What does she look like again?

Reading up on autism, back when I was starting in this journey of self-awareness, I came across the term prosopagnosia or ‘face blindness’. I had thought ‘huh, that’s interesting, but not something I suffer from’ and quickly put it out of my mind. I mean, I’ve never mistaken my husband or children for anyone else, and doesn’t everyone get confused when their doctor bumps into them in the supermarket, in their ‘civvies’ as it were. 

But, like so many things when it comes to autism, I now think I may have a mild form of this. Yes, there was the double take I did when my new GP recognised me immediately and all I had was a vague recollection that I knew her from somewhere. She had to remind me that our sons were in the same class in school, and we lived down the road from each other and passed each other twice every day bringing our kids to and from school. Hmm, yeah, I really should have recognised her. 

And then I realised this was a problem I’ve had for many years. Like the time I hadn’t seen my dad in about a year, and when my mom arrived home from the airport with him and the babysitter joked that she’d brought home the wrong guy, and I believed her. Because, of course, I couldn’t be expected to remember what my dad looked like, right?

Or the time I mistook a girl with long blonde hair for my long-haired boyfriend in a crowded pub. Yeah, totally blamed my eyesight for that, even though my glasses were the correct prescription. All those mistaken identity cases were purely my eyesight, right? 

I was reminded of this the other day, when I needed to get my son’s new paediatrician to sign a form. She told me to pop into the hospital and ask around, as she may be in a ward. I couldn’t find her, so got advised to ask in the Nurses station. So, I asked a lady I assumed to be a nurse. But who was, in fact, the doctor I was looking for. She laughed and assured me she looked completely different without her doctor’s coat on. And this was despite me, on my walk up to the hospital, wracking my brain trying to remember any distinctive feature she may have, despite having seen her and spoken to her in length just two days previously. What did she look like again? She had curly brown hair, maybe. That was as far as I got. 

So, yet again, I’m finding an autistic feature I’d previously dismissed as not being an issue for me, and realising that if I’m being totally honest, that it might be. Oh well. At least I’m in good company!

[image of a side profile of a stylised head, in orange. Inside the head in a blank circle, implying thoughts. Above the head, in black, the words ‘what does she look like again?’]

Tiger Halloween Haul

So, the last post gave me the overwhelming urge to visit Tiger and buy Halloween decorations. So, I did. Lucky I did, as there wasn’t as big of a selection as last week. 

I didn’t buy too much as we still have a lot from last year, but here goes:
[photo shows a large decorative black bat, a large decorative black spider, a decorative pumpkin Jack O’lantern that glows in different colours, a bag of peppermint & liquorice flavoured lollipops with a spider pattern in them, a wind-up skull, a window decor pumpkin Jack O’Lantern, a large cardboard skeleton, a cat-shaped torch and two handheld disco lights shaped like ghosts.]

October* Tiger Haul

*I’m also going to do a Halloween Haul post next week, as Tiger have fantastic stuff for that. 

After two gut-wrenching, soul-baring posts, I’m ready for something more light-hearted. What could be better than my latest Tiger haul! Again, I will write descriptions of the items in the photo in the image descriptions. 

[photo shows three packs of Pretzels, five packs (yes, every pack in the shop) and a chocolate nougat bar.]

[photo shows a box of colouring pencils, a twisty worm toy and a silly “head basket” game that involves putting a basketball hoop on your head and your friend throws them in, and a plastic bag to carry them home in with an orange and black Halloween theme.]


[photo of a pink iPhone charger, two bars of rose soap, a pack of colouring pencils with sharpener built into lid, glass measuring jug, spool of ribbon with three pink ribbons, handheld sewing machine, pack of small cloth bags.]

Small enough haul this time!  But I was saving myself for the Halloween haul!

I thought you were my friend. 

I thought you were my friend. 

But seems I was mistaken on the nature of friendship. 

Seems that it wasn’t enough to stay loyal to you, take your side when you lost ‘the boy’ to your rival in school. 

Seems it wasn’t enough to like the music you liked, to devote myself to promoting your favourite band, to encourage you to audition for it. I was so proud when you did your first gig. 

Seems it wasn’t enough to ‘get off with’ with your abusive boyfriend because you wanted to win some kind of bet with him. I never really understood what that was about, but went along with what you wanted. You seemed dissapointed when I told you he wasn’t that great a kisser. But I would never lie to you.

Seems it wasn’t enough to listen to you bitch about my sister and not defend her. To take your side against my own flesh and blood, at least for a while. (Sorry sis!)

Seems it wasn’t enough to tell you first about my engagement, my first pregnancy, about everything. To tell you things I never told anyone else. To let you read my diary. 

Seems it wasn’t enough to leave you my engagement ring in my will. At the time, it was the only thing of value I owned. I would have given you my last penny. 

Seems it wasn’t enough to ask you to be my witness, to sign my marraige certificate. I did not have any bridesmaids, so that was the biggest honour I could think of. Again, I chose you over my sisters. 

Seems it wasn’t enough that I asked you to be Godmother to my daughter. She’s going to wonder why I chose you. But of course I chose you. 

Seems it wasn’t enough that I would have died for you. 

Because I thought you were my friend. And I thought these were things you did for your friends. 

But it seems I was wrong. 

I let him. [TW rape]

I was tidying the guest room and came across some dusty old diaries. That was the end of tidying, as I proceeded to sit on the floor and read them all. Then I came across this passage and burst into tears:

So then we went back (he bought me a rose on the way) and I went to bed. Well, to sleep on the floor. In my skimpy nightie. And then, only a little while later, I felt his lips on mine. The bastard. He took advantage of me, and I let him. I let him. And now I feel disgusted and nauseated but I can’t let him know. I got hopped on. And I hopped back. And we did it lots of times. And I cried because I’m in love with Mahmut. And I’ve told K. but will never tell anyone else. And there is a bad feeling now in the pit of my stomach. He’s ruined our friendship. I’d better not be pregnant. I’m so confused because I still value his friendship, but I feel violated.

[image of the above passage, written in pink pen, in my scrawling handwriting, inside my red flower diary.]

 

img_0565

 

I then described how he dropped me off at the airport the next morning, and how an earthquake hit Istanbul that night, the 1999 Izmit Earthquake to be precise, and the rest of the diary entry describes how lucky I was that I had arrived back in Ireland just hours before, and the frantic search for a missing relative, who was eventually found safe. I was also grieving for the thousands who lost their lives that day.

And so, the events of that night got buried deep inside, and are only recently resurfacing. It has taken me 19 years to even realise I’d been raped.

ETA: As far as I remember, my friend K. (my only friend at the time) viewed the whole incident as me cheating on my boyfriend mahmut Which only compounded my sense of shame. Neither of us ever mentioned the word rape. 

I don’t think he’s even realise that’s what he did. We met a few years later, as my aunt wanted to visit him and needed my help navigating the trains etc in New York, where he now lived. And when she went to the toilet, he made some remark about ‘the earth moved’, a joke in reference to that night and the earthquake. I mumbled something but was a mess for the rest of the day. Because I let him. I ‘hopped back’. I didn’t stop him. I didn’t shout. I didn’t scream. I didn’t say ‘No’. I remember thinking I should just ‘play along’ to get the ordeal over with as soon as possible. After we’d spent a lovely day wandering around Istanbul, followed by a movie and dinner. And I hadn’t packed pyjamas as it was very hot and I’d spent the last month with my boyfriend anyway. So, I was wearing a skimpy nightie. And so I thought I’d ‘led him on’. And so I’d let him.

I was twenty years old at the time, and he was nearly fifty. A family friend, he’d visited me in the hospital the week I was born. He’d seen me grow up. I did have a crush on him as a child. He was my hero. In fact, I’d worshipped him. I’d been upset when, instead of waiting for me like he’d promised (I was about six when I asked him to marry me), he’d gotten married not once, but twice. He was in between marriages on that night. He is still with his third wife, I believe.

Im not writing this because I want to see him punished. He’s in his sixties and has survived throat cancer. I’m not even looking for an apology. (Though that would be nice) I’m writing this for my own sanity, to remind myself that it was not my fault, that I did nothing wrong. That rape culture led him to believe he could take what he wanted, and that I had to let him.

Im also writing this because I now am mother to a boy and a girl. And, when the time is right, they can read this and learn that what happened to me was not what consent looks like.

I’m glad my dad died not knowing about this. It could have killed him. And mom, if you’re reading this, and this is how you’re finding out, then I’m sorry. Sorry I couldn’t tell you to your face. Sorry I couldn’t tell you before. But it’s taken me this long to process what happened, and I didn’t know how to bring it up. What you do with the information is up to you. I’ve said all I’m going to say on the subject.

 

[image is of the cover of my ‘red flower diary’, which has a dark red cloth cover, framed with delicately embroidered flowers.]

img_0564

Consultant Fatigue

I’ve come down with a bad case of what I call ‘Consultant Fatigue’. It’s where I’ve had so many visits to medical consultants that have gone badly, that I really can’t bear any more. Just to convince myself that my feelings are valid, I’ve decided to list them here. I hope I remember them all. I’ve also included price of private consultations. 

Maxillofascial Consultant: this was the first consultant I saw, after my dentist told me that my jaw pain wasn’t from wisdom teeth as I’d thought, because X-rays show I don’t actually have any wisdom teeth. He took X-rays of my jaw, said it wasn’t arthritis, gave me a few tongue exercises and said I had ‘myofacial pain syndrome’ and to ‘Google it’. Then showed me the door. Google told me that, like fibromyalgia, it was one of these pain syndromes that doctors often diagnose when they can’t figure out the cause of the pain. That didn’t give me a good feeling. €180

Orthopaedic Surgeon:  I then went to see an orthopaedic surgeon because my doctor suspected I might have sciatica. My MRI was fine but she said I should see him anyway. He spent 5 minutes examining me, while also seeing another patient in the room next door. A nurse loaded the MRI for him, he glanced at it and said it was fine ( I knew that!) then got me to walk up and down and touch my toes. He said I had an unusual gait, and that my spine was remarkably flexible for my age. That most people would love to be as flexible as that. He said he had no idea what was causing my pain but that I should try Lyrica. I told him I’d had a very bad reaction to that in the past. He was out of other ideas. €200. 

Rheumatologist (1): because I have psoriasis and pain in my joints, I was then referred to a rheumatologist, in case I had psoriatic arthritis, despite blood test showing little likelihood of it. My joints are never red or inflamed. I had asked to see him as a private patient and was surprised when I hadn’t heard back about an appointment after two months. Turns out, I’d been put on the wrong list, the public one, and was told when I phoned up that I’d be waiting over two years! I set the secretary straight and had the appointment within two weeks. This doctor examined my joints and said it was ‘great’ I was ‘so thin’ as it made my joints easier to examine. He also considered himself an ‘expert’ on osteoporosis but when I asked for a DEXA scan he said I was ‘too young’ to be worried about that. (Despite low weight being a risk factor). He then pronounced I had fibromyalgia, prescribed Cymbalta when I refused Lyrica (I reacted badly to the Cymbalta too) and Ixprim and said he didn’t want to see me again. €180

Gastroenterologist: because I had a lot of unexplained gastrointestinal issues, I suspected I might have coeliac disease. The blood test was negative but I asked for a biopsy as well. This was also negative. This consultant seemed to care, but after he had tried various treatments (domperidone, antibiotics for SIBO, PPIs) and they had all failed, he seemed to give up. He prescribed all these things without doing any diagnostic testing, and had a ‘if this works than that’s all the testing we need’ kind of attitude. He refused gastric emptying testing as ‘it’s a very nasty test’ but said I probably did have gastroparesis. He said he could see from the biopsy/scope that I didn’t have Heliobacter pylori but I did have gastritis. But that it was ‘mild’ and the PPIs should ‘kick in soon’. (They never did). When I returned to see him, he referred me to a dietitian to try the FODMAPS diet. €180, €100 (review)

Dietitian: she failed to notice how low my calorie intake was (I found it hard to talk to her so didn’t highlight it but did show her my food diary). She said my food choices were ‘very healthy’. She gushed about the FODMAPS diet. I tried it out. Got more and more obsessed with it, eg emailing in the middle of the night about whether red currants were ok to eat. I had to give it up. €100, €80 (review)

Gynaecologist: as I’d been having random internal pain my GP referred me to a gynaecologist. Though really he was a gynaecological surgeon. He poked around inside me and when I yelped when he prodded my ovary he said that though the ultrasound showed nothing, he wanted to ‘take a proper look inside’ and scheduled me for laparoscopy. Now, I’d had emergency surgery thirteen years before which resulted in an ovary being removed. After my stitches were removed, it had never been looked at again. So, there could have been adhesions so a review was a good idea. He looked, there weren’t any, he gave  the ‘all clear’ and said he had no idea what was causing the pain. At this point I suspected EDS. I told him I may have a connective tissue disorder and he looked at my notes and said ‘ ah yes, the fibromyalgia’. €180

Rheumatologist (2): I ended up self-referring to this doctor as my GP refused to refer me. He has a special interest in EDS and she said it was impossible for me to have it as ‘it’s as rare as hens teeth’. This was after I realised there was more going on with me than could be explained by fibromyalgia, plus the fact that my kids were very Hypermobile and in a lot of pain. This was the first consultant who listened to me rather than looked at the clock. He was caring and considerate and had me diagnosed with EDS within 10 minutes. We had to drive four hours to see him but it was worth the pain and time. He didn’t have much to say in respect to treatment though, except for suggesting Physiotherapy and probiotics. €150

Neurologist: I had changed GP at this stage, and she referred me to a neurologist as I was having bad headaches and tingling/burning/pain in my feet. He hooked me up to a nerve conduction test device and proceeded to test me while talking to me at the same time. He claimed to ‘know all about EDS’ but failed to really listen to me. When I made the mistake of mentioning fibromyalgia, I swear his eyes glazed over. The test was negative, but though I wanted to, I couldn’t tell him that the proper test for small fibre neuropathy was a skin biopsy not a nerve conduction test. He wanted to book me in for a lumbar puncture despite it being contraindicated for EDS unless vital. He also wanted to start me on steroid infusions despite not knowing what he was supposed to be treating.  He didn’t seem interested in the headaches. I went out to his secretary to book the lumbar puncture. And realised that every single patient he was seeing that day was booking one too. That set off alarm bells. When I went home, I phoned up and cancelled it. The next day, I got a phone call from the hospital ‘to confirm the date’. His secretary hadn’t cancelled it. My GP then told me that the neurologist had diagnosed me with Chronic Fatigue Syndrome. First I’d heard of it! I told her that all my fatigue was from the EDS and not a separate syndrome. €180

Gastrointestinal surgeon:  as I was still having gastrointestinal issues, my GP referred me to a gastrointestinal surgeon. He was kind and very interested in EDS. He even opened up a PowerPoint on gastrointestinal issues in EDS in front of me. He said he’d only had one EDS patient before and I was definitely one of his more complex patients. He booked me in for a scope. He found gastritis and a ‘small’ hiatus hernia. He seemed disappointed it was small as if the size was out of proportion to my symptoms. He said it was too small to need an operation, that I wasn’t a suitable candidate for one anyway due to the EDS and put me on high doses of PPIs, to be tapered down by my GP. Again, these have done nothing for me. €150

As I’d spent a lot of money at this stage, and couldn’t claim any back from my private health insurance as we hadn’t reached the ‘excess’, I told my doctor that future referrals should be public ones unless really urgent. When I started getting add tachycardia and heart issues, she referred me to a public cardiologist. 

Cardiologist:  my GP wanted me to get a 24 hour holter monitor to see why I might be getting episodes of tachycardia. After waiting ten months, I finally got an appointment at the hospital. I waited in line for over an hour. The nurse then did an EKG (which the GP had already done) and it was fine. My heart rate was 100 bpm even after she’d taken it three times ‘to be sure’. I then was told as it was my first time there, I’d have to see the cardiologist. He told me that 100 bpm was ‘at the high end of normal but it’s fine’, that because I was so thin I’d be more aware of my heart beating, and made several references to ‘women your age’. I’ve no idea what he meant but could infer he didn’t mean it in a positive way. Then he agreed I need a holter monitor and said he’d arrange it. When I asked when that would be, thinking maybe a week or two, he replied ‘six to seven months from now’. And that was it. This appointment was free, but the wait was very long and he says he didn’t know what he can do for me anyway as normally he’d prescribe beta blockers but can’t because of my low blood pressure and history of fainting. I wanted to ask him for a Tilt Table Test but he was so dismissive I didn’t have the nerve. 
ETA Psychologist: I knew I’d left someone out. I saw a psychologist three times. The fourth appointment, she never showed up and only contacted me to tell me she’d be late, after many many missed calls from me, when I’d already gone home after waiting an hour. I was definitely not going to see her again after that, as she could not be trusted. All she taught me were a few breathing exercises, which I’d already been doing. In total, I spent €380 on her. 

I have also not included the €150 I spent on Myofacial release massage, the €300 I spent on counselling that I left after she started going on about Reiki ‘energy’ and chakras, or the €600 I spent on acupuncture that hurt so bad the Chinese therapist told me I’d better stop. 

I also did not include the €520 I spent on consultants for the children in the past two years. 

So, there you have it. Ten consultants in five years. Not as high as some people I know, but plenty for me.  A fortune in fees and not much helpful advice. 

And this is why I’m avoiding consultants for now. I’m sure you understand! 

[image of a simple drawing of a stethoscope.]

Memories of a Road Trip. Part 3. Lessons learned and tips for Road Trips while Disabled. 

If you have read parts 1 and 2 of this series, you’ll probably have guessed that while this was far from a nightmare holiday, it was also far from ideal. Some things were beyond our control, but other things could have been planned for better. Here are those that stand out:

Dehydration  – At the time, we hadn’t realised how much dehydration effects our daughter. It seems to cause vomiting and diarrhoea for her, as well as resulting from those things, to create a spiral of awfulness. It’s easy to forget, as she claims she’s not thirsty until it’s too late. So next time, I need to make it a top priority. She spent a lot of the holiday sick and miserable and it might have been prevented if we’d realised sooner. 

Nutrition – Heat, travel sickness, exhaustion. All these things tend to sap our appetite. So we went to CVS and stocked up on nutritional supplement drinks such as Ensure and Pediasure. These are great as they don’t need to be refrigerated and are available OTC and for half the price of back home. 

Travel sickness – Yes, a road trip with kids very prone to travel sickness probably wasn’t the best idea. I asked my daughter for advice to include in this blog post. And I think the travel sickness must have been forefront on her mind as her advice was : ‘keep looking out the window, preferably the windscreen, to the horizon and that helps you not to vomit.’ Good advice! But also we discovered Dramamine, which we were able to buy OTC from CVS, and it comes in a chewable orange-flavoured form. We stocked up and still use them for shorter road trips here in Ireland. 

Sleep – Sleeping in the camper van was very tough for me. At least we were able to buy Melatonin for the kids so that made life much easier. Here in Ireland, melatonin is only available on prescription and is very expensive. In the US it’s available OTC as a supplement and is a fraction of the price. So we stocked up! They do have a prescription for it here, and I have to say it’s been a life-changer for us. I’m not sure we could have managed the road trip without it. 

Heat – Again, a road trip in a vintage VW camper van, in California in June, with no air-conditioning probably wasn’t such a good idea. Especially as our son, and to a lesser extent both me and our daughter, is sensitive to the heat. We did have various hand-held fans and water sprays but it wasn’t always enough. I regret not buying something like this cool towel. We did take breaks during the hottest part of the day, but it wasn’t always the most pleasant experience. 

Taking breaks – Again, sage advice from my daughter:’ if you don’t feel well, ask the driver to stop and you can take a break for a few minutes, get out, maybe get something to eat.’ Frequent rest-stops are key to a successful road trip. 

Electronics – I am talking here specifically about ‘screens’ for entertainment for the kids. My husband had objected to me packing anything but my phone, but this was one area where I insisted that I knew best. So we packed the 3DS. Yes, they fought over it and pleaded to use it more often than my husband would have liked. But during a stressful journey so far from home, it was often the one comfort they had and I’m so glad we brought it. 

Realising your limitations – this wasn’t so much a problem for me as it was for my husband. He had an image in his head of certain things that had to happen, and it took him a while, and a lot of arguments and crying by me, before he realised that we would not be doing those things because I (or the kids) was too sore or too tired. He did end up revising his expectations, for example we parked in the car park of the Pfeiffer National Park and he walked to the start of the hiking trail while the rest of examined the map and imagined what it must be like actually being able to hike those paths. This was one area where there was a lot of compromise and neither of us were really too happy with the result. We did a lot less than my husband wanted, and a lot more than I wanted. Also, our son was only very recently diagnosed autistic, and our daughter wasn’t at that stage, so my husband still hadn’t taken on board what that meant in terms of activities that we could do. We did have an ID card for my son explaining he is autistic, so that helped a lot in terms of queues at Disneyland and Coit Tower. But there were still things that my husband had trouble letting go of and accepting that we couldn’t do. And he still didn’t fully appreciate just how exhausting ‘just sitting there’ as a passenger was for me. To be honest, for me, that was the worst part of the whole holiday. 

That’s all for now. I’m sure there are a lot of other tips I’ve forgotten. If you have any others, I’d love to read about them in the comments! 

Note: the photo is one I downloaded off Canva. I don’t seem to have any photos of our camper van that don’t include the kids. Ours wasn’t as beat up as the one in the photo, and was orange and had a pop-up roof. 

[image of a very beat up looking blue vintage VW camper van with built-in raised roof. It is parked along the side of a road. ]