GiftedHand

Intuitive Artist: #Neurodivergent #ADHD:spoonie:advocate:photographer:mentor:writer:mama:Founder "Woman Soul Odyssey” Surfacing creative soul voices visually

[GiftedHand @GiftedHand]

@CaroleBruce17 @UKChange Signed and shared 🥺

[GiftedHand @GiftedHand]

Save Caroline Roberts’ Life now: A very severe ME/CFS patient with high mortality risk. - Sign the Petition! https://t.co/zn9GuDbX3O via @UKChange

[GiftedHand @GiftedHand]

@DiaryofaSickGrl This so much. I used to read a book in about three days many years ago. Now I’m lucky if I’ve read three books in four years (although that’s mostly on audible) . I just don’t have the focus and concentration anymore. Sometimes I haven’t got the brain to listen to a voice.

[ThePOTSPostman @ThePOTSPostman]

I used to think I could control my illness with discipline.

That if I rested perfectly, ate perfectly, planned perfectly, I’d stay stable.

I thought I could beat this if I tried harder.

Did the protocols. The diets. The routines.

But sometimes chronic illness doesn’t work like that. It’s messy, unpredictable, and often unfair.

You can do everything right and still lose the day.

Some days your body is just going to say no.

That’s what breaks you sometimes. The helplessness of doing everything right and still losing.

[GiftedHand @GiftedHand]

@Sally_writes They made some sort of alteration to the Facebook post of the same saying it was the platforms name (retirement publications website “Restless”) and not the suggestion of resting less . They gave that reply to each comment . At that stage, I didn’t even read the article! (2/2)

[GiftedHand @GiftedHand]

@Sally_writes The problem is, they’re not thinking through the optics. Like others said it feels like accidentally on purpose. They gave the same answer to everyone on Facebook each time it was questioned (1/2)

[Bottsie Hicks @BottsieHicks]

I have the utmost respect for @DrMaureenHanson's dogged determination and expertise. Please watch this short video shared today at the #NotJustFatigue livestream.
Dr. Hanson is driven to find answers, not only for her son with #MECFS but for all #pwME.
🙏🫶🙏
@SecKennedy @HHS_Jim

[GiftedHand @GiftedHand]

@AmandaB55744931 Where was the autonomic clinic? I have my first ever appointment at a long Covid (respiratory ) clinic in person at UCLH in a couple of weeks. I’m not sure if I’m going to get the right kind of help. I was thinking of finding someone privately, but I just don’t know where to go.

[GiftedHand @GiftedHand]

@AmandaB55744931 I don’t think there is any plans for another Hospital at all. I live in the area only a few minutes from Crews Hill. I’m on the doorstep of Chase Farm. If it wasn’t for LC/ME, flooring me this last year (possibly due to re-infection) I would always be down at the garden centres.

[Adam @ABrokenBattery]

Listen to the full BBC Access All interview with Professor Chris Ponting and #MECFS patient Laura Boyles where they discuss the Decode ME study that found eight genetic differences between people with ME and healthy participants (11 mins)

https://t.co/9wlnCkRe8K

[Adam @ABrokenBattery]

Clip: Chris Ponting tells the BBC Access All podcast the idea for Decode ME came from the #MECFS community. He also had a friend whose life was destroyed by ME, and saw a research vacuum, funding has been lost due to stigma and misogyny against this female-biased disease.

[GiftedHand @GiftedHand]

@running4rights @kadamssl I can attest to this, suffering LC since 2020 + long-term M.E, + perimenopause issues (on HRT but progesterone depleting as mirena has run out 2 yrs early) - it’s a cluster fu€k along with Adhd too. Unbearable some days.

[GiftedHand @GiftedHand]

@alexandrite113 This is something I’m repeatedly reading similar stories of on the long Covid subs. I experienced similar getting Covid right at the beginning. It was absolutely the most terrifying time. It would probably be a good idea for him to start an H2 & H1 blocker to see if it helps?

[Sally Doherty writes 👩‍💻 @Sally_writes]

GUYS!!!!

Crying here. Will we finally start to be believed??? This is such a huge and important step for #pwME

[Alina V @AlinaV_Psy]

The idea that ALL mental illnesses could be prevented by avoiding trauma, poverty and unhealthy habits is an omnipotent fantasy that everything can be controlled.

[Emily Pomroy-Smith ♿️💙🌹 @EmilyP_Smith]

Also, for those of you who ‘know’ someone who is gaming the system. You don’t ‘know’ anything. You cannot see someone’s diagnosis or symptoms by simply looking at them.

You. Cannot. See. Someone’s. Diagnosis. By. Looking. At. Them.

5/

[Emily Pomroy-Smith ♿️💙🌹 @EmilyP_Smith]

MPs and journalists often speak in sound bites, but it is really important that they don’t perpetuate falsehoods that demonise disabled people and their families.

We must not fall into the populist trap of pointing at a minority and blaming them for others problems.

4/

[Emily Pomroy-Smith ♿️💙🌹 @EmilyP_Smith]

Autism co-occurring conditions -
• ADHD
• Hearing Impairment
• Down’s Syndrome
• Dyslexia
• Dyspraxia
• Epilepsy
• FACS
• Fragile X Syndrome
• Hyperlexia
• Learning Disabilities
• Social Communication Disorder
• Visual Impairment

From https://t.co/ALaGkKesU7

3/

[Emily Pomroy-Smith ♿️💙🌹 @EmilyP_Smith]

All the FOI requests I’ve seen from DWP list the ‘primary’ condition, but many claimants have co-occurring conditions.

Let’s take Autism, seeing as there seems to be a large group of people who don’t understand why an autistic person might qualify.

2/

[Emily Pomroy-Smith ♿️💙🌹 @EmilyP_Smith]

The misinformation about Motability being spread by people who should know better, including journalists and MPs is disgraceful.

You do not get the higher rate of mobility for PIP or DLA for a specific condition. You get it for how that condition affects you.

1/