Disabled

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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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.

Paris, Prague and Budapest

As I’ve posted before, my partner and I are keen travellers. We’re both extremely inquisitive people and we both share a love of seeing what the world has to offer.

In March this year, we went on a 6 day jaunt across Europe. We decided to visit three countries and spend 2 days in each country. 

First, we got the Eurostar from London to Paris. We stayed right by the Gare Du Nord as I needed to walk as little as possible. We visited the Eiffel Tower, Notre Dame cathedral on Easter Sunday and queued for HOURS to see the Paris Catacombs…


Here are the Paris Catacombs


Notre Dame Cathedral


We then flew from Charles de Gaulle airport to Prague airport. We stayed at the 4 star Hotel Yasmin in Prague. It was beautiful and the best breakfast I have ever had! We booked a taxi into the old town and had a mooch around. I found this amazing little bric-a-brac shop and if I had more space in our suitcase I would’ve easily spent a small fortune in there! It absolutely threw it out with rain while we were in the old town so we jumped into a doorway to find it was the entrance to a museum of medieval tortue, so of course we had to go in!


Prague was sensationally beautiful. We most definitely want to go back and stay nearer the old town as there was so much to look at and so little time to do so. I watched a documentary years ago about an ossuary in Prague and ever since then, it has been on my bucket list. Knowing this, my partner took us on the train out of Prague and towards a town called Kostnice to visit Sedlec Ossuary.

After 2 days in Prague we packed up and flew to Budapest. We stayed in a rather grand looking Novotel Centrum. 

We found the most amazingly hipster restaurant in the Jewish quarter in Budapest. It had a library! And served the most beautiful Hungarian wine called Bull’s Blood. Divine. 

I feel I need to describe how difficult it was for me, physically. I’ve written before about having Ehlers-Danlos Syndrome so I hope by now you’re not surprised when I say this holiday really took it out of me! We stayed two days I each country so I could sleep and rest on the second day. The pain rehab would call this ‘boom and bust’ but I call this ‘real life’. 

There is no real way you can pace yourself on holiday like this. We made sure I had a box full of painkillers and heat pads and I travelled with all my splints and walking stick. I sat down on anything and everything I could put my butt on and went to bed early every night. I took a nearly an entire week of rest to recover from the travelling (well, as much as I recover anyway!). 

This is the only way I’ve found works. Others may pace themselves or go on beach holidays but I refuse to. Firstly, I hate the sun (don’t like being tanned) and it makes my POTS worse. European breaks are ideal in terms of short flights and semi-decent weather. 

Our next trip is in December when we fly to Basel in Switzerland then two days later we fly to Freiburg in Germany. It will be snowy, wintry and Christmas markets galore! I cannot wait! 

Today, I smile.

A wonderful thing happened to me last night.
I received this comment from one of my followers on Instagram…

12592406_443729105826646_2987259939652496416_n….in response to this image I posted to my Instagram account last night. I was feeling bummed about how ugly disability aids are – my wrist splints (worn most nights) are a hideous shade of ‘nude’ and are really really ugly…

splint

I’ve written briefly about my hidden illness before. I don’t often post images of myself when I’m having a flare up, but if on the rare occasions I do, I get this sort of response from just one person, it makes the pain of living with my condition, so much more worth it.

Here is my message to the world:

You may see me on Instagram with a full face of makeup on, my hair clean, nails done… but what you don’t see is how I feel once I’ve done all of that, or on the many days in a week where I physically cannot do any of that – which is why I posted this image above. To remind everyone that we’re all human and sometimes, we just need support – physically and mentally.

I’m sat right now wearing yoga pants, a hoody and a dressing gown with my hair scraped into a bun. I have no makeup on and I’m in a lot of pain all over my body but the comment above has brought a real smile to my face.

So thank you, Shewolfcollective, thank you for recognising my struggle and thank you for your kind words.

 

Beth’s Words of Wisdom

You cannot change someone or will them to grow up. People change with age, they mature at their own rate. You cannot expect to change someone for your own happiness; living on the hope that they will change enough for you to accept them is futile.

Let people grow at their own rate and let them GO if they are not growing at a rate that is compatible to your own life and goals. It hurts, I know. But you have to let people be who they are.

If you can’t accept who they are RIGHT NOW, leave.

Be at peace with yourself.

Dirty Word

Disability.

Now I’ve got that out in the open and no one has died, let me tell you
why I’ve said this dirty word… well, because I am myself, disabled. Now, I know, I don’t look it, do I? Well, that’s your first lesson, I won’t dwell, let’s move on.

Next, I’m going to (brieflyish) explain what this means for me, personally.

I was 19 when I was diagnosed with a genetic, degenerative, multi-systemic, connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. This is also known as ‘Hypermobility syndrome’ or simply ‘EDS’.

A connective tissue disorder is caused when the body doesn’t naturally create enough collagen throughout the body. This means that my muscles, ligaments and other connective tissues are very bendy, stretchy and unable to hold themselves together properly; I’ve sprained pretty much every body part you can sprain and I live on very strong painkillers because of the chronic pain you get all over your body. I’m also on anti-depressants because, well, life isn’t exactly great having to deal with being in pain all the time!

EDS also affects my skin – it’s very stretchy and I bruise like a peach! EDS affects my eyesight – I have to wear glasses because my eyesight really sucks. It affects my central nervous system so I end up with blood pooling in my legs and making me dizzy when I stand up (Postural Orthostatic Tachycardia Syndrome), I wear orthotic insoles in my shoes because I don’t have strong enough arches. EDS affects me in many, many ways and one of the hardest things to deal with is the constant fatigue of having to work so hard to keep your body together. It’s a constant battle.

hypermobility

The crazy thing about all of this, is that apart from my rather gorgeous glasses (will blog about them soon) you cannot see that all this is happening to me. I do not use a wheelchair (yet) and I hide my wrist splints underneath fingerless gloves. I hate wearing my finger splints so only wear them at home. I have a telescopic walking stick that I hide in my handbag and carry enough painkillers on me to kill an elephant!

Now, I’m not looking for a pity party, or praise, or anything really. I just want to share this with you because people don’t like talking about things like this. Well, tough shit, I just did!

So, when you see someone climbing out of their car that’s parked in a disabled bay, think twice before tutting. Think twice before judging – you do not know what is going on underneath the surface.

Unless, of course, they are actually just selfish arseholes parking in a disabled bay without a disabled badge – in that case, feel free to tut away!