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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I feel lucky today :)

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 fortunately another patient has just cancelled so Im able to take that appointment today :) . Im feeling so happy they are given me priority over Im sure others who were on the list to take appointments if there was cancelations.

Ive been very stressed and emotionally sensitive... wanting so much to improve but cant with no help. Getting any kind of help is extremely difficult. Im still reeling from my doctors comment "You are not disabled" when I asked if he could fill in forms for disability parking pass. So want to talk about my feelings over situation with him etc with my counsellor.

My psychologist thou I cant get in and see her much (once every 2 mths usually), she is very nice and understanding and is emotionally supportive. She's been encouraging me to try to travel interstate to see another doctor and have POTS testing done. She truely understands my issues are physical and that is what gets me down at times emotionally.

Comments

oh boy.. my full word errors showed up a couple of times in that above post and with ones own blogs.. no way to correct edit once posted so I cant do the normal corrections I usually end up doing in my posts (which i can end up correcting up to 7 times as I just keep noticing word errors in them).

sorry I hope it made sence..
yesterday when I make one..was meant to say yesterday when i WENT TO make one (as I never was able to then make one).

When I asked if "you".. was meant to say when I went to ask "him".

**sighs** i hate how this illness has ruined my ability to write well, its so hard to get words right or not miss words out
 
There should be a little pencil icon next to the title of your post that will allow you to edit. Click on "my blog" and you'll see the pencil next to the post title.

I can relate to feeling emotionally sensitive. I am much more so since being really sick. I'm sorry about your doctor's comment. I've heard similar. I am learning more and more each day that many people, sometimes including those whose jobs are to help us, just don't and won't get it and working on not letting it bother me much. Of course those comments sting especially when coming from a doctor and especially when it prevents you from getting the help you need. I hope the psych. appointment went go well.
 
Psych appointment went great :) .. she's the only professional I see who truly does listen and hence understand what Im going throu. We spent the whole hr formulating a step by step plan for me to try to sort out the issues I have and how I can get to getting a POTS diagnoses and better doctors. She said with the next doctor I try..she'll talk to him and tell him my issues arent mental health and back me up.

She said to me that some specialists visit other hospitals from interstate..so when I email the POTS specialist that I should ask him if he can do a teleconference(?) at the hospital for me.. or if he acts as a visiting specialist and comes to our state at times.

If that fails.. I was very concerned about flying interstate as last time I fly the airport people decided not to allow me to fly due to my medical state so the whole plane got made late (i was already on board and refusing to debark). Thankfully they finally ended up allowing me to fly but I dont want to go throu all that again and possible not be allowed to fly (I dont know if they have to refund one either if they kick one from a plane).

So she suggested train (i was in the sydney rail disaster so wouldnt be happy with train) but when she suggested that..I thought bus. Thou I have a problem with perfumes and I'd then be in contact with them for a long time.. so anyway the whole travel issue was freaking me out.. with travelling alone and me collapsing. Hopefully there is a way I can see the specialist without travelling interstate so will be asking the specialist what she said.

No matter what.. i do need to see a POTS specialist and have that added onto my diagnoses so doctors here stop saying im not disabled. I want to try medications too for POTS.

anyway..Im so fortunate to have a nice psych who really listens to me and who tries to help me with all the ME issues I have giving me ideas for different things.
 
I just had a thought.. maybe I could try driving myself (I havent driven in quite a long time as I wasnt safe to do so but it would be highway and long open roads without much traffic)

. its about a 9hr drive interstate to the hospital where the POTS specialist is then the same home.. maybe i could leave home a week in advice and drive an hr or so a day and sleep in the car (it would take over 2 weeks). That probably would be better for me then on a bus with perfume .. I'd probably collapse to if I couldnt lay down and was just sitting.. I see huge issues with the transport.
 
Thanks for your post.. that latest doctors thing was like the straw which broke the camels back. Psych suggested today to go back to the doctor and "try" to get the referal i need for the specialist I want to see but that thought freaked me out so much that i started to uncontrollable cry. I cant handle the thought of going back to him. She then realised just how much his words have affected me.

Ocean;bt5994 said:
There should be a little pencil icon next to the title of your post that will allow you to edit. Click on "my blog" and you'll see the pencil next to the post title.

I clicked on your blog and no pencil there.. probably cause I cant alter your blog. It just dont have that near the title.. I can edit everything else here including the comments i do in blogs..but just cant alter if its the very first post of a blog thread
 
ohhhh.. ohhh.. wow.. how did i keep missing seeing that.. it is right in front of me.. I see it now.. thank you. I corrected it now :)
 
So glad to hear it went well and you have someone who supports and helps you. I have thought about counseling too but am housebound right now, that and the cost and the fact that I'm usually asleep in the day and up all night has made it not a possibility right now. Sometimes you can go back and try to work with a person who makes comments like that. Sometimes it's just too much and time to move on. I hope you can find a different doctor to see because it's obvious that would not be good for you seeing how it affected you. Glad you found the edit pencil :)
 
Ocean;bt5999 said:
Sometimes you can go back and try to work with a person who makes comments like that. Sometimes it's just too much and time to move on.

Unfortunately no chance there of him getting better.. Ive been his patient for about 3-4 years and in that time I think he's the one who's kept on stopping other services from helping me. He would be telling the orgs which go to help me that I arent disabled too. Ive had knock back after knock back from orgs who at first said they'd help me.

(in my centrelink case for disability pension.. I ended up having to go throu 3 appeals to get it, even thou i had 3 specialists all backing i needed to be on it and I was very severe at the time.. mostly bedbound.
Ive had insight that my GP must of been thou telling the disability people I wasnt disabled there too). He's done my situation over the years so much harm, I'd thought if I stayed with a doctor I could educate them and they would see just how sick I are.. but obviously that didnt work.
 

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