in taxi cabs when the woman who has said she feels vulnerable has spent all day being harassed by taxi cab drivers who can’t even be civil on Twitter. How the fuck are you going to expect her to want to take a cab ride with you after that?

It’s hard not to feel that this is a woman thing. Only one person who was rude to me has gone on to acknowledge that safety IS an issue, and that it’s not just always about money. He has restored my faith somewhat on what has been a bleak day in terms of how I feel about taking any cab at all, Uber or otherwise. He tells me I mustn’t take it seriously though, apparently the boys feel betrayed and that might make them come across a bit aggressive.

It was really good of him to talk with me. I mean that. We had a genuine, polite conversation and I’m grateful that we could talk about it, but as for the ‘boys will be boys’ message, that’s not on. This is not school, and even if it were, it’s still a shitty message that excuses actual abuse.

I’m a customer, not a scab crossing the picket line. I had an unfortunate experience, and it’s being picked up for the potential good fortune of people who seem to think it’s perfectly acceptable to use me as a symbol of what’s wrong, and then abuse me for betrayal, as if I owe them something. I owe them nothing.

Here’s the thing. Taxis are a service industry. That means their function is to serve their customer base. In a competitive industry, I’m generally going to go with the people who offer me the best service for my specific needs. If you want to keep my custom, you need to earn it. Cab drivers are not exactly thin on the ground, and even if Uber ceases to be a threat, someone else will take the model and improve on it. The old way of doing things is not an option any more, so don’t piss off the people you need to survive. OK?

Every single piece of rudeness, abuse or sheer ignorance I’ve experienced today has been from men. Men who have hounded me. Men who have mansplained to me. Men who have ignored my concerns. Men who have belittled me. Men who have out and out lied, and stuck to their lies in the face of my superior knowledge. Men who have laughed at me. Men who have used my experience for their own ends and then abused me for it. I am so damn disappointed that this has turned out like this.

My only consolation is that in three weeks time I shall be in the wonderful position of being able to drive again, and will do everything in my power to avoid using taxis, whether they’re Uber or regular.

When I was a student, I worked every summer at my dad’s firm. It was a pretty rough environment and I got no special privileges (No free cabs. Seriously. It was pants), but I never once felt threatened the way I have in the last twelve hours.

I don’t really have a conclusion to this, just a sense of anger and disappointment at how bloody awful people can be.