@coco We did. Medals all round. A big one for you.

🎖 🎖 🎖 🎖 🎖 🎖 🎖 🎖

Yertle the Turtle, Red Hot Chilli Peppers. The lyrics were taken from a Dr Seuss book.

@Dot Thanks so much Dot. I'll give them a call to see if they can help or support in any way.

I'll be asking for email contact only from now on as I do not want to go through this every month, thanks for that suggestion @Andie). The case manage clearly stated in the ph call that it is her role to get me to be 'self sufficient'. Clearly their agenda is to get me off the claim.

And you're completely correct that it all affects my physical & mental symptoms. Unable get out of bed this morning, the pain monster is epic today.
I went straight to guilt & shame town last night after the call.
It's interesting that even after 4 years of managing ME & learning about it I still can go right back to feeling guilty for being ill; & how quickly those feelings can return from one ph call.

@TabbyFan I find an eye mask also helps to signal my body that it's rest time - like sleep hygiene. I can't have a different physical place to go to to rest, as sleep hygiene recommends (I'm bedridden so I'm in bed all the time) but having some sort of ritual or signal that "this is rest time now" does seem to help. For me it's putting on my CPAP mask and eye mask. It helps me relax into properly resting psychologically

Hey everyone

Just want to echo Jeshyr's thoughts.

No offence intended -
I feel like this monthly chat thread used to be way easier to engage with. Is it ok to ask for people to create separate threads if their post is its own topic? And keep this as a 'light' duty thread?

Like simply to consider whether your your post would fit better in 'management lounge' or another space?

Again no offence intended. I have been opting out of this thread a lot too.

@coco Ow, yes I did put a few similar threads together a while ago. So sorry if it makes things tricky.

@sapphire777 cheering you on with your decision as I'm sure it has been difficult. I hope it feels ok and gives you more time to be relaxed.

@DramaticHuskie So much sympathy.
I remember how that happens. It is a terrible grief.

I had just found my feet professionally after a rocky start (clueless and recovering from my upbringing) and felt like I was carried along in the current of a great river, seeing wonderful sights and with exciting company, watching the river get bigger and wider and more powerful...
And then whoosh. ME/CFS dumped me in a little stagnant side puddle caught among the reeds and all I could do was watch people sailing that current past me. 💦 😭

However, I am betting that as you manage your health and work out what you can do without compromising it, you will make your mark, and all the more powerfully because of this lived experience. ❤

@JustChilling Hi! Thanks for your advise and interest. I think I’ve developed another syndrome, called Doctor’s Reluctance Syndrome. (My idea for its name, sorry). After so long with CFS I think I’ve reached a point where I don’t want to even discuss it with my GP. I would actually feel uncomfortable about it. And she never asks. I can just see me asking my GP for the OI test and her giving me a strange look, and asking why etc. yes I know I could change my GP but I haven’t the energy to start again. And the idea of starting a new medication is a no go zone. I’m just sitting back waiting for the researchers to finally give us the answer, hopefully in my lifetime.

Wishing everyone a peaceful night to welcome in the new year. Happy new year 😄 🎉

Thankyou, I hope there are some small wins for every single one of us today too.

@gretch Let me know what you think. If you don't feel like listening I think she's written up the episodes as blog posts too.

@Dot This is my 2nd attempt to getting onto the forum this morning! So it’s a bit tiring ….
Hope you get to make your pumpkin soup Dot. And I hope the ‘good’ feeling lasts a few hours.
I’m very low on energy spoons today so my body is sending me messages to look after myself. I must clean out the cat loo though; definitely a priority.

@gretch I'm on 4.5mg LDN per day and have noticed a marked difference in my cognitive function for short periods of time. No real difference in fatigue levels or how long I can manage to work physically or mentally before I need to rest but my brain functions better for that period of time.

I think it's worth talking to your GP about trying LDN and seeing if it helps you, as with most ME/CFS treatments results will vary from person to person. 🙂

@bee said in Everything Diagnosis :

Re: What do you wish someone had told you when you were newly diagnosed?

These responses are so valuable and much appreciated. I am on the cusp of diagnosis (I hope) many years after first looking for answers and going through so many tests and investigations. Mental health has been a huge confounder also. My trickiest issue I think will be trying to help my family to lower their expectations of my capacity in our future plans, accepting that rest is the way to go and exercise is not the answer. (Edited to remove some potentially identifying info). Thank you all for sharing your experiences.

I wish someone told me, every time you push through PEM, your battery (energy) may not ever be as full as before 💙💜💚

@Dot That’s exactly right. 😔

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@Dot This is the best! 🙂 I agree, I like how easily you can change the flavour. I really want to try chickpeas as well. I was even wondering about your spaghetti squash?? I saw one video that used zucchini noodles and I thought it might be similar.