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[thesecretlifeofmecfs]

A very important medical journal recently published that discusses the harm in falsely labeling ME/CFS as psychosomatic.

[thesecretlifeofmecfs]

[thesecretlifeofmecfs]

Since I first got sick, I've been a 0 at my absolute worst and 50 at my very best. I'm currently sitting at about 30.

[thesecretlifeofmecfs]

[thesecretlifeofmecfs]

I was doing so well [pushing myself to get back to baseline] recently, and now all of the sudden [after pushing myself] out of nowhere [as a result of pushing myself] I’m stuck in bed again with no energy? What happened!? [I ignored my body]

[thesecretlifeofmecfs]

[thesecretlifeofmecfs]

I'm really irritated because tickets opened up for a concert I really want to go to, but accessible seating costs significantly more than the cheapest standard tickets.

I literally would have to give up my wheelchair in order to afford to go.

This isn't a choice I should have to make.

[thesecretlifeofmecfs]

I pretty much live my life on nausea bands these days

[thesecretlifeofmecfs]

Staying Cool #53

It’s getting to summertime and some of us don’t do well in the heat. Here’s a few ways to cool down with little or no money. I’m about to go to bed so I’ll add to this tomorrow. 

Take a towel, or some sort of cloth and wet it with cold water. Wring it out well, then place it around the back of your neck. You can use the rag on your head or wherever you like but the back of the neck works well for most. If possible, use two rags at a time. When the one you’re using heats up, you can put in a cold bucket or sink of water and pull the second one out which is ready. Depending on what you use you can even put it in your freezer. Let any possible ice on the outside of the cloth melt so that you aren’t putting ice directly onto your skin. If you’ve rolled up a towel or something like that, there will be ice inside that will keep it cooler for longer :)

I’m currently using this method because it works so well. Fill a container with water and freeze it. When ready, go into the room you want to use, place the ice in front of a fan, and turn the fan on. It should cool the room well. Remember to make sure your ice will melt into a container The wider your ice block is, the better this set up will work thanks to the larger surface. 

If you feel too hot to sleep, consider trying this: Go to the bathroom with your PJ top. Turn on the cold water tap at the sink and soak your PJ top. Now wring it out as much as you possibly can. Put it on and go to bed. I do this every summer :) subliminality reminded me to note that you shouldn’t do this every night. Especially if you have any skin problems.

During the day, if you’re at home repeat number 3 ^ with a T-shirt. On the hottest day of last year I was doing this and I stopped bothering to wring out the shirt because the heat dried it so quickly otherwise. 

Simply fill a clean spray bottle with water and spray cool water over yourself when needed. I bought my birds a bottle that sprays a super fine mist and it’s perfect. If your spray bottle happens to be too much, spray it upwards so the water falls onto you like rain (it’ll spread out and cover you more evenly)

You can make a DIY cool pack by mixing water and vodka in a zip-lock bag and freezing it. The mixture can’t freeze thanks to the vodka.

Drink lots of water! When hot, we get dehydrated quicker. The less hydrated we are, the hotter we are. So making sure you’re constantly hydrated is an easy way to help the heat.

That’s it for now. Do you have any ways of easily/cheaply cooling down? 

~Amber

[thesecretlifeofmecfs]

Because it's around the time of ME/CFS awareness stuff I just wanted to raise awareness of how fucking brutal this disease is lol. Ive only been ill for 3 years but I know people who have been suffering with it for decades, even longer than Ive been alive.

Ive been housebound apart from necessary medical appointments since last Halloween. I miss eating out at cafes and takeaways, specifically getting greasy hot chips straight from the fryer. I miss being able to choose my own groceries and other necessities at the stores. I miss being able to go for walks and being in nature. I miss being able to meet or see new people, even just saying hello to a kind stranger. I miss being able to go and do fun activities like water parks or escape rooms with friends. I miss being able to pursue my education and follow career paths I have dreams of. I miss not being in pain 24/7. I miss living

[thesecretlifeofmecfs]

~showing off my nausea band couture~

But seriously, if you struggle with nausea and dizziness, hear me out!

These bands, called seasick bands, are absolutely amazing. They use acupressure to help block signals to your brain that process nausea and vomiting! They also help with motion sickness!

You can find them on Amazon for like 4 bucks and at most pharmacies!

[thesecretlifeofmecfs]

[thesecretlifeofmecfs]

FYI to sick or disabled folks and those who assist or care for them:  Simplicity patterns has a new line of adaptive sewing patterns.  Designs include tops with port access, clothing with velcro closures, bags and cushions for mobility aids, bibs, chemo hats, and more.

I’m excited about these because they are the first patterns of this kind I’ve seen anywhere.  And Simplicity patterns are great for beginning sewists, with very clear step by step instructions and illustrations.

Patterns can be purchased here:  https://simplicity.com/simplicity/adaptive/

;

[thesecretlifeofmecfs]

So good news, after being dismissed by the first 2 doctors, I finally got a referral to ENT for my severe auditory sensitivity.

Let's hope for some answers.

[thesecretlifeofmecfs]

I went out for a walk the sake of my mental health and the sun was setting and the sky had some heavy clouds and it’s probably raining somewhere and the wind was blowing just enough for it to cool me down and I saw so many cats!! And a few dogs! And I saw pretty flowers! And it’s good to feel alive again after being sick for weeks and tho I’m still struggling to get better, my illness is never all I have, and I don’t know where I’m going but at least I’m going somewhere and this pingu meme is truly how I feel about doing stuff that isn’t productive but still makes me happy even if there is not a point into doing them. Maybe the point is just trying to enjoy this little life

[thesecretlifeofmecfs]

It’s going to be okay.

It really is.

We will face this situation together with love, humour and patience.

We will weep together, we will laugh together.

We will discover togetherness in our apartness.

We will be called to face very difficult feelings inside of us.

Fear. Grief. The loss of an old way of life. Our devastated plans.

We will learn to face ourselves. Nowhere to run, nowhere to hide.

Nowhere to go except within.

We will learn to face our boredom. Our restlessness. The part of us that wants to be somewhere else, with someone else, doing something else, having some other experience, in some other Now, living in some other life.

We will let go of the wonderful future we had planned.

We will let the fantasy future die, release it, and grieve it.

We will return to the solidity and warmth of the present.

We will make the present into our home.

We will begin again, here, build a new house on new soil.

We will explore a new way of life.

Strange, at first. But full of possibility.

Slower. Kinder. Quieter.

We will talk to each other honestly about death, and life, and impermanence, and how we feel about all the changes that have come to us and our loved ones.

We will learn to value life a little more.

Yes, perhaps we will learn to value life a little more.

And live with our hearts cracked slightly open to the elements.

And lean into uncertainty, and find our salvation there.

None of us are immune to change.

To rupture. To the shattering of old, familiar forms.

This is the way of things, this has always been the way of things.

From this perspective, nothing has gone wrong.

Crisis simply means “turning point”, and none of us are immune from the turning.

The breaking of the old makes way for the birth of new.

It has always been this way.

Love. Humour. Patience.

With these things, we will come through.

Stronger than before.

Renewed.

Ready.

- Jeff Foster

[thesecretlifeofmecfs]

I'm usually a very positive person, I have been down the road of acceptance. But I'm struggling right now and going through medical burnout.

I'm sorry if there's a shift for a little while in the posts that I make, if I make any at all. Some of it will be sharing my feelings, maybe hoping it helps someone out there feel less alone (I know I have found great comfort in the empathetic company of others). Some of it may be positive quotes and such largely relating to chronic illness and mental health.

(Reminder: ME/CFS is a very physical illness and is NOT psychiatric or psychosomatic. However, like other severe chronic illnesses, it can lead to secondary depression, medical PTSD and burnout, etc)