The EDS Chronicles: stripes w/ a 100% chance of fog

Blooms,

01234.jpg

Waking up in the morning, rubbing the sleep out of your eyes, switching off the alarm and opening the curtains. After your eyes have adjusted to the bright light of the Autumn morn, you notice a fog accumulating. You brush it off and continue to get ready for the day ahead. Yet the fog you had expected to shift is still lingering as you leave the house for work/school. Although you can’t help but notice that the fog isn’t showing any sign of moving – you have jobs to do, people to meet; so with a barrel of tea, you try your best to get shit done. But hang on…the fog is coming in through the windows and sticks to you like velcro. Other’s are oblivious but with clouded vision and a confused daze, you are all too aware.

This is brain fog. Sound familiar, or is this a term you haven’t the foggiest about *crickets*

Now brain fog isn’t limited to mental health conditions or chronic illnesses, have you ever been on antibiotics and felt like you’ve lost 30 IQ points rendering you unable to think of basic words or phrases? Ever had the flu and felt like your head was full of cotton wool? If not you’re a lucky son of a bitch, but if so – then this is what I’m referring to.

Hopefully, you don’t experience brain fog in it’s shed loads – but who am I kidding, this is a post for Ehlers Danlos, so you most likely have. But for the few, I wanted to involve you in this discussion I hope shall ensue upon publishing this post, because it’s just as important that y’all are educated about the personal affects and experience with the foggiest fog of all; as it’s something which we could all greatly benefit from you being so.

888.jpg

HOW TO COMMUNICATE WITH SOMEONE WHO’S EXPERIENCING BRAIN FOG

Communicating with someone who is experiencing brain fog can be difficult, and to be honest it’s a refined skill – however, I have had personal experience both as the person experiencing it, and the person on the outside. So, the following tips have been helpful for me in both positions.

1

Turn any irritation you may be feeling to a determination to try and help. To do this you need to stay present to listen to them, focus on what they’re saying, and understand that it may be confusing or fuddled to you but it’s harder for the person.

2

If the individual is getting upset because of how confused they may be feeling, open up a figurative space by offering for them to take guided breaths with them, as anxiety can worsen fog.

3

If someone snaps at you because of frustration, understand they’re most likely doing so because we can lose our rag at times (some more than others). So try not to take it personally or respond in a confrontational manner.

4

Do not interrupt or try and hurry the person when they’re trying to think of something, sometimes we really need to stay in the zone – longer than you, but all the same if we lose our flow, it’s even harder to get it back.

5

If you’re unsure how to help the individual, for example, if you don’t know them very well – then try the following…

 

I really want to be of help but I’m unsure how to do so, is there anything you need?

I would love to be of help, however I haven’t much knowledge; so if there’s anything you want me to know, or that could help you – please do let me know.

I have an idea which could help, [idea] – would you like to try it?

 

HOW TO HELP YOURSELF DURING BRAIN FOG

 

0561.jpg

By searching ‘how to get rid of brain fog’ you see a mass amount of information which is oftentimes conflicting or concerning tiredness and lack of concentration with brain fog – something which typically comes with illness or a chronic condition. Therefore, I think it’s safe to say that how we help ourselves with brain fog depends on three factors.

a) The language you use in reference to your brain fog; b) Your symptoms; c) Why you’re experiencing said symptoms

However, if you have brain fog which is unrelated to a previous medical diagnosis or is becoming debilitating, PLEASE visit your doctor or consult a qualified medical professional.

The way in which we communicate with ourselves is so important, and I cannot stress that enough. As someone who has previously had a self-image and self-esteem lower than the morality of Martin Shkreli and Ashley Madison combined – tI can vouch from experience. In therapy, I learned that using positive communication with myself helped in changing how I viewed what I was referring to.

So, for example rather than calling yourself stupid for not being able to remember something, bear in mind that you aren’t less intelligent just because you have a condition you cannot control. You can only do your best and this is different than those of people without mental fog.

pizap (3)

I have oftentimes felt that my mental fog gets in the way of my ability to live my life in the way I had once foreseen.

Or the life I had perceived possible after already experiencing symptoms. A portrait of myself without Ehlers Danlos, within a period of time I have not visited.

Seeing others around us who we perceive as being free of illness or the effects of cognitive impairment living lives which we could only dream of having the capacity to pursue, can feel crushing. But trust me when I tell you STOP CHASING THE IMPOSSIBLE. We have to digest the fact we are a) all unique; b) at different stages of our journey; c) living with a genetic condition which causes symptoms we cannot get rid of simply by eating right and exercising. Lusting after a lifestyle we are simply not able to realistically function in is pointless, and for what reason? Why are we not okay with creating a lifestyle we can adapt to.

I’ve grown sick of wishing I could have attended university when I was 18, fresh out of college – ready to start a new chapter in life, experiencing freshers week, and moving into student accommodation. I am fed up of mentally designing this apparent ‘preferrable’ life only to know damn well I don’t have a fucking time machine or magic pill to take my condition away. Those things aren’t suitable for me at this point in my journey. I am not lazy or less than for not being able to abide by the stereotypical milestones of an able-bodied person of my age.

However I’m also only human, so I sometimes do daydream about the simple things like being able to have a job, being able to focus for longer periods of time, and partaking in sport.

I haven’t much else to add, but I do want to leave on this very important message.

You’re just as worthy as everyone else, a condition and its symptomology don’t infer that you’re less than – you’re just different. That’s more than okay, and you’re more than good enough.

Oh and one last thing…actually no I forgot.

1112.jpg

 

7 thoughts on “The EDS Chronicles: stripes w/ a 100% chance of fog

  1. This is so very important and also covers chemo brain for those having travelled that journey, such good, sound advice and tips/tools on how to help someone but also the person on this journey. Thank you for sharing Loren xx

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.