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My brain fog has been so bad the last 18 months due to constant inflammation, I am seriously getting concerned.
Things that I was able to do/think of easily in a second language (Chinese) are gone. It's getting harder and harder to think my way through things that once came naturally to me. It's terrifying. Is anyone else going through this?
Here are some 'Did You Know?' facts written about #LifeWithDisability: buff.ly/34TxK9Z
It's 2023 and we are still harassed when we don’t fit society’s idea of what ‘disabled’ looks like.
#TimeToBelieve #arthritis #fibromyalgia #Disability #IWD2023 #InvisibleDisability
Today is the start of #InvisibleDisabilitiesWeek aka #IWD!
"I need to be vocal about my disability because I don't look sick. You will never see me on days I do look sick because those are the days I don't leave my bed." Carrie, MySeveralWorlds.com
#IDW23 #CareInMotion #ButYouDontLookSick #axSpA #MyDisabledLife #DisabilityInclusion #MySeveralWorlds #Fibromyalgia #DisabilityAwareness #MECFS #InvisibleDisability
>went for what they may consider a normal walk two days ago. Or fell out with their friend yesterday and it raised their heart rate.
It is so very ATYPICAL to what we're used to identifying. It took me *many* years before I had a clear case where *I* recognised that I was flattened on Sunday because I walked around town for four hours on Saturday.
Now it's obvious to me, because I know most of the causes and signs. But doctors don't help you recognise those until you're diagnosed. #MECFS
One of the things that makes #MECFS hardest to get diagnosed with is that I do not think PEM is easy for PATIENTS to identify.
I'm pretty sure the first many times I was asked whether my fatigue came with a delay I said no, because when you don't know what's going on you regularly push yourself to the point of crashing. Causes are either not obvious or are immediate, because it's a CRASH, not PEM. &when it is PEM, how is a patient supposed to put together that they feel shit today because they>
When a patient has a low symptom day, we sure don't want it happening on hospital days.
For one, it gives our docs a false sense of our reality. For another, it's an absolute waste of a rare low pain day!
My doc doesn't want me to bring my wheelchair to appointments. He wants me to walk in. (I understand why. He needs to see my gait because of #InflammatoryArthritis.
But if I'm spending 5 hours on a hard seat that's going to result in terrible pain for me. So it makes a lot more sense to bring my wheelchair, doesn't it? I hate that hospital days make me worse! 😭
A Donnelly
Dr Ro Smith