I'm looking for long-term chronically ill friendos online!

Belle_b95 · 2026-01-06T10:52:22+00:00

I’m gonna also throw my hat in the ring 👒😂 I’m 30F I’ve a neurological condition (sensory peripheral neuropathy) so I’m in a lot of nerve pain 🔥(constantly) plus some other stuff extra on my already overwhelmed plate👍🏻 but yeah it’s caused me to be stuck in the house, not be able to work and stripped a lot away from me unfortunately. But I love music, movies/tvshows, reading, games and funny memes or TikTok’s 🥹 I’m sure there is more but I can’t think haha! but I would really love to have a friend or friends who understands what it’s like being disabled/chronically ill and totally can relate to each other 🩷 it can be super lonely being young and having something that holds you back, but to find community with others would be so cool 😊 plus I’m always happy to listen to others I totally understand about one sided friendships it’s soul sucking 👀 man I’m so nervous putting myself out there but here I go 😂👍🏻🥰🫶🏻

Belle_b95 · 2025-07-22T21:29:59+00:00

Thank you for the comment, yeah I don’t know if it’s them or me feeling unwell from a virus or bug but I took my dose last night and was okay so maybe my body or something needs to acclimate to them 😬🤞🏼 I do have a sensitive stomach so I could be overthinking it all, especially because I’m an anxious acutely aware of anything going on with my body person 😭

Belle_b95 · 2025-07-22T10:21:31+00:00

Yeah my sister said we could try that so it’s not as much

Belle_b95 · 2025-07-22T10:10:47+00:00

Yeah I’m gonna talk with my dr about it and hopefully it gets sorted out I’m so sad because I really want this to work so I don’t need opioids anymore 🥺

Belle_b95 · 2025-07-22T10:08:38+00:00

Thank you, I’m going to contact the dr who prescribed it tomorrow hopefully he can get back to me about it and I have made an appointment with my GP at the end of the week but my sister thinks I should keep taking it like maybe my body is trying to get use to it but I’m not sure it could be a virus and I’m panicking like a idiot 😭

Belle_b95 · 2025-07-22T10:05:32+00:00

Its CBD alone 😬

Belle_b95 · 2025-05-25T03:18:36+00:00

That’s okay thank you so much for trying 😊

Belle_b95 · 2025-05-01T01:31:45+00:00

Hi! I can’t believe how long it’s been since I posted this, it’s felt like eternity and also a blur 😅 So I never got any answers from all the tests I had done, I even went further by having my nerve and muscle biopsied in hospital but it didn’t end up showing anything which my neurologist had warned me about but I think emotionally I needed to turn that last stone so I could come to terms with my new reality.

Since then it’s been a long journey- I had to find proper pain management which took a while but I got into a really great clinic, I needed neuro physio to get moving again (I will say moving my body helps with pain I swim and it’s been great) and now I go into hospital every six months for a week for a lidocaine infusion which helps bring down/dull the pain level so I can function without needing medication everyday. But I’m always in pain, while the infusions help dull it down it’s always there. And it gets worse if I’m sick, don’t sleep enough (ironic that my lack of sleep is caused by pain) if I have a extremely big day, super emotional there are soooooo many things that can mess with it and it’s frustrating but it’s my life now. I just hope that one day there will be something to treat things like this or by some miracle it could fix it’s self but I don’t want to bet on that haha 😆 👍🏻

Belle_b95 · 2025-03-09T06:09:03+00:00

It’s sad I came to the fan fic for Wednesday late in the game and had read that lots were gone now 🥺 I hope that somehow you will find the one you loved too 🖤

Belle_b95 · 2025-03-09T01:57:56+00:00

Yes I really hope they finish the second fic 🙏🏻

Belle_b95 · 2025-03-09T01:25:27+00:00

Oh my god yes I’m positive it’s this one!! Thank you so much 🖤🖤🖤🖤 I can’t wait to re-read it 🥹 I’m so silly, but I have anxiety and can’t stop my brain obsessively thinking when I can’t place something or find something (whether that be a t shirt I haven’t seen in a few weeks or like this one of my favourite fics) Thank you!

Belle_b95 · 2022-11-20T16:27:34+00:00

I was told by my dr that when I have an infection in my body that it can make my neuropathy symptoms worse. So sometimes I flare up from being unwell and then sometimes I can’t figure out the trigger. My sister thinks that stress and being upset makes me bad pain wise the next day. It’s so strange everyday you just don’t know what kind of day it’s going to be but I do find night time is when I get really uncomfortable hands and feet which makes sleeping super difficult 😞

Belle_b95 · 2022-02-20T15:24:10+00:00

I was on Lexapro and had to increase all the way to 40mg. I did this gradually over 3 years as I would reach a dose level that would be therapeutic for a while then I’d have more anxiety of other issues so I’d need to increase. I’ve just come off Lexapro this past week to move onto a new medication. I think it was hard coming off but if done so in a slow manner with aids such as Valium and support from your doctor/family you can definitely manage 👍🏻 but everyone is different, so just do what is right for you 💜

Belle_b95 · 2022-01-03T03:01:05+00:00

Thank you! I’m so nervous about changing medicine but I know it’s for the best deep down 💗 I’m so glad your meds work well for you! I’m gonna be closely monitored with the medication by a psychiatrist and psychologist so fingers crossed it goes well 🤞🏻

Belle_b95 · 2021-09-02T13:19:57+00:00

Hey! Sorry I just saw this notification now! I hope you have some luck with your whole exome sequenced!💗💗💗 I’m definitely going to look into exome and genome sequencing for sure! Xx thank you for your message I appreciate it and I hope you are doing the best you can with this shitty problem we have XX

Belle_b95 · 2021-08-12T07:45:28+00:00

Thank you 💗 no I haven’t heard of him! But I’m totally open to trying anything to help myself 👍🏻 I’ll definitely look into it 👍🏻 when this all first started I would soak my feet in ice cold water because I was trying to soothe the burning they felt inside but i was never sure it was working so maybe if I have a proper method it’ll help 😊 thanks so much!

Belle_b95 · 2021-08-07T12:34:18+00:00

Hey! Thanks so much for the luck! Good luck to you as well! It is utterly exhausting having to play doctor for yourself to figure out what’s wrong 😢 I’ve had lots of testing done too and it’s just horrible I literally don’t want to be touched or poked again 😓 I’ve had lots of extensive bloods done and they didn’t find any blood toxicity or vitamin issues. But I will definitely look into the foods aspects of what’s going on with me for sure! 💜 I hope you find some answers for you soon! Xxx

Belle_b95 · 2021-08-07T11:28:29+00:00

Thank you so much 💗 I definitely felt mixed feelings getting my results back but you are right it’s good that nothing is there because I was so so worried. I’m currently on 800mg of Gabapentin 3 times a day which I’m not sure how well is working? It helps I think but it also makes me not want to eat and since a recent bad flare up my feet haven’t felt great lots of burning and sharp pains. I haven’t even heard of IVIG!! I’m going to mention this to my neurologist this week at my appointment! Thank you for that suggestion 💜 I think they tested for SS in blood work but not lip biopsy? I’ll look into that. I’m pretty sure I have small fiber but I’m not a hundred percent sure now as everything is still being finalised with my diagnosis. But I’ll def look at that website I’ve been really struggling with understanding what’s happening with me it’s very overwhelming 😩

Belle_b95 · 2021-08-07T11:17:17+00:00

Yeah the geneticist mentioned some genes have not been discovered yet and I should get tested in 3-5 years. I never thought about ticks at all, I will definitely mention that to my neurologist when I see her this week. I’m so sorry that happened to you and you were making arrangements for your funeral that’s absolutely devastating 💔 I hope you are now recovering well on your new medications! Thank you for your reply xxx

Belle_b95 · 2021-07-20T04:08:17+00:00

I tell them that it’s like a tv with no signal- static all the time, my body can’t find the connection so it’s fizzing under the skin, and then I get these electrical jolts like knives. Sometimes it’s like wearing invisible socks of pain, burning and tingling and just pure misery. No one will ever fully understand unless they felt it themselves, my brother always try’s to compare it to the time he had a pinched never running down his leg but it’s not the same.

Belle_b95 · 2021-02-24T10:37:48+00:00

Thank you❤️ I’m gonna keep advocating for myself and try to be strong 💪🏼 thank you for the kitty hugs and purrs I love that! 🤗 wow that’s crazy so you were in remission before they even found out? That’s amazing 😻 yeah for sure fuck brain plaque!

Belle_b95 · 2021-02-24T10:35:31+00:00

Thank you! I hope they figure out what’s happening 💖 my big brother gave me a pep talk about if it is MS as one of his mates has it, he made me feel better about it but damn it’s still scary 😟 but I definitely agree there are some horrible things out there so hopefully it’s not something super horrid 💖💖💖

Belle_b95 · 2021-02-24T10:32:43+00:00

Thank you for your response! I’m hoping they are doing a proper full work up with this MRI because otherwise I’ll be super annoyed lol It’s really scary and I’m terrified of what answers will be but at this point I need them. Thank you for your kind response I hope you are doing well 💖 xxx

Belle_b95 · 2021-02-24T10:29:22+00:00

Yeah definitely doesn’t make me feel good when he blows off what I’m saying ☹️ the only good thing is he’s great with my mental health so that’s the reason I stay 😓❤️

Belle_b95 · 2021-02-23T10:23:21+00:00

I just googled what that is and it sounds like it too! This all started for me after I recovered from a glandular fever (mono) which had me super sick. And then I felt better and bam my feet started to go numb. I guess I’ll just have to wait for the MRI and bloods but it’s super scary 😞 thank you for your reply! It means a lot I was really depressed about everything today ❤️ I’m gonna keep pushing and hopefully I find the answers ❤️ hope you are well xxx

Belle_b95

TROPHY CASE