Saturday, 16 August 2014

Fatigue #spoonie

How to describe this fatigue?

I'll try. Without hyperbole, and as honestly as I can. These are some of the things I think and feel.

Every limb is made of solid concrete. Moving it even the smallest amount needs all my resources.

When I walk, it is through deep, cloying mud, that pulls me back and down. If I don't get out of the marsh soon, I will drown.

Sometimes I hold the sides of my head. The muscles of my neck are too tired to hold my head upright.

I lean against the sofa back and relax the muscles that have been working so hard to maintain my posture. I'm melting into the cushions. I could never move again, even if I wanted to.

I fall asleep when I want to stay awake, and stay awake when I want to sleep.

My dreams are of waking up feeling rested, just once.

My brain is stuffed with cotton wool, but not bright and white and fluffy. It's old, and grey, and congested. The spaces are half full with oily fluid that moves unpredictably, confusing my thoughts and blanking my memory.

I'm safe here, on my sofa. If the house went on fire, I would stay here. I don't have the energy to move. I'm safe here. And so tired.

Thursday, 31 July 2014

Friday, 16 May 2014

Obstructive sleep apnoea and heart problems: the missing link?

A friend of mine died a couple of years back, of heart failure. Heart problems are very common, anid have many possible causes. He also had a condition called obstructive sleep apnoea, which has long been linked with heart problems. But nobody's ever quite known why.

Obstructive sleep apnoea, or OSA, is surprisingly common, affecting almost a quarter of men and almost one in ten women. The muscles and soft tissues of the throat relax and collapse, blocking the airway wholly or partially and therefore interrupting breathing.

Now, for sleep to serve its purpose, we have to spend a certain amount of time in a state of deep sleep. Each time you have an episode of OSA, you enter lighter sleep or even wake very briefly in order to restore normal breathing. This cycle can repeat many times a night, up to once a minute in extreme cases.

These repeated sleep interruptions lead to the person with OSA feeling very tired during the day. They have no memory of the periods of breathlessness, so are often unaware that they are not sleeping properly.

Among the complications of OSA are heart problems: increased heart rate and blood pressure, and heart attack. The mechanism by which this happens has never been understood. Now a group of researchers at George Washington University in Washington DC seem to have uncovered it.

Our resting heart rate is maintained at an appropriately low level by a group of parasympathetic neurons in the brainstem. By mimicking OSA in rats, the researchers discovered that during OSA episodes the activity of these neurons is inhibited, leading to an increase in heart rate and the possibility of irregular heartbeat and high blood pressure.

It's too late for my friend David. But now researchers know where to focus their future work. They must try to restore the normal cardio-protective function of these neurons in people with OSA, to reduce the risk of cardiac problems, so that OSA no longer carries the risk of death.

Thursday, 1 May 2014

Writing semi-autobiographical fiction about disability #BADD14

This is my post for Blogging Against Disablism Day 2014.

Well. I've finally taken the leap of faith, and started writing the novel that's been tunneling out of my subconscious for the last couple of years. And they do say write about what you know. So I'm writing in the first person about a woman who develops MS.

But is writing semi-autobiographical fiction really worthwhile? And can a novel about disability be interesting to a general audience?

If my story was purely autobiographical, it would be a thinly disguised version of my own life story, with names and locations disguised. Firstly, this would certainly be excruciatingly boring for the reader. Secondly, parts of it would probably be actionable!

So what I'm doing instead is using my personal knowledge of my condition - multiple sclerosis - and how it affects me, and inventing a background, relationships, and story for my protagonist. I have access to the emotions I felt when I developed and was diagnosed with MS, and anecdotes from friends with MS of how their family, friends, and work colleagues reacted.

A novel is not just about the one central plotline, or it would be very short indeed. I can use my experience, both of disability and everyday life, as inspiration for plot points and to help me understand my characters' emotions. So, for instance, a real-life neighbour who takes her ferret for a walk every day in an animal carrier will be making an appearance, along with her pet.

Real life isn't connected. Random things happen at random times. Wild coincidences take us by surprise, that we wouldn't believe for a second in fiction. In a novel, however much it draws on your own life, you have to order and arrange your material to make some sort of coherent narrative .

In the end, as Tom Clancy said:

The difference between fiction and reality is that fiction has to make sense.
Do novels about disability have to be serious? Not in the least. You can see humour in any situation. My heroine is a strong, funny woman. Yes, being diagnosed with MS is a major, serious life event. But looking back on it, the process is full of humorous moments. If I can see that, so can she. Real life isn't always funny at the time. But a book can be.

And who knows? Perhaps if I can make it funny and accessible (and anyone wants to read it anyway!) it'll get over a bit of information about disability in general and MS in particular along the way. Which would be no bad thing, right? The more people know, the less stigma and disablism we'll hopefully all encounter.

So. If there's anything you think from your own experience I should try to include, please let me know in the comments. Otherwise, I'll keep you updated as much as I can. And rest assured, once it's finished I'll pimp it to death!

Tuesday, 25 February 2014

Connor Sparrowhawk: Death by Indifference

Connor Sparrowhawk was 18 years old. He was loving and much loved. He had learning difficulties, autism and epilepsy.

And he died in the bath at Slade House, an NHS assessment and treatment centre, because he was left unsupervised.

The report from a CQC inspection carried out three months after Connor's death failed the unit on a number of standards, including patient safety. Now the independent report into his death has confirmed that his death was completely preventable.

The NHS Trust concerned have listed actions they will take as a result. There's no question that giving staff training about epilepsy, auditing care plans, and so on are good things to do. But why has it taken the death of a young man to prompt what would seem to be the obvious? This was a specialist unit for people with learning disabilities, and half of those with learning disabilities also have epilepsy.

And the report shows so much passing of bucks and refusal to accept responsibility, it's unbelievable. No risk assessment of Connor's bathing arrangements. No review of his epilepsy when he entered the unit, or after it was suspected he'd had a seizure. Not all relevant staff were trained in life support. No record of the agreed observation actually happening while Connor was bathing.

Nothing will replace Connor. But it's to be hoped, at least, that this damning report will stop another family being blighted in the same way.

There's only one way to end this post, and that's by showing you Connor - Laughing Boy - as he grew up. Happy. Alive.


Friday, 21 February 2014

Multiple sclerosis and depression

We all feel down sometimes. That's natural, and part of life's rich tapestry.

But sometimes, for some of us, that short-term feeling turns into something much longer-lasting and more profound. Clinical depression can involve feelings of sadness and hopelessness, irritability, losing interest in activities, loss of ability to concentrate of make decisions, tearfulness, tiredness, sleep disturbances, and physical aches and pains. It is often linked with anxiety.


Each year, around 6% of the UK population have an episode of depression, and more than 15% will have an episode during their lifestime.Having a long-term physical illness increases your risk of depression up to about one in three, and NICE have recently issued guidelines for this situation.

Multiple sclerosis, being a long-term condition, follows this pattern. Up to 50% of people with MS experience depression at some point in their lives, and around 20% within each year. People with MS are at 7.5 times the risk of suicide of the general population.. There are several reasons for this:

  • To have MS is to be in a state of uncertainty. Your life has changed completely. You have a long-term condition with a variable course, which could potentially progress to severe disability. Your self-image changes: you fear losing independence, you may lose your job or friendships.
  • Depression can also be caused by MS's physical changes to the brain. If it damages the parts of the brain that control mood and emotional expression, behavioural changes can result, including depression.
  • MS can also affect the immune and neuroendocrine systems. For instance, studies have found changes in immune markers in people with MS who are depressed.
  • Depression can be a side-effect of certain drugs, such as the corticosteroids often prescribed for MS relapses.
There is some evidence that depression is (not surprisingly) more common around the time of a relapse, but people with more severe physical disability are not more likely to be depressed. Nor is it related to how long you've had MS.

There is no shame in having depression. It's a disabling condition just as much as a broken leg, heart disease - or, indeed, MS. It's important that we learn to recognise its onset in ourselves, and seek help. It doesn't mean weakness or need to be hidden. I see my depression as a long-term condition to be managed, like my MS.

Treatments for depression can be very effective. If you think you may be depressed, please visit your doctor and explain how you feel. If you are suicidal, contact the Samaritans.

So, if you have MS, it's entirely possible that you also have depression. Clearly not an ideal situation, but entirely treatable and manageable. As I said: all part of life's rich tapestry!