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.