ME: “Her life has just stopped”

A translation of ME: “Mae ei bywyd hi jest wedi stopio” online at BBC Cymru fyw, 25 October 2018

Natalie Price, the girlfriend of Jonathan Vaughan, has been suffering from ME (Myalgic Encephalomyelitis) for four years. This is a condition that causes extreme fatigue, and prevents the person suffering from being able to live a normal life.

Jonathan spoke at a Senedd event on Wednesday October 24 where a movie about the condition was shown.

In his own honest words, he spoke about what it was like to live with the condition, and the effect it had on him and Natalie.

I met Natalie almost five years ago, and we got together soon after. She loved running, she became an incredible artist. She studied – just finished one grade and started on another, in dietetics.

In September 2016 she had to stop working part-time – she had been ill for about two and a half years – and in March 2017 she had to leave university, It was a very difficult decision.

In June 2018, we went to a doctor’s appointment … and that is the last time she went down the stairs. She’s been stuck in bed since.

I have to stand and watch a decisive, person who was full of life changing into someone who cannot even eat a bowl of soup now because it takes too much energy. Her life has just stopped.

I care for her full time, and also work full time. I cook, clean, wash the clothes, change the bedding, put magnesium oil on her legs, order the drugs and so on. And when she needs a shower, she sits on a chair in the bath and I wash her.

This is obviously not fun.

Told to google it…

The diagnosis took quite a long time – about two years, which is just below the average – but it was not great. We had a ‘little advice from the GP at that time, but it only took two words – “Google it”.

The doctor said there’s nothing in Wales, no expert, no one can help. So we had to go on forums and find out for ourselves.

Of course, through trying to deal with the fact that her body had failed, she became depressed. The doctor started prescribing anti-depressant tablets. The first drug exacerbated her symptoms, and she stopped getting out of the house.

The new drug she takes now affects parts of the brain that increase the sensitivity to light and sound. So being on the drugs, her ability to watch television at all has gone. Thank goodness for audio books. That’s the only thing we’ve really got left.

In terms of healthcare, we’ve not got a lot of help. We asked for her to have magnesium injections, but you cannot get these on the NHS, so I mix saline and Epsom strong salts. Natalie takes it with a nebuliser every day, for about half an hour to a hour, with a mask. And nebulisers are noisy, so this really does not help with her sensitivity to noise.

Living in a dark room

There has been a lot of research into B12 for ME patients, and almost all ME patients I have spoken to have noticed significant improvement after taking B12. In Natalie, ‘significant’ is going to the toilet twice a day instead of once, because that’s the only time she can get out of bed.

We looked into this, but Nathalie’s B12 levels were too high to get it from the doctor. So we ship it all over from Germany, and I give the injections to her. Luckily, Mum became a nurse, so she taught me how to do it.

We’ve been doing this for about five weeks, and Natalie, at last, can spend some two hours on her phone every day. This is, literally, her only window on the world – because light is  so painful for her, we’ve had to block the windows. She spends her days in a dark room.

And the sensitivity is so bad, I can not stay in the room very long. I can see my fiance for about half an hour a day. She was going to become my wife two years ago, but obviously it did not happen …

I’m proud to be Welsh and live in Wales – we look after each other here. So it’s so weird that the only advice we got with the diagnosis of ME was to “Google it”.  Help has to come from somewhere.

#TimeForUnrestWales