Tuesday, 25 February 2014
I never took drugs before my diagnosis of motor neurone disease, not prescription ones anyway. Doctors don't really want to prescribe from my experience. 'Have paracetamol' is the usual response for everything.
Not when you're diagnosed with a terminal illness. A plethora of drugs are pushed on you, antidepressants, sleeping pills, valium, strong painkillers and I even had morphine pills. I'm currently going cold turkey on an antidepressant and feel like death. Headaches, nausea and general fog. Difficult to function feeling so odd and I'm wondering whether it's worth it.
I wasn't depressed. My weight was critically low and it was a choice between a feeding tube or the antidepressant, Mirtazapine, which makes you munch. I knew that I had to do something and chose Mirtazapine.
I'm quite sure that this drug saved my life after diagnosis. I was very depressed and didn't want to live. I didn't want to take it either, having pre-conceptions about 'happy pills'. I'd never experienced depression before and it's totally debilitating and scary. Combined with sleeping pills, it got me back on track. I tried to stop taking sleeping pills too but kept waking up and felt exhausted during the day. I love my sleeping pills.
I think I'm trying to say that whatever gets you through the night is alright. Or the day. Motor neurone disease constantly throws up new problems, even after 14 years. There will be new drugs to experiment with, undoubtedly.
Normal service will be resumed in a few days...
Saturday, 15 February 2014
The image above isn't pleasant. Living with motor neurone disease (MND) isn't either, but after 14 years I am used to my condition. I no longer feel disabled, I work voluntarily for two charities and I know that I work well. I have been bringing up two children on my own since 2003 and they are now kind, thoughtful teenagers. I'm an empowered patient and manage my condition very well, with the help of my hospice doctor. MND forced me to become an employer and I manage a payroll for five carers. Coordinating care isn't always easy but I do it because I want to choose who works with me. I run my home alone, pay bills and have bank accounts like everyone else. I use Tobii eyegaze technology to do most things online and I love being independent.
I'm not saying all of the above to blow my own trumpet or to boast. I'm saying it because, every now and then, a situation occurs that makes me feel like the woman in the photo. Yesterday was one such occasion.
I opened a letter on Thursday evening from the HMRC about my tax credits. The letter said that they suspect that I'm living with a partner but that I've claimed tax credits as a single person. They asked me to send them a stack of original documents within two weeks. I knew that I had to phone them and from past experience, knew that this would be a problem. Increasingly, we are expected to listen to computerised voices when we call government departments and big organisations nowadays. The problem is that the staff at these places are not prepared to speak to someone using a computer as their voice.
My voice is unintelligible to most people. I've accepted it. I have eyegaze computers with wonderful, loud, clear voices and I love using them. The woman at the HMRC spoke to my son first, who explained that I could talk to her with my computer. She didn't say OK and continued to ask him security questions. She found out that their letter was sent to me by mistake. Before hanging up she advised me to appoint someone to speak to them in future. I told her with my computer voice 'I do everything myself'.
Last year I tried to transfer a balance from one credit card to another. There was something wrong with the online banking system so I had to go to my local branch. The staff know me well and phoned the credit card section. No one there would do the transaction because I couldn't speak to them on the phone. Six months later I received a letter saying that my credit card won't be renewed.
Every year the DWP ask me to send my bank statements in. I sent them twice and finally by recorded delivery because they kept requesting them. I had the tracking number and my carer phoned to give it to them. They wouldn't speak to her and aggressively told her that I must appoint someone, not only to speak on my behalf but to receive my income support. How can I pay my bills if someone else receives my money? They sent an appointee form but I threw it away, hoping that when I have to phone them again I'll get a more compassionate person...
Tuesday, 11 February 2014
Here is my talk and some photos from Rewired:
Hello everyone, it’s great to see you and to be here!
I’m pleased to finally have the technology to speak to you, after a long wait for funding.
You’ve heard the bad stuff about motor neurone disease so I’m not going to talk about that.
I will say that I have survived for 14 years, the official prognosis being 2 to 5 years, so I feel very fortunate.
People often ask me how I cope and lead such an active and happy life.
I only have a few minutes so I’ll try and fit everything in!
To start with, having good assistive technology is essential.
If you can’t speak or move, being able to communicate prevents feelings of isolation and helplessness.
I use Tobii eyegaze technology which has also enabled me to create again, and you can see some of my work on the screen.
Creative expression is so fulfilling and everyone should have that capability now that the technology is available.
Exercise, good nutrition and quality sleep is not only a must have for people with neurological conditions, but for everyone.
I look back and wish that I had been kinder to my body instead of partying hard.
Immersing myself in work that I’m passionate about stops me from dwelling on my illness and keeps me in the moment.
I particularly love my work with Movement for Hope because this charity has such energy.
We are not only raising awareness of neurological conditions in the UK, but globally.
I’ve always believed that awareness leads to treatments and cures.
Someone with Parkinson’s recently said that compared to my illness, her’s is a walk in the park.
Not so, I protested, every condition is equal and relative.
It’s vital to see the bigger picture and that is what Movement for Hope does.
Thanks very much for listening and for your support!