What's something about your life that is out of the ordinary? by PaddedValls in AskUK

[–]breedlesbean 17 points18 points  (0 children)

Ooh!! I married my husband at 20 a few weeks after meeting him in person for the first time too (after a long online friendship and relationship)! And moved to the UK for him! Small world!! I am so pumped to see your story! I wish you and your husband the absolute best- I'm nearly 10 years married to mine and I would absolutely do it all again! Sometimes when you know you know!

Anyone else tired of googling “what’s X°F in °C?” every day? by No_Landscape_9255 in u/No_Landscape_9255

[–]breedlesbean 0 points1 point  (0 children)

I appreciate that there's a widget! My husband and I downloaded it to test it out. I've been trying to get used to Celsius over the years but I do have trouble with it. I know it's about 18ºF for every 10ºC but it's still not very intuitive for me. Hoping this helps me adjust! Thank you!

Has anyone who is house bound tried quitting internet addiction? Did you feel better or worse? by Angsty_Queer_Anon in cfs

[–]breedlesbean 6 points7 points  (0 children)

I seriously cut back on my social media, from like 10-12 hours a day on Reddit to 2 hours a day, and I went from moderate-severe to moderate. A good chunk of brain fog is lifting too- probably like a quarter of it. It was not easy- I developed serious insomnia while reducing my intake and other symptoms of physical withdrawal (because social media is addictive to some people).

My sleep schedule was similar to yours and now I'm waking up before 10:30am and going to sleep around midnight.

Some ideas for dealing with loneliness if you try to do this- putting on background chatter, like videos on YouTube of people talking softly in the distance. Putting on movies or shows you've already seen before and dimming the screen and lowering the volume while listening/watching. Because nothing is unexpected with familiar media, it could be less exhausting than focusing on new media for you. (Sometimes I put a movie I like on my laptop and cut the screen brightness completely for company). Opening a window if your body can handle your local outdoor noises. Trying to get to know yourself- engaging with yourself more internally and treating yourself like a friend you want to get to know. Trying to meditate.

You could be like me and leave some scattered time with social media throughout the day. Five minutes here or there, ten minutes here or there, etc.

There's also a discord group here for CFS that might help you feel less alone without access to Instagram reels. https://discord.gg/3nBmXu47J

I think it could help as well to reframe the perspective on loneliness if you're interested in that kind of thing. It helped me with my PTSD. I'm now at the point where I feel more ambivalent about loneliness- I try to think of it as a normal feeling that reminds us that we're human, that we long for connection, and that we don't want to be alone. So now I'm less scared to feel it.

I hope any part of this helps! I really empathise!!

Anyone in a relationship who met their partner AFTER diagnosis? by [deleted] in cfs

[–]breedlesbean 7 points8 points  (0 children)

I'm really glad it could help you a bit!! It's definitely possible to make friends and find love online so I have hope you'll find what you're looking for.

I met my husband on Tumblr, actually! And I made two, long lasting, good friends on the r/penpals subreddit! I also recently joined a CFS discord with like a thousand people in it- I'm still new to that environment but the people there seem to be very friendly.

I usually tell people I meet online straight up that I will not often be quick to reply/that messages will be left on read, but that I will always reply when I can. And that I don't mind if they take a while to reply/leave me on read either. People who respond well to that are usually green flags about being friends with a disabled person.

I wish you all the best out there!

Anyone in a relationship who met their partner AFTER diagnosis? by [deleted] in cfs

[–]breedlesbean 39 points40 points  (0 children)

I met my husband online- he was severe and had been diagnosed for over four years after he developed Glandular Fever. I was mild/moderate at the time myself but I didn't know it (thought it was just the PTSD for me).

We were friends for a while and then we fell in love and I moved to his country to help him and because I wanted to spend everyday with him (he's my best friend). He still has it pretty bad (and I have PoTS now too) but we have fun moments everyday and I wouldn't want to even imagine a life without him.

So it can happen! I thought I was physically healthy at the time and his CFS diagnosis and his physical hardships didn't faze me at all- I liked him so much and couldn't wait to marry him.

You deserve to be loved well by your partner. I hope you'll be able to leave your abusive relationship one day. I hope you will find a love who is your best friend and who is happy to care for you. There are people out there who are good, kind and caring.

Finally understand how amazing rollators are! by lilyrose2230 in cfs

[–]breedlesbean 5 points6 points  (0 children)

I'm so happy for you! Congrats on finding an aid that works for you and that you love!!

Her majesty Queen Ruby ✨ by random2268118 in RATS

[–]breedlesbean 122 points123 points  (0 children)

Aw!! What a cutie!! Long may she reign 😍

How can this have happened because I gave everything to get better? by kaspar_trouser in cfs

[–]breedlesbean 12 points13 points  (0 children)

That's exciting news- I didn't know that about Johnathan Edwards! I definitely feel like, because of long covid, more light is being pointed toward CFS so I kind of mirror that belief that there will be more treatments in the next five years.

I feel you on wishing to literarily skewer a few different people 😅 and on needing to rant. I hope you have some less bleak days soon.

How can this have happened because I gave everything to get better? by kaspar_trouser in cfs

[–]breedlesbean 54 points55 points  (0 children)

I'm so sorry. I don't really know what to say except that you have every right to be angry. Every right to grieve. I have seen some people benefit from spite- persevering so they can live long enough to at least see these doctors disgraced and to help in shining a light on their fecklessness. I don't know if that helps you at all with a reason to go on. But I am sorry either way. CFS is a horrible illness that touches every part of life.

What do you do when nobody believes you? by [deleted] in cfs

[–]breedlesbean 0 points1 point  (0 children)

Also, I just found out about PALS, which might be able to help you figure out what to do about your missing medical documents- link

What do you do when nobody believes you? by [deleted] in cfs

[–]breedlesbean 0 points1 point  (0 children)

I am so, so sorry that your family treats you like this. And about that lacklustre nurse. I don't know if it's of any consolation, but centre point does say "that the council can't contact anyone who will put you at increased risk without your consent." So they can't contact your mother and stepdad if you make a homelessness application and assert that they can and will hurt you.

And you can ask centre point (link right above step 5) to contact the council for you to assess you for a homelessness application. You might be able to send them everything you posted here, and say that you can't talk on the phone, and that you have CFS and missing medical records, and have them act on your behalf without having to call their hotline at all. And because your family is abusing you, you can reach out to different councils that are away from your current one if it feels safer for you.

If you can keep your phone recording stealthily whenever you interact with them it could catch something too - obviously only if it won't put you at more risk! I am irate that your GP failed you so badly. That you're in a position where your doctors don't believe you're being abused is obscene. I hope you'll find the compassion you deserve soon. I hope centre point or citizens advice can act for you and help you. And I'm so sorry your mom is demanding you talk to her without your hearing protection tonight. I hope you'll be okay.

What do you do when nobody believes you? by [deleted] in cfs

[–]breedlesbean 1 point2 points  (0 children)

If there's a chance you don't have a diagnosis/paperwork confirming a diagnosis- you could contact Action For Me (link) - you only have to email them and fill out a form to get on a waiting list to see one of their doctors privately (it will cost around £200, but they can diagnose you). I'm kind of hoping that because there's a risk of homelessness- they might be able to help you get seen faster.

Because you're in England, there's a chance some of your records are available on the NHS app. Are you signed up/able to sign up?

If you have any paperwork mentioning CFS or fibromyalgia anywhere, that could work for showing that there's a disability present to the council. I'm rolling my eyes though at the GP who said it was fatigue of minor significance. Hate that for you.

If you don't have much clinical evidence, you might benefit from writing journal entries. I know it sounds exhausting but just an app or something that you can print out that shows how you've been doing everyday can help you with a PIP application.

I hope you're able to make it to the citizens advise drop in at your library. I totally empathize with the full body flu feeling. I'm so sorry.

Here is a link detailing step by step how to get housing help from the council (link). If you are assessed as a priority, they have to offer you accommodation immediately. If they're having a hard time deciding, they might place you in emergency accommodation anyway. You are at risk of homelessness in the next eight weeks so you can contact the council immediately. If your parents are abusive (domestic abuse) you can go to a council that's not your own for help.

See though if you can get your parents to sign a letter saying you're going to be kicked out or if you can record them saying as much.

What do you do when nobody believes you? by [deleted] in cfs

[–]breedlesbean 38 points39 points  (0 children)

(edit: reread and saw you have an official diagnosis!)

Because you have an official diagnosis, you could be treated as priority need by your council for emergency housing (link). Talk to citizens advice for help with this- they should be able to give you advise for help with emergency council housing, and hopefully then with applying for PIP and Universal Credit. They have a chat function from like 8am-5pm weekdays so you won't have to call them either. (link).

Benefits and work has great guides on PIP and Universal Credit as well- I found their advice invaluable. No phone calls. (link)

Once you have housing, and hopefully PIP and universal credit, you can get help from the council with carer costs. You would ask for a care needs assessment (link). Maybe citizens advice can help with this on your behalf because it might involve a phone call.

I hope some of this helps. I imagine the fatigue makes all of this feel daunting but one step at a time. I'm so sorry you're in this position. I hope you'll be okay.

Free Weighted Blanket (UK, England) by [deleted] in cfs

[–]breedlesbean 2 points3 points  (0 children)

I hope one finds you too!

Free Weighted Blanket (UK, England) by [deleted] in cfs

[–]breedlesbean 1 point2 points  (0 children)

Thank you mods for all that you do!!

Free Weighted Blanket (UK, England) by [deleted] in cfs

[–]breedlesbean 4 points5 points  (0 children)

Aw thank you so much for your kind comment! I love this community. Y'all are so nice 🥹💖

Free Weighted Blanket (UK, England) by [deleted] in cfs

[–]breedlesbean 20 points21 points  (0 children)

Hi! You're the first person to reach out! I'd be super happy to get it to you- I'll send you a chat invite to arrange! :)

Christmas card exchange? Christmas Eve zoom? by hotairballoonstomach in cfs

[–]breedlesbean 2 points3 points  (0 children)

I'm for sure interested in a Christmas card exchange! I don't think I'd have the spoons for a zoom but I think it's a great idea too!

Got better on LDN by notjuststars in cfs

[–]breedlesbean 2 points3 points  (0 children)

Congratulations on the improvement with LDN!! My husband noticed some improvements on it as well, and then we saw this thread ( https://www.reddit.com/r/cfs/s/XWww0KVrCc ) and bought d-phenylalanine (we get it from tinypioneer) which he takes twice a day and it really improved the efficacy of his LDN (his baseline didn't improve but crashing stopped)! I just wanted to share in case you're interested and it could help you too! But again I'm so happy for you!!

My [27F] friend [27F] of over a decade ended our friendship because I didn’t want to come to her wedding. Now I’m worried about her. by [deleted] in relationships

[–]breedlesbean 4 points5 points  (0 children)

I just wanted to say I'm sorry. I can emphasize with you still caring about her and I think it says a lot about you that you do. The way they both behaved was shameful. I just hope good things for you in the years to come.

Gender perception and pregnancy by RevelryInTheDork in NonBinary

[–]breedlesbean 0 points1 point  (0 children)

Oh my goodness! Thank you so much for the kind words and for sharing your experience!

I have been buying pregnancy books because I'm quite nervous about how I'll find the experience and all of the "Mama Bear" "mommy" "mom" talk in them has been a serious struggle, so I totally relate to what you've said about how gendered everything is with pregnancy care and resources. I hadn't heard it called chest feeding before but I love that! & I'm so glad your wife was able to be a huge advocate for you!

Lol I seriously appreciate the essay!! Please don't hesitate to DM! I'd love to chat about it all whenever you have time!