Miranda Berry

Former dog walking, tree hugging, outdoor loving optimist. Felled by Covid. Proud to work in the NHS. #longcovid. #POTS. #Dysautonomia.

[Miranda Berry @MeemsterMeem]

@loulordsmith @CaroleBruce17 @TraceyABurgess It is! I have dysautonomia and am hypermobile. Are you the same? I was encouraged to go swimming and exercise more 🤭

[Darren Parkinson 🌍💚🤘 @DarrenBar88]

Yesterday #LongCovid cost me my job.

20 years working as a Learning Disability Nurse for the #NHS.

My livelihood gone, my role in life gone, my ability to help others gone.

Long Covid ruins lives.

[Miranda Berry @MeemsterMeem]

@DCMS @lisanandy Remember?! Covid is still out there & impacting millions (although the Gvt would like to forget that). Put your efforts into public health messaging, air quality in schools & hospitals, data collection and research for treatment of long Covid.

[Miranda Berry @MeemsterMeem]

@FT Have you spoken to anyone who has applied for these ‘benefits’? The level of medical evidence you have to supply is huge and requires renewing for regular reviews. Any additional £ is for the additional support costs disabled people often require for daily living.

[Miranda Berry @MeemsterMeem]

@pausedME I couldn’t listen to music for a couple of years. I now listen to a lot of music on BBC Radio 3 Unwinds. Olafur Arnalds has a series called Ultimate Calm. Also check out Night Tracks, The Sleeping Forecast and Piano Mix. I can listen to these without frazzling!

[Miranda Berry @MeemsterMeem]

@LCDLongCovidDub @TraceyABurgess Hi! Have you thought about using Visible? It is a HR monitor & App which records & stores your HR data. you can tag HR against activity. It is a great way of providing ‘evidence’ of increased HR when doing simple things like standing up / having a shower. (POTS).

[Miranda Berry @MeemsterMeem]

@northernsi @RestIsPolitics @RoryStewartUK @campbellclaret Great question! Thank you.

[Miranda Berry @MeemsterMeem]

@RestIsPolitics @RoryStewartUK @campbellclaret Long Covid Q: a lot of public messaging about the impact of long Covid and importance of protecting yourself from Covid has been left to patient advocacy groups - those who are the most sickest. Why has Gvt stepped away from/ downplaying long Covid public health messaging?

[Miranda Berry @MeemsterMeem]

@natalie_trosh Just thinking, are you also taking Slow Sodium tablets? These can be prescribed to also help with salt intake and blood volume.

[Miranda Berry @MeemsterMeem]

@natalie_trosh Hi Natalie, Dr Sanjay Gupta (cons cardiologist at York) includes IV saline as part of wider treatment options for POTS. See his YouTube channel YorkCardiology and website https://t.co/7gp8LZSHxl. The outpatient infusion unit at Harrogate provide this.

[Miranda Berry @MeemsterMeem]

@Sarasearching Thrilled about your physical recovery - thanks for posting as it helps to see positive stories. We are mind, body and spirit. Processes take time: how hard are you being on yourself? Do we need to be transformed & learn lessons? Recovery. Hope the counselling helps. x

[Miranda Berry @MeemsterMeem]

@dbkell @resiapretorius Please put across the level of suffering this brings; symptoms are unmanageable, and without research & treatment, life is unbearable. So many with suicidal thoughts due to constant symptoms and no help or hope. Covid March 2020 & Feb 2022. Dysautonomia/POTS/chronic fatigue.

[Miranda Berry @MeemsterMeem]

@PhilM64 @j_b_kennedy That’s fantastic! What do you put your recovery down to?? Asking for a friend ….. 😆😆

[Benjamin Ranyard @higgledygarden]

:)

[Miranda Berry @MeemsterMeem]

@hout_marianne There’s some info about midodrine on https://t.co/fw1HMt0a1K . Worth looking at. Also, have you seen any of the videos about POTS on YouTube by Dr Sanjay Gupta? (Look up YorkCardiology). They are very good! Hope you shift it soon.

[Miranda Berry @MeemsterMeem]

@hout_marianne https://t.co/pkxEgLNGGg - link 🤗

[Miranda Berry @MeemsterMeem]

@hout_marianne Hi Marianne, are you prescribed Midodrine? This really helped prevent my coathanger pain as it helped blood flow up to my neck and shoulders. Also, have you seen yuyu hot water bottles?? They are great! Hope you shift it soon.

[Miranda Berry @MeemsterMeem]

@Pollard1Jo Thank you for the hug Jo! Just the job! 🥰

[Miranda Berry @MeemsterMeem]

This made me cry. As did the comment from a hospital Dr who told me this week that all I needed to do was to swim and get a few hobbies ….. we would all be hiking, running, sailing if our bodies let us you bastard.

[Maria Esslinger-Raven @Esslinger_Raven]

At the age of 25 I have been awarded a blue badge. A year ago I would hike, sail, swim, work 13 hour shifts and still have energy to go out with friends. Now I can't walk, breath, think, socialise or continue my education. Covid has taken all I am.
#LongCovid #invisibledisease