I have found myself having a lot of conversations with my parents recently about when I first became ill. I don’t remember most of it, I think it was such a horrible time my brain has wiped a lot of the information and memories. But I feel naturally alot of our conversations have drifted into why they chose to go down an alternative route and how they made those difficult decisions, how it felt to have a very poorly child and how they dealt with that.
For those who don’t know I became very very poorly aged 13 – up until then I was a pretty normal child, I was very bright, sociable and ‘normal’ I guess. Until I got a virus and basically never got better, a once happy child was confined to bed most of the day, in a wheelchair for part of the time and couldn’t attend school, my dad had to carry me up and down stairs and I couldn’t even dress myself.
*By the way of a disclaimer I want to note here, I think the NHS is great* – But the problem is it was set up for broken bones and to have babies, the NHS wasn’t set up to deal with the complex illnesses a lot of people in the UK now suffer with in the 21st century. Alot of which I believe is down to our lifestyle and environments (but thats for another day).
In the beginning of my illness the NHS did all the necessary testing obviously they eradicated any more sinister problems for my symptoms and pulled me into hospital, sent me to a psychologist (was I just faking it), a pyhsio (was I really as weak as I was saying I was), ‘hospital school’ (was I able to study), they sent me to multiple specialists in the North West, but they just could not figure out what was wrong with me. After 6 months of this (which is pretty standard protocol) they labelled me with ME/CFS (Chronic Fatigue Syndrome).
Now here is the big point… what is CFS? Seriously? Diabetes is a problem (in an incredibly simplistic form) with blood sugar and insulin. Heart disease is a heart issue but chronic fatigue? It is merely a label. It doesn’t mean anything. Because what is the cause of the fatigue? Why has a 13 year olds body just shut down? What is the root cause? And unfortunately the NHS does not have the funding to get to the root cause of this issue and they can’t help everyone.
Currently the protocol on the NHS is, if someone has CFS he/she is offered graded exercise (GET) or cognitive behavioural therapy (CBT) – both good options which are really helpful but they aren’t going to do that much if your root cause is your digestion and you aren’t absorbing any food. Or your adrenals are exhausted so you have no stress hormones or adrenaline, or your body is so toxic it can’t function optimally. Do you see where this is going?
I remember in my teens going every 6 months to the CFS clinic, I used to beg my mum to not send me because every time they would say “keep doing what your doing and come back in 6 months” – what was I doing? Nothing. I wasn’t doing anything to help because I didn’t know what could help. I was lying on a sofa in my house, not at school, crying most of the day, a very very lonely, sad teenage girl. With no answers.
My parents did a lot of soul searching and decided to find someone who can help in an alternative way. They had to pay. But they decided they would do what it took to get me better even if it meant paying with their own money. Yes the NHS is free at the point of access and yes it is amazing and yes they save lives but… they can’t help everyone. And when you have a complex illness we sometimes have to look elsewhere for answers if we are determined and committed to recovery.
When I started working on my health outside of the NHS I started to find the root cause, I had a lot a lot alot of different things going on. But I also had Lyme Disease, an infection in my blood. Boom... that was the main root cause. You see someone can have severe fatigue but why? We have to ask why… and when you work on that then there is no reason why we can’t fully recover.
There is a financial cost but even now, I will go without other things to make sure I can pay for my supplements and to ensure I have a lifestyle where I stay well. I eat good food, I do spend alot on food but it keeps me well. I have adapted my lifestyle to spend less on other things and I spend alot on the things I know help me and keep me well.
I really don’t want this to be a post on being negative about our NHS, as I said they are amazing. They save lives and we are so fortunate to have the NHS in this country. What I am saying is if you are suffering with chronic illness, maybe it is time to look elsewhere if you are passionate to get better. Do your research, there is alot of free information out there. Do some soul searching. Ask for help. Acknowledge they can’t help everyone but you are going to recover and take control and today is day one…
The China Study by Colin Campbell
Why Cant I Get Better by Richard Horowitz