liver disease

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

My health issues make it really difficult to exercise - particularly the Postural Orthostatic Tachycardia Syndrome. I faint pretty often, and because of that, I've always been terrified of doing any major exercise.

But in the last few weeks, I've been slowly building up my tolerance when it comes to walking. Any time my sister comes over, we go for a walk that usually lasts just over an hour. I monitor my heart rate on my Fitbit, which is an absolute god send since it also helps me keep track of my weight loss progress and how well I sleep.

My sister, despite being 5ft 1in, walks VERY fricking fast. I sometimes have to tell her to slow down, because I just can't keep up with her, haha. And I'm 5ft 7in! I have stumpy legs, damn it. But the fast pace means I lose more weight, so I try my hardest to catch up to her, hah.

I'm really proud of myself. My step goal on my Fitbit is 6,000 steps a day. Which probably doesn't seem like a lot, but for me? With all my issues? I'd say 6,000 steps is ideal. Last week I managed to reach my step goal twice! Today, I walked into town (about 1.3miles), and reached 6k steps again! So, this week, I'm aiming to reach it three times, and maybe next week I'll try and go for four!

I'm loving being close to my sister. It's only in the last 18months that we've bonded. I love what we talk about when we're out walking. I love my nephew and all the cute little cooing noises he does, like he's butting into the conversation, haha.

I'm really proud of myself. My GP always says; "Remember, it's important to celebrate EVERY victory - even the little ones."

So... I'm going to.

#chronicillnesswarrior #ChronicPain #posturalorthostatictachycardia #EhlersDanlosSyndrome #NAFLD #Diabetes #IBS #InterstitialCystitis #GERD #EnlargedSpleen #Migraines #LiverDisease #Dysautonomia #BPD #Depression #Anxiety

Hey, everyone. I hope you’re all okay and staying safe and well.

I have a bit of a strange question. I have several chronic health conditions, including Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Ehler’s Danlos Syndrome, IBS, Non-Alcoholic Fatty Liver Disease, Diabetes, Interstitial Cystitis, Migraines, Gastro-Esophageal Reflux Disease and some mental health difficulties. So there’s a lot of stuff going on.

Anyway, I regularly get stomach aches, or just an iffy stomach in general. I’ll sometimes go 2-5 days with a very minimal amount of food because I’m just not hungry and I feel sick. I’ve had lots of tests and scans and beyond having a Hiatal Hernia and some inflamed blood vessels in my stomach lining, they can’t find a reason behind this. But I’ve recently discovered that when I feel like this and/or I’m bloated… I can get it all to go away by drinking something fizzy. Doesn’t matter what it is, but as long as it’s fizzy… It almost instantly makes it better.

Does anyone have any idea why this is? I do struggle to burp a lot - I always have. When I burp, they are tiny and don’t make much difference, even after I’ve drunk the fizzy stuff. I’m completely open to suggestions. I take all kinds of medication for my IBS and GERD. Antacids, Buscopan, Mebeverine, Metaclopramide (an anti-sickness). But they have a minimal effect when I have these stomach aches, bloating, nausea and loss of appetite.

Thank you all in advance! Any suggestions would be greatly appreciated. Stay safe!

#ChronicPain #chronicillnesswarrior #POTS #EDS #Dysautonomia #GERD #IBS #nausea #NAFLD #LiverDisease #InterstitialCystitis #Diabetes #Migraines #BPD #HiatalHernia #Advice

So, for years now my immune system has been awful. My doctor says it’s because of the variety of health issues I have. A heart condition, liver disease, kidney damage, enlarged spleen, diabetes, etc… When the pandemic started, I was told by every single doctor that I am at “extreme risk”. Tomorrow I’ll be having my 5th vaccine. I’m not looking forward to it.

Anyway, since my nephew was born nearly a year ago, I seem to be catching ever bug, virus on infection that’s going around. I’m always careful - I wear a mask where I can, I wash my hands many many times in a day, I use hand sanitizer, and I still do social distancing.

Last December I had a nasty cold that took nearly two weeks to go. Then in February I caught another one that knocked me on my ass. In May, my nephew passed on a particularly nasty/severe stomach bug that landed me in hospital. Five weeks ago I had ANOTHER cold… And now…? My baby nephew has passed on Bronchitis to me. I’m so exhausted. I haven’t felt this rough in a very long time. Before you ask, yes, I’ve done COVID tests. I’m negative.

My fever keeps going up and down, with the highest being 39.9°C. I saw a doctor today, who said my lungs sound like Rice Krispies, what with how much they’re crackling and popping. I’ve been given antibiotics and two different inhalers today, since I keep coughing so bad I end up choking.

Is there a way to improve my immune system? I can’t exactly get mad at a one year old baby. He really loves to play with me (mainly because no one else does - not even my sister), so I absolutely hate it when I have to stop because I’m in pain with my other conditions or feeling too unwell. I put him above everything else. I just want to try and find a way where he won’t get me sick all the time.

Any advice you have would be GREATLY appreciated. And thank you all in advance.

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #LiverDisease #NAFLD #EhlersDanlosSyndrome #EDS #BPD #Diabetes #Migraines #InterstitialCystitis #WeakImmuneSystem #Immunocompromised #Advice

I know that a lot of us feel unwell most of the time. That probably wasn't a very well phrased title. But what I mean is... Do you get easily upset when you have a cold/flu/infection?

As an example, back in May I picked up a very nasty stomach bug (that my baby nephew ever-so-lovingly decided to share)... And for the entire day, I just kept breaking down into tears. For pretty much no reason. I don't know if it was frustration or if I'd just had enough... But I've noticed it happens every time I'm unwell.

I've had a cold for about a week now (several COVID tests have come back negative, despite me being certain this isn't an ordinary cold), and I just keep breaking down at the drop of a hat. My sister brought me a slice of my favourite cake from my favourite bakery and I burst into tears. The level of emotion is crazy. I don't like crying even when I'm feeling okay, so when I suddenly start sobbing, I get angry at myself and then usually end up crying more... I keep wondering if it's simply exhaustion? I'm immuno-compromised, so what other people would call a mild illness, is usually something that knocks me off my feet.

I'd just like to know if there's anyone else out there that's like this? And if you know of a way I could maybe minimise the tears? I feel so silly.

#chronicillnesswarrior #ChronicPain #POTS #EDS #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #cold #Flu #BPD #Migraines #IBS #exhaustion #tired #emotional #unwell #immunosuppressed

In October of 2017, I had a loop recorder inserted to keep an eye on my heart. For those of you that don't know, a loop recorder is a small device (about the size of a small USB stick) that is basically an internal ECG.

But since I've had it in, I've had pain around it, and spontaneous bruises that really hurt and come out of nowhere. Thankfully, I just received a call saying that they can take it out! And I'm so happy. But I'm worried about the procedure.

Having the thing put IN was bad. I ended up with an infection and the pain was really bad. They had to sedate me to put it in because I was panicking so much.

From what I've found online about how they remove it, it looks like it's really gonna hurt. Has anyone had it removed? What was your experience? Any advice is greatly appreciated.

#POTS #posturalorthostatictachycardia #EhlersDanlosSyndrome #looprecorder #ecg #chronicillnesswarrior #InterstitialCystitis #ChronicPain #LiverDisease #NAFLD #Migraines #Diabetes

I’m scheduled for an initial evaluation for a liver transplant (due to cirrhosis from autoimmune hepatitis) in a couple of weeks. What should I expect from this set of appointments? How can I prepare? What questions should I ask?

#AutoimmuneHepatitis #LiverTransplant #LiverDisease #OrganTransplant