New year's resolution? I'll pass

As I am writing this, it is still 2017 for 4 more hours. I actually love starting a fresh new year, in the same way that I love Mondays, the first day of the month, and the first book of a new series. I like the feeling of possibility, and that you can have a fresh start in your life any time that you want one.

The first day of a new year however, is arbitrary, a Human invention, and you can start new on a random Wednesday at 2pm if you want to. That's why I'm not a fan of new year's resolutions. It puts unnecessary pressure on you to change everything at once, and, even harder than that, to keep up all of those changes for a whole year.

The picture I have chosen for this year is one of my all time favourite items, a pillow. The humble pillow does so much for me. I put one between my legs to stop them cramping. Under an arm to get a more comfortable night's sleep. I cluster them around me when I'm spending the weekend in bed with Netflix. Pillows, I salute you. If you have not accepted pillows in to your life as a true companion, I suggest you do that in 2018, (but only if you want to of course).

For the year ahead, there are already some things I have agreed to do, and so I'll just carry on with those. Number 1: decrease my body fat. I promised my therapist I would keep on with the gym, and I will. Number 2: keep up with the exercise my physiotherapist asked me to do. I haven't actually managed to do them every day yet...but every other day is better than no days.

Whether you are out at a party, having drinks with friends, or spending a quiet evening alone, I wish you all the best, and a stress free year to come.

Lisa

You better work b**ch

Britney gives us life's no.1 rule. (click for video)

This week, I'm channeling a blend of Britney Spears and RuPaul.

I've been hardcore binge watching RuPaul's drag race for the last few weeks, from season 2 onwards. (Why no season 1 Netflix?!)

There is so much incredible talent on that show, and people who have overcome all kinds of life challenges. (Prison, childhood abandonment, family rejection, illness and disability to name a few).

It's been a while since I did any serious exercise. Extreme cake eating is not considered a sport, and neither is marathon sleeping. However, I made a promise to my therapist that I would start up some kind of exercise routine.

It's nerve-wracking to walk into a gym for a lot of people. There's a common fear that it will be wall to wall Gods and Goddesses, wearing practically nothing as they effortlessly work out without sweating.

In my experience, people of all body types go to the gym, and very few people are paying attention to those around them. If anyone did look at me, I had decided that it was because I looked fierce and sickening, and they were jealous of my boogie (and booty). By today's pop culture standards I have a rather small bottom, but I'm very pleased with it. Work what you have!

I stepped on to that treadmill, and I started my journey back to getting into shape. And it was hard. I could only manage half the distance that I used to do, and with a lot of walking in between jogging. I sweated. I struggled to breathe. But I had some good songs playing on my iPod, and I kept going. 

And then two days later, I went back again, and it was already so much easier to talk myself into it. Tomorrow, I'll be going again.

No, it's not my favourite way to spend an hour. In all honesty, it ranks somewhere with being set on fire, and having to eat a bowl of carrots. But, if you want to be healthy, happy, and delay that hip replacement for as long as possible, you better work b**ch.

Much love.
Lisa

Spoon Theory

About two years ago, I first came across Spoons.

A Spoon is a unit of energy commonly used by people dealing with chronic illness. Below is an example of how spoons are used in day to day life. It's not an exhaustive list by any means, but it's a good starting point to figure out your own energy use.

So why am I talking about spoons today? Well, having chronic pain, physical disability, and mental illness uses a lot of spoons. So many, that other things often have to go by the wayside. As much as I love writing this blog, and hate to see how long passes between posts, I simply run out of spoons too often to manage it. So this is both an apology for lack of posts, and an explanation.

Let's say I start the day with 20 spoons. Before I get to work, 3 are gone. During the course of the working day, another 15 are gone. Now I have only 2 spoons left to cover everything I might want to do in the evening. A meal out or a trip to the cinema puts me into the minus spoons.

Every day, I am using more spoons then I have, and so by the weekend, there's a massive imbalance to correct. Having the energy to write, to see friends, to even get out of bed, can become impossible.

This is the situation faced by people world over. Struggling to get by, having to choose between doing something they would enjoy, that will wipe them out for the rest of the week, or staying home and playing it safe.

Recently I started seeing a great therapist. We talked about my lack of energy, and how I can recharge. We agreed that it's perfectly OK to put time aside just for sleep. So now every weekend, I'm putting aside a sleep day, where I make no plans at all, and allow myself the time and space to just stay in bed and recharge.

Staying in bed all day has a lot of negative annotations. It's the kind of activity that brings out negative comments. The act of sleep is seen as lazy, wasteful, even bad for your health.

Well f**k all of that. I'm going to do what's right for me. Now fluff my pillows, it's time for bed.

Lisa x

Putting on your best face

Getting through interviews is tough. Looking for jobs is draining to begin with. The internet is awash with millions of them, and a lot of job descriptions are nearly identical, so sifting out the good from the bad is a job in itself.

In the last few weeks I have been to 7 interviews. This is sort of good. When I was younger, with fewer qualifications and less experience, job interviews were very hard to come by. I could apply for ten jobs and hear nothing, and that was not unusual within my peer group. However, interviews are so massively draining!

By the time I was up to interview 5, I really had to fight the urge just to take to my bed in the afternoon and stay there until the next day. On top of that, I came down with a cold. I had to rely on juices and disgusting sachets of lemsip to keep me going.

This morning was interview number 7. I was tired, but I was prepared. I had thought about cancelling and rescheduling for when I felt better, but I decided not to. Sickness is a part of life, and so I turned up, explained I might cough a bit, and carried on, with my bright, shiny face (in that blotchy way that only a cold produces) and red nose.

This afternoon, I found out that I got that job. I probably would have still gotten it if I had cancelled and seen them next week instead, but I might not have. Another candidate might have come along. Life might have thrown in some other curve ball. 

Putting on your best face can be tough, but it's also an opportunity to rise to the challenge. This time, I won.

Guest post: Making the most of your summer

Vacations and holidays can look different for those of us with a disability or chronic illness.  Much of the time all we can see is the extra work that comes along with packing and unpacking suitcases, sitting in a car for long periods of time, and all the extra walking that comes from sightseeing and going from one destination to another. We know because we have more than likely attempted at least once to recreate those picture perfect vacations or those fabulous holiday parties from before our sick days. The problem is that it takes us at least double the energy if not more to do what a normal person could do. And then comes the burn out afterwards. We pushed ourselves too far. Now we have a huge mess to clean up or a long trip home and zero energy left. Then comes the self loathing, or the questioning God, or the berating oneself. Why can't I be like everyone else? Why can't I do the things they can do? Like get the picture perfect family photos like they get? Why do I even bother? I didn't enjoy myself. I didn't have fun. All I did was exhaust myself. Maybe just skip the family vacation.

For many of us with a disability or chronic illness our already overstretched finances need curbing wherever we can and taking a vacation is often one of the very first things that we cut from our budget. Those of us who receive disability know that it is barely enough to cover our needs, and those of us who work may have needed to cut back our hours because we struggle with fatigue or pain.

After working since I was fourteen I eventually quit working full time at the age of thirty two to be a stay at home mom. The daily fatigue and pain I was feeling from inflammatory arthritis, thyroid disease, and fibromyalgia finally got to be too much. Our family lost half of our income in that moment. Vacations were temporarily put on hold. Once we got used to the loss of income and got our equilibrium back we began to take vacations again.

Sometimes we are afraid that where we are going may not have accommodations for our disability. Maybe our disability is slightly embarrassing(think colostomy bag or catheter) and we don't want to leave our comfort zone. What if we are stuck on a plane or cruise ship and need emergency medical help and can't get the help we need? There are so many reasons why vacationing is more complicated if you have a disability or chronic illness. It can also be a little bit scary. I wish I had a perfect answer to calm your fears, to finance your vacation, and to give you the energy to enjoy it to the very maximum of your ability. You have to decide for yourself and your situation what is best, and sometimes you can have the most fun you will ever have in your own back yard.

    ~  Courtney Diggs

Young, Beautiful and Disabled - what's it all about?

I picked the title that I did because I wanted something engaging and evocative. There's something a bit forbidden about grouping those words together. They create a juxtaposition that feels slightly uncomfortable.

On the whole, one is not allowed to refer to oneself as beautiful. If you do, you are an arrogant or prideful piece of poop, that needs to be immediately ground down beneath someone's heel. There's a constant battle between those people, the haters, and the sensible ones who understand that it is an important part of your mental health to love yourself and find yourself beautiful.

What makes someone beautiful?

If you are the kind of person who offers a crying stranger a tissue, you are beautiful. If you see lost tourists forlornly clutching a map and point them in the right direction, you are beautiful. If you've ever given a token gift (their favourite sweets, a cute pair of socks etc) to a sad friend or relative, you're beautiful.

So basically, most people are beautiful. If you look at yourself and you think that you're not, either:

1: Change
2: Accept

Apply as necessary.

The aim of this blog is to explore what it means to be disabled. To live with a chronic, life-changing condition. But also for people who are going through something temporary. Something that is turning their life upside down and inside out, and they want to rant about it, talk about it, or just read something that sounds familiar to them.


If you're out there, and you identify with any part of this blog, get in touch. Share your experience. Be part of this fabulous, subversive little scene.

Guest post - Freedom in Confinement

Hi, I’m Gusty and a neuropathic pain disorder landed me in a wheelchair.

I remember being so depressed when I found out it was permanent, because it felt like my life was over. Being ‘confined’ to a wheelchair seemed to me about the worst fate imaginable. As it turns out, I couldn’t be more wrong.

Life with a pain disorder is hell, but I will never resent my chair. It represents freedom, it represents strength, and I can’t imagine life without it.

“I’d kill myself if I were in your position,” a stranger casually says to me, unaware of how incredibly ignorant that is. It makes me ashamed to know I once felt that way, even if I’d never have said that to someone.

What’s funny is that being disabled was actually a positive for me in a lot of ways. Not only have I learned to be much more assertive, but I also treat myself so much better than I used to. All the crappy fake friends that I held onto for so long, I got rid of them. When you only have so many spoons, they just aren’t worth wasting on people like that.

I have learned to cut myself slack, which is something I was never able to do before. The short-term memory loss and cognitive issues I now deal with seemed insurmountable, but they weren’t. If I couldn’t be great, I told myself, then I shouldn’t even bother. I was wrong. Trying is worth it, even if you end up being terrible.

I’m not perfect, and that’s okay. Sometimes the obstacles I have to overcome prove to be too much of a challenge. There are days where I have no energy and sleep for twenty hours. My body can no longer do so many of the things I used to love.

You know what, though? I have passions to pursue and friends worth using up my spoons on. I have more hobbies and interests than there are hours in the day.

The world may not see me, but that just means I don’t have to worry about what people think. In a lot of ways, being ‘confined’ to a chair has been the most freeing experience of my life.

Winter can f**k right off

I have always hated winter. It's just pointless really. OK, so we get Christmas, which I adore and look forward to every year, but they only put Christmas in December so that we wouldn't all kill ourselves. I can picture the ancient tribal leaders of England and the Isles getting together.

"People are finding winter bloody hard going. They're losing their will to live."
"What about another sacrifice?"
"I think we need to go bigger. Something that will rally the people and help them to forget how crappy this country is for 9 months of the year. Otherwise, I fear we're going to see a mass exodus."

It's dark for most of the day. It's so cold you can barely move for layers of clothing. It's constantly raining or hailing, so you enjoy the great outdoors at your own risk. And then, if you're like me, your bones frikkin ACHE! It's something between feeling like my hip bones are breaking and/or dying. 

All of this is why (as soon as I find a way to make money) I'm going out to somewhere like California. I don't care if every day is the same. I will happily give up seasons if it means that I can wander around outside without a coat and the risk of severe frostbite.

It's just starting to get warm here now after being horrific since November. That's far too long to be wearing jumpers and extra socks. Plus no one can afford to pay for their heating any more. What we need is some kind of massive dome to keep the heat in. Perhaps someone can get hold of the money that Donald Trump was going to use for the giant wall, and send it this way. After all, we do have a "special relationship."

Dating - now with new, trickier conversations.

Dating has been a tricky business since I became chronically in pain (on top of the chronic pain I already had). So now I have two pains to manage, and two boring explanations/descriptions to get through each time I meet someone.

When I first became ill, I had just started dating Mr Controlling. He basically decided that since I was ill, I should go and live with him, even though we barely knew each other. I broke up with him fairly sharpish.

Since then I've dated Mr Sweet, who I met in a coffee shop. He was training to be a nurse, so I felt he would have a great handle on the situation. Alas, he just had too much going on in his own life, and so we parted amicably.

After a period of mourning/mooching, I decided it was time to continue the search for someone to watch Community with and rub my stomach. (Among other things). And so I ventured onto the internet. The big question was, how much should I disclose up-front? Should I start with the fact that I was housebound for 1 day in every 2, or try to subtly allude to it? Or just not mention it altogether?

I decided not to mention it on my profile, because I didn't want it to be the focus of the first few chats (assuming that I had any interest). It would have to come up on the first date though. Oddly enough, I've mainly been contacted by guys 5 or so years younger than me. I must be putting out a youthful vibe...or a cougar one.

My first date was arranged with Mr Karate. 26, talkative, nice to look at. He took it well enough when I explained my condition, including the limit on how long I can stay out at any one time. All in all, I was pleasantly surprised. Perhaps my luck is changing?

Introduction

I never thought much about being disabled. It was something I was aware of, but such an ingrained part of day to day life that I mostly forgot about it. It was normal for walking to be painful. It was normal to hear my joints clicking, and grinding when a tendon caught, or the joint moved out of perfect alignment.

When I was born, I did not come out fully made. I was early, and worst of all, I was a breach birth.

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In a normal hip, the ball at the upper end of the thighbone (femur) fits firmly into the socket, which is part of the large pelvis bone. In babies and children with developmental dysplasia (dislocation) of the hip (DDH), the hip joint has not formed normally.

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So there I was, without fully formed sockets, being yanked out of my mother feet first. I can only imagine that it was an unpleasant experience for both of us.
If I could go back and project to my baby in womb self, I would have advised that there was really no rush at all. Stay in there and get the finishing touches done. It's only the 80s, there isn't anything so exciting that you have to get an extra month of it.


The doctors did not explain to my parents the long-term difficulties of hip dysplasia. I was put into a leg brace (that apparently my siblings would pull me around by) and we all waited for the sockets to form.


Life carried on in quite a normal fashion, except for the grinding and clicking. And then in my 20s I started to get a lot of pain. A hell of a lot of pain. Chronic muscle inflammation. Spasms. Aching. In the winter I started to walk with a severe limp. Everything was seizing up. I had scans done. They were not good. Then I found out about the link between hip dysplasia and early onset arthritis. That was not a happy time.


But I was never one for giving up. I did physio. I exercised like a fiend. Swimming, badminton, zumba, running, extreme outdoors obstacle courses. One thing was for sure. I was going to make my body work for me, and I was going to put off the bad things (walking with a stick, hip replacement) for many, many years.


And it was all going quite well, until I was 29, and something else happened.