chronicillnesswarrior

This might make me sound ableist, but do any chronically sick people still go to concerts? Specifically, people in wheelchairs? What has been your experience?

I’m into bands like Motionless in White, Skillet, Bad Wolves, Five Finger Death Punch, Disturbed, I Prevail, Starset, Breaking Benjamin, etc… I just wanna know what people’s experiences were like at these sorts of concerts, for an ambulatory wheelchair user?

I can walk around and whatnot but standing for long periods of time is a sure fire way to having me end up on the floor unconscious or worse.

I’m asking because I’ve never been to a concert and I have no idea what it’s like, but I do want to go to one eventually, when I have the courage to do so.

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #POTS #EDS #EhlersDanlosSyndrome #NAFLD #BPD #IBS #InterstitialCystitis #PTSD #Diabetes #Migraine #WheelchairUser #ambulatorywheelchair

So, I have quite a few chronic health conditions, but the two that give me the most pain are Ehler's Danlos Syndrome and Interstitial Cystitis.

As a result of this, I live in pain every day of my life. But I have good days and bad days. I have flares.

Today, strangely, is a very good pain day. It's nowhere near as far as it usually is. If I were to put it on a scale with one being the lowest and ten being the absolute worst... I'd give it a 3. On the average day, I tend to be around 5 or 6. So being feeling like a 3 is... Weird.

I'm so used to the level of pain I'm usually at. But today I feel so strange. It feels like something isn't quite right and it honestly makes me feel very nervous. And I have no idea why. I feel ridiculous.

Does anyone else feel like this when their pain is better than usual? I feel like an idiot.

#chronicillnesswarrior #ChronicPain #POTS #EDS #EhlersDanlos #posturalorthostatictachycardia #InterstitialCystitis #BladderPain #Jointpain #IBS #cramps #NAFLD #LiverDisease #Depression #Anxiety #BPD #Weird

Over the Christmas period there was a LOT of family drama that seriously upset me, which led to me comfort eating quite a bit.

In my last post, after my weight check and diabetes review, I proudly told you lovely people that not only was my diabetes unaffected, but that I’d also lost 19lbs.

Well. This morning I came across a couple of pairs of size 16 skinny jeans I bought myself just before the pandemic began. When I bought them at the time, I was really pissed because I couldn’t even pull them up past my knees/lower thighs. I threw them to the back of my chest of drawers and sulked.

So, I stared at the jeans, a bit disgruntled. Before finally deciding to give them a go…

And… They fit me PERFECTLY. I am ecstatic! I was once a size 20-22, and now? A 16! You can bet your ass I did a victory dance in my room. 😂

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #InterstitialCystitis #Diabetes #Migraines #IBS #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #BPD #BorderlinePersonalityDisorder #WeightLoss #SoHappy

Feeding Tube Awareness Week is celebrated nationwide the 2nd week of February annually. There are many reasons why one would have any type of tube. I have Gastroparesis, which means paralyzed or partially paralyzed stomach. I got my first tube, which was a jejunal (small intestinal) feeding tube, in 2017. The reasoning is because other steps we'd taken were not enough. I then switched to a gj (gastrojejunal-one part stomach/one part Intestinal) tube. When I stopped tube feeds, I got a regular g (gastric) tube. My current one is for venting/draining only. You may say yuck. I say helpful.
#feedingtubeawarenessweek2023
#minoritytubie
#oleyfoundation
#chronicillnesswarrior
#Gastroparesis
#patientadvocate
#socialhealth
nationaltoday.com/feeding-tube-awareness-week

Hey, everyone. How was your Christmas? Mine was pretty awful, honestly. I'll try and explain it as best as I can.

Around 4 years ago, my mum was talking to my big sister (her name is Dawn), and she told her about my health conditions/problems. Dawn then proceeded to accuse me of faking my health issues. Despite the many scans and test results clearly showing they are real. And then, shortly afterwards, she said that any gifts or presents I buy for people for birthdays/christmas (and everything else) are worthless because the money comes from a 'government handout' (disability benefits). After learning this, I refused to talk to her unless she apologises. So, we didn't talk for several years.

My little sister (Jess) gave birth to my nephew in 2021, and I love him very much. Since Dawn doesn't live near us, she was only able to visit this passed Christmas, and she stayed at Jess's house for two weeks.

Originally, before Dawn announced she would be coming, the whole family was going to go to Jess's house for Christmas dinner and whatnot... But once she booked her tickets and everything, Jess said that I wasn't allowed to go to the event. I wasn't allowed to spend time with the whole family. Which REALLY upset me. So much so, that I seriously comfort-ate for a couple of weeks. I was binge-eating whatever I could get my hands on. And I spent the entire of Christmas day curled up in bed watching stuff on my laptop. It was my first Christmas alone and I hated it.

Anyway, that leads up to the good news. I was really expecting my diabetes to be so much worse, and I was expecting to have put on a lot of weight. So, I reluctantly went for my weight and diabetes check last week. After they recorded my weight, they told me that since last July, I've lost 20lbs! And my HBA1C blood test came back yesterday - it's not worse! In July it was 63, and as of yesterday, it was 62. Admittedly, it's not much progress, but considering I was expecting it to be a disaster, I feel pretty good.

Anyway - I'm sorry for this rant, I guess. I just needed to get it out. Thank you for getting this far, though. Have a great day!

#chronicillnesswarrior #chronichealth #ChronicPain #POTS #POTSUK #EhlersDanlosSyndrome #EDS #NAFLD #InterstitialCystitis #BladderPain #BPD #BorderlinePersonalityDisorder #Familydrama #Depression #PTSD #Migraines #Diabetes #diabetic #WeightLoss

Hi Mighty community. I hope all are having a nice start to 2023. I have an article that discusses my migraine diagnosis, ruling out other conditions and aids that have helped me over time. I hope that you will take the time to read it. Feel free to comment and share if you can relate to anything.

migraine.com/living-migraine/mobility-aids-shame #chronicillnesswarrior #PatientAdvocates #Migrainewarrior #NotAshamed

Every year, I always set myself difficult NYRs that I never manage to fulfil for some reason or another. It's usually something like losing 35kg/80lbs off my weight within months, but I never do it.

So, this year I've set myself two relatively simple ones that I think I'll be able to achieve by the end of the year, as long as I keep reminding myself. Hell, I might write them on my white board that's in my room so I never forget.

Number one: To learn to accept and respect my limits with regards to my physical health.

Number two: To know my worth and never settle for anything less.

What ones have you set?

Happy New Year, my lovelies!

#chronicillnesswarrior #ChronicPain #POTS #posturalorthostatictachycardia #EDS #EhlersDanlos #NAFLD #InterstitialCystitis #BladderPain #Diabetes #Migraines #Depression #BPD #BorderlinePersonalityDisorder #newyearsresolution #nyr #Happynewyear #goals

Please take some time to read my latest article. Let me know your thoughts.
#chronicmigraine #migrainedotcomcontributor #chronicillnesswarrior #patientadvocate
#socialhealth
migraine.com/living-migraine/long-hair