Music

On Monday I had a therapeutic lumbar puncture, they withdrew sone spinal fluid and my headache went away.

I don’t know how long it’s going to last and because of that I am filling my days enjoying I can. If the headache never comes back (please God) then I will be enjoying myself for a very long time!

But that’s not what this is about.

I just finished watching the season 4 finale of Game of Thrones. As usual it enthralled me from beginning to end with the visuals, the emotion, the storyline, dammit everything was perfect (Peter Dinklage – seriously? How amazing are you?!); but the end sequence astounded me for one reason – the music.

Ramin Djawadi, the composer, created something astounding. I have hunted for a link for the piece but so far I am having Internet failure.

The piece was an extended, slowed down version of the original theme with a beautiful choral addition that just… I felt something I haven’t felt in a while.

It started in the pit of my stomach and then brought my spine in to play. Pleasurable shivers worked their way up as my lungs started to fill so much they ached and my heart was squeezed. My throat closed and I began to feel lightheaded. And then, oh, a sob escaped and my heart knew it could explode. Tears spring from my eyes and I started to float along stars.

I could hear the music. No, I could feel the music again.

Since I have had these stupid headaches, for 2 stupid years, I have been losing the ability to really hear music. I listen and the notes have been there, the melodies and harmonies, the instruments and voices, but it’s been like seeing through frosted glass. Today, I heard it properly. It filled my heart and I was transformed.

God, how I missed it.

I am holding onto this feeling and I am going to remember it for as long as I can.

IIH took away my ability to be in a choir. I couldn’t hear the other parts, the notes in my head sounded nothing like what was supposed to come out of my throat and it broke my heart. To not feel that emotional high that I got when the music flowed from me and I was part of voices all heading to a heavenly high was… There are no words. I hid from it and buried it like it didn’t bother me but there was a hole in my soul.

Is it possible that I might feel that again?

I hope so.

I don’t really want to let myself believe that I could sing again, but for now the fact that I can hear again is enough.

I think it’s going to get loud around here.

And again…

It is coming up to 7 in the morning as I write this. I have had no sleep again.

My head has been in pain with the whole left side down to my neck feeling like it is a river of hot electrified lava.

I took 3 times my dose of Tramadol to try and kill the pain but it didn’t even touch it. I am not quite stupid enough to take more incase I get a rebound headache too.

This has got to stop.

I have my Xray guided lumbar puncture on the 16th which will hopefully give me some relief; but I am, in my mind, racing towards my appointment in July when things can be changed.  It is quite clear, to me at least, that my medication isn’t working. Or, if it is, that I don’t have the thing that they are supposed to sort out.

What if they got the diagnosis wrong?

Last night I started hearing voices again. Granted it was Neil’s asking me innocuous questions and he was there to tell me that it wasn’t real so it wasn’t dangerous or anything like that. What if it happens in a job interview or something important?

I am truly scared and don’t think I can cope with this anymore.

I said as much to Neil last night and he replied, “what’s the other option?” which made me think about bad things and going to A&E but, listening to people’s stories on the various IIH forums I am involved with, they are doing even less – literally filling you up on morphine and sending you home. Yes, I would get a night’s sleep but it wouldn’t solve anything and then I’d have to wait to get into Pain Management if I could get a referral in the first place.

But I shouldn’t complain. At least I don’t have the nightmare of dealing with the US healthcare system.

I shouldn’t complain anyway because I am not going through this alone like so many are. I even have an emotional support animal who insists on checking on me several times a night and licking my face or foot (depending which bit he can reach).

I shouldn’t complain.

Beautiful

I saw things that made my heart glad today. My friends beautiful children, and my beautiful friend. She always makes my day better and makes me realise that things will be okay. She is a good kind person and I don’t know what I would do without her. I never feel as if I deserve her friendship as she is so much better than me and has been for the nearly 25 years we have known each other.

Later tonight Neil and I sat outside in the garden talking by candlelight. We want to fill the garden with fairy lights for the world cup so that we can have barbecues and parties for all the England matches… How ever many there may be. So many plans…

It’s amazing how much better I feel when the sun is out.

Outside

I went out today.

We went to a friends for a role play game and I enjoyed myself. My head was a mess throughout but apparently I made sense and didn’t make an arse of myself.  I kept forgetting things like my alignment and what sex my character was but generally things were okay.

It was a good day.

I wasn’t going to go. I had bad wibblys all day and the head poundy anxiety rageness of the last few made me afraid I would end up making a scene but I forgot how good it is just to be around people. Thank God that Neil persuaded me to go.

Tomorrow is a full day of housework and picking up drugs. I am going to take the fog with me to the doctors and then let him have a run at the park. He deserves it after all the licking of my feet he has been doing!

I hope that my good feeling will last for at least a couple of days and then I can feel accomplished.

Too tired

I have been asleep and in bed for most of yesterday and today. When not in bed I have been in the couch… So practically in bed.

I’m so tired.

Concentrating on things is hard and my brain is all over the place. I had to type that last sentence two times in order for it to make sense.

Feeling completely useless is not unusual for me but now it feels just about normal.  It’s got to the point where I am afraid to try anything in case I fail.

Of course, this just makes me angry at myself and I end up snapping at those I love. My husband forgives me, which makes me angry because he shouldn’t forgive me… And then I snap at him. Circle of stupidity.

I’m taking my antidepressants but they are not doing anything other than making me feel numb… Which makes me act stupid and over the top to try and feel something! Ridiculousness agogo!

Sigh and now I’m tired again.

A Head For Business

I am currently unemployed and on benefits. I don’t actually receive any money as I have not paid any National Insurance contributions for many years but I do get other benefits from being on them so it all works out in the end.

One of the conditions of being on Job Seekers Allowance is that you have to be ready to take job at any time and you have to be “actively seeking work”. The implications of this is that you can’t be sick. And I am.

I have several things wrong with me but one that causes me to be at odds with things is my headaches.

My headaches started on April 10th 2012. I woke up at 5:15 in the morning, having set an alarm the night before, as I was going to start a new job. I knew I had another half hour in bed so I closed my eyes and apparently drifted off. The next thing I knew my head exploded. Neil told me I was screaming as I woke up. Horrors. Except for a few days here and there, since that moment I have had a headache.

It took me a long time and many different medications but now I am at a point where, most of the time, I can function normally. I have gotten quite good at unscrunching my face, putting a smile on and pretending nothing is going on; that there isn’t a dull constant vice like grip on my brain.

My condition is called Idiopathic  Intracranial Hypertension. The spinal fluid in my head is is highly pressured and presses down on my brain giving me a myriad of symptoms similar to those of a tumour (the disease used to be called Pseudo Tumour Cerebral).

As well as the constant headache, which most days sits at a 6 or 7 on the pain scale, I have experienced (among other things) audio and visual hallucinations, double vision, an increase in clumsiness, a loss of short term memory, massive mood swings, and an inability to get my words out.

Sometimes I can’t leave the house because the pain is too much but I have to because if I don’t… Things will get really bad.

We are just about surviving on Neil’s unemployment benefit but because we live together our claims are linked so anything I do effects both of us. That money is all we have to make sure life goes on.

But I am sick and some days it’s all I can do not to vomit in pain. I have missed two appointments with sickness and cannot muss any more. It’s fair. I am supposed to be looking for work.

I have had several interviews – the last one was the day after a failed Lumbar Puncture. Sitting in that room trying to be all bright and bubbly while my body screamed was so hard but I was impressed at myself that I did it. Maybe I was too bubbly – I didn’t get the job.

I have thought about applying for Employment Support Allowance, which is the option for people who are sick, but I really do just want a job. I want to feel useful. I don’t want the IIH to rule my life. I’m hoping that I can keep up the pretence of being fine until I get job and after that keep the mask on from 9-5.

Opening Time

I believe in the internet. I believe that this is a space we can be open and honest about ourselves in a way it’s just not possible to be in ‘real life. Yes, you will always find people that will disagree with you and will want to rant and rave but here, on the Internet, you can argue, even vehemently, and still be safe from physical abuse.

In the last 24 hours the following things have happened that have really effected me:

The European elections
The #yesallwomen campaign on twitter

In the elections a large percentage of the voting electorate in this country voted for the United Kingdom Independence Party (UKIP) whose main policy is to leave the European Union and… That’s it. They’ve never really explained what happens next. Now, considering how much the EU does for us I honestly can’t understand what they are doing. When I read their website and the thin manifesto they do have it is honestly like they have written in a language only known by a small tribe found in a rainforest, or similar.

And the media has been following them with a glee we haven’t seen in UK for a long time.

However, around 5,000,000 people voted for them.

I feel sick just typing that.

I engaged with the debate on Twitter and got one of these people responding. He was polite but didn’t seem to understand what he had done or that lots of people would be pissed about it. We parted agreeing to disagree and that was the end of it.

However, after putting a similar thought on Facebook where I expect my friends to allow a discussion I am discovering that this is not possible. I have found myself crying my eyes out in the bathroom because I can’t believe the thoughts coming out of people I thought I knew. I understand now that I am not allowed to have an opinion with my “friends” and so have opted out. There will be no more opinions on anything on Facebook over seeing a film or TV show.

My granny always told me not to discuss politics or religion with friends as it causes too many problems. She was right and she would have been so disappointed in me.

We are living in scary times in this country where the lunatics are taking over the asylum and I’m not sure how to act in this society.  I can admit that I am afraid to have a thought. I can admit that I am afraid to admit who I voted for.

This leads me nicely onto the #yesallwomen campaign. This, if you don’t know, is a response to the horrific actions to a boy who, after being rejected by girls over and over, decided to pay them back by killing them. This brought the idea that women should be afraid of saying no so they don’t get killed to the fore, and the fact that women still feel afraid of being themselves in this society. Thousands upon thousands of brave women across the world added their stories of being groped, shouted at, intimated, made to feel insignificant and raped because they don’t feel they have to power to stand up and say no.

I have felt like that a lot in my life, afraid to walk down the street on my own, even in massively populated areas, because you don’t know where the next physical or emotional attack is going to come from; afraid to offer an opinion in mixed company for fear.or being dismissed because I am “just a girl”.

For God’s sake I’m not a girl, I’m 36 years old, but I still don’t feel like I can offer an opinion to a man because of the inevitable sneer.

I am married to a wonderful man who I love with every beat of my heart but I feel scared, no, terrified when I leave the house without him because I no longer have my 6’5″ shield with me. I shouldn’t have to feel like this, but I do.

I couldn’t put my fears on Twitter because I was scared to. I admire the bravery of the women who did, but I just can’t. And it pisses me off. I want to be open and honest on the Internet but I am so afraid of putting my head above the water that I can’t.

So here I am back to my blogging ways. Hoping that here I can keep myself safe whilst saying what I want (and sometimes need) to. At least here I have a modicum of control. At least here I can… Be me.

I'm not boring; I'm English