Living with ME/CFS

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  A thread for having a good 'ole vent :)
  • Daffy_Dave  

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  I barely slept last night, no particular reason, nervous system just wasn't cooperating. Feel horrible today, all the symptoms flaring. I've been doing better overall but there's nothing like a night of sleep disruption to set me back. Bleh!
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  A thread for being grateful for things :)
  • Daffy_Dave  

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  @river said in A thread for being grateful for things : Thank you for creating these threads @Daffy_Dave - great idea. I totally agree about the Internet and technology - I'm so grateful for all the opportunities for connection and support that it makes accessible to me, and many others with chronic illnesses or disabilities. Today my "positivity" share is the growing realisation that the new supplements I'm taking are making a much more significant difference to my functioning than I ever would have thought possible. I almost don't feel like the same person as I did a few weeks ago - it's wild. It's also bittersweet because there is still so much uncertainty and it's making my imposter syndrome real bad - but at the same time, it's validation and in some ways proof that I have real mitochondrial damage and that compensating for that might actually give my body a chance at healing. I'm in uncharted waters... But land is in sight Great news that you are noticing an improvement! I am excited and hoping that you will continue to see improvements..... and eventually reach the land! ️
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  How are people coping with the COVID restrictions and ME/CFS?
  • donnamarie  

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  You made some good points river and have presented a different point of view. Well, done!
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  Brain Fog Bloopers
  • crashdummy  

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  @Tess that gave me a laugh!
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  Stages of post-exertional malaise
  • river  

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  @river said in Stages of post-exertional malaise: This may not be the case for everyone (I imagine it depends on your severity) but for me there is a definite progression of PEM from "eh, I've probably overdone it but I can still function" to "feel like I'm dying". I've tried to describe the stages that lead from point A to point B for me. I think it would be interesting to compare notes. These days, I spend a lot of time in stage 1 and 2. The last time I was in stage 4 was nearly two years ago - thank goodness. I was in stage 4 most of the time when I first got sick, before I knew what was wrong with me. Of course this is more of a sliding scale rather than discrete bullet points. There are stages in between the 4 I've written down, and the severity of my symptoms within each stage can vary. But these are the major milestones I've identified. 1. Fatigue and brain fog develop after mild exertion but symptoms are temporary and resolve eventually with sufficient bed rest, hydration, sugar, etc or improve on their own in the evening. Legs may be shaky. Sleep quality is poor and sleep onset is delayed. Over several days/weeks, continued exertion leads to worsening sleep quality, increased duration of symptoms and greater difficulty in recovering from them ("rolling PEM"). Limits exertion to short periods at a time, with frequent rest. 2. Wake up feeling ok at first, but fatigue and brain fog develops shortly after waking, and cannot be shaken off though food and drink may temporarily relieve it. Cognitive exertion or stress leads to nausea, dizziness, headache, elevated heart rate. Aggressive rest (e. g. sensory deprivation) improves symptoms only slightly, or not at all. Prevents doing cognitive tasks, socialising. 3. Exhausted immediately on waking up, with persistent nauseating headache and "poisoned" feeling which can last for several days uninterrupted. No amount of rest makes a difference to symptoms. Resting heart rate is elevated; insomnia is severe. There may be increased appetite and thirst, sweating and feeling hot. Recovery requires complete bed rest for days or weeks. Prevents doing most tasks. 4. Neurological symptoms ramp up - body feels heavy, leaden; movement is difficult and may feel like wading through mud, or "laggy"; extreme drowsiness may lead to unscheduled daytime naps, slowed heart rate and breathing; there are sensory disturbances such as vertigo, nerve pain or numbness, light and sound sensitivity; other signs of autonomic dysregulation may be present. In contrast to stage 3, appetite is likely to be suppressed and temperature low. Attempting any kind of exertion may cause fainting or near-fainting. Prevents doing any tasks. @river you have done a very good job at describing stages... I relate also. I often say it feel like my cells are dying.... it is insane that awful feeling when you just cannot do no matter how hard you try....
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  Housebound BY CFS.
  cfs housebound 2000 • • Dencds  

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  @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....
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  Slight-Moderate-Severe-: How do we decide where we fit?
  • crashdummy  

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  @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?
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  Disease change over time
  • river  

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  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.
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  Food Intolerances/Allergies
  • donnamarie  

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  @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.
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  CFS-friendly recipes/food ideas!
  • river  

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  @Daffy_Dave I've been trying Dineamic too! But they have very few options that cater to my intolerances so I'm going to have to go back to one of my old faves, Youfoodz. You and @Dio_Raven reminded me of a few more tips and tricks: snap frozen veg is surprisingly tasty and requires less preparation than tinned veg, as well as tasting nicer. I recently tried frozen berries which were nice, so I'm going to try some more frozen fruit for smoothies etc. Bottled fruit is handy as well. cook everything in the sandwich toaster! It's amazing what you can make. You can fry an entire breakfast on it. One problem I often have is not being able to eat perishable foods on time. I can't buy fresh fruit and veg very often because typically I will have a nausea flare the day it arrives and it will all go off before I'm well enough to eat it. So frozen/long life stuff is essential for me. I'm eating baked beans on toast right now, a good long life option with lots of nutrients.
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  What has ME/CFS taught you?
  • RatsAreFluffy  

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  More compassion for ppl who are suffering (not just whinging!) That the ppl you think will stick around sometimes don't, and the ones you don't think will stick around sometimes do That living with this illness takes every ounce of inner strength you have, every single day. We are a tough breed!
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  Life hacks
  • Coggles77  

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  I make my mind only do 1 task at a time. If I think of more than one while doing another I get too tired and sometimes dizzy.
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  ME/CFS Lingo
  • gretch  

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  @gretch that is a great idea.
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  How helpful are holidays?
  • Jop  

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  @Jop just relating my own experience, and that also there is some anecdotal evidence that suggests, that stressful life events can not only trigger ME but exacerbate it, so maybe the lack of day to day stress would be a big part of what you are experiencing as an improvement of symptoms while you’re on holiday. Many of us are in a constant state of stress not even knowing it and, let’s face it, just having ME is stressful. And our ME bodies don’t handle stress in a normal way, they overreact to it and then cannot switch it off easily and that has to be a huge source of energy drain and a nasty self perpetuating cycle. I’ve found that managing stress levels, with meditation, progressive relaxation and creative hobbies, has been one of the most effective treatments I found, for reducing my pain in particular. Anyway, anything that reduces stress has to be hugely helpful. There’s also a thing with the negative ions generated by the waves at the beach. Read up on negative ions and health. I know that being at the beach is hugely mood lifting for me. So there might be something to it ️
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  Life with ME
  • MariaMaria  

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  @SandyAtHome totally agree. No one sees the aftermath of even the effort of a phone call and very hard to explain to people that saying "you look well" makes you wonder how awful you must've looked the last time you saw them if this is an improvement of if they see you at all.
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  Travel tips?
  • Jen_Em_Aus  

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  Thanks all! We had a brilliant weekend. Son took it very easy and paced cautiously, but went for a few short wanders (we were staying right on the beach). He was very mumbly by the time we got home last night, always a worry, but he’s ok today - just a little quiet but very happy and well pleased with himself for managing. It did a lot for his confidence so we’re thrilled.
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  Chronic Disease Management Plan?
  • passiflora  

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  @river You are referring to a Mental Health Care plan which I think from memory covers 10 therapy sessions. It is the same concept.