The DLA Decision

Yesterday I read an article from the Guardian about how people on the DLA benefits will be fined £71 if they aren't taking the right steps to get back into work.

Right, we all know some people don't even deserve those benefits. But there are many disabled people out there who do, and who struggle, like me. 

I have had 9 interviews since February, no luck with any of them, after being fired in February from a job because I used a walking stick. The interviews all went great, and this was confirmed by the feedback I received. But there always seemed to be one person who 'had more experience than me'. I continue to look for jobs now, but due to my restrictions, I am very limited in what I can do, leaving very little job openings for me. I struggle, but I pursue. I need a job.

What scared me about that article, is that if for any reason the DLA decided I wasn't trying hard enough, and decided to fine me what would be 2 weeks pay, I wouldn't be emotionally strong enough to take anymore hassle than all of this has already caused. I simply can't be put under that stress.

So, it has been decided. I am not attending the court hearing. They can decide by themselves, and if I do not succeed, then at least I won't have to correspond with them anymore. The DLA cause more stress than they are supposed to relieve. I know for a fact that if I went into that court room, just from sheer nervousness and thinking about everything that has happened in the past few years, I would break down in tears. Who wants to see that?

On another note, after seeing a friend go on a pain killer and actually get results from it, I asked my doctor if she could prescribe me it to try, since none of my other pain killers have worked. She never bothered calling me back, so I called the surgery to find that she had left a message saying 'it's best to wait'. Wait for what, exactly? It's been years, and I am sick of waiting. I want to get stuff done. Show me a doctor who actually cares about your problems! 

I've found that little things like this (although they seem very big to me) have distraught me emotionally and I have ended up in tears from a simple 'no pain killers for you'. I can't explain why I've been so emotional recently, with job rejections, doctor's rejections, hospitals messing up my appointments, or the DLA causing me stress, but I have a feeling that it's just all gotten on top of me and I'm just finding it a little harder to cope than usual. 

Is It Worth It?

I've recently come back from a 5 day camping trip in Wales. It was the Green Man festival, and while the park was beautiful and the music was great, it was of course a struggle to get up and down the steep hills in the thick, wet and slimy mud with my walking stick. Of course, I didn't mind that much. It was only for 5 days, and it was a festival! One evening we even rented a mobility scooter. Unfortunately, it kept on getting stuck in the thick mud, and at one point a drunk woman decided to climb on top of it while we were stuck. Sat there in shock at the stupidity of some people, my partner removed her from the scooter and we went off as fast as we could.

Anyway, after coming home I find a few letters on my doorstep. The first one was a reply to the complaint I had made to the hospital about my mistreatment. Of course, the hospital had denied everything that had happened and even lied about the fact that they had prescribed me painkillers (which they most certainly did not). I was appalled by this letter, and although told to complain yet again by my partner, I simply did not have the motivation to do so.

The second letter was the date for my court hearing for my DLA. My court hearing, ugh. Travelling out of my way to stand alone in a court room, nervous has heck, to pour my heart out to people who I don't know, and already have no sympathy for my conditions. I have no idea what to say or do, I will be on my own, no back up, no support, no clue. Whenever I make public speeches my mouth always drys up and I can't talk. I get so nervous. I know the same thing is going to happen then.

My question is: Is it all worth it? All this hassle I get about my conditions, my mistreatment, what I do and don't deserve, what kind of help I get, what support I get. Is all of this distressing and upsetting really worth what I could get in return? What would I get in return?

What do I need to be able to cope with my chronic pain? Obviously I don't need stress, the one thing I try and avoid is what I seem to get most by the people who are supposed to support me. Makes sense, huh...

I need love and support, which is what I get from my family and friends. But I suppose I also need comfort, at the back of my mind to know that everything is going to be ok. Currently it isn't, I'm jobless with no income, I'm in constant pain and I'm always fretting about the future.

Do I need to stop going to the doctors? The hospital? Do I need to forget the DLA? Are they worth it?  What exactly is it that I should do, and where do I get the guidance for it?

Matter Of Luck

Many people say that when you get dealt the bad hands in life, it makes you appreciate all the good things you have. I'm hoping that for most people, that is true. I know for me it is.

Sometimes I feel like my luck could not get any worse. I have not even bothered to count how many different medical conditions I have, all confirmed by the doctors, which just seem to keep coming and coming. It seems like a pile of bricks fell on top of me, and every now and again another few bricks will fall, just as I'm climbing out of the pile. A very frustrating time.

On the other hand, sometimes you just have to stop and look at what is happening in the world around you. This weekend, I noticed just how much my partner looks after me, trying to make sure I'm as comfortable as possible, that I have everything I need, knowing when to take my pain killers, and most of all, that I'm happy. Little things may not always be notable, but they certainly count. There isn't necessarily any need for big gestures to make someone happy.

My partner means the world to me, and I know that I mean the world to him too. He goes out of his way to make sure that I'm alright, or at least that I'm alright as can be. This isn't just a struggle for me, it's a struggle for him too, and just like the way he'll never understand what these conditions are like, i'll never understand what it's like to look after someone in chronic pain.

Life can be a matter of luck. This time I know I was lucky enough to fall into the hands of my partner.

An Interesting Link

Hello!

So now that I've had my rants in my previous posts, it's time to actually tell you about what I do to control my conditions.

As you know, I said I was on pain killers 4 times a day every day. As far as I know, that isn't going to stop any time soon. I was rather worried about the affects of long time pain killers, but of course the doctors told me not to worry about it. So right now, I try not to think about it to be honest.

Obviously I'd recommend that people don't go onto pain killers daily, and would rather you try to use natural remedies, however, I understand that they, most of the time, don't work. One thing I would stress though is that to control pain, is the need to relax. Relaxation is one of the key factors in making yourself feel better, whether you're in pain or not. Sometimes it's quite difficult, but it is possible.

I tried stopping the pain killers for about 3/4 days at one point. I went cold turkey, probably because I ran out and thought I'd give it a chance. What happened next is hard to tell, a doctor is more likely to know what it was. I got excruciating headaches for those 3/4 days. Very similar to migraines. I also got pain all over my body, especially in the mornings after waking up. Left to debate, it was either the actual pain that I'm in due to my conditions (without the pain killers), or it was withdrawal symptoms. Hard to tell, I had to go back on them anyway, as I couldn't deal with the pain.

It's not the best situation, but it works at the moment, my plan for the future is to get referred to the pain clinic and 'learn' how to deal with it properly. Hopefully that is possible, hopefully the pain will die down eventually.

So, this was the interesting link I found: http://webhome.idirect.com/~wolfnowl/thyroid12.htm

It explains how pain is just in your head, and that mentally you can control it. I'm not sure I entirely agree that it is possible for everyone to be able to do this. I know that when I'm sitting on the sofa, engrossed in a movie, or a book, completely unaware of my surroundings, that I will start to get pain in my body (generally in my face/head). Nothing would have caused it, yet I am so used to these random pains, that I am unaware that they're even happening. How am I supposed to control those?

I would say a reaction to pain is a good thing. If our body weren't to react when we touched something very hot, we would burn ourselves. It's only when we become overly sensitive, or have chronic pain, that it becomes a problem to deal with. So try it out, read the link, find some natural remedies, book yourself a spa for the weekend! Just leave the man-made products 'til last.

Explanation: My Story

So, I suppose I best explain what exactly it is I deal with and how it happened. This is where you get to read my life story (yay!). Of course, you can skip this post, but if you really want to get to know me, give it a read.

In my previous post I explained I have Bruxism (grinding and clenching of the teeth). I have done this in my sleep since I was a child, for no apparent reason, although it worsened with stress. This is one of the contributing factors to my TMJ disorder, although I didn't know that to begin with.

At 16 years old, it was my last day of high school, and to celebrate, I went outside with my friends to sit in the field. I usually stayed inside to play the piano in music class. Anyway, not much later, I told a friend that I wanted to go inside, aware of the boys playing football next to us, not wanting to get hurt. Low and behold, as soon as I stood up to go inside, the football was kicked into the back of my head. In shock, my friends took me inside the building, and I collapsed in the corridor, screaming in pain and then falling unconscious. The hit was so hard I was rushed to A&E, knocked out for 2 minutes. I was discharged after some pain killers and took rest at home.

For 9 months after I suffered from Post Concussion Syndrome, affecting my GCSE exams and general life. At one point they even thought I had a brain tumor. Then, one morning, I woke up with a yawn and *pop*! My jaw goes.

A visit to the doctor confirmed it was TMJ Disorder, and I was told there and then that it would go away in a couple of weeks. Nearly 4 years later, here I am. Many visits to the doctors and hospitals, I've been through tonnes of different pain killers, exercises, diets, mouth guards and operations. Palmed off again and again, I began to get sick of being told to 'go home and take some ibuprofen'. Now, I'm on heavy pain killers 4 times a day, every day, and occasionally muscle relaxants.

My jaw disorder affects my diet, I am limited with what I can eat, sometimes I can barely get things into my mouth. It affects my work, I had to be dismissed from a previous job due to this 'disability', even though I was told it wasn't one, I was still criticised for not declaring it. Working on the telephones was all I had done in my previous jobs, so that was a bit of a bummer. TMJ Disorder is what causes my hyperacusis (sensitivity to hearing), and of course is made worse by the Bruxism, which wears down my teeth nightly, causing extreme sensitivity to hot and cold food.

So that's that. It's very painful and annoying. Then there's my twisted leg joints. Since I was about 12/13 I remember having a pain just below my hip/side of my thigh. I never did anything about it, lord knows why, but I never wanted to complain. Now I know that pain was burstitis, caused by my twisted leg joints.

Only just over a year ago did I start to get serious pain in my legs. After countless visits to the doctors, dismissing me with no explanation, I got so fed up that I demanded they do something. I was then tested for a blood clot there and then, and tested positive. Rushed to hospital, I was tested yet again, and came back positive. As they could not scan my leg for 5 days, I had to have injections in my stomach during that time. I managed to endure these, despite having a major fear of needles, but they weren't so bad. The hospital eventually scanned me and found nothing, and to this day have no reason as to why I tested positive.

After 6 months of returning to doctors and getting no results, I eventually saw one particular doctor who, for the first time, actually decided to examine my legs. There and then, he diagnosed me with flat feet and hypermobility, which after years of being unnoticed, had caused my knee and hip joints to twist inwards, causing pain in my hips and legs, and also making it difficult to walk. He referred me to hospital, and after a confusing transition to a different hospital, I had my shoe soles made to correct my feet, and started using a walking stick. Unfortunately, the pain is still there, and walking is still a trouble.

Just to top it all off, we have the last major condition, Fibromyalgia. I was only diagnosed with this condition about 5 months ago. Is a general muscular condition, causing pain all around the body. It has also been shown that people with Fibro have an over-sensitivity to pain. I was told I would be referred to a pain clinic to deal with this condition, but to this day, still have not. I'm lucky I even have the pain killers.

Since I was young I have also suffered with PCOS, which many women do. The way in which it affected me was that it gave me excessive hair growth, and as this appeared going through high school, I was bullied for it. I tried many different ways to deal with it, but it did affect my self confidence very badly, and to this day it still does, although I have learnt to deal with it a bit better now.

As you can imagine, after being dismissed from my previous job, I was devastated, especially as I had just moved into a new flat with my partner. About a month after I found another job, the perfect one, but was unfairly dismissed from that one too, this time due to my walking stick. Ever since then I have had no luck with finding a job. This is where I have gone into my deep, self loathing depression that I must avoid.

Frustrated and upset, I am struggling to cope with a routine of getting up, applying for jobs, calling up recruiters, calling up companies, looking for adverts, watching television, going on my laptop, occasionally going outside, for my partner to then come home at 7pm. And what does he come home to? Someone who's guilt has overcome them so badly, that they feel worthless. But my partner does not know that. He comes home to someone who smiles, hugs, and cuddles, someone who watches movies, eats dinners, and plays games with. It is not a fake image, but a way of coping. If my partner were to see me miserable every day, would he want to see me at all? Of course I know I can talk to my partner, he is my love, my soul mate. But sometimes you need to pretend to not be in pain, just to see how it benefits others. In my case, I get to see my partner happy, and sometimes that is enough to make me forget about the pain.

The Diaries Begin

Hello and welcome to my blog.

My name is Mary-Jane, I'm 19 years old and struggling to cope.

I'll get straight to it. I live with TMJ Disorder, Fibromyalgia, Hyperacusis, PCOS and twisted leg joints. I also have underlying conditions of Bruxism, Hypermobility and flat feet. I've suffered for a good few years now.

I'm writing this blog not to make others aware of what I have, but just as a place to share my feelings. I have a loving partner, supporting family and wonderful friends. I also know people who suffer from the same conditions I do. But who do I really have to talk to?

When you talk to someone, whether that is to complain that you're in pain, or just feeling a bit low, as supportive as they are, there is nothing they can do. Normally, there's nothing anyone can do. Sometimes the doctors can help, sometimes they can't. Sometimes they choose not to, and palm you off. This angers me more than anything as I've experienced it countless times, and hate to imagine the others who have too.

I have what we call 'invisible illnesses'. If people were to look at me in public, they would assume I'm disabled as I use a walking stick. Of course, they would be right, but no one would ever know what goes on behind that image. Many people don't stop and look behind the smile. Of course, if I were to stop smiling, I would be criticised for being miserable. Generally, it's a no win situation, which makes it all the more difficult. Thank you, society.

Right now I'm finding it harder to cope more than ever. I'm being rejected left, right and centre by so many people. I feel that I am sinking into a depression, a routine, a bad circle of life, one that I want to escape before it worsens. I feel like a burden to those around me, I feel pathetic, but most of all I feel like a failure.

There is something I need to get out of the way now before anyone begins to generate an opinion. There are many different illnesses out there, some minor, some major, some that can kill, some that can't. Now generally, the reason people get frustrated with people like me is because they don't 'understand'. So let me explain. People have different pain thresholds and mental capacities, a paper cut will hurt more to someone than a broken arm to another. To put it easily; people suffer differently. And that is what 'outsiders' don't understand. There will be many people who have my conditions who are happy to live their daily lives with no fuss, and then there are many people who have my conditions and are suicidal. Hopefully, there will be some people who are like me.

It is not fair to compare people's conditions with that of others. I will never compare myself to someone else, I am not worse off or better off than anyone, I am who I am, and thankfully, my friends, family, and partner understand that.

Another struggle for outsiders is that they don't know how to respond. I completely understand that. What are you supposed to say when someone says: "I'm going to be in pain for the rest of my life." How do you respond? I guess everyone is different in that respect.

Well, this is just the beginning, the explanation. This is the blog. If anything, it'll help me get my emotions out where I struggle to in the real world. Just remember, I may be ill, but I'm only 'different' if that is how you decide to view me.