Author: bethvonblack

A disabled yet glamorous and elegant fashion and lifestyle blogger afflicted with an unusual love of the gothic and macabre.

The Results are IN!

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

 

 

 

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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. He reckons everyone’s on the spectrum a little bit – when he said that, I kinda fell in love with him a little bit more! 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 things no one tells you about being a first time buyer…

In May 2017 my partner and I set about looking for our first home together after 3 years of hard saving and scrimping and some help from a very wonderful Aunt.
We finally moved into our first home on Friday 13th October 2017 – yes, we are aware that we are nuts to choose to move house on Friday 13th but if you knew us as a couple, you probably wouldn’t be surprised!

Here are a few tips we picked up along the way – some obvious (now, in hindsight!) and some not so obvious…

ONE

Know thyself. 

When I say this, I mean know exactly what you want in a property before you set out – it really helps to have a firm idea of what you need vs what you want. We agreed very early on that we would never consider purchasing either a flat or a new build – a period property (Victorian, or Edwardian at a push) was the ONLY option for us and we stuck to that – even when offered to view affordable 1930s properties, we stuck to our guns because we knew in our heart of hearts what was right for us.

TWO

Know the Compromises

We knew we’d never be able to afford a ‘liveable-inable’ house straight off. We viewed some real shit holes to begin with then as we viewed more properties we learned what certain things mean in property listing on sites like Zoopla and Rightmove; such as a ‘manageable, low maintenance garden’ usually means a concreted or paved courtyard that you couldn’t swing a dick round.

There was one thing we were not prepared to compromise on, and that was the garden. We did however, fall in love with a property that had quite a tiny garden but we put an offer in anyway as the house itself was almost perfectly formed. Thankfully, we didn’t get that house – we found a house that was even better with a BIGGER garden in the end – so, perhaps ignore that bit of advice 😉

THREE

Know your limits

If you’re confident at haggling then this will definitely stand you in good stead for the ‘making an offer’ part. Be prepared to hear the ‘big sell’ – things like exaggerating how much interest they’ve had in the house, exaggerating how many offers they’ve had and even being asked after you’ve made an offer, if you can offer more. If you have trouble saying no, then try and get some help from friends or family to give you support while you make your negotiations. Don’t be fooled into thinking the estate agent is working on your behalf – they are not, they are working for the SELLER to sell the house at a price they want (and the estate agents really want to sell houses and get their commission!)

FOUR

Know your budget – and stick to it.

When we agreed on our budget, we decided on what we could afford to offer and we stuck to it. We stuck to our guns so that we didn’t break into our ‘renovation fund’ that we had running alongside our deposit fund. We sat down and agreed on the mortgage we could afford – we did not go for a huge mortgage, we saved for a bigger deposit instead. We agreed that being mortgaged up to the hilt is not for us and we want to have a good quality of life while we pay off our mortgage; so we worked out how much per month we could live comfortably on while paying the mortgage.

FIVE

Know your geography or at least learn it! 

We moved to a relatively new town – I’d been a frequent visitor to the town for years but have never really paid any attention to anything other than its shopping centre. We learned very very quickly from many many viewings which areas to avoid! There were around 6 areas of the town and we very quickly shaved 3 areas off the list simply by viewing houses in the area. The best piece of advice I can give you is ‘buy a not so great house in a great area, not the other way round’ because after all, LOCATION, LOCATION, LOCATION. It’s a cliché  but it’s true.

SIX

NEVER Scrimp on a survey

I spent months reading and researching Victorian properties and quickly learned a few important differences between new builds and period properties. I phoned up innumerable surveyors and asked how they measure for damp – old houses are usually damp and I found a wonderful gentleman called Peter Ward (look him up on Youtube) who knows everything about period properties – from his site I learned that a decent surveyor won’t use damp meters. They will know that victorian properties need to breathe and will point out things that a not-so-knowledgeable surveyor may not notice. I can personally recommend 1st Associated surveyors – we had a full survey done and the report was over 100 pages in length and was incredibly detailed. Even our estate agent was impressed with it – it helped us to re-submit a lower offer taking into account the structural issues with the house that we wouldn’t have known about without the survey. It wasn’t cheap, but it was absolutely worth every penny (or pound!)

SEVEN

KNOW YOUR PROPERTY

LIME EVERY TIME

The most frustrating thing I found when viewing properties was how much damage people have inadvertently caused when ‘modernising’ period properties. Seemingly simple things like re-pointing brickwork with cement mortar instead of lime mortar can severely impact the level of damp in a house. Cement mortar creates a barrier that means that moisture in the house cannot escape the way it was designed to – through the bricks and mortar.

Another death to period properties is double glazing windows (and in lots of privately rent homes, we noticed very few extractor fans were in use) and no ventilation – and hence, damp and mould.

PERIOD PROPERTIES NEED TO BREATHE – That is the difference between new builds and period properties.

Also look out for modern plastered walls – always try to replaster period houses using lime based plaster, not gypsum plaster, so that the house can BREATHE.

A Final Word

For us, the biggest hurdle when buying a house, was the deposit. It took us years and years of living separately and saving. We lived within our means (and continue to do so) and saved as much as we could get away with, without leaving ourselves ridiculously poor. We went without – I didn’t fritter my money on clothes or shoes and when we did buy things, we bought things ‘for the house’ – like furniture (thank you to my Mum and Dad for allowing us the use of their loft as storage for the past 3 years!)

The hard save is worth it – that pair of shoes or latest games console, is not.

Your deposit is what gives you freedom – freedom to choose a decent mortgage, a decent property and gives you freedom to own more of your house from the outset. In my opinion, there is no point putting down a 5% deposit and paying a huge mortgage for 35 years and living hand to mouth. Live within your means. Good Luck!!!

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Buy to Let – a scourge on our society.

The last blog I wrote was about a dream house we’d found and put a sealed bid on. Unfortunately (or fortunately) we were unsuccessful in bidding on this house, as we were trounced quite heavily by an investor with deep pockets. The dream house has now been sold to a Buy-To-Let owner and will be ‘tarted up’ and put on the rental market.

My personal feelings towards people who use housing as a way of propping up their pension is quite a strong opinion. As a woman in her early thirties, I know how hard the average Joe has to work to pay extortionate rents. I know first hand how unsettling it is living in a private rented house or flat, when any minute an eviction notice can be shoved through the door. In fact, my partner has recently been evicted from his flat due to the owner selling up – that’s happened to him twice in less than two years.

This country is in the middle of a housing crisis. There are more and more buy-to-let owners out there, and it doesn’t seem to be slowing down – even with the increase in fees for BTL owners. You see on property programmes men and women in their early sixties with property ‘portfolios’ and it disgusts me. I firmly believe that there should be a cap on the number of properties one is allowed to own. There are simply too many rental properties and not enough houses to buy at affordable prices.

 

 

 

Victorian House Hunting!

I last wrote in March about how uneasy I was feeling about my life. It’s amazing how quickly things can change.

Tomorrow, I turn 31 and on Saturday I’m taking my other half to view a house that I’ve fallen in love with. It’s a beautiful (yet slightly dilapidated) Victorian Terrace in a village and is full of potential for our first home project.

I’ve written previously about my passion for history and my biggest obsession in life has been wanting to buy a Victorian house and restore its original features like fireplaces and open fires, sash windows and corbels etc.

Luckily for me, my partner in crime hates new build houses as much as I do, so we quickly agreed we wanted to buy a period property and do it up in the style we like. We settled on a Victorian terrace. My Grandparents owned a Victorian end-of-terrace in Liverpool and we visited them during my childhood. I can still remember the high ceilings, big rooms, beautiful wooden banister, the red carpet running up the stairs with stair rods, the stained glass porch and the bakelite light switches. From the age of around 8 I fell in love with that old, dilapidated house and I’ve been determined to own something so beautiful myself.

With that in mind, we started house hunting only a few months ago, and in the space of around 2 weeks we viewed 11 properties of varying states of undress (!). The first Victorian house we saw had a 200 foot garden, which had such amazing potential, especially for us, as we’re keen to get green fingered and I’m something of a Hedgewitch. Unfortunately, the house (or cottage!) itself was “compact and bijou”, in need of an awful lot of TLC and the kitchen was the smallest kitchen I’ve ever seen with the lowest ceiling I’ve ever seen! Suffice to say, we let someone else take a punt on that house!

Next came another Victorian terrace that had been refurbished upstairs but not downstairs so the 1970s kitchen was in desperate need of being ripped out and started again, with a more age-appropriate kitchen. The road it was on was unbelievably claustrophobic, so that was a no from me.

We then went to view 2 properties a few doors down from each other. Both were previous HMOs (houses in multiple occupation) and were damp as f*ck. There’s no way we could afford to sort out the damp and have enough money to make the house liveable in. So they were instant nos.

It’s actually incredible how fast you learn when you’re thrown into the deep end of a project. I’ve never lived anywhere other than in my parents council house – it’s a terraced house built in the mid to late 70s and structurally, we don’t do any maintenance to it as it’s not our responsibility. So, looking at Victorian buildings with absolutely no experience in home owning/building has been a very steep learning curve already.
I’ve spent many hours researching how to renovate old buildings, and together, we have built quite an arsenal of knowledge over the past couple of months. I’m actually rather proud of myself – I’ve spoken to mortgage advisors, estate agents and the like, and I’d never done anything so grown up in my life. I definitely feel like I’ve achieved so much personally, already.

Knowing what we know, we’ve narrowed down our search radius to two areas of a town we want to live in. We’ve excluded ‘rougher’ areas from our search as we’re in the mind of buying a ‘shit house, in a decent area’ and making it nice. Postcode means a lot to us.

I have to say, I have, at this stage, fallen in love with a house. It’s everything I want (even if the garden is a little smaller than I’d like, it has potential to be really cute) and I can really imagine us living there together, as a family. I can already see what I could physically add to the house (stripping and painting architraves for example) and I can see the wallpaper I’ve chosen on the walls and the fireplaces opened up and restored with open fireplaces and wood burning stoves. It’s in a beautiful village on a beautiful street of Victorian terraces that all look loved and cared for…

The Big But…

Unfortunately for us, I can say with absolute certainty that this ‘dream house’ is also going to be the ‘dream house’ for many other house hunters. The house is for up for informal tender – this means that you view the house, then you write a ‘sealed bid’ – hand your sealed, secret offer into the estate agent for the vendor to then decide who they want to sell the house to. It’s a fair way of doing it, but still absolutely heartbreaking if our bid isn’t successful.

I know I shouldn’t put all my eggs into this one basket, but when you fall in love, you can’t stop it, you just have to go for it. So, we’re going for it. We have our deposit, our mortgage in principle and I’m so ready to start my new life with my incredible partner in crime.

I just hope with all I have, that this is the house for us. I’ll keep you posted x

*Disclaimer: Featured image subject to Copyright – the Victorian Emporium*

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

Millennials; Isn’t it time to grow up?

So, I was sat doing the usual daily scroll through Facebook this afternoon and it occurred to me how many memes there are making light of twenty-somethings and their failures…


But it wasn’t always like this. In the 1940s, at the age of twenty they were enlisted and sent off to war. They were MEN, fighting for this country, taking responsibility for their country and their family, often leaving their wives behind to work in the factories and fields.

In 2017, I am surrounded by men in their late twenties who simply refuse to grow up. They spend their wages on nights out, illicit substances, booze and then fall into their (private rented) bed with a takeaway. This happens regularly and they then sit down the pub and moan about how much debt they’re in, how awful their relationship is or how much they hate their job (in some cases, all three!)

And I’m sitting here thinking… Grow the fuck up! Take responsibility for the (terrible) choices you’ve made that have put you in the position you’re in now. If you hate your life so much, do something to make it better instead of burying your head in the sand (or by shoving coke up your nose) and hoping it’ll go away.

I’m no saint, of course. I’ve made some not-so-sensible decisions in my 30 years I’ve been alive, BUT I can say that I have made the best of a bad situation.

Through no fault of my own I still live with my parents. I was born with a disability that means I cannot support myself financially and as I live with my parents, I do have disposable income. However, I have not disposed of this income in the way I described above, for the main reason of knowing how hard my future will be when I can no longer rely on my parents.

At the age of 13 I was given £200 when my Grandma died. It went straight into a “car fund” that I set up for myself because I have always wanted to drive and be independent. The Car Fund grew, slowly and it has been used to buy myself a car.

I was in a nasty car accident at 19 and got a nice chunk of compensation. Of course I bought myself a new wardrobe, a flatscreen TV and a laptop. I went on to sell the TV and I still wear most of the clothes I bought back then (and they’re now falling apart!). I like to think that I’m careful with money and appreciate how lucky (or unlucky!) I have been to have what I have.

Others don’t seem so grateful. If anything, they appear like spoilt brats to me; they’re able bodied, able to earn thousands of pounds a year, yet due to bad decisions, they’re scraping by every month and continue to moan about it and posts memes on their Facebook making light of their seemingly miserable lives.

I am fully aware that I’m not perfect, but I can say I am an aware and authentic person who is trying to think about my future and plan for it.

I’ve been sensible with money and I have chosen a partner who is also good with money yet it wasn’t an accident – if I happened to get into a relationship with someone to find that they were terrible with money (like my own father is) I would run for the hills. According to an article in the Huffington Post money problems (and incompatible views on money) is one of the biggest factors in divorce in the modern age.

It’s not just about money though, I think it’s about maturity. It’s a known fact that men mature later than women, but I’ve also noticed the abundance of women in their twenties who still love Disney, still fantasize about finding their Disney Prince and refuse to grow up. It’s an epidemic. We are still behaving like children well into our twenties and thirties.

Millennials, isn’t it time you grew up?