Broken thoughts

Brain not working.
Stressed. Worried. Don’t know why.
Can’t cope with anything. Anything at all.
Give up. Go to make coffee.
Coffee powder, coffee press. Wait for kettle.
Thinking.

“Kill yourself.”

Tiny words, hit me hard.
Stagger. Grab work surface to stay upright.

“KILL YOURSELF.”

NO!

Panic. Start to fall. Grab hold.
Hyperventilate. Tears. Can’t see, can’t think.

Time passes. Tears fall.

Legs hurt. Arms hurt. Still unsteady.
Frozen thoughts. Fear. Can’t break out.
Focus. Coffee.

Pause.

Pour the kettle. Make the coffee. Not thinking. Mustn’t think.
Mug, stick; stagger to bedroom.
Bed. Duvet. Hide.

Hide.

Mental illness is more disabling to me than physical illness

I have reached the point where mental illness is more disabling to me than physical illness. Before I became depressed I was physically ill with ME, diabetes and migraines and I was limited by fatigue and pain but I could write, I could repair computers, and I could focus to read or watch TV, as long as I planned around my illness. With regular rests and flexible timing I could engage with the world and get some things done. Now, though, depression and anxiety steal my focus for hours at a time and prevent me from completing even the simplest task. I start writing blog posts and manage one line. I start watching TV and manage 2 minutes of a half hour episode. I start games then give up. I drive to shops or friends and then can’t get out of the car. I look at my forms for help with power wheelchair costs and freeze up. The phone rings and I pull the duvet over my head.

My physical and mental illness seem to feed off each other too. If I reach a point of (even more than normal) exhaustion then I will also become overtaken by despair. Depression and anxiety also make it impossible to work towards improving my physical health. I need to get a routine and start pacing my activity but mental health problems mean that I can’t even think about doing things when I need to.

I’m not sure that I have a point in this blog post other than wanting to rant a bit. I suppose if anything my point is that depression is not some minor inconvenience. It is a real, crippling illness that will destroy a life just as effectively as any physical problem.

Not much going on

It is now over a month since I last wrote anything on this blog. I’m used to writing weekly or even daily but my mind has just not been up to writing anything. I have still had discussions and come across ideas that make me want to write, but actually converting those thoughts into written words has been beyond me. In fact just about every task has been beyond me recently. I have always had a problem with completing tasks but with this depression I haven’t been able to even start most tasks. Asking me to do something is a guarantee that I won’t be able to.

The problem is that at the moment I don’t have any of my illnesses under control. My sleeping pattern is basically nocturnal, and adding on the extra hours that I need to get from waking up to actually moving I have been getting out of bed between about 3 and 5pm each day. My fatigue is generally worse when I’m awake, as is the drowsiness, and hours out of bed are very limited. My blood sugar is out of control whether I eat sensibly or not and most of the time I’m not eating sensibly because the more depressed I am the more rubbish I eat. And the depression. That’s pretty much back to crippling again. Can’t face anything, don’t want to talk to anyone, bouts of despair and thoughts of dying.

I have managed occasional distractions. I went to a party in London a few weeks ago. I visited family to help with their new house. I went out for the day last Saturday and helped buy a laptop. I have driven to the shops and back. Even so, most of my time has been spent drowsy or asleep and not doing very much.

I know what I need to do. I need to start pacing, plan activity, and control my diet. The problem is, I can’t face doing that.

Back to sleep then.

Computer game teaches depression management techniques

SPARX characters

A study carried out by the University of Auckland in New Zealand has found that using a computer game which teaches depression management techniques based on Cognitive Behavioural Therapy can reduce depression in teenagers more effectively than conventional treatment.

The game was developed by Metia Interactive under the direction of The Werry Centre for Child and Adolescent Mental Health at The University of Auckland and a number of actors, musicians and artists donated their skills to help create the game.

This video explains the thinking behind the game.

SPARX trailer

You can read the results of the study at the BMJ: SPARX study results

The abstract gives us this information:

Objective To evaluate whether a new computerised cognitive behavioural therapy intervention (SPARX, Smart, Positive, Active, Realistic, X-factor thoughts) could reduce depressive symptoms in help seeking adolescents as much or more than treatment as usual.

Interventions Computerised cognitive behavioural therapy (SPARX) comprising seven modules delivered over a period of between four and seven weeks, versus treatment as usual comprising primarily face to face counselling delivered by trained counsellors and clinical psychologists.

Conclusions SPARX is a potential alternative to usual care for adolescents presenting with depressive symptoms in primary care settings and could be used to address some of the unmet demand for treatment.

Although this treatment has only been tested in teenagers I think that is only because that is the focus of the centre where it was developed. Computer gaming is popular in a far wider age range than just teenagers. I hope that this kind of treatment could be used to treat adults too, not least because I think that I would gain much more from this method myself than I have from the conventional CBT that I have been treated with so far.

SPARX is intended to be available to the public soon, although no information is given as to whether there will be a charge for the game.

Read more at the SPARX web site

Project details: SPARX - Gaming helps fight depression

Press release: E-therapy effective in combatting youth depression

BMJ: SPARX study results

 

How am I? A personal update

Sometimes it’s easy to forget that this is my personal blog. I have written so much recently about workfare, welfare reform and politics that I haven’t had time to write about anything outside of those. I have always found it useful to write down what I have been going through, to help get my own thoughts in order and so this is one of those blog posts.

A handful of pillsIn the last few weeks I have been trying reboxetine in addition to the escitalopram I was already taking to try to reduce my panic attacks and anxiety. Two days after I started taking reboxetine I spent a day in the worst depression that I have had for a few months and was suicidal as well as being really really horrible to my wife. This is always a possible temporary side effect with a new anti-depressant and fortunately I was much better after that. The new medication did seem to be working for a couple of weeks but in the last week I have had two big meltdowns, panic attacks leading into spiralling depression again.

Since referal to a psychologist seems to be rare and slow in my area, last week I started to attend a cognitive behavioural therapy group which I have been waiting to start for a few months. CBT (and I may be wrong here) appears to be a way to learn to see and understand the problematic thoughts and moods, and then provides a method of changing them. CBT is currently the most popular therapy for depression and anxiety. It isn’t without problems, and it isn’t for everyone. One person said to me today that CBT is “feels like brainwashing” and I think he is right, but it is self-brainwashing.

CBT has a bad reputation among patients with M.E. because many psychiatrists believe that M.E. is a somataform disorder - that is, they believe that M.E. is a set of physical symptoms caused by mental illness. Now this isn’t impossible in some cases, although I think in most cases it is unlikely given that people with M.E. can often overdo things on a good mental health day and still find themselves stuck in bed for days recovering from their exertion. More common is that depression arrives after and as a result of becoming sick with M.E. Anyway, since M.E. is a physical neurological illness which can be partly controlled by pacing and learning when to stop, the common fear is that CBT teaches M.E. patients to push themselves too far and end up enduring serious health repercussions. This bad reputation of CBT for people with M.E. is the reason why I changed my psychiatrist and checked that the CBT group wouldn’t attempt to interfere with my M.E.

Although this group is officially a CBT group it seems to be more than that. We will be taught how to use CBT and Mindfullness, and we are working through a book called Mind Over Mood. (Affiliate link.) We are being taught some helpful things alongside that too. The group meets for two hours per week over twelve weeks and there are six of us, plus a psychologist and a community nurse. Group therapy provides the chance for us to support each other too and I have already found this useful in the first two sessions. While Twitter has been a lifeline by allowing me to be in contact with a lot of people in similar situations it is nice to discuss these things in person. (And I might be dragging some of these people on to Twitter!)

Apart from the depression and anxiety taking a turn for the worse again my M.E. has been significantly worse for a while. I currently can’t walk very far at all and have had to use my wheelchair a lot when going out as well as rely on my dad to drive me to medical appointments. I have been stuck in bed for the majority of most days because sitting in a chair is extremely draining. Unfortunately the two hours I have to spend at each CBT group session is very draining and I have had a lot of pain since yesterday’s session.

So things aren’t so great at the moment. Despite that, I am looking forward to going to QEDCon next week and then spending a week staying with my sister. When I get back I hope to collect my new car which I hope will allow me to leave the house a bit more often. I will finally be able to stop relying on my dad to drive me around and I also intend to start going swimming when I can drive myself to the pool, and to take a few trips to meet friends around the country. I just need to build up some strength for that one.

Despair

Don’t read this if you want any hope. I haven’t got any.

Today has seen two articles that have all but destroyed my fight. First, in the Sun -

‘Pretend disabled’ really ARE sick

MY New Year’s resolution for 2012 was to become disabled.

Nothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades — fibromyalgia, or M.E.

The article starts by claiming the the illness which has crippled me and destroyed my life is “one of those newly invented illness which make you a bit peaky for decades”. A bit peaky. Try unable to get out of bed for months at a time, screaming in pain, aching, burning pain, curled up in a ball sobbing from the agony and wishing for death. Hardly leaving the house except to visit the doctor to try another dead end drug because nothing helps really but you have to try. Using a wheelchair when you do go out because you can’t walk. A bit peaky. Right.

Then it claims that you can make lots of money from being ill, that you can park anywhere, that claiming benefits has become easier, and that 80% of people claiming sickness benefits are fit to work. All the usual stuff wheeled out to attack sick and disabled people, with the usual caveat that he doesn’t mean the genuine ones, while asserting that most aren’t genuine.

That was all soul-destroying enough but then a few hours later the Telegraph joined in, ostensibly in response to the complaints about the article in the Sun, but going on to make a far worse attack.

The fake disabled are crippling our economy

There really are far, far too many people sponging off the taxpayer right now with their fake or exaggerated disabilities and they’re one of the reasons we’re in the financial mess we’re in.

And there you have it. Not only am I either faking to get money or just a bit peaky, but I’m also responsible for the financial mess.

So I’ve run out of hope. I can’t take these attacks anymore. These are viscious, uncaring, downright evil attacks on my friends and I and I don’t want to deal with them or their fallout any more. I know this is my depression, but tears and sobbing and despair are the same anyway. I’ve come very close to ending it all in the last hour. Add in the Welfare Reform Bill being rushed through the third reading and the house of commons again next week and I don’t see what is left to hope for.

— EDIT —

Thanks to some very lovely friends and the power of Skype I am not suicidal at this point and have even managed a couple of smiles. Until next time.

What are you afraid of?

Sitting at my computer - chatting, using twitter, writing a blog post. Then suddenly it happens. A surge of fear. Heart thumping, pulse racing.

What are you afraid of?

I stop typing and sit back. Try to be calm. Think. What caused that? Why am I panicking? I don’t understand it.

What are you afraid of?

In my panic I stand up. Adrenaline strengthens my normally wobbly walking. I walk through the house. Remember that no one else is here. Then for no reason that I can think of I wonder where the cat is. She’s not on the bed, or the sofa. I stumble through the house, wobbly now, adrenaline or not. I don’t know what to do.

What are you afraid of?

I crash back into the living room. I find the cat sleeping on the floor next to the sofa. Relieved to find any living thing in the house, I fall down beside her. She glares at me.

What are you afraid of?

I put an arm around the cat, and my head on the floor. I close my eyes. My pulse is racing. Thumping. My head hurts. All the aching muscles that I had been resting after too much activity in the last few days are aching again. I reach for my phone, for twitter. Call out to anyone who is there. Friends are there. They are lovely, talking to me, helping me to calm down. The cat purrs a little, perhaps sensing my distress.

What are you afraid of?

Time passes. The floor is hard. The cat finishes purring and wanders off. I should move, but panic has left me exhausted. I have no energy.

What are you afraid of?

There is a fluffy polar bear behind me. I more to put my head on it. I lie there helpless.

What are you afraid of?

Then, at last, I hear a key in the door. Footsteps. A voice calls out.

Then help to sit on the sofa. Hugs. A cup of tea.

Feeling stupid, foolish.

What are you afraid of? I only wish that I knew.

Useless

I don’t work any more. I can’t, even my self-employed efforts didn’t work out. I’m 33 years old. I’m supposed to be able to earn a living, to look after myself, to contribute to society. Instead I’m so sick that even Atos accepted that I can’t work and they put me in the ESA support group. Between the M.E. and the depression I’m stuck in the house nearly all of the time except when I am driven to a medical appointment or my parents house. I spend huge amounts of time in bed, except when everyone else is asleep, at which point I can’t sleep but I can often move around. The highlight of my day is complaining about politicians on twitter. If I’m doing really well I might even manage to write a blog post and have it read by a couple of hundred people. Big deal.

My purpose in life is to play computer games and whine on the internet. I’m useless.

 

Stop it

Fear
Despair
Crowding through my broken brain,
pushing and shoving the good thoughts away.

“Stop it!” I shout,
but I take no notice of myself.

Thoughts gone,
pushed out by gloom.
Body frozen in place
Cowering from the onslaught of worries.

The unpaid bills
the diabetes that just gets worse
the fear of benefits being refused
All giants advancing on me
ten feet tall, now a hundred.
Run! Except I can’t.

My body gives in, moving at a glacial pace
and hides, in the only place that seems safe.
In bed, curled up under the duvet
shaking
sobbing.

I want it to stop
I want to sleep and never wake up
Desperate to leave this all behind
but sleep never comes.

And so I lay here
Mind broken
Hoping for oblivion to take me away.