EDS, ME, and Mental health awareness month

It is currently EDS, ME, and Mental health awareness month, and as I have all of these illnesses, lets shed some light on them.

Chronic illnesses are never easy, they rarely make sense to doctors and people tend to spend years looking for answers to their symptoms. I know I did, and I was wrongly diagnosed a few times before I got the right answers.

This is one of the reasons why awareness days, weeks and months are so important, they allow people to see people with those illnesses. It also gives us an opportunity to talk more about them and this gives people struggling more information.

Once we have more information, we can advocate for ourselves a lot better, and get the right help and information, and hopefully get to see the right doctors!

Awareness can also help doctors to see that we are not making it up, it is not all in our heads and maybe we just need a little bit more care and compassion. Unfortunately, many people with chronic illnesses have medical trauma due to the attitudes of medical professionals which hopefully is changing.

EDS, ME, and Mental health awareness month

I have been advocating and raising awareness for these illnesses ever since I have been diagnosed, but as it is EDS, ME, and Mental health awareness month, lets talk a bit about each.

Ehlers Danlos Syndrome awareness:

Charity: Ehlers Danlos support UK

Ehlers Danlos Syndrome is a group of illnesses that affect the connective tissue in the body, affecting our skin, joints, and digestive system. Some people can go through their lives with this and never know it, just thinking they are supple and double jointed, others will need to be tube-fed, and have their life shortened by it.

Most people who have it, have chronic pain, supple joints that can partially dislocate, trouble swallowing, constipation, spinal issues, and so much more.

The Zebra is the symbol because it used to be thought of as a rare condition and there is a saying that doctors use:

 “When you hear hoof beats behind you, don’t expect to see a zebra.”

cedsa.org

This is suggesting that usually it will not be that rare illness that you read about and is more likely to be something common. However, it is now thought to be a lot less rare and as more awareness is seen, more is known about it, we are coming to realise that EDS is not a rare illness. However, we still use the zebra as the emblem, and I love that.

Myalgic Encephalomyelitis awareness:

Charity: The ME Association

Myalgic Encephalomyelitis is also known as chronic fatigue syndrome and the main symptom of this fatigue. Chronic fatigue however is so much more than just feeling tired, it is a range of symptoms including memory loss, trouble finding the right words or stuttering, struggling to walk far, or at all, blurred vision, sound and light aversion and more.

The number of people being diagnosed with ME is growing especially after Covid because it is a post viral illness. We all have #justonewish that there was more awareness as this could happen to anyone, you only have to catch a virus to end up with this awful illness.

I often feel frustrated with fatigue, it is my worst symptom and the thing that holds me back and stops me doing what I want to do the most. There is no real treatment for this yet, and not much money is put into research into it!

You can watch an incredible documentary about this illness for free on YouTube now.

Mental Health Awareness:

Charity: Mental Health Foundation

Mental health is a buzzword that is used a lot, and that is because it affects everyone in the world. Nobody goes through life without stress, trauma or without being affected by mental illness either themselves or someone they know.

Mental health is talked about and given compassion a lot more now than it ever was in history and that is wonderful. But there is still a long way to go, especially when we have a government calling mental health ‘sicknote culture’!

This year, they are focusing on ‘movement’ and how exercise in any form can help our mental health. From walks in nature, to dancing or yoga, movement does a lot for helping us look after and lift our moods. So, find something that you enjoy and get moving!

I do have an accessible exercise playlist, full of workouts that are accessible to anyone, and I am sure everyone will find something that they enjoy. I try to do something off there every evening before bed, it does flare my fatigue but getting straight into bed is such a good way of doing it.

All these charities have different hashtags and events that you can get involved in this month. But I also love to look up their hashtags to find more people with the same illnesses as I have which is a wonderful way to curate your community.

This month often feels overwhelming to me as it is most of my illnesses, EDS, ME and mental health awareness month. I always feel like I don’t do enough, but I have so many blog posts here about these illnesses it is hard to feel guilty. It is harder to raise awareness for people with the illnesses, but we do our best.

Thank you xx