A stranger sent me this DM yesterday, and it really rubbed me the wrong way. Someone I've never talked to, who has never liked one of my images and does not follow me, decided to message me to seemingly imply that I should question MY diagnosis and treatment??? Is this person just mass-DMing everyone who uses an EDS hashtag because she feels like it must be misdiagnosed and could be lupus instead since she thinks that's what happened to her? This isn't okay. One thing I see complained about in the CI community all the time is how annoying it is to get unsolicited advice. This person believes that because she identities as chronically ill that gives her the right to give me advice?! She knows nothing about me. She doesn't know when or how I was diagnosed. She doesn't know that I have multiple 1st degree relatives also affected, which made my diagnosis much easier than most people who wait years trying to figure it out. As soon as I started having issues, we knew what the likely cause was. Sigh. I just can't believe anyone would think this is acceptable. No thank you. I trust my doctors, not an Instagram stranger, and am managing as well as I can. Planting seeds of doubt about my diagnosis and treatment, no matter "best intentions" in my healing, is not helpful. Instagram is so weird sometimes. Cool, share your story, but do it on your page and not by calling others' diagnoses into question and without trying to make other people worry that maybe they have lupus because they never saw a tick either. I bet someone out there WILL fall into a Google blackhole of researching Lupus symptoms after a random DM like that. Not helpful! Gah!
[ID: Instagram conversation as follows. Stranger stays: hello I was misdiagnosed with fibro then EDS then MS then lupus for 6 years. It turned out to be Lyme disease and I've never even seen a tick in my life. Everyone I've met in treatment for Lyme was misdiagnosed for years. So I'm trying to share my story in hopes of helping others. Wishing you the best of healing. To which I replied: hi I am confident in my geneticist and other specialist diagnostic process and my treatment/management. But thanks for checking in.]
Providers continue to support the NDIS and remain committed to getting it right – about half agree that the policy reforms are heading in the right direction; 25% are unsure and 27% disagree
NDIS systems and processes continue to be a source of frustration – almost three in four service providers state the NDIS systems and processes are not working well
The operating environment remains tough - 13% have discussed closing in the past 12 months (4% more than in 2017)
Workforce challenges remain top of mind - 63% found it difficult to recruit disability support workers (up from 42% in 2017); and over 70% said that recruiting allied health workers was extremely or moderately difficult
Adjusting NDIS pricing is a priority - 70% worry that they will not be able to provide NDIS services at NDIS prices and 54% say they would have to reduce the quality of services to meet current prices
Лучше Барселоны может быть только Барселона, по которой еще не гулял: день четвертый
Как известно, кратчайшее расстояние от точки до прямой, еще одна прямая, но это не про нас:) Наметив маршрут до площади Испания, мы... заблудились. И все благодаря тому же сетевому маркету "Dia". Прикупив разную мелочевку, мы на выходе взяли не в ту сторону и уверенно поперли:) Только несколько домов спустя, решили свериться с картой. В итоге путь до площади занял у нас вдвое больше времени. Затооо...
На площади мы заметили смотровую площадку на Арена Барселона, куда не замедлили забраться. Сама арена раньше предназначалась для корриды, но с 1977 года была переоборудована в огромный торговый центр. Внутрь мы не пошли, но на 27 метровый в диаметре купол все-таки забрались. Туда ведет панорамный лифт. Вход для нас бесплатный. Виды же бесподобные.
На самой верхотуре мы нашли ресторанчик, где решили чуток шикануть и заказали паэлью из лапши с морепродуктами на двоих. Принесли ее в огромной сковородке, обильно начиненую мидиями, креветками, какими-то ещё драконами и кусочками кальмара. Чек вышел на 39 евро вместе с бокалом шампанского, по-испански кавы. Мы в испанском как в китайском, так что думали, это местный напиток такой, типа сангрии только из шампанского, но когда официант принес бутыль и при нас открыл, несколько удивились, но отступать было поздно. Официант в свою очередь тоже удивился, что мы заказали всего один бокал, ведь шампанское у них открывают на события. А не на пробу:) .
А ещё англичанка за соседнем столиком сделала мне комплимент, что у меня красивые косички. Так приятно:)
После обеда мы сытые и довольные пошли обратно, по пути заглянув на жд вокзал, куда попали свободно без всяких рамок и металлоискателей, и это немного отличается от тех мер, что существуют на наших вокзалах. Зато для прохода к поездам установлены турникеты, пройти которые можно только по билету.
Обратная дорога заняла немного времени. Видели по пути монумент, но в честь чего стоит, не выяснили. Еще заглянули в магазинчик за хамоном, сыром ассорти, баночкой огромных оливок, кексами, водой и ассорти аля попкорн с орехами (вообще-то искали просто орешки). Вышло на 11 евро. Ужин удался)
I was diagnosed with Fibromyalgia in March 2018 after years of suffering silently with pain headaches, fatigue, exhaustion, sleep disturbances, anxiety and depression. It crept up on me slowly over the years giving me more and more symptoms until it got so bad I had to stop and take notice.
I have suffered all my life with “growing pains” that continued even when I stopped growing. It’s saddens me that I don’t remember what “normal” feels like anymore.
During my childhood I experienced a lot of childhood stresses and trauma including extreme bullying, death of close family members and a young friend both due to terminal diseases before I was 12 years old and other things that even has an adult I still do not feel comfortable talking about.
I remember starting to feel sick all the time at the young age of 16.
At this time I started developing cold and flu viruses regularly every 2-4 weeks accompanied with a sore throat and on occasions very red and sore but with no infections affecting my final year of school immensely due to time off.
This continued until age 20 when I developed chronic tonsillitis 4-6 times a year resulting in a lot of antibiotics and time off work.
At age 21 I got incredibly sick and developed severe complications of glandular fever... resulting with me being told to go into A&E.
The doctors told me I was severely dehydrated and my body was shutting down... I cannot explain how much pain I was in and how incredibly fatigued I was.
The doctors failed many times to draw blood and insert the IV that I nearly passed out.
I was given my own hospital room, fed meds through a drip including steroids, water and strong pain killers, a few days later I was discharged with a bag full of pain killers, antibiotics and told to rest.
Fibromyalgia, You have taken so much from me. You have stolen my youth, my memory, my cognitive function - every piece of information takes a while for me to process, my strength, my ability to be spontaneous, relationships, confidence, my energy...
I strongly believe in raising awareness for Fibromyalgia and that is why decide to share my story and experiences.
Thank you AWARE for sharing my story” 💜 @awarecauses
Okay, it’s #WorldToiletDay . We love loos. We are a bunch of loo-obsessed guys and girls who go to work every day to tick off a list of loo-related tasks. We absolutely love it, because we filled with a drive and determination to make the world fair, safe and inclusive for disabled people so they can have choice and freedom.
BUT.. this is the important bit.
It’s our JOB. Your jobs are being mums, dads, friends, carers, teachers, designers, bike fixers, campaign managers, cyclists, travellers, bird watchers, theatre goers, basketball players.. Your job really should NOT be to talk about toilets every day. To pull off campaigns and stunts, to spend hours emailing events and businesses, to explain at length why you or your child needs a loo (spoiler: same reason as everyone else). But right now, you have to do this because our society still doesn’t understand or in some cases, refuses to include a basic human need (a hoist assisted toilet). So, this world toilet day we just wanted to acknowledge this and remind you that we want to do whatever we can to help you win this mission, so you can get on with living and loos are only a part of your life when you’re on one, or smoothly and safely hoisting someone onto one or onto a changing bench! We are always at the end of the phone, a private message or a meet up.
Loads and loads of love, team Mobiloo.
Crystal Chigbu is the executive director of The IREDE Foundation (TIF) is a social entrepreneur and a development consultant with a focus on disability. She studied Biochemistry for a Bachelor’s degree in the Department of Biochemistry at the University of Lagos and in 2015 completed the social sector management certificate program at the enterprise development center Pan –Atlantic University.
Currently serving as the ED of The IREDE Foundation, alongside her team have galvanized financial and psychological help for children living with limb loss by providing them with prosthetic aid and counseling.
As a member of Business and Professional Women Nigeria, Member of the Nigerian Network of NGOs, alumnus of the Enterprise Development Centre of the Pan African University, award recipients of Life Transformation Award from WISE WOMEN AWARDS, the Ebony Life TV sponsored Sisterhood Award for Philanthropist of the year (2014), Naija Diamonds Award (2014) sponsored by Diamond Bank, Crystal continues to focus on NGOs as well as CSR initiatives focused on Children and Women.
She is passionate about persons with disability and I believe disability is a mind game. .
MP CHALLENGES DISABLED BULLYING AND HATE CRIME
Gavin Newlands, SNP MP for Paisley and Renfrewshire North, has taken his staff to be trained by leaders in the field of tackling bullying and hate crime towards disabled people. https://psly.scot/2A3EaDW #gavinnewlandsmp#iammescotland#disability#positivepaisley
Full-Time Rota Coordinator Required for IMMEDIATE start! ✅ Annual salary £ 17,000 - £19,190, depending on qualifications and experience. Must have prior experience managing rotas, good communication and IT skills.
✅ If you are positive, have a good attitude and would like to work for an established care services company recently rated ‘outstanding’ by the Quality Care Commission, then to apply send your CV to: firstname.lastname@example.org #hiring#jobs
[Werbung|bezahlt] Endlich. Die diesjährigen Inklusionstage stehen unter dem Motto INKLUSIV DIGITAL und nutzen die große Chance, um über die technologischen Fortschritte in Leben, Kommunikation und Arbeitswelt zu berichten. Welche Assistenz-Technologien gibt es, die das selbständige Wohnen erleichtern oder gar möglich machen? Was für Möglichkeiten gibt es, digitale Barrieren abzubauen? Und was gibt es eigentlich zu essen? Diesen Fragen werde ich auf den Grund gehen. Kommt rüber zu den Storys und begleitet mich live durch die Inklusionstage 2018! #inklusionstage#inklusiv#inklusion#digital#digitalnatives#disability#bcc#wheelchair#behinderung#disability
While it’s wonderfully warm weather in #Australia right now☀️🏖 parts of me still wishes I was back on top of the world in the jaw-dropping landscape that is #Grindelwald in the #SwissAlps ! 🇨🇭🌄✨.
As a #spoonie who suffers from severe joint pain & frequently ‘gets so cold it literally hurts’ in typical #Melbourne weather, I’m so proud of myself for being able to muster through & not let the amount of #pain I was in distract from the beauty that is #Switzerland .
#NDISTIP If you request a review because your initial plan is unsuitable, can you use the funds in that plan during the review process?
Yes! You can use the funds in your plan while your plan is being reviewed. When the review is complete and your new plan is approved, you won't be able to use the funds in your “initial plan”. A participant, or a participant’s plan nominee, may request that the NDIA conduct a review of their plan at any time. This generally occurs when a participant’s circumstances change and their plan no longer meets their needs, they wish to change their statement of goals and aspirations or they request a change to their plan management type. Ref: #NDISqanda https://www.ndis.gov.au/qanda/managing-plan-participant-information
So a little about who’s behind the account, I hate talking about myself but this past year I’ve learnt to embrace who I am so here it goes:
When I was born in 1990, I was that impatient to meet my mum and dad that I arrived super duper early so early in fact I was that small I could fit into my dad’s palm weighing just shy of half a pound! (The slimmest I’ve ever been - joke) . The doctors gave my parents a prognosis of 48 hour survival or be severely disabled, I wouldn’t talk, eat or be anyway independent.
However, this meant some call it complications, I call it obstacles ... as with obstacles you overcome or adapt.
As I was so under developed I wasn’t getting enough oxygen to my brain - which lead to a stroke when I was 2 days old and like @chiarabeer it resulted in right side Hemiplegia - what’s that you ask? Well it’s a form of cerebral palsy, meaning I have a weakness & limited movement down the entire right side of my body affecting my right eye, arm and leg as well brain damage to the left hand side of my brain (this controls the right side of the body). Throughout my childhood I spent numerous days visiting consultants and doctors wearing various splints to help me walk and balance. Growing up being bullied and wanting just to be like the ‘normal kids’. Yet at 28, looking back I’ve achieved things i never thought possible - learning to drive, going to uni, buying my first house all whilst doing this one handed and living by myself since I was 18.
For years I wanted to change myself, wishing to be normal but I’ve come to the conclusion I’m better than normal I’m stronger and more resilient than I ever have been and yes I’m proud of myself.
I found in relationships & friendships that as soon as I mention the word ‘disabled’ (which I hate because I’m able in my own way) there’s still stigma and judgement and people tend to run a mile as they don’t know how to cope. This is where I say thank you to all my closet friends who don’t see the label but just see me ... thank you 💋
Good things come in threes!
Book your family tickets for the Vantage Homes 5th Annual Treehouse Christmas Party online or at the gate, either way this event is not to be missed!! Sunday 9th Dec, Kawana Sports Precinct 9am - 2pm. #vantagexmas#autism#disability#christmas#sunshinecoast
Leaning on towel rails 😳
Many clients I see tell me that when they get out of the shower they hold on to the towel rail to support themselves with getting dressed and maintaining stability! This is ok when towel rails are fixed into studs and are "weight-bearing" (which is very rare)!
When force is applied, like body weight, towel rails can easily become detached from the wall and unsafe. For clients who like to use their towel rail for support, I often recommend replacing the towel rail with a weight-bearing grab rail - there are some cool ones on the market that don't look like your standard grab rail too!
A thoroughly enjoyable night for the charity, extremely proud of how the charity is developing as a whole. Last night captured how far we have come, from three years ago with 50 people present to just under 200 in attendance shows the small steps of growth.
Well done to the TJ4 winner also, Graham Brade.
Thanks for everyone who’s supported us for far, we’ve still got a long way to go.