I thought I would start writing more about being a Spoonie. A Spoonie is a name for someone who has chronic illnesses, fatigue or pain (or all 3 and more!) and you only have so much energy to do a number of things each day.

I’m fed up of being made to feel that I can’t share things, which I will talk about more in my series. It’s an important subject and warrants it’s very own post.

Now I don’t like the term ‘Disabled’ as the average person wouldn’t consider me as ‘disabled’ by some mystical social aspect. Frustratingly, I struggle to do a lot of things, but no one would know this. Even family at times as I keep a lot of it to myself, just out of embarrassment. Many people are also in the same boat and don’t like to call themselves disabled. So use other terms hence calling myself a ‘Spoonie’.

The Spoon Theory is a metaphor that people with disabilities and chronic illnesses use to explain if they are having a good day or bad day. You may see people say ‘I used all my spoons today’ or ‘I woke up with barely any spoons’ and ‘I used 6 spoons getting a shower’.

Some tasks take a small amount of energy whilst others consume most, or all. So explaining how things affect us in relation to a number of spoons, say 12 spoons a day, helps people understand us more.

I’ve wrote briefly about things such as living with M.E/Fibromyaligia and life with a severe phobia. Now I haven’t previously updated much so I am going to write weekly about what has been going on from now on and let people ask questions, I can offer advice on how I deal with things and talk about some trials and tribulations I have gone through.

Generally speaking though, I struggle on a day to day basis, my life is lived online. I barely have any fiends outside of the internet as I am quite a loner. But it’s hard getting out sometimes. I have good days and bad days, I just never know when I will have them.

The Illnesses – Spoonie

So of course, my list of illnesses is exhaustive, but they are as diagnosed:

M.E (Myalgic Encephalomyelitis) – Fibromyalgia – Meniere’s Disease – POTS (Postural orthastatic tachycardia syndrome) – IST (Inappropriate Sinus Tachycardia) – Cluster Headaches – Chronic Sinusitis/Tonsillitis – IBS (Irritable Bowl Syndrome) – Urinary Tract Scarring – Bulging/herniated Discs – Slipped Disc – Spinal straightening of lower back – Sciatica – Arthritis in hands, knees and wrists.

As well as this, I have random periods of nausea which I struggle to eat, this can come in waves for weeks, or last about an hour randomly. Things also set it off such as travelling, panic attacks and smells. Although I have no idea why, it was just blamed on my illnesses.

Why did no one believe me?

One thing that I have unfortunately had, as have many with similar conditions – was no one believed me.

I felt at times like I was a drug seeker (Not the case) hypochondriac (Trust me, I wish this was the case) or after benefits (I work 2 jobs continually and don’t need benefits).

In short, I just wanted help. I was lost, unsure and scared. There was no one to tell me it’s okay, you can do this or that to make yourself feel slightly better. So basically left to my own devices.

I’d heard there was help out there in the form of support and therapy. How to help myself make my life better. Learn to manage the conditions.

It took a number of years, number of different things but I eventually found out how to make myself better. Then I can manage it myself with minimal medications. The Spoonie theory helped me manage things such as outings and trips.

Although I had to research a lot myself and learn to pace. Which I will go into more as I go into my struggles but also my strengths. But also how I fought it myself.

There was a point when I was at the pain clinic that I broke down and said ‘No one believes me’. They said they hear this every day and they understand and could clearly see I wanted anything but medications. Unfortunately, medications were a must and admittedly made my life 30% better.

Since how I had been treated over the years, I have an aversion of going to the doctors and refuse to go now. Unless it’s something really urgent, I try and deal with it at home. I can’t fully blame the GP surgery, they are over ran, under staffed and there are more people needing help than ever.

What Helped me?

Pacing was a massive help for me, as well as getting myself into a routine.

Going back to work was also a life saver, but then in turn, one job ended up making me relapse hard. More on that here.

This is something I will be talking more about throughout the series and will include the titles for each post below!

I’m back to job searching and the stress of all that, but also starting my own businesses which I wanted to do.

Here is to healthy(ish), happy and trying to make friends (Yes, I am a loner!)

You will see more and more personal posts talking about my life as a Spoonie. What I can go through on a daily basis, including work, starting a business and much more! I have a big bundle of helpful information I want to pass to others.

So why the series?

This series is to talk about topics that most of us fear to talk about. Worried about the public ridicule, or people giving us a hard time.

We are our own demons and self doubts, we don’t need outsiders adding to this.

I’ve kept everything to myself for so long, but I wanted to share the rollercoaster I live on. From the bad to the good and there is equally as much as the other. More so the good these days!

So I am going to share and bare all! (Well, not all, but most)

Do you have an illness and do you get support? How do you cope?

The Posts – Spoonie Series

I’m Sorry I don’t Look Disabled

Why I Am A Loner – The Life Of A Spoonie

Life With M.E (Myalgic Encephalomyelitis)

Life With POTS (Postural Orthastatic Tachycardia Syndrome)

Why I Have A Coffee Addiction

Lifestyle Changes Early 2020

Panic Buying, Stockpiling And Public Freak Outs – Who Is To Blame?

*More links to be added over time…