Niamh

22- Living with NMOSD & CRPS - Crochettier - Well-being focused 🦯 🦽 🏳️‍🌈

[Niamh @bigblaaah]

The news and peoples views about it are depressing me so much. It’s horrible to see the way people treat one another. I will be trying to take a break from consuming these things. I have more important things to spend my time on.

[Vittoria @vitt2tsnoc]

One week: Huw Edwards is a paedophile.
A man murdered 3 girls. Men hijacked a vigil for murdered children, cause chaos in a grieving town. A paedophile plays in Olympics. Two nights of drunk men rioting, fires, fighting. Men can you PLEASE, give it a fucking rest? It's exhausting

[Niamh @bigblaaah]

@oriiionses That’s really great! Telehealrh seems so good. We don’t have that in the uk yet.

[Niamh @bigblaaah]

@bibicosplays So cute. Love the mushroom one! They look super cozy.

[ThePOTSPostman @ThePOTSPostman]

One of the hardest parts about living with chronic illness, for me at least, is the constant battle between my motivated, ambitious mind and my body that simply can’t keep up.

I have so many goals, but my physical limitations often hold me back.

I want to work more hours so I can make more money for my family.

I want to workout because I miss it so much.

I want to go for a run.

There’s so many projects around the house that I want to get done.

There is so much I want to do and my mind is ready and willing to do it, but my body, the fatigue, all my symptoms, are constantly hold me back.

It’s incredibly frustrating and emotionally draining at times.

[The Ehlers-Danlos Society @TheEDSociety]

Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body.

hEDS may be suspected if a person has:

Joint hypermobility
Joint instability
Chronic #pain
Mild skin hyperextensibility
Abnormal scarring
People with hEDS may also have:

Chronic fatigue
Gastrointestinal issues
#Dysautonomia
Headaches
Mast cell activation diseases

You can learn more about the features of #hEDS by selecting different body parts here: https://t.co/5xR3hBMWTH

#meded #medtwitter #EhlersDanlosSyndrome #Hypermobility #HypermobileEDS

[Niamh @bigblaaah]

My air fryer is THE accessibile device I use everyday. I’m able to easily make and transfer food without pain or accidents. I don’t have to use any vision to operate it. And best of all it turns itself off.

[Myk is Walking Backwards @mykola]

Air Fryer is the single most life-changing gadget purchase I've ever made. I can cook really good food now, really cheaply.

I can eat really well now, without wasting money on delivery or takeout. I feel like the air fryer is what the microwave wishes it was.

[Niamh @bigblaaah]

@disabledtudor I’ve heard of the author. He’s referenced a lot in the counselling Tutor Facebook group.

[Niamh @bigblaaah]

@DiaryofaSickGrl An anathesiologist told me at 16 that I needed to get used to being in pain. I have full body complex regional pain syndrome. I was on MORPHINE everyday at 16. That’s not the kind of pain you can “get used” to.

[Niamh @bigblaaah]

@musical_zombies @DiaryofaSickGrl That is horrific. I’m so sorry someone said that to you.

[Niamh @bigblaaah]

@Vividoutcomes Congratulations. If most of taken so much courage to do that. Take care of yourself and enjoy your freedom.

[Niamh @bigblaaah]

@ThePOTSPostman How it varies so much. Even though I’m able to do something one day, I may not be able to do it another day. Everything I do is carefully planned.

[Jeannie Di Bon @jdibon]

When you live with a chronic condition like EDS / HSD, we constantly have to assess the cost / benefit of each activity we do.

This has been researched too. We assess how much pain / fatigue something is going to cost us. We then assess whether it’s worth it.

Lots of planning.

[Niamh @bigblaaah]

@JoannaNoBanana This weekend I managed to clean my flat on my own.

[Niamh @bigblaaah]

@ThePOTSPostman Fatigue, and the best way I’ve found is to pace. I’m doing well at the moment and have had the most energy I’ve had in almost 8 years

[Niamh @bigblaaah]

@beckyboopta Visit the ducks
Park picnic (or meal deal)
A craft class
Craft group
Beer garden
Book club
Visit the library and read there

[Niamh @bigblaaah]

@pigletish My comfort shows are Gilmore girls, bones and grace and Frankie.

[Niamh @bigblaaah]

@greg_ashman That was a thing on holidays at resorts and campsites.

[Niamh @bigblaaah]

@ADanGrenier @PanickedFoodie I’ve used this an Nilaqua before!

[Niamh @bigblaaah]

@PanickedFoodie When I was very unwell I used a washing foam called Nilaqua. It’s used for camping. It doesn’t have a strong smell. It helps to freshen you up a bit. There is also a vape thing you can use to wash your hair in the sink. But it is easier with someone to help.