About a year ago I got to the point where I decided that I needed somewhere to go to work through all the changes that having MECFS has brought to my life.
Hmmm. Beginning to write this, I don’t know how best to explain this without giving the impression that MECFS might be a Psychiatric problem.
God, I feel like I’m opening up a can of worms even by saying that! Please don’t bombard me with comments – I’m well aware of the history for people with MECFS and I’m on your side. 😉
The problem with NHS treatment for MECFS
People with MECFS have battled long and hard against the prevailing treatment programmes which are offered in the NHS.
This treatment has a philosophy. Basically it says that the reason why someone with ME gets ill in the first place is biological, but the reason why they remain ill is social / psychological.
So the treatment aims to increase someone’s ability to exercise through making them exercise no matter how ill they are feeling and how bad it makes them feel afterwards.
It also challenges their thinking that is supposedly stopping them recovering through using Cognitive Behavioural Therapy.
The entire premise is that it’s something the CFSME patient that is doing wrong that is perpetuating the symptoms of the disease, not the other way around. The treatment hasn’t moved on despite so much research that shows what’s going on biologically with people for CFSME so it’s a very sensitive subject.
Imagine you have another life changing illness and the treatment that is offered to you says:
“OK we’re going to get you doing something that will make you much worse and ignore or dismiss your symptoms that contradict this treatment. Then, if you tell us you are feeling worse because of doing it, we’ll work on adjusting your attitude, not us re-thinking how we are treating you. We’ll also not change our treatment because the NHS won’t let us.”
MECFS is a biological illness which impacts on people’s emotions as well as their physical health in so, so, SO many ways.
I think it’s because ME is neurological and it affects many bodily systems and that includes the brain.
My god, I’m back pedalling again – I’ve got a PG in Psychology and have worked in health services I know that MECFS is NOT an illness with a psychiatric origin!
The reason why I am so adamant about that isn’t because I have a prejudice myself against illnesses of psychiatric origin, it’s because the diagnosis of MECFS being psychiatric or psychological is WRONG. Therefore hundreds and hundreds and hundreds of people are being treated with the WRONG treatment that can cause considerable harm.
I need help
But that doesn’t mean to say that I don’t need emotional help. I do need help because there is no cure for this illness, no pill I can take to make it better. I’ve simply got to learn about it and learn to live with it. I’m on my own with it, you see.
Since I’ve been ill it has run through my life like an earthquake and so much of my life and parts of me have disappeared down the fissures and cracks. It’s so much to cope with in a short length of time – I’ve had long dark nights of the soul and difficulties as well as losses. So have many people who have ME.
A friend on Twitter has written about coping with this and published a free guide to coping with the loss of self and functioning with MECFS Here it is. **
A year ago I decided I’d find some support through counselling. I found her through a directory of local services. I’ve got a nickname for my Counseller; Crystal is named after the 1970s children’s TV programme Crystal Tipps and Alasdair – she’s got a cloud of curly hair that surrounds her face like Crystal Tipps has.
Lack of access to mental health services in the NHS
I pay for my sessions with her out of my ESA, before you are wondering whether she’s on the NHS too. No, she’s not.
I tried to get an appointment with the local psychological services via my GP but there’s such a high demand that I’d need to wait at least 6 months for an assessment. I didn’t have time to wait that long and then again have to wait for an opening in someone’s diary. I needed help quickly.
I was really struggling on the inside and on the outside.
How it helps
Since I’ve been seeing Crystal she’s gently helped me look at what things are going on in my life that make my health worse and help me grow the tools to cope with it.
For instance she quietly reflects how I’m feeling. This cuts through the brain fog I have and means someone else is remembering things I find hard to remember and helping me find links between things I’m doing and feeling worse, or feeling better.
It isn’t like lying down on a couch with a person behind me with a notebook taking down notes and responding with: “Ah ha, and how do you feel about that?” like there is in the movies.
It’s more like a confidential conversation in a quiet space and unlike CBT, doesn’t come with a premise that I must be thinking about things in the wrong way.
Crystal’s never suggested for a moment that my symptoms aren’t real or challenged what I’m experiencing in the way people I’ve met in the CFSME services have.
There’s no patter about: “This is the course of treatment that will make you better,” either. I’ve been so pissed off with the NHS ME services for this crap. Do they say it so often to patients to persuade themselves that it’s true, or something, because it didn’t convince me.
Crystal says things that I need to hear to keep me on a path to wellness.
When she says: “You know, you have a lot to deal with, you are doing well – do you think all your good progress will be helped by you doing X, Y or Z?” it is a subtle question, designed to make me think through something in a gentle way.
It’s a positive way of helping me remember whether I am keeping my good health in mind when life gets in the way.
It’s also the only ongoing treatment I am having for the ME. My GP doesn’t help, the ME services are antithetical to what I need, the charities don’t offer treatment. It’s the only active thing I can do to help me and I do find it supportive and healing – it’s my quiet lifeline.
Paying for it
Crystal operates a sliding scale of charges and because I’m on ESA I pay the lowest fee going at £10.00 per session. As I see her every week, that’s £40.00 out of my ESA every month. If I could get NHS treatment, it would be free. But no – it’s not available.
Inside the cab
On the way back yesterday I was walking down a main road near to where I live. The traffic was shooting past and I heard the ‘put-put-put’ of a cab’s diesel engine draw closer and closer on the road behind me.
It stopped in the line directly next to me, as if it were waiting for me to jump in.
As I looked to my right into the cab I saw that the occupant was a young man in a wheelchair. He was moving and shaking in his chair and there was someone else in there too. The cab stopped a little way up the road and I watched both people get out of the side door.
The woman grabbed the chair and got it onto the pavement. Then it did a 3 point turn and she wheeled the guy up to and then inside a house through a front door.
The cab closed it’s door and drove off.
I wasn’t staring – honestly – but it made me think about ESA and Disability Living Allowance and all the welfare benefits that people who have long term health conditions rely on to survive. I know this might sound odd but I’ve never considered catching a cab anywhere, it seems so expensive.
However for this man his benefits enable him to travel in a way that is safe. It’s his precious welfare benefits that pay for this. Benefits that might be cut in the welfare reforms that are promised.
Consider for a moment what will happen to him if he can’t afford a cab…..
Cut Price Oyster Card Cost
As I explained in this post, my half price Oyster card was, in fact, out of date. My bus fare to see Crystal cost me full price fare – £2.20. I HAVE to update my card and fill in a new form and that means buying new passport photos. I saw my ESA trickling through my fingers as I got the photos done.
£5.00 on photos, £10.00 on counselling, £2.2o on the bus fare, £3.00 on a toothbrush this week too. Every day I have to juggle what I’m spending with what I’ve got in my bank account.
I checked when I got back. I’ve now got £27.50 to last until next Thursday, my next ESA payment.
I am now having to consider how I feed myself this week.
© Lindy 2015
** link is not an endorsement.