Disability Related

I’m an asshole, but I can’t help it.

I can still remember an interview I had with a tutor at the London College of Fashion – I was 21 and applying to be on their Makeup Artistry degree. The tutor asked me a question, to which I did not know the answer, so I replied ‘you’re the tutor, you tell me’ and suffice to say, I didn’t get an offer of a place on the degree after that interview.

You see, I’ve bumbled along my entire life, ruffling feathers. Something I’ve said will be taken the wrong way, misinterpreted or will be perceived as just plain rude. But the thing is, I don’t mean for that to happen. I’m not wired the same way as the majority of people – I have Autism Spectrum Disorder. Part of the condition means that I lack the ‘filter’ that non-Autistic (Neuro-typicals) people have – tact, diplomacy or whatever you like to call it – I lack. It is a part of what makes me, me.

Apparently, that makes me an asshole. But, at the age of 31 I am so so tired of having to talk my way out of situations that I find myself in, because my brain doesn’t connect the dots in the same way as the majority. I am sick and tired of having to apologise for saying something offensive – most of the time, I don’t mean to offend people, most of the time I don’t understand how people can find certain things offensive.

I am a big, fat asshole and I’m no longer sorry. I cannot help the fact that I have Autism and I am not going to apologise for my brashness, for my rudeness, for my belligerence (as a music teacher once said I was) I am wired differently. I say things how I see things and I’m incredibly matter of fact about things – I always have been that way.

So here I am, saying SORRY NOT SORRY for being tactless, undiplomatic or rude. If you know me, you know that I love fiercely, am passionate and I care deeply about the people closest to me. I want to look after people, take care of people and I am not a bad person. Yes, I put my foot in it all too often, but isn’t it time YOU made some room for us Neuro-divergents (people with Autism) who are just being themselves. Stop being so offended by something someone says and understand that the things we say come from a place of innocence and naivety not malice.

I do however, want to say thank you to the people closest to me, who over the years have experienced my lack of filter and have stayed put. They didn’t ‘unfriend me’ for something I said once, and they haven’t disowned me because I hate children (yes, I hate children) and they love me regardless. That is what I’m most thankful for that is what empowers me to keep being me.

Maybe, just maybe….the world would be a better place if we just let people be without trying to change them to fit into the Neurotypical World. Oh well, a girl can hope.

Signing off, Big Fat Asshole xx

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Disability and Travel

Me and travel have a complicated relationship; I’ve even go so far as describing it as a love/hate relationship.

You see, I’ve always loved to travel. When I was a kid, we drove to Cornwall for two weeks every summer. As I got older, we went further afield after my long suffering Mum forced my Dad to go on a ‘proper holiday’ and during my GCSEs we flew to Greece for the first time. I was hooked. My mum and I will often just jump in the car and drive and see where it takes us. We love freedom and finding new, beautiful places.

Like most families, we had our favourite holiday destinations; Portmellon in Cornwall, near Mevagissey – where I spent every year of my childhood from nappies to GCSEs. Once my Dad had gotten over his fear of trying something new (we think he is also on the Autism spectrum, but denies there is anything wrong with him!) he threw himself into every Greek holiday we had after that – he learned basic Greek very quickly and we made friends with the locals in Petra on the island of Lesvos – it became a regular occurrence.

I haven’t been back to Lesvos since I was in my early twenties, but I definitely have the travel bug now. In recent years I’ve been to France, Italy, Germany, Belgium, Switzerland, Iceland, Hungary and the Czech Republic. We came back from Morocco (my first foray into out-of-Europe travel) on Saturday and we are now looking at our next adventure  even further afield – south east Asia.

This all sounds rather wonderful, until you consider that I am unlike most people and travelling is not easy when you have several invisible disabilities. I was diagnosed with Ehlers-Danlos Syndrome Type III (Now called Hypermobile EDS) when I was 19 so for years now I’ve had to make certain concessions as a keen traveller. Now, with my most recent diagnosis of Autism Spectrum Disorder, do I have to consider MANY things before we even book our flights.

How much walking is involved?

This is the question that rules my life. Because of my EDS, I cannot walk very far at all without being in pain. I have painful feet, ankles, legs and back. I also tire very very quickly and if I push myself too far on the first day of my travels, the rest of the holiday can easily be ruined. I wish I could just ‘book it, pack it and fuck off’ as Peter Kay so eloquently put it during one of his stand up routines, but sadly, I cannot – we have to research the fuck out of where we’re going, we have to make sure there are either taxis, horse drawn carriages or tuk-tuks – hell, I’d ride a donkey if I had to, just to see some of the world.

How hot/cold/wet does it get?

Another irritatingly complex issue I have, is with the weather. Again, we have a love hate relationship due to a condition I have called Postural Orthostatic Tachycardia Syndrome – this is basically my body failing to cope with certain movements like going from sitting to standing and my blood pressure drops so much I feel dizzy, faint and I lose my vision for a few seconds. Heat is my biggest enemy.

So, not only do I have to consider how hot it gets, but also how wet – because if you’ve ever had the misfortune to have arthritis or any other type of joint injury or pain, you’ll know that wet, damp weather is torture on the body. I absolutely love travelling around Europe, but the dampness is often a problem, so I have to go armed with heat packs a plenty.

Do I have enough earplugs?

I have struggled to sleep when there is background noise for many years now and it seems to be getting tougher and tougher. I cannot sleep in noisy environments so booking a cheap stay at a hostel and sharing a room with other travellers is a no-go. I can’t even sleep with my Fiance unless I have at least one earplug in – just someone breathing next to me is enough to bring on an autistic meltdown.

Where shall we prioritise?

Ehlers-Danlos Syndrome is degenerative. That means, it’s getting worse as I age. That also means that we have now had to start planning which destinations we want to put on the top of the list and which destinations we can afford to hold off on. We really REALLY want to travel to Peru to see Machu Picchu but the sheer size of it and the fact that it is an incredibly physically demanding place means that we’re going to have to do it sooner rather than later. The older I get, the harder it is going to get to travel around the places like this. I’ve looked into holidays for disabled travellers and there is a company out there that will literally carry you up the mountain to Machu Picchu in your wheelchair. Sadly, we’re a couple on one salary (of a Primary teacher!) so we cannot afford to book a package holiday like that – we have to do it ourselves somehow. And we will, we just have to figure out the logistics.

We spend so much time and energy planning our travels. We have to. I am limited physically and mentally. I find ordinary life incredibly tough, so add the complexity of foreign travel and you can imagine how hard it can be.

Which airport/airline is best for Special Assistance?

We have only recently realised that there is something called Special Assistance. Basically, the airport or the airline have people on hand to help disabled travellers get around the airport and on and off the planes. I booked my first airport assistance when we were flying from Gatwick to Germany and after quite a wait, I was transported via Wheelchair from Departures to the gate. As you probably know, it can be quite some distance to whichever boarding gate your flight is leaving from, so being able to save some energy was a real help.

I have to say,  we flew to Morocco from London Luton and the special assistance service was absolutely fantastic. We somehow managed to arrive rather short on time so the guy rushed us through security via the Priority Boarding lanes and I was also escorted onto the plane via a lift that meant I didn’t have to tackle any stairs at all. I couldn’t fault the service at London Luton aiport. Thank you!

Marrakech Airport also, took me by surprise. As soon as we got off the plane, there was a gentleman and a wheelchair waiting for me. He transported me through the airport, through security (there was apparently a 45 minute wait for able bodied passengers) and he even took us to the Bureau De Change (you can’t take currency into Marrakech, you have to exchange it when you’re there) and then out to the taxi rank. The service when flying back from Marrakech airport was also fantastic – I was transported straight to departures, through security and the only waiting we had to do was for the gate to open! I was so so surprised by the hands on attitude to disabled travellers at Marrakech airport. It is strange to say this, but we had a far far better experience being disabled in Morocco than we have visiting some places in England! Thank you Marrakech ❤

Can we afford it?

I can imagine a lot of our friends/acquaintances wonder how we manage to travel abroad at least once a year and have a mortgage on just one salary – the answer is; living frugally!
Honestly, it’s as simple as that. We don’t smoke, we buy a bottle of wine maybe twice a month and we eat a mainly vegetarian diet (I eat meat when we eat out – usually using Tesco vouchers – thank you Mum!) and we are big savers. We don’t live a hugely expensive life – we don’t have Sky (we’ve only just bought a telly with money given to us for Christmas) and we are lucky enough to be on a friend’s Netflix account (massive massive thank you to Andreas, you beaut!) so we can afford to pay our mortgage, bills AND save for our holidays abroad. We rarely go out socially and we also brew our own beer – or rather, my other half does (I’m wheat intolerant, of course – not to mention lactose intolerant too but that’s another blog!)

So you can see, if you make the necessary sacrifices, you can do more. You can choose to attend the same festival year in year out (not my thing, but if that’s what you like, I couldn’t care less!) or you could travel further and see more of the world.

We have travelled by car, ferry, bus, train, airplane and horse and carriage – we will see the world by any means necessary. That is how important travelling is to us as a couple, and how important it is to me, as someone with disabilities. I will not let my illnesses define me, or stop me from living my life. If I can do it, you can too!

I AM Autistic! (duh!)

On 8th December 2017 I sat down in a psychologist’s office and underwent a series of assessments/tests that are used to diagnose Autism Spectrum Disorders in adults. I discussed my childhood, my teen years and my struggles in life both as a young person and as an adult. My Mum also filled out some forms about me and also answered some questions from the Psychologist about me as a toddler – it’s easier to diagnose ASD if they have a decent amount of history from around the age of 4, so it was really important that my Mum attended with me. I left the appointment and Christmas and New Year came and went….

Six agonising weeks passed and finally my result appointment was here.

I sat down in my psychologist’s office once again, and nervously grasping at my coffee, I waited with bated breath. She asked me what I was expecting or hoping for and I answered honestly, while looking at my feet, “I’m hoping for an ASD diagnosis”.

A slow pause and she starts reading out parts of her report (that she had yet to finish) and listed how many points I scored for certain questions and how that measured up to a diagnosis…….

It turns out that on the ADOS 2 assessment, I scored 9. The threshold for an ASD diagnosis is 7, so I can say that I am officially diagnosed as being on the Autism Spectrum and I have Autism Spectrum Disorder. I am not ‘neuro-typical’ – not that that comes as a huge surprise to anyone that knows me, personally!

Part of the report says  “she did not ask for information during the ADOS 2 in a social manner; that is, she did not inquire about nor express interest in the examiner’s thoughts, feelings or experiences, even when presented with a leading statement to investigate further.”  – I feel particularly embarrassed about this part of the report, as it seems so obvious to me looking back. I remember the discussion and kick myself that I didn’t ask her any questions about herself – but then, I also have to remind myself that this isn’t my fault. I am autistic and part of that means that I do not consider other people’s feelings or thoughts instinctively, like neuro-typical people do. It is something I can now understand and accept.

Being diagnosed with Autism wasn’t a surprise to me, but it did take me a week or so to let it sink in – I wasn’t ‘normal’ and after 31 years, it’s a shock. It did though, validate my feelings that I was innately different to the general public – an inkling I’d had since I was a young teen.

However, I now have to navigate the world knowing that my brain isn’t developed in the same way as most people. This means I’m now constantly questioning myself and trying to figure out who I am. Questions like ‘is this my autism, or is this my personal taste?’ and things like that. How much of what I do and say is down to being autistic? You can see where I’m going with this…. it has opened up a can of worms in a sense.

In contrast, it has also given me a sense of relief. Relief that there is now a clinical, medical reason for why I have found life more difficult, more stressful and less enjoyable than most people. I’ve struggled socially since I can remember and now I know why; it wasn’t my fault that I couldn’t keep friendships going through school. It wasn’t my fault that I was in my early 20s before I had a boyfriend and lost my virginity. Social skills don’t come naturally to me and now I understand why. I understand why I’ve struggled with Social Anxiety Syndrome since my teens; it turns out that Ehlers-Danlos Syndrome and ASD are often seen together – anxiety disorders are also co-morbid conditions often found alongside EDS and ASD – and I have all 3!!!

So that explains it. I’m autistic. I am autistic. And that’s okay. I guess that also makes me somewhat of a genius in a way… I’ll get onto that in another blog post!

Ta ta for now xx

 

 

 

Adult Autism (ASD) Assessment

On 8th December 2017 I attended a private practice in my hometown, for an adult autism assessment and I thought I’d share with you how it went and what happened.

Firstly, I shall briefly explain how to get an NHS assessment if you think you may be on the Autistic Spectrum. The first port of call is your General Practitioner (GP). I spoke to my GP about my concerns and he asked me to go home, write down the things about myself that make me think I may be autistic, give it to him and he will then decide if what I’ve written warrants a referral for a diagnostic assessment.

Unfortunately for me and others in my area, our NHS autism clinic has closed, so referrals are now being sent to a local private clinic instead and they take on NHS patients through a GP referral. I’m not sure if that’s a nationwide issue (I’d guess that it may well be) so always ask your GP first – I had to signpost my GP to a referral service myself and find one that would take NHS referrals.

Obviously, my GP thought I made a good enough case for myself, because the next thing I know, I get a phonecall from a private clinic asking me if I would like to book my ASD assessment. A few days later I get 3 emails containing self-assessment questionnaires to fill in online. I wrote quite a lot of detail in those, as I am much better at writing about myself than talking about myself in person – clearly!

The 8th December came and my anxiety was going nuts. I had terrible stomach symptoms (my tummy tells me I’m anxious before I realise how I’m feeling) and sleeping was difficult the night before. I get to my appointment and the first thing I notice is how horribly bright and colourful the waiting room was. Hideous bright lights and yellow cushions. The sofa was pretty cool in that it was a button back chesterfield with dark coloured patchwork fabric on it. That bit, I did like!

So, we go upstairs with my Psychologist and I take my Mum in with me – after all, she knows me better than I know myself (and can remember what I was like when I was a toddler) which is apparently very helpful during an adult diagnosis, as ASD symptoms are easier to identify in children. I think the first part of the assessment was the Autism Diagnostic Interview (ADIR) and My Mum told some embarrassing stories about me – like sitting in front of the tv as a baby, listening to classical music – crying!

Once we’d talked about my childhood, my Mum was asked to leave and we then started on the ADOS-2 (Autism Diagnostic Observation Schedule) and what I’d call ‘childrens tests’ – things like reading a book out loud, that didn’t have any words in it – so describing the story of pictures (which I found incredibly difficult!) and then I had to make up a story featuring random items from a plastic bag of toys and random things. I passed on that one as I couldn’t find a link to any of the items and couldn’t create a story – I have an absolutely useless imagination!!!

The Psychologist told me that there were two other assessments she could do during my appointment; a personality test and a cognitive test. But, as she’d already learned about me doing a degree, she agreed that I have no cognitive issues and I don’t have a personality disorder, so we skipped both of those tests. We talked a lot about my childhood and my teen years and not much about my life as an adult – although I thought it was pertinent to explain how I have not had a ‘proper job’ since I was made redundant from working part time with my Mum for a charity in 2010 and that I spend most of my time reading, researching and looking for things on ebay (and obsessively buying antiques for our Victorian home!)

The appointment was over before I knew it. The psychologist walked me downstairs and told me I’d get an appointment for the results of the assessment and it should last around an hour.

My results appointment is on 17th January 2018 – so, I have a SIX WEEK WAIT to find out if I’m on the Autistic Spectrum or not. Suffice to say, this will be the most tense 6 weeks. I really wish my appointment was sooner.. I feel like I’m in limbo right now. I’m watching lots of videos on Youtube of people who’ve had adult diagnoses and I just want to know if that may be me.

Of course, I will be writing up the results of my Adult Autism Assessment and am also considering starting a Youtube channel of my own to help raise awareness of ‘being different’ (I hate that term, but I AM different… I just don’t know HOW!)

If you need any information about Autism then have a look at the National Autistic Society website – it’s been a great help to me so far.

xx

 

Am I Autistic?

This is the question I have been pondering for quite some time now. I wouldn’t be surprised if I am found to be on the Autistic Spectrum – not surprised one little bit.

You see, I’ve always been ‘different’ – at school, I marched to the beat of my own drum, was known for being an outspoken and opinionated person and my nicknames were ‘Witchcraft’ and ‘greebo’. From around the age of 13 I found my dark side and fell in love of Black Sabbath, Wicca and purple lipstick. I had an altar and I cast spells. All of this, of course, meant that I was constantly bullied.

However, none of that made any difference to who I am inside. I’m me. I’m different and always will be. I’m 31 now, and apart from having grown into my looks (and lost 3 stone in the process) I’m as weird or as ‘eccentric’ as I was when I was a young teenager. I’m normally found wearing black from head to toe, which I gather isn’t exactly ‘normal’.

I’ve dabbled in the vintage world, and for a good few years I was obsessed with the 1940s and 1950s and even started my own business selling vintage clothing and modelled as a pinup. Then, I got bored of everyone looking the same and I put my vintage wardrobe into boxes in the loft, where it’ll stay until I fancy a change again.

My biggest obsession now is my Victorian home that I share with my incredibly patient and laid back partner. I honestly don’t know how he copes with me and my quirks but 3 years on, we’re still deeply in love. Everything in our home is Victorian, because I like integrity.

Apart from my obsessions, I also struggle to empathise with people. I often put my foot in it and offend people – though with age, I’m definitely learning how to soften it a little. Don’t get me wrong, I’m still doing it, just not as often.

I also don’t like people, generally. I don’t know if this is because I’m a natural introvert, or because I’m autistic, but people annoy me. The herd mentality of most people irritates me and I just want to shake people and say ‘wake the fuck up’ or ‘shut the fuck up’ when you hear them talk about inane things like football or X Factor. I don’t want to talk small talk – I absolutely hate it. It makes me uncomfortable, so I tend to avoid people I know if I see them. It’s not personal, it’s just my own issue I’ve always had.

Facebook has been an interesting journey – especially when you look up people from school to find that they’re all still friends with each other, and most of them married each other too. I think to myself how odd that is – that they all left, went to university (I tried that twice, it wasn’t for me!) and then came back ‘home’ and married their school friends. I find that odd, and frightening. I am only friends with 2-3 people from school and they’re all guys. Most of the girls were complete bitches. I don’t like women very much, men are easier.

A few things about me:

I don’t like authority. I don’t like uniforms. I don’t like being stuck in an office from 9-5 every day and living for the weekend. I don’t like loud music playing in shops. I don’t like busy shopping centres. I like being indoors, I like being quiet. I like the company of animals. I like to read. I like routine. I don’t like busy pubs – I won’t walk in first. I don’t like plans to change, unless they’re being cancelled altogether. I don’t like big groups of people. Festivals are full of sheeple. I like the vikings. I like strong, independent women. I like feminism. I’m a conservative because I like money, but a socialist because I don’t have any. I’m a walking contradiction. I’m confident, but shy. I’m egotistical. I’m a grammar nazi. I’m a super-recogniser. I have watched the same movies over and over and know all their scripts. My best friends are Carrie, Samantha, Charlotte and Miranda, Rory and Lorelai Gilmore and Lagartha Lothbrook. Fictional people are more interesting and relatable.

So, I’ve decided that I want to know, for sure, if all this (and plenty more besides) makes me autistic. There is ADHD in my family and my Dad is incredibly ‘quirky’ himself. I’ll eat my hat if I don’t end up diagnosed with something unusual.

I’ll be writing about my experience of the Autism Diagnostic Assessment as/when it comes around – it’s booked for 8th December, so it won’t be too long. If you’re interested in following my home renovation journey or my autism journey, please hit the ‘follow’ button and you’ll be emailed whenever I publish a blog post ❤

The Great Unease

One thing I have learnt over the past 10 years since being diagnosed with a life-altering illness, is that I am yet to feel at ease with my life. There comes a time in your life, when you hit the big THREE-O and you’re supposed to have your shit together. Well, I thought I had my shit together; turns out, I haven’t.

You see, I’ve always been an old soul. I’ve always known I wanted to settle down, get married and have pets (never children) and while it seems I am on track with my life goals, I am still feeling the great unease surrounding who I am and what I bring to the world.

Since I was a young teenager, I’ve always wanted to be famous somehow. I wanted to sing, but stagefright put paid to that dream – likewise with acting (for which I was awarded an ‘exceptional’ from my year 8 Drama teacher) and performance anxiety has shrouded my life in many ways.

I’ve always had the fear of being like everyone else. When I was at school I made it my plan to stick out like a sore thumb – and was bullied because of it. But I was stoic in that I didn’t want to fit in and be like everyone else, so I took it and it made me strong.

Yet here I am at the age of thirty, wanting, in part, to be like everyone else. Not, in the sense of I want to be in a job I dislike, pay rent to a greedy landlord and have children drive me round the bend, but in the sense that I want to be a productive member of society. (You have no idea how much I hate myself for saying that!)

Living with an incurable, oftentimes debilitating illness means I am not a ‘productive’ member of society. I am unable to follow my career goals (of which I have had many, shot down in a blaze of smoke) and now I’m left with a sense of ‘now what?’

I felt so compelled by these feelings of unease that last year I enrolled onto a distance learning Degree in History and surprisingly to me, I’m doing very well on my first module (If I was studying at a brick uni, I would be at distinction level!) and I’m really enjoying spending time wisely, studying. I no longer felt like I was wasting away in my bedroom waiting for the weekend when I get to spend time with my partner of nearly 3 years.

However, I’m now nearing the end of my first module (of which there are 6 – one per year) and I’m finding myself twiddling my thumbs again. I’ve started the audiobook of the set book for my next module yet it doesn’t start until October.

People think being at home and ‘off work’ is a dream lifestyle. I won’t argue that it has its benefits – I can stay up as late as I want and wake up as late as I want, for example, but I’m also trapped inside 4 walls for 90% of my day and two thirds of the week. As an unworking woman, I do not have the funds to be galavanting around in a car (I can’t drive manual and cannot afford an automatic car) nor do I have the energy to do so.

I spend my days lying on my bed in various positions (shifting when the pain becomes too much to bear) and it’s demoralising. Seeing all those people on Instagram going places in life makes me feel uneasy. In the pit of my stomach I feel the longing to have a ‘normal life’ like all these people I watch every day.

But then, I have to remind myself, yet again, that I’m not normal. I do have an incurable illness and I will have it for the rest of my life. It’s really really hard to balance this unending feeling of disquiet in my soul, with the knowledge that I’m doing the best I can. I have an enquiring mind and I want to see the world – this is in complete competition with the fact that my body was not built the same way as my mind. My body is broken, but my mind is sharp.

How does one reconcile a life wanted, with the life given? How does one overcome the odds when they are all stacked against you? This is something my mind continues to wonder, while I lie here, in pain, day after day.

Opioid Withdrawal

As you are all aware, I was diagnosed with Ehlers-Danlos Syndrome (Hypermobility Type) and with that, comes a great deal of physical (and mental!) pain. 

Pain rules my life and I have to live around it; I have spent many years trying many different pain medications with varying results.

When I came back from a three week pain rehab programme, I asked my GP to prescribe Fentanyl Patches. He agreed and I went away with a script for 12.5mcg (micrograms) and that’s where it all started. 

I have been a regular codeine taker and it works well for me. I have never felt the need to take it, I only took it when I needed it for pain – so I was not addicted. 

However, when using Fentanyl I quickly found that the 12.5mcg patch lost its effectiveness after only a few weeks and I titrated up to 25mcg. 

25mcg in the grand scheme of things isn’t a massive dose. Yes, Fentanyl is 3 times stronger than Morphine but it’s still a relatively low dose. I was replacing my 25mcg patches every 72 hours and plodded along for a good 8 months. For around the last 6 months I have been dealing with hot flushes as a side effect of the Fentanyl and it became unbearable. 

I needed to come off the Fentanyl and find an alternative painkiller. Little did I know that I had become tolerant to the medication so having weaned myself quickly from 25mcg to a 12mcg patch and then cold turkey, I started the long, painful and exhausting journey of withdrawal. 

I am 5 days into full on opioid withdrawal and it’s hell on Earth. I have suffered with insomnia, cold sweats, restless leg syndrome, shivering, sneezing, coughing, diarrhoea, stomach pain, anxiety and fatigue. 

The absolute worst time is at night when trying to sleep. I have gone through every single pair of pyjamas I own and they were all soaked through. I’ve had to change my bedding several times. I have slept roughly 3 hours the first night, 4 hours the second night, 3 hours the third night and so on. 

I have read so much on withdrawal methods and I decided not to go down the Benadryl route (for the sweats and chills) as it is known to make restless legs worse in some people – and I’ve had enough stress to deal with.

I’ve just got back from seeing my GP who has given me a script for Beta Blockers, to help calm the anxiety and the night sweats. When your body needs to heal, it needs sleep – and if you’re dithering and sweating, you’re not sleeping well and you’re not healing; so I’m looking forward to a small amount of respite and hopefully more than a few hours sleep interrupted by having to strip off my sodden pyjamas and sleep naked (which I hate!). 

As with most things in life; it’s a process. I’m stubborn and I’ve taken the ‘fuck it’ route and gone pretty much cold turkey after just a week of weaning. I wanted to get it over and done with. I’ve got what I asked for and I’m paying for it. 

So, yeah, that’s a brief description of my latest health problems. This is just another part of chronic illness that people just don’t hear about. I hope it reaches someone who has judged another without knowing all the facts. 

Childfree at 30; female sterilisation. 

Eighteen days ago, 30 year old childless me walked into the Day Surgery Unit at my local hospital, with my hand in my partner’s and my Mum on my other side. I was about to be admitted into hospital for an elective Laparoscopic Tubal Ligation – or to the layperson – to have female sterilisation.

I entered the unit with my long term partner (I would say boyfriend, but he’s more than a boyfriend but not quite a husband) and my Mum. Both of whom I couldn’t have done this without. My support network was exactly what I needed. I was so nervous and excited at the same time but having my loving partner holding my hand and my amazing (Nurse) Mum beside me made the whole procedure much easier to take.

The all important support network

If you’re considering having a Tubal Ligation, having a support network around you is extremely important. Making the decision to end your mothering capabilities forever is a huge decision and having family and friends around you, supporting you, makes all the difference.

The Surgery

At 11:15 I was admitted to the day surgery ward. There was quite a long wait but there were some lovely chatty ladies already in the beds around me, which made my stay a little bit more enjoyable.

I was told to take a urine sample with me on the day of surgery (I believe this was to confirm I wasn’t pregnant) so this was given to the nurse and I was told to wait for the Anaesthetist. As I have a rare illness (Ehlers-Danlos Syndrome) I made sure my Nurse Mum explained to my Anaesthetist that my illness causes me to be resistant to anaesthetic, so we made sure both the Anaesthetist and my surgeon both knew before I was put under general anaesthetic.

My Gynae consultant who was performing the surgery came to see me and to tell me about the procedure. He said it should only take him half an hour as it is a straightforward procedure and he’s done many many of them (admittedly, not to too many women my age) and he did ask me if I was one hundred percent sure I wanted to go through with it. He did say that he didn’t like performing this surgery on one so young. (I’ll get to that in a minute!)

Anyway, so the chat with the surgeon went well and I put my not-so-sexy compression socks on and my backless hospital gown and it hit me – I’m going to be put to sleep for the first time in my life and it started to feel real. I was really nervous.

My time came and I was wheeled off down to the Anaesthetic room to be put under. The porter commented on my long unpainted talons and that took my mind of the coming surgery, just for a moment.

The nurse started attaching the heart monitors to my chest and an IV line was put into the back of my left hand. The nurse was lovely and started asking me about my eyebrows (she was surprised to hear that they are naturally arched and I don’t shape them like that myself!) and again, this put me at ease. A mask of oxygen was put over my face as they put the general anaesthetic into my IV… and I was gone.

The next thing I know, I’m awake and I can hear lots of voices but I can’t see straight. I saw a man in glasses peering down at me and I had an oxygen mask over my face. I fell in and out of consciousness for around half an hour (or so I’m told)…

Paul, the man who was looking after me in the recovery room immediately after my surgery, was lovely. He chatted to me about my Ehlers-Danlos Syndrome (I felt a bit like a celebrity, as I seemed to be the talk of the town because it’s unusual to have a patient in surgery with a resistance to anaesthetic) and he gave me a very sugary cup of tea and not one, but TWO packets of biscuits – My mouth was incredibly dry from having a tube down my throat so I only managed a biscuit and a half so he gave me the other pack to take back to the ward with me.

I was in recovery for around 45 minutes. This is apparently unusual but because I’d had to have more anaesthetic and more painkillers (I’m on a morphine derivative permanently at home) so it took me longer to be brought back to the ward.

Oh Holy Oramorph!!

I must admit, I was surprised by how okay I felt having been wheeled back to the ward… and then the morphine wore off…

Holy mother of all things merciful I have never felt pain like it. The pain came from not only having my organs pushed and pulled around, but from the gas they pump inside your stomach so they can see what they’re doing in there. It’s this gas that made my stomach so painful. So, they gave me two lots of Tramadol and when that didn’t work, they offered me Oramorph. I drank it and within 10 minutes I was right as rain again.

Around 20 minutes after the morphine, I was wanting to get up and move around, so I went to the toilet for my first wee. It’s important that you wee after surgery, or they won’t let you go home. I was relieved that I’d peed and eaten so I was soon to be discharged.

I got myself dressed (they encourage you to do as much for yourself as possible) and the nurses all looked at me incredulously, like I’d made a miraculous recovery – I was writhing around in agony just 30 minutes before!

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Shortly after receiving 2 doses of Tramadol and 1 dose of Oramorph!

My Saviours are here!

I text my Mum and within 10 minutes I was walked down the corridor by a nurse and there I saw my Partner and Mum standing there, peering behind the door looking relieved to see me. I’ll never forget their faces in that moment.
We walked slowly and gently to the car (me wearing my pyjamas, dressing gown and slippers) and home to rest I went.

Post Surgery

I cautiously moved around my house for a few days after the surgery, careful not to lift anything heavy or reach upwards. I had a couple of dissolvable stitches inside my belly button and another stitched wound near my left ovary, just below my knicker-line.

Within a week, I started to feel much more like myself and I took a tentative trip outside with my Mum just to the shops for a little walk around. I’m now 18 days post-op and my belly button looks exactly as it did before the surgery. The wound on my left hip is healing more slowly, but it’s getting there.

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I received a pre-assessment information pack that I read cover to cover. It featured all the information about the surgery, the anaesthetic and the recovery.

 

Thoughts

Q: How do you feel now that you are permanently unable to bear children?

A: Exactly as I did before the surgery. I didn’t wake up and think ‘Oh God, what have I done?’ I felt no different whatsoever.

Q: What if you start to regret it?

A: I’m a firm believer in instinct. If my gut tells me something is right or wrong, I tend to listen. At the age of 30, if I wanted children, I would have had them by now. I do not see myself ever wanting children and that is why I made this permanent decision to be sterilised. If in ten years’ time I find my mind wondering about children, I’ll remind myself of all the reasons why I chose to be sterilised in the first place.

Q: …And what are those reasons?

A: One, lack of maternal instinct. I’m not going to wake up one day and feel broody. I have never felt broody.
Two, I don’t like children. There, I said it. They’re loud, they’re messy, they’re expensive, they’re needy, they’re tiring, they’re stressful.
Three, I am an introvert. I am sensitive to the energy of other people and my people-battery gets flat after a short while. Being around a baby or child runs that battery down twice as fast and I would definitely resent it. I need quiet, I need to be alone, in order to re-charge my batteries.
and finally, number four, the “big kahuna” – I am invisibly disabled. My health has been poor since my early twenties and I have several chronic illnesses; two of which, run in my family. I do not believe it is morally right to bring a child into the world if there is a known possibility of them inheriting a health condition.

Q: But what if you didn’t have Ehlers-Danlos Syndrome, do you think you would feel differently?

A: No. I do not believe I would. I listed my EDS as the last reason and there’s a reason for that – I am a woman, first and foremost. I am a woman who has never felt the urge to procreate. If everything in my life was perfect, if I had all the money in the world, If I had a large house, a garden, Nannies, and I wasn’t disabled, I still would choose not to have children. My own lack of maternal instinct is reason enough. I shouldn’t have to justify not wanting children and it shouldn’t rest on whether or not I was physically fit enough to bear a child. I don’t want children, period.

Q: Do you have any words of advice for other women out there who are contemplating Tubal Ligation?

A: Yes, think, think and think again. It is such a personal decision, no one can make it for you. You have to be absolutely sure that you never ever want a baby, because Tubal Ligation is non-reversible. It is a permanent solution.

Q: Okay, so I’ve decided I want to go through with it, where do I start and do you have any advice?

A: Yes; Stand. Your. Ground. Your first port of call (this is advice for ladies in England, I do not know the procedure for private health care or that of US health care) will be with your General Practitioner – they are the ones who refer you to the NHS for the procedure.

Even in 2017, Doctors are reluctant to refer women for sterilisation who are “young” and “childless” (and even in some cases, after having children they still are reluctant!)
You will need to assert yourself at every point, and make your argument clear. When approaching a Doctor, have your facts. Research the procedure, the success and failure rates, research other women’s successful cases and have every answer to their questions thoroughly thought out. I was asked about why I didn’t want to continue with the Mirena Coil and my own feeling is that my body does not react well to added hormones, so I wanted a permanent solution that didn’t involve hormones.
Unfortunately, you will come up against doctors who will refuse outright, either due to their own personal opinions or because they think they know best. My advice is to stand your ground and don’t take no for an answer. If you have no luck with your own GP, book an appointment with another GP at your surgery and ask them to refer you.
I was turned down by my own GP but when I saw another, after somewhat of a fight, I was referred on and then got to be assessed by the Gynae team (they are the ones who make the final decision).

Q: Do you have any other advice?

A: All I can say is, do what is right for you. I knew deep down I didn’t want children at a very young age. I did wait until I was 30 to broach the subject of sterilisation and I did try every available form of contraception before making the huge decision to be sterilised.
I won’t sit here and say it’ll be easy, or that you won’t regret it – the decision is 100% yours and you have to be prepared for the possibility of regret. If you can accept that, then good luck to you on your journey to being childfree.

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“Motherhood is not for every woman, and that’s okay.” – Beth Von Black

Sterilised at 30 – part 3

On 28th October I sat in the waiting room of the Gynaecology department at my local hospital (alongside lots of pregnancy bellies) and I couldn’t sit still. I was incredibly nervous.I could feel my pulse pounding all over my body. My boyfriend of just over two years was sat next to me, holding my hand in one hand, and a book in another.

It didn’t take long for me to be called in for the initial weighing, height taking and blood pressure. All was normal (which is surprising, considering I normally have low blood pressure, but I put that down to the fact that I was feeling rather stressed in this instance!)

Then, I was ushered into another room. The lady asked me all sorts of personal questions about my menstrual cycle, my sex life and she asked me about the different contraception I’ve tried over the years.

I was quite surprised by the fact that she seemed shocked that my boyfriend of two years wasn’t keen on having a vasectomy – Apparently, when asking for a female sterilisation, the first thing they do is ask if your partner would be willing to undergo sterilisation instead (it’s less invasive than female sterilisation). The fact that he’s younger than me (only by 2 years, but still) and that we’re not yet married meant that I wasn’t willing to try and persuade my other half to make the life altering decision to undergo male sterilisation. After all, my quest to remain childfree has been MY quest since I was a young teenager. It’s not his responsibility or burden.

We moved on to discussing other reasons for sterilisation. As you are probably aware, I have Ehlers-Danlos Syndrome Hypermobility Type, which is a debilitating, degenerative and genetic connective tissue disorder. There have been reports (from specialists in the EDS field) that suggest a link between the Mirena Coil – which I currently have – and the worsening of EDS symptoms. I know for a fact that my EDS flares up during that time of the month and if I can have the option to go without any hormonal contraception, I would benefit from it; emotionally and physically. The lady doing my assessment was keen to refute the idea that the Coil could have any effect on my EDS but I held my ground. I made in clear that I wanted rid of all hormonal contraception, end of.

She then went to another room to discuss this with the Consultant. 5 minutes later, the consultant came in, shook my hand and said she understood that I have Ehlers-Danlos Syndrome and asked me who else in my family has the condition. I explained that my sister and mother are both hypermobile, as were my Grandmas on both sides of my parents. She explained that she understood that EDS is an autosomal dominant condition and was happy to give me the go ahead for female sterilisation.

I couldn’t believe it, I grinned from ear to ear. I said thank you very much, and she left the room. It was then down to the other lady to go through all the paperwork with me and explain what’s going to happen next.

It was explained to me that there are some risks associated with a Tubal Occlusion and they are: possible perforating/damage to the inner organs during surgery, infection, failure rates and so on. I am due to undergo a Tubal Occlusion using the clipping method which has a failure rate of 1 in 200 which doesn’t sound too great, but as we all know, abstinence is the only way to stay 100% pregnancy free, unfortunately!

But, this was all worth it, to me. Knowing I won’t have any other hormones in my system other than my own, is worth the risk.

I signed the consent form there and then, and even underwent a surgical pre-assessment – bloods and a medical history were taken and I was told that as I don’t work, I may be asked to attend surgery at short notice, which is absolutely fine with me! The sooner the better really.

So that was my (surprisingly short and easy) experience with being referred to Gynaecology for female sterilisation.

I feel I must add my own thoughts.

Firstly, if there is anyone else out there that is young, childless and absolutely sure that they don’t want children and would like to be sterilised on the NHS, I would absolutely recommend talking to your GP about it. My own GP refused to refer me, so I got a second opinion from another GP who, when pressed, put me forward for it.

Unfortunately, with the country and the NHS in the state it’s in, we now have to fight for treatment. We have to put our case forward and fight to be taken seriously. But, the funding is out there for female sterilisation – you just have to make a case for yourself.

I went to my GP fully armed with information on the NICE guidelines for female sterilisation, articles on my genetic condition and articles on other young women being sterilised on the NHS. (If you’re not aware of a young woman named Holly Brockwell, look her up – she has been an inspiration to me, in my quest for sterilisation). Holly fought for four years to be sterilised on the NHS and she had never even had a coil fitted (unlike me, who had to undergo every type of contraception before being taken seriously!) so if Holly and I can be heard, then there’s no reason why you shouldn’t be heard too.

Being childfree is a choice that we all have a right to make. If you don’t want children, that’s entirely up to you and no one should make you feel bad for your own lifestyle choices. Be proud of the life you lead and stand by it. If you’re at all unsure and think you may want children someday…. sterilisation is definitely not for you. It’s a big decision that requires years of thought and you must be absolutely sure.

I’ve never been more sure.

Stay tuned; I will be updating this blog every step of the way and as soon as I get a surgery date, I will let you all know x

Student, once again!

I can’t believe I haven’t written a blog post about the fact that I’m now a student (again!)

I am 5 weeks into a BA (Honours) History degree with the Open University and so far, it’s been great! I’m ahead in my studies and handed my first assignment (on Cleopatra and Cézanne!) with 16 days to spare. I figure even if I’m way off the point, the second assignment is a second go at the first assignment so all’s not lost!

This is my desk at the moment (borrowed laptop, antique dining chair!) and it’s not overly comfortable. Having a condition like Ehlers-Danlos Syndrome means sitting is difficult, typing is painful and so is holding a book open! Thankfully the Open University have a great support team for disabled students and they sent me ring bound copies of the course texts so I don’t have to hold them open!

I’m also in the middle of applying for Disabled Student Allowance to hopefully get some dictation software, an ergonomic chair and some other things that will help me study more successfully while being disabled. 

Unfortunately I wasn’t able to attend the Day School as I haven’t been given any funding for travel yet (hoping that DSA will cover this) but I did make it to a local tutorial which was nerve wracking but really interesting. I actually found myself answering all the questions the other students directed at our Tutor so I’m feeling like I’ve absorbed all the necessary information!

I will be writing updates on my studies as this is something that may interest other disabled people who would like to study but don’t know where to start! 

If you have any questions about being a disabled student, please do feel free to get in touch, I’d be happy to answer your questions!