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Little Victories

I’m actually pretty pleased with myself today.

This morning I went and had my flu and Covid vaccines done. Then I came home and I changed my sheets and bedding, followed by a lovely hot shower, and then I wrote two pages of my novel after being stuck with writer’s block for ages. I’m a little sore after all the movement, but I got through it. All over and done with now - I can rest. 😌😴

My GP is always telling me that I should celebrate every victory - even the itty bitty ones. I’ve made myself a lovely hot chocolate with a dash of Bailey’s Original as a treat, and I’m huddled up with my fluffy hoodie on now, all cosy like.

#chronicillnesswarrior #ChronicPain #POTS #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #EDS #EhlersDanlosSyndrome #Jointpain #jointhypermobility #InterstitialCystitis #BladderPain #Diabetes #NAFLD #LiverDisease #BPD #BorderlinePersonalityDisorder #Depression #Migraines #sciatica #BackPain #littlevictories

41 reactions 6 comments

How do I explain myself to my dentist…?

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

16 reactions 5 comments

Infections and Insomnia

Hey, everyone. I hope you're all doing well!

I just had a question to ask...

So, from 14th April and up til today, I had a raging sinus infection. My eyes were so swollen, and you could actually SEE my sinuses above and around my eyebrows and eyes. My whole face ached so fiercely and I often ended up in tears because of it. Which made things so much worse.

At night time, I'd crawl into bed at 9pm and according to my mother, I was asleep within minutes (she could hear me snoring faintly). Which is very weird, because I have pretty bad insomnia. It normally takes me hours to fall asleep and even then I usually end up having to get up to pee multiple times.

This isn't the first time my body has done this. Nine years ago I developed a very serious case of tonsillitis. My GP called an ambulance because my fever was at degrees centigrade. For the entire of the ambulance ride I was drifting in and out of consciousness and by the time we arrived at the hospital, I started having seizures because my fever was so high. I don't remember any of this - I was so out of it. I had to stay in the hospital for two weeks, and for about 90% of my stay there, I was asleep.

This now happens every single time I get an infection. Doesn't matter what type, though. It could be a UTI, laryngitis, chest infection, winter vomiting bug, etc. It's like it knocks me out.

So, I guess my question is... Does anyone else have experiences like this? I'd love to know how you handle it and whatnot.

Have a great day, everyone!

#posturalorthostatictachycardia #POTS #POTSUK #EhlersDanlos #EDS #ChronicPain #chronicillnesswarrior #NAFLD #LiverDisease #IBS #BPD #InterstitialCystitis #ic #Migraines #Diabetes #Infection #Insomnia #jointhypermobility #Advice

2 reactions 1 comment

Joint Hypermobility and Chiropractor

So, my doctors strongly suspect I have hEDS. I have a fair few symptoms, and my rheumatologist is “pretty sure” I have it. My joints regularly scrape in their sockets and crack extremely loudly. More often than not I’ll be doing something perfectly mundane and all of a sudden, people hear a loud crack and they whip their heads in my direction and ask what the hell they just heard!

Anyway… For a very long time I’ve wanted to see if a chiropractor would help. Or would it make it worse? I dunno. I guess I just want some advice before I fork out for the assessment fee!

#ChronicPain #EDS #HEDS #POTS #Jointpain #jointhypermobility #Chiropractor #PainfulJoints #Advice

5 reactions 4 comments
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I feel better!

I absolutely SMASHED my steps goal today! My daily goal is 6000, so I’m well over. I feel quite tired, and a little bit sore… But I also feel good for it!

Last week, when I hit 10k, I was left in pain for days because I was stupid and didn’t respect my own limits. But today I did it slowly, bit by bit. Rather than doing it all in one go, alongside my sister who always speed walks, leaving me to practically jog to keep up with her, I took my time.

Today I went for three walks, at my own speed, and I took breaks during each walk. I also took my toddler nephew to the park, which we both really enjoyed.

Anyway… I just wanted to share something positive for a change, haha! I hope you’re all doing well. 😊

#chronicillnesswarrior #ChronicPain #POTS #EDS #Dysautonomia #NAFLD #LiverDisease #Diabetes #Migraines #jointhypermobility #BPD #Depression #Anxiety #obese #InterstitialCystitis #Exercise #Walking

16 reactions 7 comments
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10,000 steps in one day!

It has been many, many years since I last managed to take over ten thousand steps in a single day! But, I’m very pleased I managed it.

With the help of my little sister, I’m walking more and more and my stamina is slowly increasing! As is my strength. The weight that I’ve so desperately wanted lose is now practically falling off!

I’ve got this! 💪

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #EhlersDanlosSyndrome #EDS #jointhypermobility #Jointpain #BPD #EUPD #NAFLD #LiverDisease #Diabetes #WeightLoss #InterstitialCysitis #Epxercise #Fitbit #happy

28 reactions 5 comments

Has anyone tried LDN? #Fibromyalgia #Depression #chronicmigraine #jointhypermobility #IBS

Hi, you all! A couple of months ago my PA who I see for fibromyalgia pain, pain from joint hypermobility, and chronic migraines put me on low dose naltrexone (LDN). This is supposed to work over time to increase the body’s opiate receptors and also increase the body’s opiate production. I’m starting to feel a bit more energetic and am keeping my fingers crossed. It can be helpful also for depression and IBS (also issues for me).

Has anyone had any experience with
this medication? I’m curious to hear!


I think I need help…

So for my whole life, my eating habits have been extremely weird. I am VERY rarely hungry during the day, and often just the idea of food makes me feel like I’m going to be sick. Sometimes I go days with maybe just a mouthful of food here and there. If I eat at all, it’s usually in the middle of the night.

HOWEVER. When I reach my time of the month… I feel like I’m starving. My belly grumbles so loudly it actually hurts. And the longer I try to go without eating as much as my stomach wants, the more it hurts and it sometimes even makes me cry. Thankfully, my periods are EXTREMELY irregular. I have maybe one period a year at the most. But for that one week… I just can’t stop eating. Trying to ignore it genuinely feels like torture.

Does anyone else have anything like this? My friend is a nutritionist and she thinks I have an eating disorder. But I’ve been this way for my whole life.

Any suggestions are VERY much appreciated. Thank you all in advance.

#chronicillnesswarrior #ChronicPain #POTS #Dysautonomia #EhlersDanlos #jointhypermobility #NAFLD #BPD #Diabetes #InterstitialCystitis #Migraines #Insomnia #EatingDisorder #eatingproblems #pleasehelp


Hey Zebras! How many of you are talented in things like music, art, sport?

Apparently being hypermobile gives us advantages in life aside from just being particularly difficult. How many of you are talented in means of art, music, sport, etc?
My specialist believes that hypermobility gives us a strong advantage in these things. Most zebras I've met are gifted in one or sometimes all of these categories. So tell me, what's your talent?

#EDS #EhlersDanlosSyndrome #hypermobile #Hypermobility #ChronicPain #ChronicIllness #jointhypermobility #HEDS #ceds #VEDS #JointHypermobilitySyndrome #hypermobilityspectrumdisorder #begnignjointhypermobility


Makes sense now #jointhypermobility

So I've only found out about Joint Hypermobility recently, and I've got lightbulbs going off all over the place. So many things suddenly make sense! All the weird injuries and pain... I wish I had found out earlier, but it's nice to not just feel ridiculous.