My Story About Living With M.E – Myalgic Encephalomyelitis

I wanted to share my story about living with M.E – Myalgic Encephalomyelitis and how it affects me, to how it has changed my life and progressively getting worse. As well as explaining what it is and how I live with it in my daily life.

This isn’t a way for me to gain any sympathy, I really don’t want it. I am managing in my very own way. More so, I want the general public to know what it is like to live with. That it is not ‘all in my head’ as people like to tell me. But also quashing some things like ‘exercise more’ and why it doesn’t help.

Now, this isn’t the only thing wrong with me, this is one of a list of things, but this is really significant in the symptoms I have so it was worth talking about.

As well as this, I am going to also talk about how the world treats me with M.E as you would be quite surprised!

I wrote about this about 6 years ago and there has been so many changes, many more things I was diagnosed with and Living with M.E.

So I guess we should really get into the nitty-gritty hey?

Living With M.E – Myalgic Encephalomyelitis

What is M.E – Myalgic Encephalomyelitis?

Before I get into what it is, I just want to point out that M.E is a condition where little is known and there is no 100% confirmed cause, what it is or what symptoms it has as it varies from person to person.

M.E is now recognised as a neurological condition, rather than the predecessors, such as a blood infection (At one point, it was along the lines of something similar to HIV and in the blood, hence anyone diagnosed can not donate blood in the UK) which as you can imagine, had a very big stigma attached. Well, considering we can’t donate blood because of it…

World Health Organisation *WHO* (2016) classifies M.E as a disease of the central nervous system i.e. neurological.

Although, still of the unknown origin, but there are many reports and documents coming out from studies with people living with M.E and other illnesses coinciding, or reasons it may have come about or why we have it. But sadly, nothing is 100% yet. But I keep my hopes up that it will.

You may notice, that I refuse to use the term CFS because this was a term coined with a stigma of it’s not something serious and just being tired *Enter rolling eye emojis here*. That is why my title is My Story About Living With M.E – Myalgic Encephalomyelitis.

There have been studies and a general consensus that in most cases of M.E, there is a starting point. So an infection or virus that essentially, a person never recovered from. For me, this was pinpointed to a severe bout of tonsillitis I had around 4 years old, I just never felt right after that. More on that on How I Ended Up With M.E.

There are a wide variety of symptoms, the most common from the NHS website are:

Extreme exhaustion, malaise, tiredness that never goes away
Post-exercise malaise/fatigue and pain
Sore throats, swollen glands and symptoms similar to viral throat infections
Widespread or localised pain
Orthostatic intolerance – This can be in the form of Postural Orthostatic Hypertension Syndrome (POHS) or Postural Tachycardia Syndrome (POTS) which are common with people with M.E.
Exhaustion, fatigue and inability to have a refreshing sleep
Headaches, vision disturbances, tension and pain around head/face
Flu like symptoms
Sleep problems
Dizziness and heart paltpiations (But this too can be POTS)

Also many more symptoms!

*This list is not exhaustive

We all have our very own range of symptoms and this is more about mine, but you are welcome to comment and share yours! It is interesting to know what other symptoms people have and if there are any strange ones we have (I know I have a couple).

How M.E – Myalgic Encephalomyelitis Affects Me

I have days which I term as ‘Good Days and Bad Days’. But as well as that, I have relapses which means that everything is so much harder and I struggle a lot more.

There are several other conditions I have which are also affected by this.

On a typical ‘Good day’ I will be able to get out of bed without feeling dizzy, feeling like I will pass out (Which is related to POTS and how this affects me is something else, but M.E can make it worse), being in severe pain and many more things.

‘Good day’s’ are generally waking up feeling exhausted, but a few coffees and I am feeling a bit better. The pain is there, but it’s something I can deal with by medication and holistic therapies. I do feel stiff, but I can get out of bed without needing some time or assistance. Sometimes I struggle with cognition and can forget a lot, especially when I need to do something.

Now a typical ‘Bad day’ can vary. The pain can be so bad that I am struggling to lift anything, walk and get out of bed. The memory/cognitive issues are really bad. Generally have ‘flu’ type symptoms, like severe aches, throat pain, headaches and swollen sinuses. Depression hits and I have a lot of low moments.

‘Bad day’s’ I struggle with getting out of bed and generally need to take stronger medications to get me through the day. Can you imagine doing hours of working out, lifting very strong things for a long time and waking up stiff, in agony deep in your muscles and that fatigue you feel? That is what a bad day feels like, but the pain is more severe. (I am comparing to a time where I used to work out and the pain I would feel after, I presume people have the same pain when they start working out)

The range of symptoms I have can vary. But the majority of the time, it’s widespread pain, fatigue, exhaustion, memory and cognitive issues, headaches (usually cluster type), throat swelling and pain, glands swelling, sinusitis symptoms and even sometimes lymph nodes when it’s really bad.

Other conditions cause issues such as pre-syncope, fainting, back pain, tinnitus and much more.

I can start to do something, then I spend 30 minutes staring into space and forget what I needed to do. Sometimes I also fall asleep out of nowhere. This is why I keep myself busy.

How I can explain this, is by having really bad flu, tonsilitis, sinusitis, pain after a long workout, staying awake for 48+ hours, being forgetful and can’t think as you are confused. But then add a bit more pain into the mix.

But one thing I can assure you, I am not making it up as I really wish I was. As, I wouldn’t have to live with this pain. Hence why I am writing this post – My Story About Living With M.E – Myalgic Encephalomyelitis

I can’t remember a day when I felt ‘normal’, I guess what I expect everyone else to feel like.

So there is going to be many posts about this because there is so much to talk about!

What Are My Triggers?

I’ve been lucky that my triggers are mostly physical and mental. Some people have triggers like food, smells and various different things.

So mine is physical. If I go shopping and carry bags, the next day my whole body will hurt. I tend not to do a lot and became housebound because when I do anything outside my normal day, I then suffer the next day. Even things like cleaning the entire house in one go, putting loads of shopping away can trigger the pain and stronger exhaustion the next day.

With this, I learned the art of pacing. It is very important we only do what we can. I know my limits and I will do certain things every day.

More on this on later posts – let’s stick to My Story About Living With M.E – Myalgic Encephalomyelitis

With the mental side, stress is a huge trigger. I had to leave a job because of the stress, causing me to relapse really hard. I will talk about the relapses later.

If I am under a huge amount of pressure and I am not able to cope with it, this causes a relapse. Generally, I have ways to manage things and have a great system for organising myself. But then when I relapse, I stop doing this and I am all over the place.

Relapses

 

I relapsed a few times a year. Sometimes I relapse often, sometimes much less.

There are many factors on why I relapse and my usual suspects are illness and stress.

Now I am going to touch more on relapses as there is a lot of information on what a relapse is, how I deal with it and medications etc.

So this is deserving of it’s own post.

Replases can last from 2 weeks to about 3 months, generally they do get a bit better. Or I get used to how I am, then relapses just get worse and worse. It depends on how bad the relapse is.

So I can have a relapse and the exhaustion is worse, the pain is heightened but I start to manage it. So the next relapse is even worse.

I get through a relapse by stronger medications, more holistic therapies and trying to let my body rest and recover. But it’s hard, I like to be up and about and keeping busy.

Working long hours continually for long periods of time do make me worse. So I have cut down my active working hours now which has benefitted me more.

How I Deal With Myalgic Encephalomyelitis (M.E)

Now I deal with it much better but I have had this most of my life. So as I age, it gets worse. This is what I am finding hard. A new symptom, more pain or exhaustion gradually gets worse.

Often I get myself into a state of coping, then about 6-12 months later, something changes. Or I have a bad relapse that causes more issues.

I am going to write a separate post on this as there is a lot out there you can use to manage symptoms, but also share what I use for mine.

Holistic therapies are a strong factor in managing my symptoms and mental health.

From essential oils, crystals, herbalism to yoga and mindfulness. Plus medications from a specialist. However, I make sure I do my research for contraindications as this can be a problem with herbs and essential oils. You can even consider CBD and similar products which are all the rage right now. You can also get medical marijuana in some countries. Are you wondering how to get a med card in colorado? Well, the process typically involves obtaining a recommendation from a licensed physician and submitting an application to the Colorado Department of Public Health and Environment (CDPHE) for approval.

Keeping my mind busy, working, writing and doing courses for my business give me the willpower to keep going too.

Final Thoughts

I know I don’t look disabled from the pictures you see of me, well of course, you only see my head and shoulders. Photograph usually taken courtesy of using a timer!

Make-up was done, but it took me around 4 hours as I couldn’t do it in one go like most. I had to take continual breaks. 3/4 times as long as someone doing their make-up and believe me, there are not a lot of steps either.

It’d be nice for people to be more mindful of invisible illnesses and just understand that although you can’t see something, it doesn’t mean nothing is wrong!

Being mindful is important.

Just because I look ‘Okay’, doesn’t mean I am not.

Littered throughout this post is more aspects of Living With M.E – Myalgic Encephalomyelitis as there is so much to say!

Feel free to reach out if you have any questions!

Photographs – either myself or: Copyright: Image by StockUnlimited

My Story About Living With M.E – Myalgic Encephalomyelitis