Disability Related

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.

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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.

sterilisation-image

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! 

She Said Yes; Part Two – Sterilised at 30. 

Earlier in the year my own GP said “no chance” when I first inquired about being sterilised. I left it a good few months, booked an appointment with a lady GP who dealt with my Mirena Coil and broached the question with her. She was resistant at first but relented when I pressed the issue – that was on 7th October.

Today, I received a call from the Gynaecology department at my local hospital asking if I can be available in 10 days time for an appointment regarding female sterilisation! I am over the moon!

Because this issue seems to be quite a taboo subject (and a growing number of women are choosing the childfree life) I have decided to document my experience of being sterilised at 30, so that it may give other young women the courage to stand up for what they want in life. It isn’t anyone else’s job to tell you whether or not you want kids, nor that you should live your life having to constantly worry about falling pregnant by accident because for people like me, who are sure about who they are and what they want, there ARE options to make sure we never get pregnant, full stop.

Follow me and follow my quest to be childfree and fabulous!

She said yes!!!

No, this isn’t an engagement announcement, before you get excited… This is a ‘my doctor said yes to putting me forward for female sterilisation’ announcement.

Let me start by explaining how much I do not want children…

I started life like a normal little girl; I loved playing with dolls and pushchairs, I loved playing family with my collection of Barbie and Ken dolls and I had already named my little girl ‘Pansy’ that I was going to have with my first boyfriend at the age of five –  Ryan Bass – Yes, Pansy Bass, that poor imaginary child, I am so sorry.

It wasn’t until after I hit puberty did I really consider having children. It wasn’t something I thought about at all, in any serious way. This carried on until I was around 23 and in my first sexual relationship. I have always been firmly on the ‘pro-choice’ camp but my boyfriend at the time was ‘pro-life’ which, now I look back, is another reason why I’m so thankful I didn’t have to deal with any pregnancies while with this Manchild.

My situation hasn’t altered much in the last 7 years since that relationship ended, in terms of where I live (still with my parents) and I’m no longer able to work, but I am in a long term relationship with a man; a man who teaches children for a living.

One of the first cards I threw on the table during our first date was that I didn’t want children and that it was non-negotiable. Thankfully for me, he was okay with that and he said he’s not fussed about having children either way.

In the back of my mind, I do worry sometimes that my complete lack of maternal instinct will someday impact on my partner’s ‘not so bothered’ status – I absolutely, utterly, do not want to force this lifestyle upon anyone and my choice not to have children is mine alone. I am unwilling to be responsible for any regret someone may have who ‘wasn’t quite sure’ later down the line if/when they then watch their friends have children and wish they had that too.  You simply cannot read people’s minds, no matter how hard you try, so a huge amount of faith and trust goes into a relationship, which isn’t easy!

You may have read previously that I have an inherited connective tissue disorder – possibly from both sides of my parents. It has impacted my life in a huge way and has changed my entire life’s plan more than once. The only time when me and my illness see eye to eye is when we talk about having children (or not!)

My body does not want to carry children, it has made that clear – it can barely carry itself, let alone an 8lb baby. I do not need to go into detail as to how my condition affects me, but I will say that I wouldn’t want to pass this condition on. It’s a horrible illness and I am not prepared to be responsible for a person with a lifelong illness, as horrible as that sounds.
I may get some responses of protest to that statement, but I honestly do not care what anyone else thinks about my view on disability. As someone who is herself disabled, I believe I am more than entitled to have this view on it.

I’ve written previously about my love of sex, travel and antiques and I stand by it. I am thirty years old. Next year, I plan to buy a house with my partner. We plan on travelling all over the world (if we can afford to save enough, whilst paying a mortgage on one salary!) and we like expensive furnishings. We can afford to be self-indulgent and selfish and I want to keep it that way. I love my life the way it is.

To me, having children is like a ball and chain. I personally don’t see any attraction in becoming a Mum. The lifestyle of parenting looks like hard work, that goes unpaid. I do not have a maternal instinct so the ‘love’ I’d feel wouldn’t outweigh all the negatives; the tiredness, the wailing new-born at 4 in the morning, the toilet training, the babyproofing… the list is endless.

My slightly older sister (by 3 years) has an 18 month old. I love him to bits; he’s hilarious and cute at the same time. I’m very much a proud aunt. But, I see what my sister has to go through every day and I thank my lucky stars I’m as free as a bird and I have no responsibilities other than washing my clothes and paying my £10 a month phone bill.

Earlier this year I spoke to my GP about being sterilised on the NHS and the first thing he said was ‘no chance’ because the CGC or whoever simply wouldn’t consider it; I’m too young blah blah blah. I went home with my tail between my legs and felt rather deflated.

I told myself, I’ll leave it for a few months, then try a different doctor; a lady one, hoping she’d understand more, being a woman herself.

As soon as we sat down, I started explaining about how my coil isn’t working for me and I’d like to explore more permanent options. I mentioned permanent sterilisation and she started talking about how often young women come and say they want to be sterilised and then they come back crying saying they want to be able to have a baby at 35.

I looked her in the eye and said I’m not one of those women. I haven’t wanted children since I was 16 and that hasn’t changed and it won’t ever change. She said to me that she could say yes on the spot… as if trying to call my bluff and I said ‘why don’t you?’, she looked at me blankly, paused, and then said ‘okay then, I will say yes, if that’s what you want’. I replied ‘Oh my God, really? Yes, please, I definitely want that’ and that was that. She briefly mentioned having to get funding for it, which I know will be the next hurdle.

But, in the end… she said yes and I couldn’t be happier.

New Beginnings (the end of Stanmore)

It’s been two weeks (I think!) since I gave my room key back to the Mercure reception and said goodbye to my new friends and goodbye to the room that had been my own little bit of heaven for the last three weeks.

I knew I wouldn’t be able to keep up with writing the blog during the three week programme, so I thought I’d give it some time and come back to the blog with a fresh perspective of the last few weeks…

The Pain Management & Rehabilitation programme run by Stanmore was an experience unlike any other. The first question the Psychologist asked me in my first one to one session was about my expectations. I had absolutely no idea what my expectations were because I knew so little about what the programme actually entailed. I’d had a brief powerpoint presentation at the pre-assessment and it was so vague I really didn’t know what to expect.

One thing in particular I didn’t expect, was to meet such an incredible group of women. There were 7 of us originally, but one lady left after the first night due to her being scheduled for surgery, so we were then down to 6 ladies (or patients, as they call us – which was strange as we were all staying in the hotel, rather than patients on a ward).

I have never met such an interesting, diverse and strong group of women in my life – the most amazing part of the course was spending time with a collective of women who all shared the same ‘secret’ – we’re all in pain.

Pain is such a funny topic. There isn’t a single person in the world who doesn’t know what pain feels like, yet there isn’t a single person in the world who knows what YOUR pain feels like – and that’s rather extraordinary, if you think about it.

Living in constant pain is horrible, it just is. But, when you meet other people who also live in constant pain, something happens. Personally, I found compassion (that I didn’t know I had) and empathy (again, another emotion I struggle to access) in bounds, not only coming from myself, but I also recognised it in them too. One grimace on my face and they knew instantly I was in pain. It’s a wonderfully comforting experience.

The programme ran from Monday morning to Friday afternoon for 3 consecutive weeks and all but one ‘session’ was based at the hotel. We were all given rooms close to the St Andrews and Cambridge suites that were used for the theory based seminars and the Physiotherapy and Occupational Therapy sessions. We were all given timetables at the start of each week with all our sessions mapped out for the week ahead.

The first week started relatively slowly and then the second and third weeks were busier, as we’d become more accustomed to the routine of the programme.

There were a few issues with the programme, mainly to do with the hotel itself – the hotel pool (which we had access to during the whole programme) had heating problems and so we had to miss out on a couple of hydrotherapy sessions – 26 degrees wasn’t pleasant.

The other issue was with the kitchen – the programme is on a full board basis so all food was included, but the kitchen staff weren’t exactly happy (or knowledgeable enough) to deal with two of the ladies’ dietary requirements (gluten free / low FODMAP diet) and it was a traumatic event every night trying to get them fed.
I  wasn’t too happy eating from one restaurant menu for the whole three weeks – there are only so many falafel burgers you can eat before you get sick of them and only so many portions of chips you can eat for lunch before you start to pile on the pounds!

The programme itself has been a huge help to me personally, although I had already set up a lot of my own coping mechanisms in the 10 years since I was diagnosed. For example, relaxation and meditation were already a large part of my life so I felt like a few times it was a bit of a ‘teaching a granny to suck eggs’ situation, especially during the ‘nutrition’ session, but I realise I’m probably in the minority and that a lot of people will really benefit from what the course has to offer.

The occupational therapy sessions were interesting but I wouldn’t say all that helpful for me personally. Firstly, I don’t cook (I hate cooking and I’m lucky that my partner cooks for us!) so there wasn’t much they could teach me in that respect. I can’t hold a pen or pencil so the mindful colouring session was a bit of a miss too, but some of the other ladies found it really helpful.

The first OT I had (we were given a different OT after the first week, which was great!) wanted to change my sleep routine but I was assertive in that I was happy with the routine I currently have and would rather focus on other potentially ‘unhealthier’ parts of my life to change.

I will stress that the buzzword for this programme would be ‘change’. I have no problems with change (I get bored easily) but there are some things I’m not willing to compromise on and sleep is one of them. I’m sitting here writing this blog at 2am and that’s just how I work; my creativity hits a peak at this time and that’s just how it is.
If I was to have a 9-5 job, my routine would change and I’d suck it up, but I cannot work and therefore I have the luxury of living to my own rhythm, not society’s. (End rant!)

Another big aspect of the programme is learning about pacing. You’ll hear the term ‘pacing’ a lot if you join chronic pain groups on social media, but hearing about it and then being taught how to do it, is another thing entirely!

Pacing is where you work out how much of an activity you can do, and then changing your position (or stretching, or changing how you carry out that activity) so that you interrupt the pain before it hits you. I had already started pacing some activities before I started the programme. For example, my partner carries a fold out stool with us when we go on holiday or go to a castle or historical house. I make sure I have something to sit on at regular (or sometimes random) intervals so that I don’t get exhausted too quickly. It means then, that I have more energy to do more/see more.

One thing about the programme I will rave about is the physiotherapy. Before starting the programme I was most excited to get the chance to work with a physiotherapist who knows about Ehlers-Danlos Syndrome as I have had such terrible experiences with physio over the years. I was right to be excited, as the physio I was appointed was fantastic. She was so knowledgeable and personable and I felt really comfortable with her. We discussed my current problem areas (shoulder and lower/mid back) and my love for yoga and pilates (and how I struggle to exercise during a flare-up) and we created a yogalates routine I can do every day as my physio, which incorporates both my shoulder and back problems. I’ve been able to do my physio every day since finishing the programme (thanks to having  an enjoyable physio routine and partner who reminds me to do them every day!)

It’s been two ish weeks since the programme finished and life has gone back to ‘normal’ – I am still struggling to pace some activities that I do most – like using my laptop and watching TV and DVDs on my laptop, but I’m sure in time and with practise, it’ll get easier.

The weirdest thing is not having the other ladies around. I say ladies, I mean friends. I truly feel honored and blessed to have been put on the programme with each and every single one of them.

Stanmore Pain Management Rehabilitation Programme: Day 1

I don’t know if I’ll be writing a blog for every day of the 15 day programme, (split over 3 weeks) but here’s the first day…

I arrived promptly at the hotel for the hotel-based pain management rehabilitation programme run by the lovely team at Stanmore (Royal National Orthopaedic Hospital) at 9am and was checked in swiftly. I made my way (miiiiiiles away from reception) to the back of the hotel on the ground floor where the ‘accessible’ rooms are kept. I am just outside the conference rooms, gym and swimming pool, so I’m dead chuffed about that.

Unfortunately I’m not very good at eating in crowds of people, so I am having my breakfast and dinner in my room and then joining the group for lunch every day so I can keep my social anxiety at a manageable level. I’ve suffered with ‘buffet phobia’ since my late teens; I’m sure I’m not alone in that.

The day started with an introduction to the Psychology sessions, which seemed pretty basic. A physiotherapist took us through an introduction to Pacing; a technique I’m not very good at, but hope to improve!

After the pacing talk and lunch, we split up and did our own thing. I had my first physio/occupational therapy session which was just going through the forms I’d filled in during the assessment process.

My programme finished at around 3 today, so I’ve spent the rest of the day in my room, watching Sex and the City and Game of Thrones. I have another short day tomorrow (starting at 9am, yuck!!!) so I think I’ll go and investigate the spa; the swimming pool, sauna, hot tub etc in the late afternoon.

One thing I would suggest is if anyone is being brought here by family or friends (and so don’t have any transport) they bring some drinks and snacks with them for their room. There’s a lot of down time and if like most of the group, you struggle with mobility, you’ll struggle to find a shop within walking distance of the hotel, so you’re really at the mercy of the room service charges. I’ll definitely be bringing healthy drinks and snacks with me for the 2nd week!!

 

More than just my illness (Stanmore)

I’m still not 100% sure how comfortable I am blogging about my hidden illness. It’s a difficult thing for me to talk about, as I try not to let my illness define who I am. I started this blog as I’m a huge fan of talking about the things that interest me (like travel, fashion, beauty etc) and I didn’t really want to go down the ‘pity me, I’m ill’ route… but I believe that being a writer is about writing about things that may make the writer or the reader uncomfortable. If I only wrote about the superficial things, I would be doing myself a disservice I think.

So, if you’re not into reading about chronic illness, feel free to skip this blog post and focus on my other topics. If, however, you know someone with a chronic illness, chronic pain or Ehlers-Danlos syndrome, this may interest you!

Last year I paid privately to be seen by an EDS specialist Dr Mittal at St John’s and St Elizabeth’s hospital in London.She suggested I apply to go on the 3 week residential pain management course at Royal National Orthopaedic Hospital at Stanmore.

The three week residential course is designed to help rehabilitate people who live with a chronic illness or chronic pain.

Interestingly, I often hear people use the word ‘chronic’ incorrectly, as if to mean ‘severe’ so let me just say that chronic means long term, not severe. Although, you can have a chronic illness that is severe, the two words aren’t mutually exclusive!

The three week course is run by the NHS and so the waiting list is rather long. It took weeks to apply, to get an appointment and weeks to be assessed.

The assessment took around 2 hours. The first hour or so was a powerpoint presentation by the people who run the course – Psychologists, Physiotherapists, Occupational Therapists etc.

The 2nd hour was spent with the Psychologist and I have to say, it was the most illuminating and entertaining interview/assessment I’ve ever had.

I won’t lie – my personality is something of a headache for most people and I think I left somewhat of an impression on Andy, the senior Psychologist!

I honestly don’t know how the assessment went – we discussed parts of my personality that probably wouldn’t benefit from being in a group of chronically ill people, because I ‘don’t take fools gladly’ and I struggle with social anxiety. I’ve dealt with my EDS on my own (without any real medical input) for over 10 years, so naturally I’ve built up my own coping mechanisms for dealing with chronic pain.

I do struggle with how to pace myself, so I’m hoping I do get the opportunity to be on the residential course and see if the medical professionals can help me with the things I struggle with – pacing, finding the right exercise for me and sleep issues.

I’ve always had an interest in psychology (although I clashed with my psych tutor in school while studying A Level psychology) so talking to a psychologist was a fascinating experience for me. I’ve never spoken to anyone professionally about my personality issues (I would hazard a guess at Covert Narcissistic Personality Disorder myself) and he did one hell of a job on me! He called my bluff quite rightly, when I said I had low self esteem – and on reflection, I would say I have low confidence, rather than low self esteem.

The one thing he did say was that he found me to be an unusual (rare) chronic illness sufferer in that I don’t ‘live my illness’ – and I agree. We talked about whether or not I used the EDS forums and I explained that I have dabbled but didn’t like the competitiveness of it. I found a lot of people on the discussion boards would list their illnesses like trophies and I wasn’t interested in that. He said I was a ‘role model’ which was perhaps one of the nicest things anyone has ever said to me. I will remember that for a long time to come.

My assessment at Stanmore was on 19th February. I’ve not heard anything back, but apparently it can take weeks for them to make the final decision on whether or not they think the course is for me.

Whatever the outcome, I’m excited to see what happens with it. I’ll keep you updated on any results of the assessment!