The brain drain of the 9-5

For those of you who don't know the history of this blog, here's a little catch up:

1) I have bilateral hip dysplasia. There's no cure for this, and it means I have pain every day of my life. I am 30 and I have arthritis. Dysplasia covers a broad spectrum. Some people have it better, some much worse.

2) In my late 20s I became seriously ill due to undiagnosed endometriosis. I recently spent 9 months out of work.

So, in September I started back at work, which has been amazing. It's a job I love, with great people, and I have access to all the cups of tea I can drink and free fruit I can eat. Living the dream.

It has been a hard slog though. After 9 months more or less on the sofa, with a few stays in hospital to break it up, it's a strain to be working day after day. My brain has seemed to just wave a little flag at the sight of 5pm.

The worst thing has been not writing. I still have so much to say on the subject of disability, I literally have a page of post titles written out, just waiting for me to put my angry but well-spoken self in gear.  (I'm not always angry, but I do find it a great motivator).

For all of us doing our best with less than perfect health, I think we owe it to ourselves to expect a little less. It's ok to not be making perfect meals every night, taking up extreme quilting (turns out that is a thing), writing that novel. Sometimes just living day to day is hard enough, and anything on top of that is a bonus. Yeah it would be nice if during those 9 months I had made myself a classic 50s dress out of curtains and spare doilies, but I didn't. I was ill, and I played facebook games and watched Judge Rinder. And that's ok with me.

 And now I'm working. I'm not writing like I used to. I can't maintain the same level of sport I used to do. Hell I can't even maintain the same level of late nights.  But I'm doing my best. I'm sure you are too.

Love to all of you reading.
Lisa.

This is my brain on drugs

Before I was correctly diagnosed with endometriosis, I was misdiagnosed with anterior cutaneous nerve entrapment syndrome. There are a lot of things that can go wrong inside your abdomen, and I had to have a great many of them ruled out with different tests.

The main problems with being misdiagnosed are a) you don't get any better, and b) the treatments that are applied to treat something that you don't have CAN MAKE YOU MUCH WORSE.

The main drug that I was put on to cure my pain made me anxious, confused, paranoid, suicidal, and on top of that, gave me obsessive compulsive disorder. What do I mean by that? It means I had to keep checking all the switches in the house, and pressing on doors to make sure they were closed.

You might think, then, that I'm here to tell you not to take drugs at all. That is not the case. I fully believe that when you are given the right medicine, you can trump any kind of holistic health care. What I want to reiterate is my point from the previous two posts, that getting a correct diagnosis is absolutely vital, and that you have to keep going until you get it.

 My GP insisted that I start taking some anti-depressants to help get me through my illness. I have always resisted that kind of drug, even though I agree that the mind should be treated like any other organ. It's hard to accept that you can't make it on your own, that your mind just isn't strong enough.

Those anti-depressants without a doubt saved my life. I am still taking them now. One every night. I plan to come off them early next year, but if I decide to stay on them a bit longer, that's OK. I've had a hell of a time, and if I need that helping hand, I'm going to take it.

There are people who campaign against anti-depressants, for various reasons. They don't fix everyone. They can have side-effects. But for me, they allow me to feel like myself. In fact, right now, I feel like no one I ever have. I feel like a version of me that never had depression. I feel happy. I can enjoy living day to day. I can face what life throws at me.

This is my brain on drugs. And it's OK.

You have to fight for your right (to be diagnosed) : part two

Way back when I was 22, I started getting these weird stomach pains. It would feel like my stomach was tight like a balloon, but there would be no bloating. The only thing that helped was to put pressure on it, and wait it out. It hardly ever happened, maybe 3 times a year, and a few years later the pains just stopped. I put it down to eating badly, as the pains had disappeared as my diet became better.

When I was 28, I started noticing little stabbing pains in my stomach. Once again, I thought it must be diet related, so I tried to eat better, do more exercise, and waited for them to go away. Only they didn't go away.

Shortly after my 29th birthday, the pains started to get much worse. As if someone was coming up to me and stabbing me in the side at regular intervals. I was also suffering from terrible nausea. I went back and forth to the doctor, trying various tablets, and then went to see a stomach specialist. He diagnosed me with constipation and sent me on my way.

By the end of the year, I was in agony. I was in and out of the A&E department and had a stay in hospital around Christmas time. I'd had all kinds of scans, seen two specialists, a surgeon, and had tried various drugs with hideous side-effects.

Through all of this, I had doctors telling me that it might be psychological. After all, there was nothing they could find.

I completely disagreed with that. Yes, I'd had some stressful times at work, but they did not correlate with the times when my pain was at its worst. I was not going to accept that as a diagnosis.

The specialist I was working with, who had tried a few minor surgical procedures on me, was at a complete loss. There was nothing more he could offer. In a last ditch attempt, he sent me on to a colleague, a gynecologist.

They decided it was time to cut me open and have a look inside. It was the only thing left to do. Ultimately, it turned out to be the exact right thing. During that investigative surgery, they found endometriosis, and were able to remove it then and there.

I have to confess I was doubtful that this would cure me. I had so much pain for weeks after the surgery that it seemed like nothing had changed. But then came a day when I woke up pain free. And I was pain free all day. And then I woke up pain free the next day.

I still have a few niggling pains, just to remind me that my insides are determined to be troublesome, but the life I get to live now is dramatically different from how it would have been if I had not gotten that surgery. Day to day, I could never tell how bad I was going to be. I couldn't make plans, sometimes I could barely make it off the sofa. And what I have learned from my doctors is just how many people live with chronic stomach and abdominal pains.

Whatever illness or condition you might be suffering, if you don't agree with your doctor, if you haven't reached a diagnosis that makes sense, you have to keep going. I'm lucky, I got an easy fix this time, and I know that's not true for everyone, but I was nearly written off as incurable.

Keep going until you get your answer.

Wake me up (when September ends)

So, it's been a few weeks! Sorry about that, I haven't forgotten this blog, it's just life keeps getting in the way.

It's been a heck of a year already. I lost my job, my health completely failed me, I became housebound, and I had surgery. And it's only August. 

My laparoscopy has proved to be successful, though it took a long time for the swelling to go down and the pain to completely subside. I still have nagging little pains from time to time, but at this point I'll just have to live with them. There are no further procedures or scans or medicines to try, and I'm not keen on uploading my consciousness into a computer.

My hips have been flaring up, demanding attention that should have been given to them instead of my stomach, and I've had a few sleepless nights due to the cramping pain in my legs. This is because the muscles that get strained due to my hip dysplasia then strain the muscles below, and it s a chain reaction. Needless to say, it's not pleasant. 

Things are looking up though. I've managed to get a great job lined up for September. It'll be hard to give up watching Judge Rinder and playing Golden Frontier on facebook, but it will be nice to spend my days around other people, and not have to talk to myself quite so much. 

You have to fight for your right (to be diagnosed) : part one

Twice I have been in a situation where I have had to convince doctors that I have real physical pain, and that it's not just psychological. I'm not denying that your mental health can affect your physical health, but sometimes there really is just a physical problem that needs correcting.

When I was about 26, I started to get really awful pain in the back of both hips, along the area round about where your kidneys are. I had experienced this sort of pain before, generally in the winter, and it seemed that it was getting worse year on year. I had mostly ignored it. Applied hot water bottles to the area when necessary, took solpadeine, and tried not to exacerbate things.

In the end though, it got so bad that I had to go to the doctor, and they agreed that I should get some x-rays done. Before the x-rays, I met with a hospital doctor, who was dismissive when I tried to explain where the pain was. They basically said that there was no way I could have pain in those areas. But I had my referral and the x-rays went ahead.

Well. It was extremely satisfying to see the proof right there in red. The giant areas of inflammation, exactly where I said the pain was, that showed how my muscles were strained from my hip dyslpasia. It was also a bit shocking, as I had not realised that my condition was so bad.

After I got the proof I needed, I was handed over to a physiotherapist. She taught me specific exercises to do every day to strengthen certain muscles, and she also did some acupuncture to stimulate the muscles and ease the pain. Acupuncture is said to be painless. Well it's as painless as having giant needles stuck in your muscles can be. I also started to swim consistently, every week, something I still do now.

Getting someone to work with me on what I could do to ease my condition made such a big difference. It allowed me to manage my pain, and also allowed me to pursue new sporting activities that I previously would have avoided. I learnt to rollerskate, (I can also skate backwards!), and I took part in two 5k obstacle races. 

I would never say don't listen to a doctor. Mostly they know their stuff. But you know your own body, so don't just take what they say as doctrine either. Don't give up until you get the result that you need.

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.

What I really, really need.

Some of you may been aware that I have put on a bit of weight since dealing with my severe endometriosis. I've mentioned it a few times...ok maybe more than a few.  It's just not on really. As a bonus for being really, cripplingly ill, I also get the bonus prize that only a quarter of my clothes (the baggy stuff that's now the tight stuff) still fit me.

Today I went to my first exercise class in about eight months. I spent five whole minutes squeezing into my zip-up sports vest, straining to hold the zip together so that I could get it closed. I put on a pair of shorts so tight I felt like I was being sliced up the arse crack.

Still, I made it through the class, which was a great achievement.

And then I got home, and had to get the vest off again. Which brings me to the title of this post. What I really, really need, is someone to call specifically for zip related help.

Just last year, I got stuck in a dress. I actually had to cut it off in order to escape, and it was a harrowing experience. I was not too fat, it was the dress that was wrong. If there had been a handy clothes-escaper to call, that dress would have been saved.

And so, I ask all you entrepreneurs out there. Start a service. Put out some dedicated people who will be there when someone is stuck in a dress, or a piece of ill-advised sports-wear. Do it for all the clothes that people have to cut themselves out of, and for all of us that have nearly dislocated a shoulder in our struggle to be free.

It's the right thing to do.

No one likes a whiner

When you've been ill for a long time, or you have a condition from birth, you really have to be careful who you talk to about it. 

Let's say your back hurts, because you pulled a muscle. The first couple of days, you can get a lot of sympathy for that. If it still hurts a week later, you'll probably find people are getting tired of hearing about it. A month later, you better be cured or dead, because no one wants to listen to that any more. You're still in pain, and it's affecting you, but they are not in pain, and they can't really relate to you. They've run out of sympathy, suggestions, and are starting to think that you're just making a mountain out of a mole hill.

Luckily, there are other places to go to for support. If you keep dipping in to that same well of friends, you're just not going to get the responses that you need, and you'll end up angry, and they'll be annoyed.

If you check around for a local support group, chances are you'll find something, even if not exactly specific to your needs. My favourite place though is this:

Chronic Illness Support for All

I am not a big fan of the internet. I think it lends itself to people being crappy to each other, but groups like the above are a great reminder that people are also there for each other, and there to support complete strangers. That's something pretty cool, and for some, it's a real life saver.

The truth is, you're not whining. You have a right to complain, to be sad, to be angry. You just need to find the right people to help you back up. 

Living on Benefits

Unless you've been living under a rock, you've probably watched, or at least heard of or read about, the people living large on benefits. Making more money than they would from a job.

This has not been my personal experience. I didn't have a particularly high-earning job, but losing it and going onto benefits took a large chunk out of my income.

Because I was on sick leave as certified by a doctor, I got the sickness benefit of £200 per week. My rent alone is £140 per week. So you can already see that I am not filling up a bath with notes and taking elaborately staged selfies of my wealth.

 There were many things that had to be cut from my budget.

No more dresses. I had no job to wear nice dresses to anyway, so that wasn't so bad. I had gotten into the habit of buying one dress a month. I am majorly into dresses. I very rarely wore a skirt or trousers to work. No CDs. No books. No shoes. No fancy chocolates, another favourite treat. No more classes at the gym, or paying for the gym at all. That was replaced by a home work-out DVD. Meals out had to be cut down, as well as doing anything that required an entrance fee or otherwise cost money.

I am lucky in that I have long been a frugal person. I have never had much money, and I do my best to keep out of any kind of debt. I had learned years earlier the secret of buying in bulk whenever you can, and how to successfully shop the sales.

So, next time you see an article stating that all benefits claimants are wiping their arses with original Picasso sketches, I hope you might question the accuracy just a little.

I would also like to impart some of my incredible wisdom.

• Always buy toilet roll in packs of nine or bigger. You're always going to use it, so you'll get through it, even if it seems nuts buying all that loo roll for one person. You'll save £s.

• Never buy anything in the sale that you wouldn't buy if it was full price.

• Don't fall for buy 2 get one free. You'll end up with cupboards clogged full of stuff you don't need, that you purchased because it seemed like a really good deal. 

And lastly, the most important thing of all.  STAY AWAY FROM CREDIT CARDS. Stay away from store cards. Run from online ordering catalogues. Never, ever take out a pay day loan unless it's an absolute emergency.

I hate to end on a negative note, so, still on the theme of benefits, I bring you this cheery little cartoon, and an annoying platitude. Remember, things can only get better.

THINGS can only get BETTER  (click to receive injection of happiness)

 

Your life in two pages or less

About a week and a half ago, I decided with my doctor that I was well enough to go back to work. I still had random pains, and of course my hip dysplasia causes daily pain all on its own, but as long as it's not a job that involves a lot of standing or driving, there is a job out there that I can do. Plenty, I hope.

Because I've been on sickness benefit, I'm entitled to use a free back to work service, where you get to work with advisors. They help you with your CV, with interview prep, and the actual job searching. It was all very new to me, because I had never been out of work before in this way. I was used to going straight from job to job.

I had been feeling a lot of anxiety about going back to work. What did you say to prospective employers? Do you put your time off work clearly on your CV, or do you bring it up in the interview? The consensus seems to be that you don't put in on the CV, but do put it on a cover letter. 

CV's are a minefield all of their own. I hadn't done one for a very long time, and one of the first things that advisor said when looking at it was that the font was old-fashioned. I hope that way back when I wrote it, it was hip, but possibly it was unfashionable even back then. Best not to dwell on that.

Over the next hour or so we rewrote it, and padded it out with some new and trendy buzz words, and then sent it off to three prospective companies.

There is a good side to being unemployed and job-hunting. In the past I had the stress of secretly arranging interviews in lunch breaks, but now I'm free and easy. It's not much, but it's something.

And now...we wait. And apply for a load more jobs, to stave off the tide of rejection emails that will drown my spirits. I must remain positive at all times. At all times. AT ALL F*****G TIMES!

Nailing it.

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

Out on the Town

It has now been over five weeks since I had my laparoscopy, and, FINALLY, I am feeling better. After weeks of bloating and hideous stomach aches, it all seems to have settled down in there. I still have occasional random pains, but the constant pain that I used to have day and night has now gone. The pains that I do have come and go in a matter of minutes rather than flooring me for an entire day.

One of my very favourite pastimes before I got ill was to go clubbing every Saturday. I absolutely adore dancing, and there's nothing I like better than to jump around for a good three or four hours. Since I don't drink any alcohol, I can commit to perfecting those killer moves.

Last night, I decided it was finally time to get back out there. It had been six months since I last went out dancing, and the groove needed to be unleashed. I had some panic over what to wear, since most of my dresses are still too small for me, but managed to find a suitable black dress, paired with my knee-high lace-up converse. As someone with hip dysplasia, heels are not really my thing, and converse are ace for dancing. You can get some fancy footwork done when you're not feeling the pinch in your toes or an ache in the arch.

I've heard many a women bemoan the fact that they have to go clubbing in high heels and would love to go out in a flat, comfortable shoe. Well, here's the thing ladies, YOU CAN. Join the flat shoe movement. I can guarantee you'll still have a good night, and men will not run from you in horror because you're not wearing stilettos.

Many years ago, I went to see Glee in concert at the O2, where they performed Safety Dance.

Safety Dance

Watch it, turn the volume up, and get jiggy with it in your livingroom, in your bedroom. If you're in bed, wave your hands around. It's good for what ails you, I promise.

Guest post: The Girl Behind the Smile

I am  46 years old now and have been suffering from a musculoskeletal condition since my early teens,  although back then this wasn't known.  I spent the majority of my youth on crutches or in a cast or dislocating something. So rather than being labelled with a formal medical diagnosis I was given, what I now believe to be, a label that carried a more psychological impact.  I became known as clumsy and was nicknamed calamity Jane.  I grew up with little or no self- confidence, always waiting to drop something, trip over, make myself look like a fool. I became accustomed to being laughed at for being so accident prone.

 

This continued throughout my teens, affecting my confidence, my self-esteem. I hated myself and my 'stupidity', constantly seeing myself as a failure, giving up on things before I'd even started them because I was bound to mess up. 

 

I had my first musculoskeletal operation when I was 15 years old. It wasn't until I reached my early twenties that I started having serious back problems.  I saw several different specialists, had copious amounts of tests and investigations until finally I was told, without any clear diagnosis but, oddly enough a prognosis that suggested I would be in a wheelchair by the time I was thirty! This news would have been devastating to anyone but to a young twenty-something year old about to begin my career path it felt like my life  over.  I fell to pieces, unable to cope or to find solice in anything.  All sorts of emotions were racing through my mind- I felt cheated, sad and so very angry. However I eventually pulled myself together and got back to living and coping with my pain.  It wasn't constant at this stage and over time I noticed the pain beginning to settle.  I was told by another specialist at that time that some prolapsed discs had fused together, hence the lack of pain.  I felt blessed and extremely grateful and soon I was back to normal, working, swimming, cycling, running - all without any difficulty.  My 30th birthday came and went and I carried on with my life, without a wheelchair. 

In 2009 I noticed  things starting to flare up again.  First with my jaw, then my wrist.  I was diagnosed with osteoarthritis and had a couple of operations which rectified the problems and the pain which allowed me to continue again as normal once I'd recovered. The fact I had been given a diagnosis had a positive impact on my state of my mind and my attitude to my condition. 

 

However, the biggest blow of all came a few years later when I noticed my pelvis appeared to be dislocating. For years I attended numerous chiropractors and osteopaths, they would pop the joint back in and I would carry on as normal.  It became part of my lifestyle,  a dislocating pelvis,  easily sorted by manipulation and then back to normal again for me. Don't get me wrong here, it wasn't as easily dealt with as it sounds.  Silently I was aware that I couldn't carry on like this forever and there was certainly no signs of it rectifying itself,  so I was inwardly battling with this whilst externally trying to hold it all together in order to carry on being a nurse by day and a mother, wife and housekeeper the rest of the time.  By 2013 my pelvis was dislocating daily and becoming very painful but at this stage I had learned to pop it back myself so I kept on plodding  until one day at work it popped out and didn't pop back into place again.  The pain was unlike anything I had ever experienced before.  I don't remember much of it after that as I passed out and the rest was rather vague. That experience was so frightening and was what made me realise that I needed specialist orthopedic attention. 

 

Moving forward to present day,  mainly because the 3 years that followed were a đrug hazed period of my life where my condition deteriorated rapidly whilst I had,  yet again,  copious tests and investigations.  I spent my days and nights drifting in and out of sleep due to the high levels of prescribed medications which I had to take to try and find some form of relief from the debilitating pain I was experiencing. 

 

I guess looking back I could say that the day I was finally given a diagnosis was a day filed with a storm of emotions. It was a rough storm but like any storm you know it will eventually pass.  The storm was the diagnosis that hit me like one massive wave after the other - severe hypermobility syndrome, osteoarthritis, degenerative disc disease, prolapsed discs, scoliosis, severe ligament damage leading to an unstable pelvis and sacro-iliac joints. The mention of operations to my spine and pelvis  which could rectify some of this and relieve the severe pain was the calm that could follow this storm. 

 

My whole life, my families life, my career, all had been ripped to shreds over the years and although I knew that having these operations wasn't miraculously going fix it over-night there was no doubt in my mind what my decision had to be.  

January 2016 - the storm finally settled and the sea became calm again.  It continued so until April 2016, then the storm returned,  only this time I was prepared for it.  I continue under specialist care,  recent investigations indicate further spinal deterioration.  However,  I now know that pain is going to be part of my daily life. As with any storm, some are worse than others,  the difference now is that I am learning to ride the waves. I go with the ebb and flow.  Most of the time I see pain as my companion, it can however be my demon also. Most of the time I embrace it and work within the boundaries that my body allows. Some days it overwhelms me but, as hard as I try, I can't find the strength, desire nor inclination to cope. Those days are dark, filled with profound sadness, loneliness and self -pity. 

 

Always in my mind I remain conscious that there are others worse off than me and I do give gratitude,  despite how low I feel, but it still doesn't stop me from curling up on the sofa and feeling sorry for myself. I reckon we are all allowed to have days like these. 

Over time you try anything to rid yourself of the demon that is pain. I have reached a point now where I know that when I wake each morning and allow myself to focus on the pain then it is almost like giving my mind permission to allow the demon out. Instead I try my very best as soon as I wake to acknowledge the feeling of pain but, as difficult as it is, I try not to dwell on it. I get up, sort my children out for school and when they have gone I focus on myself. I allow myself to sit for a few minutes and feel my pain.  I then set my limitations for the day knowing the severity of that days pain. 

 

It has been such an emotional struggle, and still is, to come to terms with the fact that in order to function to some capacity on a daily basis I have had to re-think my life,  to start to make changes that suit my 'new' needs. I have had to change my dreams, reach for different goals and acknowledge that it's ok to ask for help, but most important to recognise that I am still me.  I may be limited physically but I still have love in my heart, a rhythm in my soul and an abundance of life energy to keep my spirit strong, happy and ambitious to reach my new goals. 

Deirdre.

Revenge of the laparoscopy: part two

So way back on the 23rd of May I had a laparoscopy. This was to look into the chronic abdominal pain that I have been suffering for more than a year. I had already been x-rayed, MRI scanned, and had two exterior ultrasounds and a rather uncomfortable inner one, AND had a gastroscopy. So by this point you could say I was pretty committed to finding out what was going on in there.

Afterwards, I started to bloat up. All normal, part of the process, it will soon go down...so I was assured. This however, is not what happened. For three weeks, I continued to inflate. I could no longer wear any of my trousers, shorts or even skirts.

Out in Paphos, I decided to wear a bikini anyway. If anyone made a rude comment, I was just going to accuse them of committing a hate crime against a disabled person. I'm kind of sad that I still haven't had the opportunity to use the rant that I had planned.

I felt nauseous every day. As if I was full of food up to my neck. I just had to stop eating completely. In the end I had to turn to some strong laxative tea, having got nowhere with pharmacy recommended windease tablets, peppermint tea and fig juice.

It's now nearly one month after, and my stomach has gone down. It's still not as flat as it was, I think there's a new layer of fat on there, but at least it's not as tight as a newly-inflated football.

The real question is, did the removal of my endometriosis cure my pain? The short answer: no. I still have times where it feels like someone is stabbing me in the side with a rusty spoon. But I don't have all the fish-hook pulling pain, so there has been progress.

 I saw one of my doctors yesterday, and they were very pleased with how my scars are healing. Well ahead of schedule. Thank you aloe vera. Now I have to go for more blood tests, and give a few more samples....enough said.

Hope all my readers are enjoying your day, in sunshine or rain, good health or pain, we're all getting through life one day at a time.

Never fear, Lisa is here! Normal service will resume.

I've not left you forever, I have returned, singed around the edges, tired, probably dehydrated from long hours in the airport, but mostly intact.

All four flights I took for this holiday were delayed. That's a serious amount of time spent in airports. I think I have waiting down to an art form now. The key is to cover small amounts of the airport in stages, taking extra time to have a sit, drink some water, and try to read. Avoid looking at the flight time screens, as these will only frustrate you.

Paphos was beautiful, more so than I remembered from my trip there 3 or so years ago. Everywhere there were trees in blossom, in white, pink and red. Every day the sky was empty and blue, the sun shining fiercely.

Days were spent reading by the pool, swimming when it got too hot. I managed to finish 9 books, a feat not done in years. I think this was aided by the very limited access I had to the internet, which I think was wholly a good thing.

Even with repeated applications of factor 50 lotion, I have slightly darkened. I don't tan well, but there's definitely some change when I look at the parts covered by my bikini, namely my very white bottom. Now I am home, and the sky is totally white with clouds, and it's going to rain any minute, so that tan will soon be gone again.

Still, I'm sitting in my lovely little flat, with all my comforts, and it's not bad at all.

Jean shopping - a woman's worst nightmare

Before I became horribly ill and started taking to my bed a lot, I used to be fit. Not just regular person fit, a person on their way to making fitness a cornerstone of their whole life sort of fit. I swam twice a week, I walked everywhere, I did zumba, rollerskating, badminton, dune trekking. And I loved it.

Since my operation on the 23rd, I have lost all control of the size of my stomach. It has now taken over. Half of my clothes don't fit, and those that do feel unflattering and tight.

Just before I am due to go away, the one pair of jeans I could still get in to has split at the thigh. Disaster. I went out to buy another pair, but of course all the jeans currently on sale are horrible, and not what I want. Worse, they don't bloody fit. As I kept getting larger and larger sizes brought to the changing room, I had a mini meltdown.

It did not end in me buying jeans. I'm going to sew the old ones up, and continue to wait for my stomach to stop being a blimp.

1000 views!

Thanks to everyone reading and sharing this blog, I have now reached 1000 views! I hope some more of you will send me emails, and if you're thinking of doing a guest post I would love to hear from you. Have a great day all. x

Sun, sea, and absolutely no sex

For the next few weeks, you will notice a distinct lack of blogging. That's because I will be sunning myself in Cyprus.

This is no club 18-30 wild holiday though (more's the pity), this is a sophisticated family gathering.

Since I'll be hanging out with my parents, a few aunts, an uncle, and a grandmother, I'll have to dial back my rage-against-the-machine demeanour and generally behave myself.

The parents are hopeful that some sun and general lounging in the sun will help to restore me to health. I think there's certainly no harm in trying that approach.

In honour of this holiday, I have purchased several bikinis, and intend to spend my time swimming in the private pool, sunbathing, and sleeping, with the occasional forage for food. If necessarily, I will play the invalid card to ensure that food is brought to me by a helpful family member.

My laparoscopy scars have healed up nicely. I think that's in no small part thanks to my religious application of aloe vera gel. That stuff is miracle cream. Rub it on everything. Though even if they are still in evidence, who cares? Better to have a scar than endometriosis growing away inside. The most annoying thing has been the bloating. My stomach has been like a football, and is just starting to get back to its old self. Really they should give you an after-surgery corset to help you fit into your clothes.

Guest post - When Chronic Illness Threatens to Steal Your Joy

   Joy and Illness seem like two words that shouldn't even belong in the same sentence together. They seem incompatible, like laughter and pain. I promise you though, you can live a life of chronic illness and even pain, and still have laughter and joy.  Not every moment. Everyone deserves to break down once in a while. We chronic pain sufferers even more so. But we have but one life to live and I plan to enjoy it the most that I can.  See, I knew something was wrong about eight years ago. I would come home home from work, plop down on the couch and hardly be able to get up again the rest of the evening.  I would wake in the morning feeling worse than when I when to bed the night before.  At this time I had no health insurance so I put off going to the doctor. It wasn't until I started sweating profusely and trembling violently that I finally went.  I was soon diagnosed with Fibromyalgia and Graves Disease (Overactive Thyroid).

Things kept changing for me, evolving, and soon my joints were burning. First my lower back and hips, then my shoulders, ankles, feet and hands.  Not too long later I was diagnosed with inflammatory arthritis, chronic migraines, and clinical depression.  

 

Pain soon became my close companion.  John Green was really on to something when he said "That's the thing about pain. It demands to be felt." Pain is continually bringing your mind back to the problem. That's the way God designed it.  Pain is a signal to bring your attention to a problem in your body that needs to be fixed.  But what if it can't be fixed? What if even doctors don't know how to treat your diseases? What are you left with? Pain. Your left with continual pain that is demanding you feel it and think about it. What happens when you are always thinking about your pain? You lose your joy, your love for life.  Here are a few of the ways I have fought to keep my joy.

 

Know your limitations. I would be lying if I said I wasn't still working on this.  I have, however, been better at setting boundaries for my children.  They now know that the mornings are a very painful time for mommy because my joints are stiff and sore and because of my fibromyalgia fatigue.  The boundary I have set for them in the morning is that I get at least one hour to myself to drink my coffee and to wait till my pain medicine kicks in and starts working.  They know not to disturb me or to ask for favors during this time.  Having autoimmune diseases leave you with probably less that half the energy a normal person has to work with during the day.  With three kids to take care of I almost always overdo it.  Many times by eight in the evening I am exhausted and can do nothing besides rest.  I also only plan one activity a day. Sometimes grocery shopping is all that I have the energy to commit to.  So I know that if I need to go shopping and someone asks me to do them a favor that requires lots of energy I just have to say no.  I cannot give what I do not have.  

 

Having a chronic illness or being disabled may require you to set new goals or dream new dreams.  If you had asked me ten years ago what my goal was I probably would have told you I wanted to be a business owner.  Now? I just want to be the best wife, mother, homemaker I can be.  You may have to change your life goals up now that you are ill but dreams, goals, and hope are so very important to your happiness now.  It gives you something to work towards, something to look forward to.  What am I trying to say? Never. Stop. Dreaming.

 

If there is something in your life that your are discontented with, make a change.  If your doctors aren't giving you the help you need, switch doctors.  My rheumatologist had tried only one drug for the arthritis is my joints, and when I told him it wasn't helping, he shrugged and told me that was all he could do for me.  This, to me, was unacceptable.  I have three children who depend on me to raise them.  I need to be able to get around as easily and pain free as possible. So what did I do? I switched to a new doctor who tried a different medicine for me that worked better.  I didn't want to do it because I had been going to him for five years and the next closest rheumatologist was over an hours drive away.  But only you know what you can and cannot live with and there are some times in life when change is necessary.

 

Don't tolerate negative people.  You know the ones.  The ones who are always criticizing you and everyone else.  I can't count how many times I would like for certain people to feel what it feels like to live in my body even just for a day. I had a family member that believed fibromyalgia was a made up condition.  She said I was fine and needed to go back to work.  I cannot tell you how angry this made me.  She really had no idea the internal hell I was going through on a daily basis.  I couldn't change her but I could change how much time I spent around her and I cut it back tremendously.  Judgemental people who only have time for you when they need you and expect you to drop everything at their whim have no place in your life healthy let alone unwell. Life is hard. It's hard well. It's even harder sick.  Do yourself a favor and be a friend and have friends that build each other up instead of tearing each other down. 

 

Don't forget to thank God for your blessings.  Sure your health may be poor but I'm willing to bet there are many good things in your life also.  There are blessings all around you if you will take the time to stop and look.  I do realize that we all have bad days sometimes.  Maybe we slept poorly or maybe we are in pain.  When all else fails I think you should do what you can to take your mind off it. Read a great book.  Snuggle and watch a scary movie with your favorite person (or pet!). Soak in a hot tub. Get out and do something fun with your friends.  Whatever it takes to get your mind off your problems.

 

Don't forget to invest back into yourself! Just because we are unwell does not mean that we aren't still women. Get your hair and nails done, put healthy food into your body and watch it transform into a slim new you! Buy yourself a new outfit.  You will feel better about yourself and you will find some of that joy and happiness that has been escaping you lately.  Just don't forget that you are still a women and you deserve to take care of yourself just as much as anyone else.                     

 

    ~  Courtney Diggs

 

 

Revenge of the laparoscopy

Is it now six days since I had my laparoscopy and endometriosis removal.

Today, the itching has started. I already had the extreme tiredness and terrible pains, but the itching may well be worse. Because of course, the areas that are itching can absolutely under no circumstances be scratched.

I have managed to have a good nose at the scars and not pass out. One is horizontal, on my left side, and about half an inch. The other comes vertically out of my belly button for maybe a bit more than an inch. They are neat and will probably fade to virtually nothing.

I hate itching. The best painkiller I ever used was tramadol, but I could hardly ever take it because it made my entire body itch, even up inside my noise. When you live alone, and there's no one to help scratch your back at 3am, it's just not worth it. I am not above rubbing my body against the carpet, so I have to protect my own dignity.

Quite a few people have asked me if I am better yet. No. I've just had surgery, and we don't even know yet if it will cure my chronic pain, because the pain of the surgery prevents me from knowing if I still have other pains as well. In either case, after more than a year of pain, I'm not going to suddenly spring back to my old self.

Patience please.

Shortly after surgery...

I woke up in the brightly lit and busy recovery room. It was perhaps half an hour after my surgery had been completed.

I was in agony, and crying. A lovely nurse gave me tissues and water, encouraging me to let it all out. Even then, I was aware that the surgery must have gone without a hitch, and that was something to be pleased about. I had not woken up. I had not felt anything during, or if I did I had no memory of it. These were good things.

Mum was waiting for me in my room. I was transferred from operating bed to regular bed, via some lifting and sliding action, and from then on I was officially in recovery. The worst was over.

 The pain was probably the worst I have ever experienced. Considering I only had two small holes in me, I can only imagine how much worse it gets if you need something more serious done. But that's surgery for you. As much as you can sedate and anesthetize, your body is never going to be happy that someone's been poking it with a scalpel.

I had some good news. My surgeon came up with some pictures to show me my insides. She remarked on how lovely my pelvis was, and how good my organs look. (My organs always get a lot of compliments, the benefit of clean-living).

During the laparoscopy, some endometriosis had been uncovered growing outside my womb. It had now been burnt away, and this could very well be the cure for my crippling abdominal pains. In the meantime, I just had to hang in there and recover.

(This is not one of my pictures, but shows what I had. Alas, mine are in my files and I did not get to take them home for repeat viewing)

It would be great to think that in a few weeks I could be back to my regular, limping self, instead of this new extra pain version, but I will just have to wait and see. Right now, everything hurts, and I am ridiculously tired. I got up for breakfast at 7am, read for a bit, and the next thing I knew I was waking up at 2pm.

I survived!

Monday was surgery day.

I felt ok, but then threw up when I was brushing my teeth, so I guess I was quite nervous. Actually I was so scared that I just did not allow myself to think about it at all. Just before they took me down, I was going to do a runner, and hide in a cupboard until I missed my slot.

Before then, I had to get checked in. Changed into a fetching hospital gown and a bizarre pair of see-through clown pants that did not fit no matter which way I turned them round. Tight on the bum and baggy on the front.

Plenty of people came to see me. At least two nurses, the surgeon, and the anesthetist. My blood pressure was checked, and they took some of my wee away to have a good nose at for the umpteenth time. All did their best to reassure me that there was virtually no risk of death, and that it would be over before I knew it.

Around 1.30pm I got taken down to theater. There I had a half hour wait, as another surgery over-ran, and my bladder became increasingly agitated. As I had my final wee before being taken into the fateful room, I thought, this is it, this is my last chance to run and hide in a cupboard. Alas, the nurse was waiting right outside to prevent any such departures.

And so I went in and lay down on a bed, surrounded by nurses and a bright looking trainee and the anesthetist. He said they were giving me something to chill me out, and injected something into my hand. And that is the last thing I remember.

For all my fears of not falling asleep, or waking up during the surgery, it was totally fine. They cut me open, stuck some cameras in, had a good poke about, and I was none the wiser.

Even better, they actually found something that may explain my chronic abdominal pain. 

Considerably more tired than you

If you get the reference, props to you, if not, watch Harry Enfield and Chums. So many good laughs.

A common theme that runs through support groups for people with chronic illnesses, is that we're all damn exhausted. It doesn't matter what the illness is, if you have constant pain of any kind, the consensus is that you will be drained.

This annoys me no end. It used to be rare to have a day when I wasn't doing something after work, now even getting through regular chores and not working is enough to keep me tired out. For every day that I try to act as if I was still my old self, I have to pay for it with a day in bed.

As someone who is a bit in love with her bed, you might think it's not so much of a hardship. Well you'd be wrong. It's one thing to wake up and think "screw it, one more hour." It's quite another to slide out of bed on to the floor, needing to get up because you're so thirsty, but so tired that you barely feel alive.

Today I have spent at least half of the day in bed. There was just no point in being awake. I had no energy to focus on anything, and enough pain that sleep seemed like the better choice anyway. If anyone has any tips for energy, please share. I have caffeine immunity, so coffee, redbull etc does nothing for me. I know there are some debates on whether that's a real thing, but trust me it is. I can drink an espresso and be asleep an hour later, and that was the case even before I got ill.

To everyone out there sleeping more than they would like, I can only offer this prayer. May your beds be comfortable, and your sheets clean.

Falling in the street

Falling in public must be one of, if not THE MOST embarrassing thing you can do in public. Worse than farting.

I can't even remember the last time I fell before this. I was living in a blissful world where falling is something that happens in cartoons, or just to other people. I remember when I was really little, and my best friend fell in a play park and hurt herself. I burst into laughter. You can't help it. When people fall, it just comes out, it's a weird reaction that is hard to suppress.

So there I was, looking cool as always, when I felt it. My foot gave way on a slippery bit of grate, and I was going down. I managed to land on one hand, so avoided hitting the floor with my face (which did happen once when I was eight), and a sweet little girl nearby asked if I was ok. People around me were giving me that look, waiting for me to nod that I'm fine, ha ha ha, totally fine.

I brushed myself off and carried on, willing everyone around me to just stop looking. Stop looking at meeeee!

It wasn't until later that I realised I actually had hurt myself. My whole hip was aching from the impact with the unyielding pavement, and my hand still had gravel dents. But at least I was alive. Lisa 1, Pavement 0.

Not having kids

Yet another relationship has come to an end. This time, because I don't want to have any children.

This has actually been a major problem over the last six years or so, and I can see it getting worse. As men hit their thirties, they are ready for their first born to be carried by someone else for nine months and then placed in their hands after the birth, but only for the fun stuff not for the cleaning or feeding. Whoops sounding a little bitter there. I'm sure not all men are like that...

People ask me why I don't want kids. Well, it just never happened for me. Simple as. And now I'm thirty, and perfectly happy without kids, and I have zero desire to have any. This is the part people cannot get their heads around. I JUST DON'T WANT ANY! You know, the same way you know if you would prefer to travel by car or sealed inside a lead box and dropped into a river, hoping you'll reach your intended destination.

Even if I did want to have children, the ship has sailed for me to carry them myself, but even that doesn't stop people from going on about it. I'm thinking about getting some slogan tees to hammer the message home, or maybe a tattoo across my stomach Insemination Not Welcome.

Please, let the next man I meet be charming, good in bed, and childfree for life. Or at least childfree until I replace him with a younger model.

The Kodak whisperer

I am a great lover of technology. That might sound a little dodgy, but I don't mean like THAT. Well, only if it's a very attractive laptop...Anyways! I am a great believer that you should treat your machines with love and care, and respect. Otherwise, they will hold grudges against you, and generally wreak havoc on your life.

I have always been a little...eccentric shall we say, in this manner. I am the kind or person that thanks elevators and vending machines. That way, when the machines rise up against us, I will still have a few on my side, ready to take me up and down and give me snacks for an extortionate price.

Watching people mistreat machines causes me the kind of pain that I imagine most people reserve for small, injured children. I watch my mother pick up her laptop by the screen and I wail inside.

And so I did not expect my trusty, ancient Kodak all in one machine to turn against me. It has been my faithful companion for near a decade, printing, scanning, copying, truly a marvel of the modern age. Plus I got it free, as compensation for an ex-boyfriend running off with someone else and leaving this expensive bit of kit behind.

 It had been working perfectly, and now all it would say to me was could not scan, press ok to continue. No, not ok! I need you to scan! I have insurance claims to sort out! I have no end of doctor's invoices to submit! (31 in the last 12 months).

I searched high and low on the internet until I found an unlikely fix. It advised opening a paint program and telling the scanner to scan from there...make sense? Well reader, that is what I did, and, mercifully, it worked.

Still no idea as to why my scanner has decided to play hardball. Now I have to find some way to appease it...

400 views!

Thanks to everyone that has popped by. This blog has now reached 400 views! I am surprised that it has had so many so quickly, and I hope that some of you will continue to read new posts, and maybe even leave a comment or two!

Thanks also for the emails I have received. Don't be afraid to drop me a line!

I wake up every morning, with a big smile on my face!

Actually I don't, but that is such a catchy song.

When I wake up, there are about 5 seconds where my brain does this:

"It appears you have a stomach ache today. Perhaps you are menstruating?"
"No brain, that's the same stomach pain I've had for a year, can you please get with it?"

That is honestly what happens, and it reminds me of something I learnt in a pain management class. Our brains have a fixed idea of what our bodies are like. If you lose a limb, the map in your brain doesn't change, it carries on as is your body is the same as it was. Hence phantom limb pain. Well it seems my brain is reluctant to accept this new reality.

I wake up every morning, and my abdomen hurts. Not actually my stomach. That's a common misunderstanding friends and family have. The stomach is on organ, and mine has been checked with a delightful gastroscopy. It's all good in there.

No, what I have is what is known in the medical community as "we're not really sure, and hopefully it will go away on its own."

For some reason, my nerves are just sending pain signals, all day, every day. So I don't wake up with a big smile on my face. But I get up, I have a cup of tea, and life is not so bad.

Preparing for surgery

On the 23rd May I will be having a diagnostic laparoscopy and a cystoscopy.

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 Laparoscopy is a surgery that uses a thin, lighted tube put through a cut (incision) in the belly to look at the abdominal organs or the female pelvic organs . Laparoscopy is used to find problems such as cysts, adhesions, fibroids , and infection. Tissue samples can be taken for biopsy through the tube (laparoscope).

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Cystoscopy is a procedure that allows your doctor to examine the lining of your bladder and the tube that carries urine out of your body (urethra). A hollow tube (cystoscope) equipped with a lens is inserted into your urethra and slowly advanced into your bladder.

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 I just had a rummage for any pictures to go with those descriptions, and I don't think there is actually one that I want to look at right now. Those few minutes of browsing have just scarred me. Surgical tools just look so damn horrific.

Today I had to go in for my assessment, to make sure I am a fit candidate and to avoid complications down the road.

All in all, I am still in good health, considering. My bloodwork is nice, my blood pressure remains perfect, resting pulse excellent. If it wasn't for the constant pain, I would be a truly excellent specimen. It's times like that I am grateful for all the chocolate I didn't eat, and all the exercise that I did. It's still paying dividends now.

 So all is well, and the surgery is set to go ahead. The only thing that is still freaking me out is the anesthetic. Being asleep whilst someone cuts me open is probably my deepest fear, a phobia if you will. One that I never thought I would actually face, or not until I was old and having my first hip replacement surgery.

I will do what I always do in such situations. Picture time skipping until the day after the surgery, when it's all over, and I'm telling everyone what a breeze it was, and people call me brave and give me sweets.

Things you should never say to someone with a chronic condition

People tend to be traditional when it comes to greetings and smalltalk. They have a certain set of phrases and they stick to them, often failing to recognise when these are not appropriate.

I've had my chronic abdominal pain now since spring 2015. It might have even started before then, and I just discounted it as random stomach aches. It's been constant and known about to all of my friends since the end of last year, when it reached full bloom.

However, people still say to me "I hope you feel better soon," or "I hope you get better soon," or something of that kind.

Well, by this point, I think we can all agree that I did not get better soon. Soon has passed. This might actually be me for a year, or ten years, or forever. So for people to keep saying they hope I get better...that's really a very unkind thing to say. You wouldn't say it to someone with a terminal illness right? (I certainly hope not!)

 What you can say to me is something along the lines of "How are you getting on? Do you need anything?" Basically, anything that isn't just ill-considered and a bit offensive. I understand people are kind and well-meaning, but as someone regularly in a lot of pain, my rage meter is getting quite full...

Finding a new thing

So my life is not exactly the whirlwind of activity that it used to be. I can't go on stage at present, so there's a lot of time to fill that used to be given over to long rehearsals and script learning.

I have a few recipe books at home, mostly gifts, and though I have looked at them plenty I have almost never used them.

 This one, 500 vegan dishes, I have had for years. I can't even remember how I got it. Anyhow, I decided that I would actually attempt to start cooking some new things.

I am extremely lazy when it comes to cooking. I blame years without a long-term relationship. There's no one there to stop me from coming home and eating a crisp sandwich, and I have very little interest in food. Food for me is generally just something you have to get through in order that you don't die.

Not that I don't occasionally enjoy myself with food. A great bar of chocolate, an amazing stacked hummus and salad sandwich, but those times are definitely in the minority.

But I thought it was time to expand my repertoire a bit. I had attempted this before, but this time I am much more likely to be trapped at home with plenty of time to cook.

And so you will see to the right there my first attempt at making something I have never made before. Vegan French toast. Sugar, silken tofu, soya milk, nutmeg, sugar and way too much syrup for dressing.  And yes, it's white bread. Forbidden, lovely, delicious white bread. Full of salt and all kinds of bad things besides.

I know it does not look like a piece of art. It is not photo-ready. This is not instagram. It's something I cooked and ate, not to go up framed on a wall, and by gosh it was good. Though I should not have made a second round....slightly sick now.

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."

You have been terminated

After being ill for so long, it became clear to me that I was going to lose my job.

Apart from a couple of weeks here and there where I had struggled to go in, I had been signed off since the end of November, and it was now the beginning of May.

Some of my doctors, and a work liaison person who had been assigned to me, were confident that my job could be saved. I was much more realistic than them. I had a long talk with my regular GP to discuss my case.

A few things were clear.

1: I still lacked an agreed upon diagnosis.
2: My pain was still random in intensity. Sometimes I would have a mild ache for a few days in a row, but the excruciating bursts that left me confined to my bed would return eventually. The intense pain could last for an hour, or for days. It was this randomness that prevented me from agreeing even part-time hours.
3: The few painkillers that actually worked on my condition had side-effects that would prevent me from working to the required mental level.

And so it was that on the 3rd of May, I was officially let go.

Even expecting it to happen, I was hit by a wave of sadness the next day. This was a job that I had loved, with good colleagues, and I had planned to make a long career out of it.

Now I was unemployed, poor, and, like everyone, getting older. Only I had just passed 30, which seems significant in the context of employability. (Wrongly?)

To make sure I wasn't about to throw myself off a building, I had a long chat with a mental health community nurse, and we hashed out the things that I need to focus on at present. Career is just not one of them. But the time will come again.