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Is this really my life?

My new jewelry apparently. Some times it just feels like this is happening so fast. Or that it cannot possibly be real. What happened? Wasn't I just taking my daughter to preschool and rushing off to squeeze in a few hours at the Children's Museum after that let out at noon? Wasn't I just taking 2 mile hikes with my dog and getting annoyed that my watch didn't think my heart was going quite fast enough for that to count as exercise yet it would log the 2 or 3 spikes while I was sleeping? But that's the thing, isn't it? I could never actually pull off the act of being healthy and the harder I tried the more I just damaged my body. Just because no one saw the damage didn't make it not real. And it's not my fault that this time it's just too much to ignore anymore and there is truly no going back. At least in some ways I am finally actually getting better. I'm actually hydrated. My skin isn't cracking any more. I have only new bruises this week, not new cuts or tears in my skin. And there are plans to have people come and help me more, so I'm not forced to just put on a happy mask anymore and just do it anyway because it has to be done. #EhlersDanlosSyndrome #Pain #ChronicHealthConditions


Help. My parents want to force me going over my limits! #help #GettingHelp #Parents #LifelimitingIllness #limits #JuvenileIdiopathicArthritis #Pain

My parents and I recently had a pretty heavy discussion about me not doing enough exercise. They think I should just go through the pain and it will get better and I could do more without being exhausted or in unbearable pain. I know that it won't and I also know that I already do more than I should every day to just live a nearly normal life. But it doesn't matter what I say, they think they are always right. Now I convinced them to discuss it with my therapist, kinda because I don't want to face my parents alone.
Nobody needs to tell me that exercising with a chronic disease is good. I know that, I hear it everyday. But I also now that I can't take it for long to ignore my limitations. I will just pass out at one point. It will be too much pain and exhaustion.
I really need your help. You can just comment things from your experience, from others or what you read or heard about this topic (pls no "exercise is good" comments) and I would be pretty thankful. The best would be links (articles or videos) that could help. I just need more things (coming from others) that I can say to my parents because apparently it doesn't matter what I say. #ChronicHealthConditions #Exercise #Pain condition #arguments


Self image and health issues? #CheckInWithMe

Over the last year or so I’ve been dealing with a health issue that’s been wearing on my self image. I feel broken, like I’m not good enough and my body isn’t doing what it’s supposed to be doing. With the pandemic, it’s been starting to get to me that much more because I don’t have enough to keep myself and my mind occupied and busy, so I find myself starting to sleep back into depression. Does anyone else have this happen to them? How do you fight it (aside from the obvious; I can’t afford therapy right now as I’m not working because of the pandemic)? #ChronicHealthConditions #MentalHealth #Depression #pandemic


It took them two years to tell me that I have sleep apnea!

In 2018 I had a device put on my wrist and finger to measure my oxygen levels as I sleep. I have always had sleep issues. Both falling asleep and staying asleep. So my doctor referred me and that’s what they did. I got told a couple of weeks later that the test came back NORMAL. I never heard from the sleep clinic again... Until today.

I was told that I have sleep apnea and that I stopped breathing during that test. I was told that I need to go and collect a CPAP machine.

It’s completely blown my mind that it’s taken TWO YEARS to tell me that I stop breathing sometimes when I sleep.


#chronicillnesswarrior #ChronicHealthConditions #POTS #EDS #BPD #NAFLD #InterstitialCystitis #Diabetes #SleepApnea #CPAP #Shocked


The same thing happens twice a year, EVERY year.

So ever since I was a baby, my birthday and Christmas has always been bad luck for me. Usually in the week of Christmas and the week of my birthday (which is today) I get sick.

My dad says I get too excited and make myself sick. 😐

Colds, flu, UTIs, sickness bugs... ALWAYS those two weeks.

Does this happen to anyone else? Do you think I genuinely get too excited? I actually woke up this morning, went to the bathroom and brushed my teeth before I remembered today is my birthday. 😂 So I don’t think I’m excited. My luck just sucks.

#chronicillnesswarrior #ChronicHealthConditions #POTS #EDS #NAFLD #BPD #InterstitialCystitis #Diabetes #Birthday #Christmas #FeelingOldToday #Turn26


I’m really nervous...

I have an appointment with Gastroenterology next Thursday (the 11th). It’s at the hospital. I’m terrified of picking up the Coronavirus. I have masks I can wear but I can’t help but feel like there’s a small chance of catching it still. My immune system is bloody useless at the best of times. I daren’t think of what could happen if I get this virus.

Do you guys have any suggestions?

#chronicillnesswarrior #ChronicHealthConditions #POTSUK #EDS #BPD #NAFLD #Diabetes #InterstitialCystitis

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The Beginning of my Weight Loss Journey!

Just as the title says; this is the beginning of my weight loss journey. I’m cycling nearly every day and I feel better for it. This photo will be used as a “BEFORE” picture that I’ll use against my AFTER picture when I lose weight.

(Please excuse the mess, I was in my mums room).

#ChrinicIllnessWarrior #ChronicHealthConditions #POTS #EDS #BPD #NAFLD #Diabetes #InterstitialCystitis #LosingWeight #Cycling #BeforePhoto


I don’t think I’ve ever been more proud of myself.

I should explain that four years ago I lost a job I loved because of my illnesses. I worked as a theatre support worker during operations at a nearby hospital.

I absolutely loved that job. I tried so hard to always be a model employee, to do my job well. But one day, during a kidney removal I started to suddenly feel hot and tingly all over. When I woke up I was in a hospital bed; the nurses and staff in the operating theatre had carried me onto a trolley and sent me around to A&E.

I discovered soon after that accident that I’d developed Postural Orthostatic Tachycardia Syndrome... I was given time off work but eventually theu decided to cut
me loose. And along with the POTS my bladder condition (insterstital cystitis) started to flare up and I ended up on morphine for a while. Luckily, I managed to kick that habit and now I’m taking Dihydrocodeine for my bladder and the joint pain I get from Ehler’s Danlos Syndrome.

Naturally, after I lost my job I was devasted. I fell into a deep depression. My health continued to get worth. It seemed like every time I went to the hospital for a check up, I was told I had something else wrong with me. Like Non-Alcoholic Fatty Liver Disease thats turned into Cirrohsis, and shortly after THAT diagnosis I was diagnosed with Type 2 Diabetes and I’m currently waiting for an Endoscopy on my stomach because I seem to have nearly all the symptoms of stomach ulcers.

I started to neglect myself. I didn’t take my medication, I stopped looking up and down the street before crossing the road, I stopped showing/bathing regularly. I’d go weeks, (which is gross - I know) without cleaning myself up. Everything was so exhausting. And I just didn’t have the energy.

A few weeks ago, however, I decided to start taking care of myself. I started taking my medication on time every day, I started bathing three times a week (our boiler is small and there are 5 of us in this house), I started styling my hair and putting on my face creams and wearing a little bit of make up. I feel good. But even more than all of this I’m exercising at least once every other day on my new bike.

I know these things are so small and don’t mean much... But I’m so proud of how far I’ve come.

#chronicillnesswarriors #ChronicHealthConditions #POTSUK #EDS #NAFLD #BPD #InterstitialCystitis #Diabetes #feelingbetter #Proudofmyself #Pleased #Being Sensible #LosingWeight #Cycling

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I bought myself a Fitbit Versa Lite!

Whilst it was on offer I bought myself a Fitbit Versa Lite to help me keep track of what I eat, how and when I exercise, etc.

I’m having a rest day today - I really hurt my knees by pushing myself just past my limit on the bike.

My family and friends are being so so supportive and it’s making me feel pretty great.

#chronicillnesswarrior #ChronicHealthConditions #POTS #POTSUK #EDS #BPD #NAFLD #Diabetes #InterstitialCystitis #Exercise #Cycling #feelingfree


I’m being so good and I’m feeling stronger!

For the longest time, I didn’t take my meds at the time I was supposed to. I was always late taking them. But for the last month, since I was put on Gliclazide (a diabetic medication used to lower your blood sugar quickly) I’ve been taking my medication religiously. At the exact right time or on the dot. And I feel so so much better for it.

I’ve been cycling for at least 20minutes nearly every day since I bought the bike on the 19th May. I feel so much stronger. It’s gotten to a point where I actually like the ache that’s left in my legs after I’ve finished cycling.

Just being able to do something that helps my body AND have it be something I really enjoy is amazing. I don’t feel lazy anymore. I don’t feel useless and powerless. I’m truly happy.

#chronicillnesswarrior #ChronicHealthConditions #POTS #POTSUK #EDS #BPD #NAFLD #Diabetes #InterstitialCystitis #Exercise #Bike #Cycling #feelingbetter #BeingGood