The Isolating Experience of ME/CFS, My Story.

I would like to give a TW for this blog. This blog contains mentions of self harm, suicidal thought, attempts, hospitals, sa, sickness and more. If you are sensitive to this stuff, please proceed with caution or click off. I appreciate you trying to learn about this even if you cannot read further please go check out https://meassociation.org.uk/ if you have the time.

Firstly, I'll start with explaining what ME/CFS is. Myalgic Encephalomyelitis, also called Chronic Fatigue Syndrome (ME/CFS), is a chronic illness that has a population prevalence of at least 0.2% – 0.4% (i.e., 2 to 4 per 1000 people). It is not a well known or well recognised illness as there is a massive debate in medical areas what is considered a symptom, what isn't and whether it is even real or not. 

It causes a person to experience extreme discomfort and tiredness with very basic tasks and daily things. It is usually misdiagnosed as depression (although it is very common for people with this illness to have depression and/or anxiety as well) as it's similar nature of struggling with daily things. It can cause a wide range of symptoms such a sore throats, body aches and numbness in limbs all the way to being bed ridden, heart palpitations and in severe cases periodic paralysis.

As someone who was fortunate enough to be diagnosed with CFS at a fairly early age compared to most, here is my story.

My story of sickness started from the moment I was born, I had always been a "sick" kid growing up with constant hospital visits, operations, blood tests, infections and so on. I never really had a period in my life where I was "healthy." From infancy with pneumonia and extremely bad asthma to childhood with constant and severe chest infections, it was like I was in a constant loop. 

Around primary school is where we believe my CFS started to develop, I would constantly be tired and my sleep started to lack. I was diagnosed with insomnia and prescribed melatonin, although this never did help and I began have constant nightmares of killing myself in different ways, we had to stop the medication because I started to actually become suicidal after having these dreams. Overtime my insomnia started to get the best of me and nights turned from having 5 hours of sleep to none at all. I would still be going to school at this point; no sleep, suicidal thoughts and all. 

My mum began to notice how bad it was getting as I began constantly throwing up in the mornings and continuing on (a big part that played in this was masking as well, I would later be diagnosed with autism in adolescence). We constantly went to doctors about this and every year it would get worse, my limbs began to always ache and I was diagnosed with hypermobility as well as many other stuff. 

We only finally got some recognition when I was about late 12, I had started high school (secondary) and began to self harm. The suicidal thoughts had gotten so bad by this point as well as the pain my body was feeling I didn't want to be in this world anymore. I attempted 3 times that year and was put with a school counsellor as well as a "therapist" in school. These two did not help me at all and only made things worse for me. 

These years were one of the worst as not only was I going through this but had been bullied nearly all my life, sexually harassed constantly at this new school and had lost practically all my friends. My attendance dropped from 97% to 54% and whenever I did go in I would usually call home sick by lunchtime. I spent so much time in that office due to exhaustion and constant pain they began to be sick of me and would make me sit in this dark closet by a horrible bathroom, they later began seeing that was my only safe space for when I didn't feel well and were told to put locks on it so my attendance wouldn't be as bad and also began pretending to call home and saying my parents couldn't pick me up.

Later that year (year 8) I was told I had chronic fatigue by a teacher I hated. She wasn't supposed to but she only told me to manipulate me into thinking this illness can be cured and I just had to suck it up until I could "get better", that this shouldn't stop me from attending and I was overreacting. To no surprise this only made it worse though as I would begin to not go to school at all. All my grades dropped and I was constantly given "plans" to help but every time we tried it would only be worse. I attempted once more that year and was almost successful until my mum caught me trying to go through with it. 

After this my mum realised how severe this was and took me out of school until I was better. I was still on role but did not attend and to this day have not gone back even two years later. Since then I was properly informed about what my CFS is and was also diagnosed with many other things such as more allergies, autism and so on. 

I have been waiting around three years for treatment of CFS, even though there is no cure, there are ways to deal with it and even now I am yet to see that. Many of the doctors we've gone to for help have rejected it as their own "opinion" is that CFS does not exist. Over the years it has only gotten worse, even though I'm in proper therapy now, I don't think that trauma will ever fully go away. Every little thing I do causes me to loose energy. 

The best way I can describe CFS is you have a constant battery. A battery you have to keep full and every single person around you had a charger for that battery but you do not. I have to think of every little action, thought and emotion I have as all waste my energy. I have barely any contact with anyone except for few friends I mainly or only speak to on text. No one calls me, I only see two of those friends every four/five months and a few of them at a club I joined a few weeks ago to try and keep me social for 50 minutes. The only daily interaction I have is with people online. As much as I appreciate them, talking to someone through a screen is nowhere near the same as seeing and talking to a person irl. 

My body aches every single day and I cannot remember when I last slept a full night or didn't sleep through the day if I didn't sleep at all. I miss out on so much social and human interaction I started to develop delusions which would cause me to get even worse. My chronic fatigue also got worse because of this and I began being bedridden more than I wasn't. I also gained an eating disorder and binged often to find any kind of comfort. During this time my mum was practically my only support. She was the only one who understood me through and through even though she was going through so much herself (cancer, extremely close family death etc.) 

Slowly but surely, I'm trying to be more positive on life and trying to better at least my mental health. Chronic fatigue has destroyed and robbed so much of my youth before I was even diagnosed and as much as I grieve over that, I'm still young and still have so much of life to go through. I started 1t1 learning online and even though it's only half an hour lessons, it's helping. 

Although this is just my story, there are many people out there who have similar or completely different experiences. Some people have no one and rot there in their own sorrows, some have loads of support and can carry on as usual with care. There have been very little steps taken officially to show the world this illness but there has also been good ones. Millions missing is a great example. (https://www.meaction.net/countries/uk/millions-missing/) 

Even though this is still such a big issue, I hope my story opened somebody up to the world we have to live as people with this illness. Thank you so much for reading.

If you wish to learn more please check these sources out. 

https://www.meaction.net/chronically-complex-meaction-podcast/

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

https://www.hopkinsmedicine.org/health/conditions-and-diseases/chronic-fatigue-syndrome

https://www.actionforme.org.uk/

If you think you may have CFS from these sources or my story, please check in with a doctor or medical expert if possible.