chronicillnesswarrior

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How do you say no to your little nieces, nephews and children?

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

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Joint Pain

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

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Since you all loved the photo of him the other day… I present - Loki being cute.

As I said, you all loved my beautiful Loki the other day. Today, he’s been curling up around my feet cus my blanket was too warm for him. I’m feeling much better today - the antibiotics have done their job, as have the heavy painkillers.

Thank you all for wishing me well. I hope you all have a fantastic and easy week ahead of you!

#chronicillnesswarrior #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #InterstitialCystitis #ic #bladderdisease #BladderPain #ChronicPain #Kidneyinfection

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Animal Intuition - He Knows.

So, I’m in the middle of an Interstitial Cystitis flare and possible kidney infection and I’ve been in so much pain with it and I’ve been utterly miserable. Mostly just curled up on my bed with a heat pad on my bladder area.

Loki has been the sweetest kitten/cat. Whenever I’m unwell he does tend to stay close to me. But earlier while I was half laying down, he just shuffled up to me, and laid right across my lower belly, nuzzling me and every so gently padding at my belly. He has completely melted my heart. He’s been doing it all morning. If I get up to get a drink or use the bathroom, he sits and waits and then when I’m back, he comes back and lies across my belly. 🥹

I love him so much.

#chronicillnesswarrior #ChronicPain #InterstitialCystitis #BladderPain #POTS #EDS #NAFLD #LiverDisease #Diabetes #Migraines #BPD #Depression #Anxiety

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Pleurisy and Animal Empathy

I know I keep making posts about my Loki, but you guys have no idea how much this kitten is helping me.

I’ve been diagnosed with Pleurisy again - the last time I had it was March 2021 and it was so severe I was hospitalised multiple times and the lower part of my right lung had collapsed. The pain was so bad, I was praying for something to kill me. It was truly agony. I couldn’t speak, because I was gasping for breath even when I was sat doing nothing. When the doctors asked me to tell them what had happened during that day, I could barely get more than two words out without sobbing and gasping for breath like I was slowly drowning. It was hell.

Thankfully, during the middle of last week I started to notice the early signs and was able to see my GP immediately, and get started on antibiotics and my inhalers. Which has helped massively but I’m still struggling to breathe and getting quite out of breath when I do basically nothing but rest.

Since I’m basically on bed rest and I’m in pain (more than usual), my mental health has been a bit rocky and been going downhill a bit. But Loki has been with me the whole time. He’s been curled up with me, or sitting/lying on my belly (and sometimes shoulder) and watching TV with me. And at night? He crawls under the covers and either curls up against my belly, or falls asleep on my pillow, at the back of my head with his head resting on mine.

He melts my heart and I’m so lucky to have him. Don’t ever tell me that cats don’t know or understand how we feel, or that they don’t care.

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #EhlersDanlosSyndrome #NAFLD #LiverDisease #Diabetes #Migraines #InterstitialCystitis #Depression #BPD #BorderlinePersonalityDisorder #Pleurisy #Asthma #ChestInfection #inhalers #TherapyPet #Empathy #Cats #Kittens #animaltherapy

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This kitty is too cute!

As some of you will have seen, the other day I made a post about my Loki always knowing when I need him, and the way he calms me down when I’m anxious or in pain. He’ll come over and curl up in my lap or by my side.

I’m so lucky to have him.

HOWEVER. This is what I was greeted with this morning. 😂 He was sat right on my chest, just staring at me. It was pretty unnerving. When I didn’t move, he let out this tiny squeak of a meow and then began patting at my face with his paw.

“Mum. Hey, mum. Are you awake? Get up, wench, and feed me. I’m STARVING.” 😑😂

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #LiverDisease #InterstitialCystitis #Diabetes #Migraines #BorderlinePersonalityDisorder #Depression #Anxiety #TherapyPet #TherapyAnimal #Cats #Kittens #TherapyPets

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Everybody… Meet Loki.

So, in recent months my mental health has rapidly deteriorated. There’s so much that’s weighing on my mind and it’s just slowly killing my spirit. I feel angry ALL the time. I’ve frequently had dark thoughts about self harm because I just, quite simply, can’t cope. It’s been torture and I can barely sleep. I contacted my GP and they’ve increased two of my antidepressants and have referred me on to a proper psychiatrist to discuss putting me back on my antipsychotics to level my moods and all that.

Last week (the 17th), was my birthday. And my little sister surprised me so so much… She bought me a companion. The most adorable little ginger kitten with blue eyes. He is GORGEOUS, and his name is Loki.

In the evenings he crawls into bed with me and either sleeps on my side (as shown in the pic - please excuse my fat belly), or next to my head on the pillow, where he’d gently lick/groom my forehead as I fall asleep. He’s such a quirky little guy, too. He always seems to sense when I’m upset, and he quietly climbs into my lap and rests his head on my belly, leg or chest. He’s just the cutest little guy.

Anyway… I just wanted to show him off, haha. I hope you’re all doing well and staying hydrated in this awful humidity and the heat. Yesterday it reached 30°C and there was no breeze or wind whatsoever. Every breath felt like it was going nowhere at all. It was awful. Anyway.. Have a great week!

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #InterstitialCystitis #NAFLD #LiverDisease #Diabetes #Migraines #BorderlinePersonalityDisorder #Depression #Anxiety #TherapyPets #Therapy #Stress #Kitten #EmotionalSupportAnimals

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I feel so relaxed…

So, for once I decided I’m going to make a positive post! Here goes nothing…

In recent weeks I’ve had the money to buy all new furniture in my room, since all my old stuff was over 20 years old and was dying a very slow death. So I bought a chest of drawers, a bedside table and a desk.

It’s taken a while and a lot of mum’s help to put them all together and move the stuff around in my room. Take the old stuff out, put the new stuff in and then go through all of my clothes and whatnot.

I ordered a new LED lamp that I can either make brighter or more dim, and it has different types of light as well, which I thought was pretty nifty.

Anyway, now I have my desk, I’ve spent this evening going through my notes for my writing project(s) and what I hope will one day be my debut novel, with my laptop playing Grey’s Anatomy for background noise, and I’ve had a lovely cup of tea.

I feel so utterly and completely relaxed. I feel so at ease! It’s almost like magic. My room is spotless, and somehow so is my mind. My stress level has dramatically dropped! This is absolutely brilliant! I have my own little safe haven now.

I hope you’re all having a great week so far!

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #BorderlinePersonalityDisorder #NAFLD #LiverDisease #InterstitialCystitis #Diabetes #Migraine #author #AspiringAuthor #Relaxed #peaceful #Depression #Anxiety #Stress

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My New Tattoo

Hey, everyone! I hope you’re all okay. I just have a question for you all.

Does anyone get a mild fever after having a tattoo done? I had a fairly big one on the top of my arm on 13th May and everything was fine - it’s healing perfectly. But I did have chills for a day or so.

Last Tuesday (30th May) I had another one, but much smaller, on the back of my wrist. Visually, it’s healing very well, too. It’s not itchy - it looks fine.

But today I’m really freezing cold. I’m in PJs, my fluffy dressing gown and my fluffy blanket. I’m only JUST beginning to warm up.

I’m just wondering if anyone else has this problem? I’m certain there’s no infection. But I’ve been told my immune response tends to be a bit overkill. My white blood cell count goes absolutely nuts. Do you think that might be what’s happening?

Thanks in advance!

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #BPD #NAFLD #InterstitialCystitis #Diabetes #Advice

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I wish people would take my weakened immune system seriously…

All my life, I’ve caught bugs, colds and flus very very easily. But in the last ten years or so, it’s been much worse. Because of this, I have every vaccination available to me. The flu one, the pneumonia one, the meningitis one, the hepatitis ones, and five COVID vaccines. I avoid sick people like they literally have the plague.

But then I get my sister and nephew that come over, and the gremlin will crawl all over me. Which I don’t mind. But then just as she leaves she tells me that he’d been throwing up ALL NIGHT.

I run and wash my hands again (I do this repeatedly when he’s here cus my nephew likes to slobber). But, right on schedule… 3am this morning I wake up and had to sprint into the bathroom and even then, I didn’t make it to the toilet to be sick. I projectile-vomited all over the sink. I then spent nearly an hour curled up on the bathroom floor, shivering and being sick. My stomach muscles are so sore. My head hurts.

She KNOWS I’m immuno-compromised. Yet she repeatedly pulls this crap when she feels lonely and wants to spend time with someone.

I’m just really fricking frustrated and sore. 😞

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #ImmuneSystem #immunosuppressed #StomachBug #stomachflu

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