Why I need you to understand

So, this year’s ME Awareness week is nearly upon us. It raises varying emotions for me but I am comforted that I am not alone.

It seems impossible that in this day and age there are literally millions of us missing from our lives. Surely you must think that it is just a number plucked out of the air, that it can’t really be true – we’re overreacting somewhat? I am sorry to give you the news that it is true and that approximately 250,000 people suffer from ME in the UK alone. That’s women, men and children all suffering, every hour of every day.

An estimated 15-30 million people around the world are suffering from ME. Approximately 75-85% of them are women and 80-90% of them are undiagnosed

It’s hard to get your head around isn’t it? How are all these people left to try and exist in constant pain without any real medical intervention? What other disease leaves a person misunderstood, disbelieved, unable to have suitable medication to help their pain?

Surely then you may think it can’t be that bad, the pain can’t be as awful as many say but please believe me when I say it is REAL, it is EVERY DAY, it is not understood by so many – professionals included, it is not believed and many of us are left to rot on our own, trying to find anything that may help us.

But, the sheer nature of ME is that every person who suffers has a different set of symptoms, the severity is different and how they manage it is different. So what can work for one person wont necessarily work for another.

You have medical professionals who sit and look at you with that look, the one that says I really have no idea, I can’t help you and you get to the point where you just don’t seek medical help anymore because it takes all your energy to even get to an appointment.

As you have been kind enough to read this blog I would ask you just to take a couple of minutes out of your life to think…really think about what all the ME sufferers deal with ALL OF THE TIME.

**Imagine a bone crushing fatigue that never goes away no matter how much you sleep

**Imagine pain that stays with you no matter how many prescribed pain killers you take

**Imagine trying to live your life in a body that just doesn’t work anymore, where simple tasks like washing your hair or having a bath use up all your energy

**Imagine not being able to work, not being able to attend events or socialise like you used to but having to sit and watch while everyone else carries on with their lives

**Imagine not being believed by friends, family and medical professionals and being told you just need to think positive/stop being lazy/just get some fresh air/do this thing because my friend’s, Auntie’s best friend had ME and now she is cured!! (remember all sufferers are different and that Auntie’s best friend probably didn’t have ME in the first place!)

**Imagine being isolated. Living within four walls for most of your days. Only seeing your close family as friends have given up asking if you want to meet up or go to an event because you always have to cancel

**Imagine rarely being able to plan anything because until you wake up on that specific day you will have no idea whether you will have enough energy to get out of bed let alone leave the house

**Imagine having to fight for your right to be heard. ME drains your energy both mentally and physically. People often don’t realise that our energy is zapped just from having a conversation, just watching a programme or reading a book, it is not just physical energy. So, you start your day like a mobile phone battery that only has a quarter of its charge. This charge never goes above the quarter line no matter how much rest you have. You have to use your energy wisely but you also have to use it to fight. To call on every government in the world to formally recognise ME and sufficiently fund research at the levels needed to treat and, ultimately, find a cure. 

That’s just a few “imagines” but there are many more. Can you now empathise? People with ME don’t want pity, we just want help. We need to be heard but having an illness where your energy is depleted is another cruel twist of fate when we are literally crying out for help.

So for those who are new to ME, what exactly is it?

Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a systemic neuroimmune condition that causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound.

The human cost of the current medical and policy neglect is tremendous. At the “mild” end of the spectrum, patients who still work may lose 50 percent of their previous function. Others are forced to abandon careers they loved – and the ability to support themselves and their families. Twenty-five percent of patients are shuttered in their homes or trapped in bed. At the most severe end of the spectrum, patients may live the rest of their lives in darkened rooms, unable to tolerate light, sound, or human touch. Only 4-8 percent fully recover.

In the UK, MS has received 20 times the funding as ME

MP Steve Pound MP at the House of Commons debate in January 2019

Throughout ME Awareness week sufferers, their friends, family and carers will be campaigning either physically or virtually from their homes and beds.

I will be sharing on social media and have been lucky enough to be chosen by the ME Association to share my story in the press. This in itself makes me feel proud but also anxious. I am sharing my story with many who will disregard it and call it an attempt at pity. I will just have to deal with any situation as and when it happens but I hope that the majority of people read it and try to understand.

The Millions Missing Campaign that is closest to me is on Saturday 11th May in Bristol. On this day my shoes and those of my son will be placed again on the College Green along with many others. A tag will be attached to show who we are and what we miss out on.

Shoes have been a powerful, unifying symbol for The Millions Missing since the first global protest in 2016. Demonstrations across the world have displayed rows of shoes to represent what people are missing from their lives.

The haunting image of rows of shoes symbolising the effect of this disease on people’s lives continues to be a focal point at each campaign

As I have said, during the campaign week I go through mixed emotions. I am forever grateful to all the people who physically make it to the protests but also to the millions who protest from their homes and beds.

One massive positive that I have found since having this devastating disease is the overwhelming comfort, understanding and help that is shared amongst the ME Community on social media. Yes, the trolls appear, the sceptics raise their heads and share their views but when I am in my darkest times I know there are people I can reach out to and they get it, they understand it and help me keep going. I am not disregarding any help I get from my family or friends but the age old saying is you can’t “get” ME until you have it.

I am grateful to everyone who takes the time to try to understand and hearing that someone has read your blog means the absolute world. I am always willing to share my story, I have never been afraid to tell the truth or to hide behind the disease but then I have always worn my heart on my sleeve. The internet doesn’t always show the correct picture of ME so if you know someone with the disease and you want to try to understand it then just ask them, I am sure they will be more than happy to talk to you, but listen without judgement. You cannot fix them but understanding or at least trying to means a whole lot more.

I hope this year our campaigns are louder and that we finally get the health equality that we deserve and need. No one deserves to live a life like this because we aren’t living, we are just surviving, waiting and hoping.

Faith, Trust & Pixie Dust

One thought on “Why I need you to understand

  1. Another brilliant read x keep fighting, feel proud and confident that you have found a platform and voice to fight xx very proud of you xx

    Like

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