@passiflora said in New to the forum: Looking forward to comparing some management techniques/life hacks! I love that description - life hack

@crashdummy said in Brain Fog Bloopers: @Tess Ah ... the day of the blooper ... just one after the other ... it is relentless as it shadows our attempts at anything and can quite often ruin our outcomes on any task ... thanks for sharing, I felt a sense of comradery on this blooper day. I must say @crashdummy it always helps to feel like I’m a part of team! It’s good to get in here and just know that everyone will relate to what we are all saying ...in one form or another. I hope your day is a good day today!

@SandyAtHome you likely won't see any correlation on a day to day basis, at least at first - it's more about patterns over time and in the beginning it can seem like you're making no progress. For me I think it took about 4 months of monitoring before I reached a steady baseline and could see what my vitals were when not in PEM. To get there I had to make some drastic changes to my life which will not be possible for everyone either. It is hard work and unless you have a lot of supports it may be too exhausting. Best of luck!

@PaulB Aye, a CPAP machine gave me my reading back, and a tiny bit of energy as well (marginal in an ME/CFS context, but as we all well know, even marginal gains in an ME/CFS context are welcome!) That said, as per your experience, it's not for everyone, and there seems to be more than a few different varieties of sleep apnea, and I definitely wouldn't recommend people jumping to get a CPAP machine (not cheap) speculatively. I'm glad your situation could be resolved without it I'd obviously prefer not to have the machine on (I'm not sure too many people would say sleeping with a mask strapped on and higher pressures in their airways adds to comfort!) but I'm lucky in that for me it doesn't really bother me too much, and the benefits well and truly outweigh the costs.

@river Those are really cool pill containers - that's a top idea Noting that I'm completely unqualified to comment on such things, but it could even be a cool business idea

California by Phantom Planet. (Apologies for going from Les Mis to the theme song for 'The OC' but it was the first thing I thought of.)

@Looch No shame in the occasional blooper I find my brain sometimes substitutes what I want to type with another word entirely (often seemingly unrelated!) Great to hear your specialist is familiar with the NCNED's work - and best of luck with your LDN - I very much hope it helps (I have heard of stories of almost-full recovery - they're very rare, but fingers and toes crossed that's what happens with you ) I've popped up an LDN thread here: https://community.emerge.org.au/topic/197/low-dose-naltrexone-ldn-for-me-cfs for all that are interested.

Admin popping in to say : contacting each other and sharing details is allowable but please keep identifying details out of the public parts of the forum We also don't have any oversight on who anybody is at all beyond seeing a valid email address and a username.. so do please bear that in mind. We don't *think * there's a liability issue for the forum owner if you sort it all out yourselves behind the scenes but be aware that we are flagging there is some potential risk in sharing addresses and real names. School teacher hat off again now! Connection is what we're here for and chat is enabled for exactly this kind of reason

This is from an online newsletter I get: *Dissecting the Nature of Post-Exertional Malaise The medical journal, Fatigue: Biomedicine, Health & Behavior published a paper by the BHC Research Team about PEM. The paper provides evidence of the differences in PEM triggers, experiences, and recovery based on illness duration. PEM occurs sooner following physical versus cognitive exertion. Participants sick <4 years experience more orthostatic intolerance symptoms during PEM than those sick >10 years. Read the full article here.*

@SandyAtHome I so relate to this!

@PaulB Thanks for sharing that I haven't heard of Dr Ruscio, but that doesn't necessarily mean much (I'm more up-to-speed with people over here than in the US). However, I would caution against undertaking any treatment based on a podcast (or, usually, any single source) alone. From a very quick glance, the podcast's results were based on one study (not of people with ME/CFS) and Dr Ruscio's personal experience (nice, but far too small a sample size even if he was rigorously scientific in his trialling, which the podcast doesn't suggest he was, and would be very difficult for an individual to do in any event, with placebo effects and other factors muddying the data). I also noticed Dr Ruscio had some less-creditable topics covered on his sight, like the Gupta method, which casts some doubt on his potential reliability as a source of information. It's well worth looking into, but rather than start a conversation on peptides in the "recent media" thread, it might be better with a thread of its own?

Testing again

@river I'm relieved to know that word exists. I had to look it up though ..haha... homeostasis, homeostasis... I've been repeating it all day. Very excited that you gave the label to what I was trying to convey ... Reading through some information is a slow going process for me. One, I may not recall the meaning of a word, or I may never have heard it! ...

@Siren said in Housebound BY CFS.: Housebound here too, sometimes in winter, bed bound. I find it incredible there are so many of us, but I’m yet to find a GP who believes me when I describe what my life is like. Just need more exercise they say . . . As they look at me in disgust. I cannot wait for there to be a diagnostic test for this, I hope I live long enough. I’ve taken up adult colouring, I used to draw and paint but it started taking too much out of me, so now I colour other people’s drawings with pencils, no mess, and can be done in small sessions. I used to write too but alas my epic novel will never be finished. It’s gotten to hard to even use my imagination. Welcome @Siren to us housebounders... It is really difficult to have to stop doing the things you love. Maybe if you feel like sharing some of your artwork it would be great to see it? There is another section here about posting arts an crafts work somewhere.... I’m pleased you get some enjoyment out of doing the colouring, I’ve been meaning to get into that. Must get some. I’m hoping someone here can recommend a good Doc for where you are..... Have you called the Emerge number? I wish I could share my GP with everyone she doesn’t take any new clients. While she doesn’t have the all answers she listens and understands now what this illness does. When I was first ill one of the GP’s I seen then basically told me to eat more broccoli among other ridiculous things. I’m hoping someone can get you onto someone who will take you seriously! As you really need an understanding GP as this illness involves so many different medical areas. I hope today is an ok day for you....

Thanks for sharing that information with us, Belinda!

@Daffy_Dave This worked for me for uploading profile photo - didn't like the jpg for some reason. Thank you!

This might sound kind of, well, obvious, but a few years ago I had a brainwave. Sunglasses. I’ve always been really sensitive to light (comes with being ASD as well) but it got so much worse with ME. Going outside felt like shining a torch in my eyes. I avoided sunglasses for years, because I always felt the arms pressed against my temple and caused headaches. But I invested in some that fit right and it’s been worth it. I no longer have to spend energy just existing when I go outside, I never realised what a difference it made before. Now I never leave the house without them, and have several pairs. @Blubenny I found a triangular cushion at my local cheap shop that appears to be designed for iPads and tablets. It’s super convenient because then I can prop it up at most angles. Obviously nowhere near as fancy as yours, and I can’t make it go upside down, but I can move it with me on the occasions I go to the lounge room as it is super light. Also, I wish you the best of luck with the NDIS. I’ve found they’re not as helpful as I’d hoped, but that could be because they only seem capable of recognising my ASD and not the ME/CFS... which easily negatively affects my life twice as much.

@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.

The sprinkler and or a hose with a squirty gun on it and make sure that the water pots are kept full. The chooks and the budgies get a good cooling down with water. We also built the cages under trees for added shade in summer and wind protection in winter.

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.