[Written just after the day in question – edited July 2019]
One Monday at the end of February, I went to Waitrose to do some shopping and have lunch (macaroni cheese – too hot, but delicious) before going to see a clinical psychologist. I asked work to refer me to see someone because I wanted to know whether or not I’m autistic, and it turns out I am. But now I know this (what I suspected all along), I am finding it hard to know what to do with this information – harder than I expected. I thought I would feel like I understood myself now, that I had a group to belong to, that now I know the reason (or maybe combination of reasons) why I am the way I am (as it were) that I would feel better about myself. But really I just feel the same, with the added complication of having to tell people about it. Well, I don’t have to, but it would be a bit weird not to.
I’m not saying it’s not a relief to know – at least to know that I wasn’t wrong, but I feel that it’s just another thing to add to my list of weirdnesses, rather than something positive – oddly, I felt more positive about autism before I was diagnosed with it. Maybe that’s just because I often see myself as a massive ball of weirdness – so how can autism be a positive thing if I have it? Also, you know, what if she just said I’m on the spectrum because my workplace paid her to assess me? I don’t know – I am being paranoid, and goodness knows I’ve been thinking I’m autistic for ages, so it’s not like the diagnosis was a surprise, but still, I’m not feeling how I expected to feel. I am ruffled. I think I need to talk to someone who will understand, but I’m not sure who that is.
The psychologist said if the term was still in use she would have said I have Asperger’s, but as it isn’t she says I am mildly autistic – this just means my intelligence and speech are good, but doesn’t mean that my autism won’t cause me any difficulties, in fact in some situations I might react just as ‘badly’ as people with who are moderately/severely autistic. I guess it just depends on whether or not I’m in a ‘triggering’ situation, one that I find particularly difficult to process sensorily (I think that’s the first time I’ve used that word)
by (the use of) the senses; by means of the senses; in relation to or in respect of the senses
how experience of chronic illness affects how and what people with chronic ill health expect of themselves and their experiences (particularly medical interventions)
what expectations ‘healthy’ people have of how people with chronic ill health will experience medical interventions.
I tried to fit all that into the title but it was far too long! Clearly, this post is in no way scholarly or backed up by any kind of research. It’s just some thoughts prompted by a conversation I had with some colleagues at work the other day. Also, I should point out that when I talk about chronic ill health in this post I mean chronic ill health from childhood, because I think experiencing ill health in childhood carries particular connotations and ‘risk factors’.
The expectations of people with chronic ill health
Speaking personally and in relation to my own body, I basically expect stuff to go wrong, or at least be complicated in some way. My expectations/fears are that if I can have a complication from some illness I probably will, if a procedure can be made a bit more complex it will be (because my abnormal body demands it), if it’s not supposed to hurt it still will, if I’m having a blood test the nurse won’t be able to find the vein, my pregnancy will be complicated, etc. – because it’s me – that’s what happens, that’s what my experience has been. In fact (or to my mind, which is not necessarily the same as fact but I think it is), this view is totally logical: people go with what they know – my past experiences show me what my future experiences will be like.
I think this idea of being abnormal/complicated/problematic influences my expectations about myself even away from the area of medical interventions. If you think you are abnormal (yes, yes, I know…), complicated and problematic you are (I imagine) not going to have much in the way of self-efficacy, and be more likely to have lower self-esteem [but my positive thinking friends might argue that this is self-fulfilling prophecy – haha!], verging into self-hatred. Actually, I’m not imagining it: I have been there. It’s not the same for everyone with chronic illness – plenty of people I know who live with long-term ill health don’t (as far as I know) suffer from this degree of negativity towards themselves, but you can see how easily it could happen.
Thinking about this led me down another track – maybe this is where the idea of the ‘ill person as hero‘ comes into its own as a kind of defence against this spiral into self-loathing. No one wants their loved one to think badly of themselves, so one way to attempt to discourage or prevent these kinds of thoughts could be to build them up, leading them to think of themselves not as problematic but as overcomers of problems – which is what heroes are. It makes a lot of sense to me. Even though (as previously discussed) I still have problems with this idea of (e.g.) ‘heart warriors’, I guess it’s better than the alternative of depression and self-hatred. But perhaps there is something in the middle ground – a realistic acceptance of ourselves as we are: not as problems or failures, or heroes or warriors; ‘just’ human beings.
‘Healthy’ people’s expectations of how people with chronic ill health will deal with medical interventions
In my experience and that of some of my CHD friends, healthy people tend to think that we must actually suffer less during medical interventions and find them less traumatic over time, because we ‘must be used to it by now’, having had lots of previous interventions. Well, here is the news: we don’t. I have met a lot of people with various lifelong illnesses and it is very rare for someone to say that they find medical interventions less traumatic over time. In fact, I think for most people it gets worse. I have certainly found this to be own experience; partly because as an adult I now understand more about the consequences of interventions going wrong, but also just because of basic stuff like I know X procedure is going to hurt /be generally unpleasant- there’s no two ways about it. Therefore I fear it not less, but more. Knowing about bad things doesn’t necessarily make them any better in terms of how traumatic they are (although having said that it does mean you can perhaps employ your own interventions (coping mechanisms)) if you have any and are able to.
As far as I can tell, this idea of people being better able to cope with bad experiences if they’ve previously had bad experiences seems to be exclusive to the area of long-term ill health and medical interventions. You wouldn’t say to a child who’s fallen over and broken its leg, ‘Oh, it’s OK because because you’ve done it before, don’t be a baby’, (or maybe you would if you’re a horrible person), but this is what people expect of children (and adults) with chronic conditions requiring medical interventions, even those not necessarily related to their conditions. Somehow, because your life revolves (or has previously revolved) around hospitals, needles, drips, catheters, tubes, people with masks on their faces, etc. you’re expected to deal with these again (possibly in a totally different context) and be OK with it. I have literally had a doctor say to me (as a 30-odd year-old woman) ‘don’t be a baby’, because I was freaking out about a blood test (that he was basically incapable of doing due to his own incompetence). Yes, I was 30-odd years old, but ‘hello, brain with your excellent fight or flight reflexes!’. We know bad stuff is going to happen – you can’t fool us with your cheery colourful scrubs or your vampire lanyards (phlebotomists, this means you).
So where does this leave us? Well, firstly we (I) need to find that middle ground of liking ourselves as we are – not as extremes of humanity as problems (villains? That’s a whole other blog post!) or as heroes. Secondly, people who haven’t experienced life long ill health and/or repeated medical interventions need to stop assuming that people who have are going to deal with these things more easily than ‘healthy’ people. It would make everyone’s experiences better. Thinking on this has improved over the years – there is now much more focus on how people’s mental health is affected by long-term physical health conditions (e.g. see Liza Morton‘s work with people with CHDs), which just wasn’t considered when I was a child (as least not in my experience).
Interestingly, a third thing that came out of the conversation with my colleagues was that I assumed that ‘healthy’ people would actually find medical interventions more traumatic than people with repeated experience of such things – so I am actually being a total hypocrite, if you think about it! 🙂
I went to the dentist today to have my teeth scaled and polished (‘cleaned’) and then have a filling. It was not fun. There was a needle. I don’t like needles. There were loud high-pitched whirring noises. I don’t like loud high-pitched whirring noises. There were people standing over me with face masks on. You get the drift. I held the dental nurse’s hand. I gripped on to myself. I took deep slow breaths. I cried. I’m 39.
I have terrible teeth [in my terrible jaws – have I read The Gruffalo too many times?]. Not in terms of them being decayed (thank goodness), just in terms of their alignment, or rather lack of. They are very wonky – crooked, to go with my crooked back. It’s fun. (It’s not). It means I have to go to the dental hygienist to get them cleaned every six months, especially as, because I have heart condition, I have to be careful about infection, particularly in the mouth. I had endocartitis as a child and it was Not Good (as my daughter would say).
My teeth are crooked because I never had a brace. I was offered one, but I declined, because I didn’t think (aged 14?) that I could cope with the repeated trips to the dentist and fiddling about with my teeth that having one would have entailed. Or perhaps it was a matter of (for once) having the choice to be left alone or not, and I took the being left alone option, which I think is understandable.
Of course I regret it now. I know my teeth are horrible and I’m very self-concious about them, to the point where I will avoid smiling properly in photos. When I meet people I think about them thinking about how awful my teeth are – of course they may not be thinking this, but how do I know? And think of how many dental appointments I could actually have avoided if I’d had a brace so they were easier to clean.
My anger is like a volcano: there are a lot of things I’m angry about and they are mainly under the surface, but sometimes something triggers off the volcano and it explodes, often disproportionately to what the trigger actually was, because I’m not really angry about the triggers, I’m angry about other, bigger, things (hence the over reaction). I have decided this has got to stop, because it is anti-social, inappropriate and could lead to injury to people or things. Also, I am just fed up with being angry, and with feeling bad (or even angry!) about about being angry.
I went to see a counsellor last week. She said it’s OK to be angry about bad things that have happened or good things that have been taken away that (it turns out) I’m grieving for. I said OK, but how can I deal with the anger without being like a volcano? She said, I think you need to feel like your anger has been heard, so how could you make that happen? Writing? I suggested. How about talking about it? she said. How about both?
On Monday, I turned into That Woman. You know, the one you see (and hear) yelling at her child in the middle of the high street. B was playing with her “sticks” (some coffee stirrers), drumming on the pavement, and didn’t want to follow me to the bank machine, which I had to go to because I had no money on me for the bus ticket I thought I’d lost (it was in my pocket). Because I ‘made’ her come into the bank she then threw her sticks to the ground in protest, then threw my work lanyard (which she has taken to wearing) to the ground also, and said “mummy pick up [the sticks]”. I didn’t want to pick up the sticks and said so and asked B to pick them up instead, to which she refused. There was a stand off, which would have been a lot better had it been a silent stand off, but sadly it wasn’t – I made most of the noise, getting increasingly louder and ending up (if only this had been the end of it) shouting at B to “pick them up NOW!!!!!!!!!!!!!!!!!” (the number of exclamation marks increases with the loudness of the shouting). In the bank. It was not a good moment. Of course B didn’t pick them up (why would she?) so I picked them up and said I would throw them away (I didn’t – no follow through=bad parenting), to which B cried most noisily and sadly and still refused to follow me (again, why would she?- No one in their right mind would have followed this crazy shouting woman) so, having totally lost the plot by this point, I bent down and shouted “NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!” right in her poor, sad, face. I had become That Woman.
I then picked her up and put her in the pushchair and haired off, B wailing piteously, to the bus station, but we had missed the bus by this point so I went to buy some fruit (attempting to be a better parent by feeding her healthy food?) in Sainsbury’s but we kept getting in everyone’s way with the pushchair and that was the last straw. I broke down and sobbed next to the cucumbers. B (who had previously calmed down) joined me. Eventually I pulled myself together because I had regained enough sanity to see that my crying was making B cry, and managed to buy the fruit and get to the bus stop. The bus came and we went home. B was asleep by the time we got in the door.
I lay awake that night and cried a bit more.
This incident made me think more about That Woman. My only defence for my behaviour was that I was tired to the point of exhaustion, Mr C had been away so I’d been looking after B on my own more than usual, and I hadn’t had any lunch. If there is anything positive to be gleaned from this sorry tale it is that it has made me more empathetic with those women like me who shout at their children in the streets. I have a helpful husband, enough to eat and a steady income and I still get overcome with anger and emotion when things get too much. There isn’t an excuse for shouting, but it is easier than you might think to get into that state.
I researched ‘shouting and toddlers’ (as I do, the librarian in me can’t help herself) and found some useful links:
I have to admit, reading some of this made me feel worse before it made me feel better, but that’s OK. I know I need to find a way to deal with my anger – it has always been a problem. The irony is, my dad was/sometime still is very shouty and I hated it. I can’t cope with people shouting at me – I just cry, even now – and I really, really, didn’t want to be like that with B. Must try harder. I’ll let you know how it goes…
Not completely, I’m still working, but at my appointment on Monday my cardiologist said my heart muscle is gradually getting weaker (still only mild-moderate weakness), so she is going to put me on some medication – ACE inhibitors (I tried to think of a Doctor Who pun to put in here but I couldn’t think of a good one. I loved Ace, she was my first Assistant/Companion). It’s not just having Babymouse that’s weakened the heart muscle, there are 6 or 7 other factors that haven’t helped, e.g. getting older (!), the operations I’ve had, and even the pacemaker, which apparently my heart “doesn’t like”, which is a bit unfortunate as it needs it to keep me going properly!
I have mixed feelings about going on medication. I’ve always been sort of proud of the fact that I’ve never previously had to be on long term medication – I like telling people I’m not on any when they assume I am. I know that’s a bit silly. So, in some weird (or maybe not so weird) way, it feels like a step back – like my health is getting worse, which, I suppose, technically, it is. I just don’t really want to accept that, especially as I’ve actually been feeling quite well recently and thought I was coping alright with all the extra exercise looking after a baby entails. I think it was reading the words “heart failure” (as in ACE inhibitors are used to treat heart failure (these words were, wisely, not used by my cardiologist!) that was a bit distressing. Unsurprisingly, I don’t really want to think of myself as having heart failure. It seems so…final.
But, coming on to the positive side of my thoughts, it’s not final, precisely because there is medicine to take, and I’m fortunate enough to be in a place where I can take it! Hopefully it will prevent my heart getting worse, or at least it will get worse at a slower rate, and there are other things that can and will be done, apart from the medication (new pacemaker, another new valve, both a few years into the future), so I’m hoping I’ll be fairly well, even if my heart isn’t working at full strength. Well, it never has worked perfectly, and, thanks to the NHS I’ve been (relatively) OK, so hopefully I’ll continue in the same way.
Anyway, I will leave you with a lovely clip of Ace and the Doctor. It’s sort of appropriate…
Sorry for the lack of blog posts recently – BabyMouse has been keeping us very busy, and when I’m not feeding, changing, winding or washing BM, or expressing milk or trying to sleep my brain hasn’t really been working very well. We are sleeping, but our sleep is in two or three hour chunks (if we’re lucky and BM spaces her feeds out), rather than a full six-eight hours at a stretch, so it doesn’t really feel like we’re having as much sleep as we used to – probably because we’re not!
BabyMouse is progressing well – she is eating quite well and putting on weight, and the health visitor was pleased with her progress when she last visited. We did have a bit of a worrying week where she was seeming to eat all the time but didn’t put on weight – I think this was because she wasn’t latching on well when breastfeeding, so she seemed to be eating when actually she wasn’t taking much in. Partly due to BM not latching on, I got mastitis, which was horrible. I felt really ill, like having a bad bout of flu, and I was actually sick, which apparently can happen with mastitis, although it’s not common. As breastfeeding was already very stressful for both BM and me, because of her not being able to latch on properly, I decided that the mastitis was the final straw and stopped feeding her at the breast. I’m still expressing breast milk, though (partly in an effort to try and get rid of the mastitis), so BM is still getting all the nice nutrients, etc., but without the stress for her and pain for me. She is also having formula milk, as I’m not able to express enough to feed her purely with expressed milk. I know lots of people don’t think that ‘mixed feeding’ is a good idea, but it works for us, and is better than the alternative of a stressed mum and baby, and, more importantly, BM is getting enough to eat.
As a further ‘excitement’, I’ve also had the delights of postnatal depression (PND) to contend with. I took everyone’s advice and went to the GP, who gave me some medication, which seems to be helping, thank goodness. And thank goodness for a sympathetic GP, and for grandmothers – my mother in law and my mum have both been to stay to look after me and BabyMouse since Mr C has gone back to work. I don’t know what we would have done without them! This week coming will be the first full week I’ve been on my own all day every day with BabyMouse (apart from the health visitor’s appointment), so we’ll see how we get on! Mum has said she’ll come back if necessary, but I’m hoping that I’m well enough to cope on my own now.
Needless to say, becoming a parent takes a lot of getting used to – it was much more of a shock to the system than I expected it to be – apparently this is quite normal! We’re learning more every day; about BM and about ourselves. I was going to make a list of all the things we’ve learned over the past six weeks, but I couldn’t even count them, there were so many (and did I mention my brain isn’t working?). It has been a tough few weeks in many ways, but it’s also been amazing and fascinating and good. And BabyMouse is lovely.
We’ve had a few, well, more than a few, hospital appointments since my first update about BabyMouse, so I thought it was probably time for another one. Apologies in advance for any TMI moments in this post.
This week’s main news, such as it is, is that we had our delivery planning meeting with the specialists obstetrics team and colleagues on Monday. This involved the obstetrician we’ve been seeing in London (cardiac specialist), a cardiologist who works with my cardiologist, an anesthetist and 3 medical students who were there to observe. Unfortunately, we didn’t reach any concrete decisions, mainly because we need to see whether BM will turn into the ‘correct’ position for delivery. She’s in the breech (feet- instead of head-down) position at the moment. Babies usually turn into the head–down position before their due date, but I have a unicornuate uterus (this page has a nice illustration, if you’re interested), so she is a bit squashed in and may not have room to turn. The obstetrician thinks the reason she is small is probably also because of the shape of my uterus. If she does turn, they will induce me for a ‘normal’ delivery by 38 weeks because of the Obstetric Cholestasis (OC) (although the sonographer I saw yesterday thinks it will be before then), but if she doesn’t they will do a Cesarean section, also at 38 weeks. So, again, we will have to wait and see. I was hoping for some more clear cut plans – I like plans – but perhaps that was unrealistic at this stage.
As I mentioned above, we also had another scan with the consultant sonographer yesterday. She was more reassuring this time than last – she said the baby’s head is probably small just because she is a small baby, rather than it being small due to anything more serious (although being a small baby is obviously not ideal in itself if she is too small). So I managed to get home without crying this time…
But when I got home I found a message on my answerphone from one of the midwives at the hospital I’d just been to (I didn’t hear my phone ring!) saying that the mini glucose tolerance test (mini GTT) I had last week showed that my glucose levels are raised so now I have to have the full glucose tolerance test next week to see if I have gestational diabetes! I’m sorry to say this made me quite upset and I did have a bit of a self-pitying ‘why is this all happening to me?/my poor baby’ crying session at that point. It just seems like it’s one (usually bad) thing after another at the moment. But I felt better after speaking to my mother-in-law (ex-midwife) and reading some posts on Gas And Air, a blog I’ve recently discovered, which helped me feel less alone.
In other news, the OC-related itching has got really bad again at night, so I’m not sleeping very well, which probably isn’t helping my positivity levels!
As we have just had an ‘interesting’ baby-related few days, I thought it was probably time to write something on this blog about BabyMouse or BM, as she (we think) will be known on this blog.
At about 26 weeks pregnant (about two weeks ago) I started itching a lot, so, being someone who worries about such things, I went to the GP. She was on the case and I had a blood test done straightaway, which was just as well because it turned out that my liver function has gone a bit wrong and I’ve been diagnosed with obstetric cholestasis (OC). This doesn’t do me much harm, apart from the itching, which is just annoying, but it can be very bad for the baby in the later stages of pregnancy, so it is rather worrying to be diagnosed with it. I now have to have regular blood tests, which are always fun when your veins are small and refuse to let go of their blood! But still, it must be done.
The drama we had over the weekend developed because I was worried about the baby not moving very much overnight on Saturday. I’d been advised to keep a close eye on her movements because of the OC, so I may have been over-cautious, but I was really worried, so we went up to the maternity triage at the local hospital quite early on Sunday morning. They were lovely and supportive, and did a lot of monitoring of the baby and some more blood tests (it took 7 attempts to get any blood out by Mr C’s reckoning and I now have bruises to show for it! P.S. I hate needles), and decided to keep me in on Sunday night until Monday afternoon, just for observation as a precaution given the OC and my pre-existing heart condition.
Fortunately, BabyMouse woke up whenever she was attached to the monitor and performed her moves very well, so we were able to go home on Monday afternoon as promised. We were given some steroids to help her lungs develop, as it’s likely that she/I will have to be induced early (37-38 weeks) as is the usual practice nowadays with women who have OC. I also now have some medication (Urso) which should help stablise the liver function and reduce the itching. I also have a large pot of cream and some bath oil to help with the latter. Apart from taking the medication, monitoring the baby and my liver function and probably delivering the baby early there is not much that be done about the OC, so we just have to take things as they come…which of course is easier said than done.
Alas, we have an additional thing to worry about in that BM is quite small for her age. This is not necessarily a problem as lots of babies are small and turn out fine, and my cardiologist had already said that our baby might be small because of my lower-than-average oxygen levels. However, the smallness of BM’s head is a particular concern, so we are having extra scans to monitor her growth. We had the latest one of those yesterday. The consultant sonographer was kind, but didn’t pull any punches when telling us what the worst case scenarios could be and I found it quite upsetting (understatement). Even Mr C was not his usual chirpy self afterwards. But the facts on the ground as not that bad – it’s just knowing what bad things could happen that makes one sad and worried. As Mr C said yesterday, perhaps it was better in the past when we didn’t know so much about baby development – but of course it’s good to know if you can do something to help, it’s just hard when all you can do is wait and see.
P.S. If you are pregnant and find yourself itching a lot, it is important to go to your midwife or doctor and let them know, just so they can rule out OC. It’s unlikely to be that, as it only affects about 1 in 140 pregnancies in the UK, but it’s worth getting it checked out so you can and the baby can be monitored if necessary.