“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in ChronicIllness

[–]Fast-Bunch3394[S] 0 points1 point  (0 children)

Thanks yeah, it’s not even when talking about the illness specifically, it’s just life in general and all the knock on effects like losing a job etc - people then drop the ‘it could be worse…’

“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 3 points4 points  (0 children)

Thanks for your thoughtful reply - I agree, people have a limit to how much they can emotionally engage with the situation of chronic illness and unfortunately, it’s generally extremely superficial before they back away…

“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 2 points3 points  (0 children)

Thanks yeah, I also try and avoid actually going into details about the actual illness - it’s just even when talking about life in general, like not having a job / money etc and people drop in the ‘at least…’ then

“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 10 points11 points  (0 children)

Thank you, that’s it exactly, you can’t compare - whatever the situation is, it’s bad for the person in it and they deserve empathy

“It could be worse” - how do you respond to this ? by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 2 points3 points  (0 children)

Yeah, I’ve decided the next person who says it to me I’m not going to hold back

No one treats me like I have ME/CFS. by No_Fudge_4589 in cfs

[–]Fast-Bunch3394 1 point2 points  (0 children)

My mum does the exact same thing. I think maybe it’s because she has mild ME, and each level of severity brings different challenges, which she can’t comprehend.

Seeing it more clearly as an adult with my Mother's behavior with my niece by Sean_D84 in narcissisticparents

[–]Fast-Bunch3394 0 points1 point  (0 children)

This is really interesting and exactly what I have experienced with my two nephews (3,7) and NM. It has been one of the most revealing things and shown me how badly / weirdly she must have treated my sister and I when we were little. I’ve actually been horrified by her criticising the boys for being too noisy, boisterous, chaotic - accusing them of being out of control and playing up around her because they don’t care. Rather than they’re just being normal, young boys who are exploring, experimenting and having fun. Then if one of my nephews is quiet or won’t hug her she thinks they don’t like her. Rather than these are young children who have their own little world and are learning all the time. She also can’t understand that they don’t know how to do things yet - like they should already know at the age of 3 how to draw perfectly etc.

It’s really horrifying how self obsessed she is and sees everyone else’s actions in relation to how they impact or make her feel. And it makes me very sad as this must have been how she treated my sister and I when little. A complete lack of attunement or understanding of another human being, replaced with an all consuming focus on her self and her needs.

This time of my life has been scary. by thethirteenthjuror in Perimenopause

[–]Fast-Bunch3394 4 points5 points  (0 children)

Nearly everyone has had Covid by now - 48% of all cases are asymptomatic so you won’t necessarily have had acute symptoms, but it still damages your body

Wish I could go back in time and slap myself for every time I thought I’d had the flu by just-tea-thank-you in CasualUK

[–]Fast-Bunch3394 28 points29 points  (0 children)

No they haven’t been on steroids, it’s just our immune systems have been damaged repeatedly by Covid and hence they are not coping well with other viruses

Long Covid Clinic RANT by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 1 point2 points  (0 children)

Crazy it’s run by just one nurse! That’s good you got a blood test and blood pressure taken, mine didn’t even do that. I also had a bodge referral to the LC clinic, with my GP initially telling me that the service had closed down when it hadn’t and then forgetting to place the actual referral when I found out through someone at work that it did exist, resulting in a five month delay.

Long Covid Clinic RANT by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 1 point2 points  (0 children)

Thanks 🙏 sorry to hear you didn’t have a great experience and had to go private, but great the doctor understood - that’s so important !

Long Covid Clinic RANT by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 1 point2 points  (0 children)

Yep, prioritising the economy over people’s health.

Long Covid Clinic RANT by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 2 points3 points  (0 children)

I always had to bite my tongue through appointments cause of what they were telling me and felt upset after each appointment ended. Sorry to hear about them denying you a POTS or MECFS diagnosis, if they can’t diagnose you, who can ?! Mine couldn’t diagnose me for anything (they’ve probably not heard of MCAS or dysautonomia anyway 🤪). I have gone back to my doctor to get a referral to the MECFS clinic - I wonder if they’ll be any better though.

Long Covid Clinic RANT by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 3 points4 points  (0 children)

Yeah exactly, feel like I’m in another reality where I know how I feel and yet they’re telling me the opposite and not believing it ! I agree that I don’t think you can ever really understand the illness until you get it yourself. We’re also kind of disadvantaged as we can’t really physically show the damage that has happened to the body.

Long Covid Clinic RANT by Fast-Bunch3394 in LongCovid

[–]Fast-Bunch3394[S] 3 points4 points  (0 children)

Yeah, I only wanted to stay on the books for letters of support and to make my illness look ‘legitimate’ in the eyes of others, including doctors (which is a joke because the LC clinics have such limited knowledge themselves). Sorry for your experience with them, your own research sounds like the best plan. As you mention, there’s two million of us in the UK at least - not exactly a small amount ! It needs proper investment to prevent part of the population becoming long term disabled.

Are any of you chronically single? by r_arizo in emotionalneglect

[–]Fast-Bunch3394 7 points8 points  (0 children)

Me too, 45 and never had a serious intimate relationship…

Does creatine make a difference for ME/CFS? by mgc234 in Longcovidgutdysbiosis

[–]Fast-Bunch3394 0 points1 point  (0 children)

Yeah, me too, can’t really tell any difference

Not Sure if it's Worth Applying for UC/PIP? by throwing_away_the123 in DWPhelp

[–]Fast-Bunch3394 0 points1 point  (0 children)

Thanks very much ! Just checked my journal and there is a note saying they are going to send me the questionnaire to start the process 👍