@river Oh no that sounds awful. I hope that it comes down a notch tomorrow. The multi task is such a horrible unfair trap! And also the doing things during pem because you feel a glimmer that it's easing. Argh I need to take that advice too. Get off of your phone @emsarah!

@daffy_dave thank you! Yes that's the one I was thinking of but wasn't sure if my foggy brain was right 🙃

@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 💙💜💚

Thanks @river, i’ll look into it a bit more. Seems to have more potential benefits than risks.

@dot

Thanks for sharing your experience. Im glad it is helping you with your weight.

For me my weight it ok (actually have been losing weight but as usual my dr dismisses it).

For me i’m more interested in the potential nutrition, healing and ATP aspects. Its helping me eat much more healthily for now anyway (havent gone full blown keto yet but trying it on slowly)

Hi everyone! I've seen a new booked talked about a bit on Instagram lately, and shared by one or two people with ME. It's called Cook as You Are by Ruby Tandoh (I think she won one of the British Bake offs). The idea is that it's an accessible cook book - there are lots of adaptations for all sorts of needs - energy, cost, sensory etc. Perfect for us! (Well anyone who is able to do a bit of their own cooking 🙂 or it might help carers who are time poor!)

Thought it was such a different approach and something that would be great to see more of. This is an Amazon link which has a few reviews and Google Books has a preview of quite a few pages.

@river I’ll be interested to hear how it goes as after reading Cort’s latest, and previous mentions of amino acid depletion, I was going to look into them. Thanks for the reminder!

We definitely do @iris. 🌻

@crashdummy It sounds a bit like a frilled neck lizard with it's frill down... I don't know much about other state's lizards though, there are a few that climb trees. I've been bitten by a pretty good range of animals, I used to volunteer at a wildlife shelter. Parrot bites are the worst, though emu bites are surprisingly harmless.

I don't volunteer there anymore though. Between the fatigue and the rumours of wildlife trafficking (!) it wasn't really worth it.

@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.

@davoid I have tried Magnesium Citrate, Chloride (liquid form - yuk), and Glycinate. These were the only 3 I could find at local health food shops and other such places.
I'd be interested to try Malate. Can you suggest where I could find it or brands I could look up?

Hi from another teacher newbie👋

I’m sorry you are having such difficulties- I fully understand. Teaching is stressful when you are healthy, never mind when you are feeling exhausted and ill! I hope that you have been able to find ways around the fatigue. I haven’t told my school admin because I’m afraid they will start to look more closely at my brain fog mistakes and start looking for reasons to replace me with a younger model😂

@donnamarie True! And I am not that reliable even without brain fog. 😄 😄

@river said in Housebound BY CFS.:

@Siren maybe we need a section of the forum specifically for NOT thinking about illness... Distractions and fun stuff. That's what the Water Cooler area is for, maybe we need a thread there for things like cute animal photos, etc?

Good plan 👏

We had a discussion about this in my Rural online support group and we all agreed to call fatigue post exertional malaise as more people understood this and were more accepting of this terminology.

@RatsAreFluffy I agree with your thoughts on comparing yourself to others more severe. I feel the same way. When I'm bedbound in a three week crash, there's no doubt that I'd say I'm in the severe category, but what about the in between times when I'm out of bed, but still housebound but I can potter around the house and do some simple things? Am I still severe or do I drop down to moderate? It's a tricky thing, and with the nature of it, I don't think I'm in the same category everyday.
I wonder if other diseases are categorised in the same way? Can you have mild/moderate/severe MS or Parkinsons? Or is it that you either do or don't have the disease and those that have it then for some people they have better functioning than others with the same disease?

I have progressively worsened. Look, I feel that I have had ME all my life. Even as a kid of 10 I struggled to make a full week at school. I was even taken to a head doctor when I was 10 because no one could figure out why I didn’t want to (couldn’t) and struggled to go to school from Thursday onwards and why I seemed perfectly well in school holidays. They all believed I had psychological problems, they mostly still do, and I’m 62 now. I barely made it through high school , if they made me do PE and sports I was screwed for days after, if I went for fours days in a row it was unusual. The school even investigated my lack of attendance. I lasted in my first full time job for one year, when the winter came I crashed and couldn’t get out of bed. My father and his mother had this too, and my own mother believed they were both malingerers, so I got that label too. I have never been able to keep a full time job. I’ve gone through times of a kind of remission where I did better, but I think maybe that was a matter of how life was going. I had two kids, it was hard, when they were young I spent most weekends in bed. But sooner or later I would crash very badly and every time I’ve had a significant crash I’ve become a little worse. My big one came when I turned 50. I had a serious of major life events that I seemed to sale through, but as soon as things evened out, I crashed, majorly. I haven’t gone back to how I was before that, it’s been over 10 years, and I am now housebound and can only function on a very basic level, sometimes even not that if i happen to overdo or the weather is cold and wet. I have been diagnosed with autoimmune arthritis, fibromyalgia and chronic fatigue syndrome. Biologic treatments for the arthritis has helped me a little. But I am still gradually getting worse, maybe some of that is natural ageing and lack of fitness but my PEM is far more easily triggered now and takes much longer to recover from to my latest baseline. The baseline is getting lower too. I fear for my future. My grandmother lived on to 92, the last 20 years of her life she was a vegetable in a nursing home.

@crashdummy Some supermarkets have a bigger variety than very small rural towns. eg. In Waikerie it is $6.00 for gluten wheat free crackers in Woolworths and only $3.50 in Loxton IGA for Orgran Buckwheat crackers and there is at least 5 different varieties including quinoa and chia. Loxton is a much bigger town.