Nexus Supports… CFS/ME // Post 2 //

So a little while ago, I put a post up in support of ME awareness week, which can be read here which details my own personal struggles with CFSNexus Awareness – CFS/ME Awareness Week.

It’s been a long time since that post, and I always intended to do a follow up when I felt that I was ready and that I had taken significant steps in one direction or the other. This, I hope, will afford anyone who wishes to read these posts about my personal trials with CFS a little hope that they are not alone.

I still do not find it easy to relay how I feel since being diagnosed with CFS and my body shutting down due to this. Nor am I easily placed to advise others of what can be done to improve themselves. I feel that time has afforded me a large percentage of my recovery, as I feel like I am improving very, very slowly. I still have bad days, it was only last week that for two days I struggled to get out of bed until late afternoon, this follows my best nights sleep the two days before an generally feeling on top of the world.

It’s something so surreal and strange to have, to battle with something that can make you feel like you question if you have CFS or not, due to feeling that good. And then, within 24 hours being left with a sharp reminder that this “thing” really does exist. And that’s what it feels like, it feels like a “thing”. It’s the only way I know how to describe it. It can be a shadow that looms over you, a rope that holds you back or an obstacle that you feel you can’t overcome.

And it isn’t like me to be this open about how I feel, it’s something which I struggle with. I struggle to just admit that it is okay to just not be okay. Despite being someone who is able to advise this to others and happily take on the feelings of people who seem to be suffering. I think it’s what makes CFS so unique, that you struggle to know how to feel yourself, whilst being overly aware towards the sensitivity of others.

My thoughts are often racing, and whilst you may be sat there thinking that this is normal, it can assure you that I have never been quite as good at thinking myself into a hole, as I am now with CFS.

It’s something which is so difficult to explain to someone in terms of what it is that I feel because it all stems from if you have an understanding of what my worst day is. Even then, I would have an understanding of what your worst day is to even meet in the middle in the first place on my feelings. You won’t find it come up on a scan, you won’t find it in blood, you won’t see it on X-RAYS. But where you will see it is on my face, when I’m unable to move or I lose colour or the times I’ve been upset to have to accept that some days I just can’t fight back. And every day is a fight to be who I want to be, to be the very person that I have spent 26 years trying to be.

Debilitating would be the right word I think. And that’s not to exclude limiting, life-changing, painful, scary, confused, lost and a lot of other descriptive terms that I’m sure as a community of CFS sufferers we would muster between us.

One of my most “hard-hitting” moments was recently for my birthday, that I couldn’t even have my birthday to feel good. I had to sleep with an ice pack on my neck for my chronic neck and back pain, whilst being dosed up on tablets and sleeping my day away. And this isn’t me saying I have it the worst, or to provide a sob story or anything like this. It’s to provide a perspective that I struggle, in my own way I consider it to be the worst I could be, but I know others have it even worse than myself.

Recently though, I managed to stumble across a product which I feel has at least helped to take the edge off of my pain, ease my mind and slow things down enough to help me turn the focus back onto me. Which makes a nice change from my mind racing one million miles an hour.

I have begun to turn towards the much-discussed use of CBD oil in my search for pain relief and ways to help CFS.

Now what is important to take form this before I start is that this isn’t a miracle oil, I won’t have you feeling like you’re 18 again and running through fields of wheat (I see you Theresa May), but what it will do is help in a multitude of areas of contributing factors that are associated with CFS.

So to begin with, I don’t smoke, and I never have. But I have done a lot of research on CBD oil and taken a look at accounts, videos and reports from people who suffer in some way with associated issues that can arise with CFS. Chronic pain, anxiety, sleeping, people who have fits, poor eating habits, over thinking and many, many more.

For those who may not know, CBD (cannabidiol) is one of two active ingredients that are found in cannabis. The term “cannabis oil” is being referred to a lot more extensively in modern times, with the term referring to the CBD ingredient, rather than the other ingredient, THC (tetrahydrocannabinol) which is the psychoactive substance that gives cannabis users a high, and unlike cannabis, it is legal in the UK (source, NHS UK).

That being said, these two ingredients are already used medicinally, THC and CBD are the active ingredients of a prescription drug called Sativex. This is used to relieve the pain of muscle spasms in multiple sclerosis.

So, for this reason, I have begun vaping CBD E-Liquid. Yes, I am one of those people now who looks like a dragon out of Game of Thrones. I have also tried under the tongue CDB oil which was mixed with hemp oil, and it didn’t seem to do for me what vaping it currently does. This doesn’t mean that you shouldn’t use under the tongue CBD oil, in fact, I highly recommend it as a starting point. If you suffer from chronic pain, I would probably start at 10mg and then go from there.

I will keep you updated on my journey with CBD oil, I do not want to put across the message that this is some sort of miracle treatment. It helps a lot of people, it HAS and DOES help me, but as with all medicinal products, the effects are not always universal.

I think that just about does it for today’s article. It does feel good to get this off of my chest every now and then and feel that it may just benefit someone being this open. It definately helps me, so thank you for reading and I will be sure to update again in the coming months!

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