Interstitial Cystitis

I’m currently a first time aunt (although my sister is 21 weeks pregnant right now) to an absolutely gorgeous and clever little boy named Oskar. He’s 22months old, and I absolutely love playing with him. I chase him, I crawl towards him on my hands and knees. I play rough with him (he loves this), and I tickle him until he’s belly laughing.

He is truly the light of my life - since he was born I’ve refused to self harm and I’ve really started taking better care of myself. But sometimes when we’re playing, I start to get pain or get really exhausted and I have to tell him no and sit down for a bit. But then he comes over, grabs my hands and tries to pull me up and make me follow him.

It really breaks my heart because I know he doesn’t really understand and he thinks he’s done something wrong. How do YOU communicate that you need a break? Is there a way to do it so he understands? He can get quite upset. Aside from his dad, I’m the only person that really plays with him and makes him laugh.

Any and all advice would be greatly appreciated!

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Jointpain #Diabetes #InterstitialCystitis #Migraines #Depression #Fatigue #Children #Advice

Hi, my name is Rachelvilateds. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ADHD #EhlersDanlosSyndrome #InterstitialCystitis #Narcolepsy

Hey, everyone. I hope you’re all doing a lot better than I am.

For the last four days it’s been about 30°C and I’ve had enough.. Tomorrow it’s meant to hit 32°C.

I’m doing everything I can to stay cool and hydrated - I’m drinking between 2 to 3 litres of water/squash. I have a fan on me 24/7. Somehow, I’m managing alright overall - I haven’t fainted or blacked out. And at night time I’ve pretty much been falling asleep very very quickly when I get into bed.

HOWEVER… My joints are killing me. They’re a little swollen, very achy and sometimes even feel like they’re creaking, if that makes sense? It’s mainly my wrists, fingers, knuckles, elbows, knees and ankles. If I squeeze my fingers together or squeeze my wrists it makes the pain better. Which is weird but that’s what happens. But I can’t exactly sit here and squeeze every joint. I don’t have enough hands, haha!

Does anyone have any advice for it? It’s far too hot to wear my compression stockings - I’ve been keeping my feet elevated a little bit instead. Is there anything else I can do?

Thank you all in advance

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #BPD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #Jointpain #SoreJoints #PainfulJoints #Heatwave #toohot

I need to switch to a different pharmacy that will deliver to my home (I’ll probably use like Uber delivery or something…) I’m in the US. Does anyone have any input on what pharmacy has been the best for them? (Or conversely which pharmacies to definitely stay away from? Like I HATE CVS. They are the worst.)
I’m hoping for some info from fellow Mighty spoonies before switching. :) I’ve been using Walmart for years.

#EhlersDanlosSyndrome
#Migraine
#PTSD
#PosturalOrthostaticTachycardiaSyndrome
#ComplexPosttraumaticStressDisorder
#Autism
#ADHD
#ADHDInGirls
#Anxiety
#Depression
#LymeDisease
#MastCellActivationDisorder
#SensoryProcessingDisorder
#Gastroparesis
#InterstitialCystitis

So, when I was 7 years old I had a pretty horrific dentist experience. Basically, I had to have a tooth removed. But the dentist said that because it was a baby tooth, I wouldn’t need any numbing injections. He was dead-fricking-wrong. I remember some nurses holding me down, my mum shouting, and what I can only describe as a pair of pliers. I remember screaming, and there being a lot of blood.

So for years I’ve been terrified of them. I couldn’t even walk on the same street as a dentist’s office without having a panic attack. In the last couple of years I’ve had to have my GP give me diazepam (Valium) just so I can sit in the damn chair. I’ve slowly built trust with my dentist, and I don’t need a huge dose to get me in the chair anymore.

Anyway, late last year I finally got to a point where I no longer needed to have any more work done. I’ve had four teeth removed (thankfully back ones), and several fillings. At least 9 of them. Since I started going regularly a couple of years ago, I’ve learned how to brush and floss properly. And according to the dentist at my last appointment last year, since brushing and flossing properly, I’ve managed to reverse the remaining decay I had left. Or, the start of the decay that was there.

But here’s the thing… The last 3-4 months have been so so stressful. I really stopped taking care of myself. I stopped washing regularly, I stopped eating properly and consumed loads of sugar (I’m type 2 diabetic), I stopped brushing and flossing my teeth, I barely took my medication… I was spiralling into an abyss. I felt angry and hopeless literally 24/7…

Then 6 weeks ago I spoke to my GP who then increased one of my antidepressants. Finally, a few weeks ago I started to feel a bit more like myself and I started taking care of myself better.

I’m overdue for a dental checkup and I’m just so scared. I’m worried they’ll be mad, and lecture me or judge me. And I’m also worried that I’m going to have to have more teeth removed… Any time I think about making the appointment I panic all over again and get really overwhelmed… What should I do? How do I explain myself in a way they’ll understand?

Any and all advice is greatly appreciated and welcomed.

#AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #POTS #EhlersDanlosSyndrome #EDS #jointhypermobility #NAFLD #LiverDisease #BPD #BorderlinePersonalityDisorder #Diabetes #Migraines #InterstitialCystitis #IBS #GERD #AcidReflux #Dentist #mouthproblems #Advice #Depression #Anxiety #panic