Daily Chat

[artist55]

Good morning from a windy and stormy WA! I’m glad you are picking up a bit @Dot and that you found an exercise physiologist to help you.

Yesterday I was lucky to get a cancellation appointment with an endocrinologist who read through my many test results and told me I have all the symptoms of me/cfs but we first have to rule out depression. I don’t feel depressed at all but I in an effort to get to the bottom of this I am now trying to get an appointment with a psychologist.

Round and round the merry-go-round!

[crashdummy]

@Dot I'm green with envy at that hairdo... but in my neck of the woods, brown is the new black ... I'm afraid my hair doesn't look as bouncy and healthy as that but I rather fancy the idea of my avatar being just as you perceived it to be. Why not? ... Heehee ...

[gretch]

Hi @artist55 very dizzying to be on the merry-go-round. There is an article you might find helpful from Health Rising
https://www.healthrising.org/blog/2014/04/26/prove-doctor-youve-got-chronic-fatigue-syndrome-mecfs-just-depressed/
Thankfully there is also updated clinical guidelines for health professionals that outline the criteria to differentiate between depression and ME/CFS as well as secondary depression related to living with a chronic illness. Can be extremely challenging to be your own advocate in these situations but would only take a psychologist a few minutes to look up the criteria if they are unfamiliar with ME/CFS.

[crashdummy]

Hang in there @artist55 ... it is trying and arduous going through medical processes ... so sorry you are on this merry go round but sounds like the endocrinologist report is a huge step forward in understanding what is going on ... when I got off the medical merry go round, I ended up in a dodgem car (hence crashdummy) ... I spent many years being told the wrong information on how to live with ME and I would have crashes that required hospitalisation and complete body shutdowns. The more tests you can have the better; I found my medical file is so important and needed for managing and living with ME. You will get through this process; keep the momentum and keep every document/report/copy/note/appointment date/ doctor/specialist list/journal/diary entry/photo/ xray/etc ,anything related to your medical journey.... in good chronological order... it will help you now and into the future ... now I'm gabbling on, when I just wanted to wish you all the best with this journey ...

[artist55]

@gretch thank you very much for the article! If and when I do finally get a psych appointment (waiting lists until Nov!!) I will take a print out with me. It’s all a bit overwhelming for my porridge brain atm so I’ve decided to ‘ostrich’ until tomorrow.🪶

[artist55]

@crashdummy Awww your kindness and advice made me quite emotional! I spent half of the day on the phone - 25 calls - reading from a script (in case of potato tongue ) trying to get an appointment. One psych asked why and when I told her she burst out laughing She did apologise but I fear her reaction might just be a taste of more to come…

Tomorrow I will regroup and my stubborn old goat fighting spirit will be renewed

I am grateful for communities like this

[Glimmer]

@artist55 I read your comment about the psych laughing at what you said and it reminded me of when I went to see a General Surgeon pre surgery. He asked me for my medical history so I told him I had CFS. He thought I was joking and had a great laugh. I was dumbfounded so I didn’t say anything. I so often think if only I could give some people my symptoms even for 5 minutes so that they get the idea …

[Daffy_Dave]

That's atrocious treatment you both got @Glimmer and @artist55 - in both cases, there's really no excuse for that behaviour. Much sympathy and understanding. That being said, it's important to be 'steeled' for those kind of responses. Best of luck with your continued search today @artist55.

[artist55]

@Glimmer I’m so sorry There are no words. It’s not a joke to the people involved. Maybe if this condition had a different name, people would find it less amusing? Good job we’re a resilient bunch!!

[artist55]

@Daffy_Dave Look on the bright side: We have already learned patience, resilience, compassion - and now we get to work on Unsusceptibility too. The gifts just keep a-comin

[Daffy_Dave]

@artist55 That's an excellent attitude - there's no question that ME/CFS is 'character building'

[artist55]

@Daffy_Dave I think I learned it from my son. He has Tourette Syndrome and thanks to movies and media he has had his share of tasteless jokes and sniggers too. He has a lovely, sunny nature in spite of it though.

[crashdummy]

@artist55 , @Glimmer Shame on those who believe they have the right to laugh at a patient trying to communicate their illness. I'm having a Zena warrior moment with this, wanting to lead the charge on fixing this consistent barrier to being heard with respect, equality and fairness. Why my cat was treated better when he presented with lethargy and anxiety after moving house! I was told that just because you may not see an obvious cause, it is very real and debilitating: we must treat it immediately! .... rightfully so .... Why the same attitude and courtesy isn't automatically extended to humans when it comes to anyone suffering from ME/CFS or any of the debilitating symptoms, is beyond belief. Sadly these attitudes do exist and many of us have experienced it ... so sorry you experienced such appalling behaviour ... I'm sending you both a cake emoji to cheer you up

[Glimmer]

@crashdummy Very well said. Thank you. Also for the cake emoji! Yes if it happens again I feel like I’m stronger to handle the situation differently. We learn as we go along. Hope you have a good day.

[artist55]

@crashdummy thank you for the cake and your heartfelt support I feel blessed to be a small part of this caring community!

[Dot]

Hello everyone,
I am just about recovered from granddaughter and visitors and appt with Exercise Physiologist. Sheesh!
I have also got my computer glasses back. Hooray!

Hi Daffy Dave, wishing you a gentle day today.

And everyone else too!

Hello @artist55, congratulations being one step further along the road of your diagnosis. How awful to have such a terrible trial trying to book. Exhausting and not helpful to be laughed at. How frustrating to have to wait until November to see your next specialist, especially if it will only take a few minutes once you get there.
It can take days to recover from that sort of ringing around. Sending best wishes.
Won't you be glad to get off the merry-go-round.
Hooray that you are feeling community here. It is lovely for us too.

@crashdummy Ha yes, do make it your avatar! Dyeing your hair green would take a bit of extra bleaching-first work, I understand, so beautiful brown is a wonderful option.
Omg you had a nasty merry-go-round ride with ME. Nasty dodgem cars too.

Oh dear @Glimmer, that General Surgeon. (My lung surgeon is similar, thank goodness he sticks to his lung surgery job).

Well I am happy to feel well enough to post again. Little things are so precious.

No need to mention the Victorian lockdown? I've been locked down for years!
But if it is causing you hardship, here or in NSW, sending lots of good wishes.

Cheers friends.

PS Should I start a new daily chat thread since this one is getting so long?
A new one each week, or each month?
What do you think?

[Glimmer]

@Dot Nice to have you back. . It’s interesting isn’t it comparing the lockdowns to our own. We’re old hands at it.

[Dot]

Good morning,
It is the weekend (quite understandable if you didn't realise )

Hi @Glimmer,
Yes ME/CFSers, we are lockdown experts. (Not by choice.)

Well today I am planning to do all the best things: drink lots of water, do my stretches, potter around, eat good food, that sort of thing.

Hoping you all have a reasonable day with some useful pottering around and don't eat too much rubbish

I don't think I am going to see any sun today, but I will try to poke my nose out when it isn't raining.

Best wishes to everyone

[Glimmer]

@Dot Your day sounds the same as mine! We have blue sky and sunshine here, but it’s a bit breezy so I won’t go outside. Cool wind gives me earaches and affects my balance. .

[artist55]

@Dot Glad you are up and about and that you got your glasses back! I hope the rain stays away long enough for you to get out a bit.

@Glimmer Its not too windy here, just rainy, but I don’t mind it️

This weekend is for resting before schools reopen on Monday. I hope you all have a restful weekend too