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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blog entries by taniaaust1
i was walking about my house today.. only half dressed.. with my front wooden door open.. when suddenly saw a guy coming at my door (hopefully he didnt see me half dressed at that point!!!). I fled into my room to get dressed. It turned out to be the guy from DisabilitySA again. Turns out I...
I had to get a referal for the CFS specialist next week and no way could I handle the thought of going back to my old GP for one, so had to go to a brand new doctor to get one. (so I went to one in the next town as none in my own town are suitable)
I arrived at right time and right day but...
It's that time again and Christmas isnt even here yet but Im now so washed out and hence worried how in earth are I going to make it throu the xmas period.
Today so wiped out that Ive only been out of bed 4 hrs today, got out of bed at 2.30pm then fell asleep while trying to watch...
Tomorrow they have a retired ME/CFS specialist (Dr Ian Buttfield) giving a talk on ME/CFS and different medications, What to ask or tell a new doctor, How to manage your different ME/CFS symptoms.
Id been looking forward to possibly going to this talk for the past couple of months and was...
crap I forgot the name of the person who showed up to see me (He didnt have business card with his name to leave and now I cant even find the paperwork with his name on it).
Anyway. I put to him the question "why I was instantly rejected by him for support when another org had rang him...
Tomorrow.. well actually its today now being 5.30am right now as I havent been able to get to sleep, I have another meeting at 11.30am to once again beg and plead for some home support.
Thou physically I are no better then my normal. I had the proof today that my brain is certainly...
I was up on my feet today only for 30-45mins and with only that now have sore calves and there is also like over active nervous system feel in my legs making me want to move them while at the same time knowing that will bring in the ME more (restless leg syndrome?..thou they currently arent all...
My new plan of action is to document everything which happens in regard to services which should be helping me.. their rejections as a blog.
Im leaving a paper trail one can say to make sure when I take action down the track (a big discrimation case is brewing up here), I can prove all...
I guess maybe some have been saying some prayers for me as I had what I'd call a miracle happen.
I was to the point where I couldnt bear going to a doctor and having my POTS and collapses issues ignored by them once again but I went to see my CFS specialist today took me a week to force...
Ive cried for hours today.. I guess it was stupid but I got my hopes up thinking a doctor may be able to do phone or email consults with me, desperately hopeing that due to my circumstances a face to face visit may not be expected.
but unfortunately the reception of the surgery didnt pass my...
My house was broken into and lots taken (they smashed my back door) about 8mths? back.
I knew three of those certainly responsible but unfortunately only one of those admitted to police he did it and was changed. (He was a child so didnt really get penalised for the robbery, the others are...
After being so sick for 14 years while living in the same town (except for 6mths I lived with a doctor elsewhere), I just found out that there IS disability services for people like myself in this country town after all. Why have my doctors NEVER told me about this!!!! They are the ones who...
I needed an appointment with my psychologist/counsellor but yesterday when I went to make one I got told she was completely booked out and had none available to next year unless she worked an extra day she didnt want to work so they said they'd ring her.
They rang me back today and...
The other day I rang the emergency mental health number I'd been told to ring when in emotional crisis at 6.30am being upset with how bad my family is (no support at all) and due to the severe insomina Im getting so at 6.30am I still havent been able to sleep at all. I get so so tired but cant...
I woke up this this morning and the ME wasnt good at all.
My boyfriend woke me up when he arrived and all I could do is lay in bed for a further 3hrs (till 1.30pm), to exhausted and dizzy (and with a sore throat) to move (I started shaking just to sit up and have a drink). Today thou is...
Had another busy couple of weeks with appointments.
I saw my allergist .. I went there with a list of 5 things hoping to sort out but in the 45min appointment we only got throu a couple of things so I need to go back in a couple of weeks.
One of my seizure incidents which manifested...
Today I met one of my first cousins who I havent seen in 15 years and found out she's on disablity with "an unknown illness". She's just turned 30 (I dont know how long she's been on disability for). Neither us knew the other was even ill.
She didnt know what ME/CFS was and told me she...
I had the other with ME/CFS I rang the other day come an visit. :)
Amazingly she turned out to be my primary school teacher who apparently first developed ME/CFS when I was there.. (she thinks it was the year before I was in her class... anyway its close to when I had her as a teacher and...
A pharmacist was quite shocked on hearing how low my blood sugar readings can go and said I should be having monitoring. She actually said the level mine goes down to at times is bad enough to cause some unconsciousness, so hence very shocked no attention has been paid to my low blood sugar...
I found out about another with ME/CFS in my country town from my ME/CFS society, so today I was feeling up to giving her a call to let her know I was here too and chatting to her on the phone.
It was very interesting hearing her talk exactly about the same issues I have around here eg no...