Previously safe foods are, tinight, being proven otherwise.

Exhausted, feel like trash.

Can anxietyy/stress/etc make MCAS reactions worse?

#MCAS #NEISvoid

Just had another functionally useless doctor appointment.

First appointment of hell week down and it has left me in a sour mood.

So fuckin tired of all of this.

#NEISvoid

"Pain whenever I eat anything that isn't chicken or rice" is up there with "insomnia, but always fatigued" and "allergic to water and sunlight" as some of the worst symptoms I experience with my disabilities, NGL.

#NEISvoid #pwME #MECFS #MCAS

"I forgot what I was going to say because my brain was too busy forgetting other things."

#NEISvoid #brainfog #MECFS #pwME #LongCovid

I'm really struggling with chronic pain due to my genetic disorders, am not able to afford meds, & I'm *not* okay.

If anyone can help, that would be so appreciated, but no one has to! I'm sorry I'm even asking. I need $70. I hate asking for help, I feel like a jerk, but I don't have another option.

PayPal paypal.me/motleychick
Cashapp $izzi6
Venmo @egdirbretla

#NEISvoid #hEDS #EDS #MECFS #chronicpain #chronicillness #spoonie #spooniechat #longcovid #marfansyndrome #POTS #disabled

Amid the fallout from a bedbug infestation I have to get done (or even replace) a ton of laundry. In addition I have the electric bill due again (now LATE).

Disabled, broke.
Update 032326 - As you might have seen, a miscalculation & other expense wiped my progress. Adding ko-fi link as an alternative (people seem to prefer that)

@mutualaid @mutual_aid @MutualAidVisibility @disability @blackmastodon @edendestroyer

https://ko-fi.com/bpsycho/goal?g=0
https://www.paypal.me/longbongsilver
https://Cash.app/longbongsilver
https://venmo.com/u/longbongsilver

#MutualAidRequest #disabilitycrowdfund #disabledmastodon #showupforwishes #NEISvoid #emergencycrowdfund #disabilityaid #blackmutualaid

Today is apparently #LongCovidAwarenessDay

My journey with #LongCovid so far:

2020 - I was considered a Key Worker. I worked in one of the least appreciated key industries at the time, I.T. I didn't get to experience the wonders of lockdown that so many people have memories of. Engineers at my work place still had to do site visits. That was how I first caught Covid. Chronic Migraines and light sensitivity were my first major symptoms.

Second infection came from my, at the time, girlfriend who was a Primary School teacher.

Chronic Migraines signed me off work after this. I tried surviving for months on Statutory Sick Pay, but it was a srruggle. I never returned to work. My girlfriend left me (not just because of this), I lost my home, I lost my job, I moved back in with my family.

2021 - My mum worked as a nurse in a care home. She lost multiple co-workers and patients to covid. Despite best efforts, she brought covid back into the house and I caught it for my third time.

Chronic Pain, Brainfog, and dietary issues were the next major symptoms to crop up.

2022 - 4th Covid infection, because of mum's job again. By this point I am regularly walking with a cane, having difficulties with heart rate, blood pressure, breathing, etc. Fatigue is becoming a big issue for me.

Start seeing a Neurologist for the Chronic Migraines.

2023 - Physical health continues to decline. I'm less able to get out of the house, I'm in more pain, I'm less able to do physical or mental activities that were perfectly normal for me 4 years prior.

My GP still brushes off most of my issues. I'm told to "wait and see" for a lot of it.

On the night of October 6th, I try to kill myself.

My family and GP start to treat things a bit more seriously.

2024 - Official diagnoses of Pernicious Anaemia, Myalgic Encephalomyelitis (ME/CFS), Long Covid, POTS/dysautonomia, Chronic Pain, Fibromyalgia.

At this point I am mostly bedridden, but I can still occasionally get out of the house with enough preparation. Using crutches outside, cane indoors. First time using a mobility scooter.

Most trips out of the house are for medical appointments.

GP starts me on the lengthy process of trying out various pain medications to manage my full body, 24/7, pain.

I suspect I have hEDS, and MCAS, but GP is once again unwilling to listen.

We buy a wheelchair.

2025 - My car has to be sold. I can no longer drive without serious pain or fatigue.

I am bedridden for the majority of the time I am awake for.

I cannot sit up for more than 30 minutes without serious pain or fatigue.

I only leave the house for medical appointments, if we cannot arrange to do them remotely.

I get to see a friend for 2-3 hours in April. This is the first of 2 non-family, in-person, social interactions I will have this year.

The second is 2-3 hours in December.

My GP has reached the limit of what pain medication he is willing to prescribe, as none of what we've tried has worked. His medical advice is "learn to live with and accept your pain."

I hire my first carer in November. She doesn't understand any of my health conditions and we don't re-hire her.

In December my dietary issues become a major issue.

2026 - I spend most of my time asleep now, barely able to leave bed.

My diet has now become so restricted that we are certain it is MCAS.

I am currently going through the lengthy process of testing what foods I can eat.

At this point it is very little.

If I sit up for more than 10 minutes i am in agony.

If I think too hard, my brain stops working.

I have my windows covered in 3 layers to block the sunlight because too bright light will overwhelm me and my body/brain shut down.

I start to wonder what will happen to me when my parents, my only carers, die.

-----

This is not a detailed list of my journey. It's the bits I remember. I know I've missed things, and likely put some things in the wrong order.

I wish more people would mask.

Because I cannot afford to get any more ill, and I wouldn't wish even a fraction of my life upon even the worst people in this world.

#NEISvoid