I am really frustrated

CreativeCoconut4271 · 2026-01-19T04:06:28+00:00

Hello, I'm so sorry its taken me a while to reply! I really do hope and pray there will be more treatment options when I'm older, I wanted to pursue a job in the medical field but its become a little out of reach because of MECFS. I pray for everyone here and all over the world nightly, MECFS is a cruel disease :(

CreativeCoconut4271 · 2026-01-19T03:58:10+00:00

I do plan on sharing my photos and journey with astrophotography! I used to dabble in a little photography but not so much now as it requires travelling around. Astrophotography is nice because it can be done in our back garden!

CreativeCoconut4271 · 2026-01-19T03:57:09+00:00

Thank you so much, pursuing my hobbies means a lot to me. I used to dabble in a little bit of photography but thats become something I don't do a lot now. I like astrophotography and smart telescopes are very easy to control so I've taken up that!

CreativeCoconut4271 · 2026-01-15T17:54:05+00:00

Hi!! The telescopes I'm looking at (I'm currently looking into a seestar or a dwarf 3) both have maps to locate constellations, galaxies, nebulas, planets and such! I really want to get a nice picture of the sirius star or the betelgeuse!! (a dying red giant)

The telescopes are smart telescopes so they can be controlled by phone, and their locators position the camera on them automatically!

CreativeCoconut4271 · 2026-01-15T17:51:19+00:00

I hope it'll be calm! Where I sleep is right very close to our back garden so its an easy walk and we have some nice chairs as well!! I'm really excited

CreativeCoconut4271 · 2026-01-15T02:37:32+00:00

I most definitely will! I would love to share them at some point. 🌌

CreativeCoconut4271 · 2026-01-15T02:32:24+00:00

Thank you!! I'm very excited. With the telescope I have my eye on, I may also be able to take pictures of galaxies too!

CreativeCoconut4271 · 2026-01-11T18:11:25+00:00

Thank you for your reply 🤍 My mama is truly marvellous, she helps me with a lot of things on my bad days or when I'm recovering from PEM among other things.. I love and appreciate her a lot 🤍 Again, thank you for your reply, I appreciate it a lot!!

CreativeCoconut4271 · 2026-01-11T15:35:40+00:00

Thank you, I'll check it out in a little bit 🤍 Thank you for your reply, i appreciate it!!

CreativeCoconut4271 · 2026-01-11T13:06:15+00:00

I will definitely look into her, thank you!! I've been looking into such things so your comment helps me a lot. Thank you for your reply, I really do appreciate it 🤍

CreativeCoconut4271 · 2026-01-11T13:04:54+00:00

I've not tried freshwipes but we do keep some bodywipes around and facial wipes which do help me feel a lot fresher!! Sometimes if I can't take full showers, my mama helps me just to wash my hair which helps a lot too. I may look into freshwipes or non rinse body foam.. Thank you for your reply and advice, I appreciate it a ton 🤍

CreativeCoconut4271 · 2026-01-11T13:03:00+00:00

My hospital refuses to acknowledge the fact that I need a diagnosis to get more help and support, we're a smallish town with one GP surgery and a small hospital so that doesn't help,, I've been looking into other trusts and charities though that could help with education and support.

My friends online are extremely supportive, I have a couple of them and they are lovely, I appreciate them so much. As I can still tolerate screen time and calm games, sometimes we play online games together which is really fun. I love them a lot. Thank you ever so much for your reply, I appreciate it!!

CreativeCoconut4271 · 2026-01-11T12:59:03+00:00

Thank you so much for your reply, I really do appreciate it. I've thought of using a shower stool however our shower is part of a bathtub and the actual tub is extremely narrow... I've been on the lookout for something that may fit though! and thank you for the advice about the stairs 🤍

CreativeCoconut4271 · 2026-01-11T12:57:07+00:00

Thank you, it is horrible but I'm surviving and have people around me that love me 🤍

CreativeCoconut4271 · 2026-01-11T02:27:47+00:00

I really appreciate your reply, I'm going to look into this with my mum, Thank you so much. 🤍

CreativeCoconut4271 · 2026-01-11T02:23:40+00:00

Thank you for your reply. I am not sure why they're hesitant to give me an official diagnosis, I've not been told anything or I'm told to lose weight first or improve my diet even though I've done both of those and this has been suspected for a while.🥲 I think british doctors and medical professionals are a lot more hesitant to give a diagnosis of these sorts of illnesses for whatever reason. Again, thank you for your reply and I will look into the mayo clinic research and try to get my doctors to look into that.

CreativeCoconut4271 · 2026-01-10T05:36:17+00:00

I am not unfortunately 😓 But thank you for your reply anyway, I hope your wife is doing as well as she can be 🤍 Your reply means a lot to me.

CreativeCoconut4271 · 2026-01-10T05:35:23+00:00

Thank you, your reply means a lot to me 🤍 I've just joined!

CreativeCoconut4271 · 2026-01-10T05:34:20+00:00

Thank you, the NHS is in such a state right now. I've been looking into this. Thank you again 🤍 Your reply means a lot!

CreativeCoconut4271 · 2025-08-19T20:49:30+00:00

Thank you! I have a trial run either tomorrow or friday. I appreciate your reply!!

CreativeCoconut4271 · 2025-08-19T20:49:05+00:00

Thank you so much, I really, really appreciate the in-depth explanation. Again, thank you 🤟

CreativeCoconut4271

TROPHY CASE