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Supplements and activity designed to improve circulation - an experiment.

Discussion in 'Other treatments' started by Wonko, Feb 8, 2019.

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  1. Wonko

    Wonko Senior Member (Voting Rights)

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    Friday;

    There seems to be no question that my energy levels are too low to go out today, despite the frustration I currently feel about that, and it's also supposed to rain, heavily, this afternoon. So probably an idea to give it a miss.

    So far I haven't had all my morning meds/supplements. I have had the porridge/ginseng/cocoa mix - it was horrible. I've also had around 25g of tiger nuts and a portion of lentil and kale soup, which is on the turn but there is only one portion left, it's still edible, and hopefully it will last until tomorrow.

    I needed to get some shopping today, fruit, nuts, seeds, milk, that sort of thing, but clearly that will have to wait until tomorrow.

    Today, washing (didn't get done yesterday), hoovering, bath, probably not a lot else. I have a couple of small things to do in the loft but pretty sure my left leg won't react well to a ladder, so yet another thing I can't do.

    Since I ran out of bread my body is demanding another source of calories to make up for it, despite my eating too much anyway. Seems to be a near inevitable consequence of my actually moving. Last night that was a small portion of air fried chips, at midnight - so not good. Reverse loading is never good, at least for me.

    In the last several weeks I have gone from 14st 6lb to 15st 5lb. Some of that will be undigested food, as I am eating a lot more, some of it will be my muscles refilling (I now have muscle tone again), but some of it will be fat. I really don't want to put on any more weight, so a solution that doesn't involve will power will have to be found, as all of that's being used for other things.

    I did manage to get around 7 and a half to 8 hours sleep last night, so that's good. After that, not a lot has happened.

    I am currently not good at sitting around. TV has no interest to me, the internet is boring, reading, well, that's a bit advanced right now. My mental state is suffering, I need something to push against, even if that's my own broken body (my left calf is still damaged, as is my right hip).

    Last night I found out that a requested visit to see my sister, assuming I am still up to it, that I had envisaged as occurring in the next couple of months, is unlikely to happen, to be convenient for her, until bloody August. The chances of my being functional enough to travel 300 miles, each way, and still be worth doing for anyone, are slim to nil. Even if my health doesn't decline further the chances of my having the resources to achieve this are slim, I've already pushed the window my resources were allocated for out twice, adding yet another 6 months, I can't see how I can manage that, my resources are fixed. They were only intended to last until mid February. I am still here simply because I found something that seemed both challenging and interesting to do, that might teach me a little about myself, and because I haven't yet deteriorated to the point where continuing would be pointless.

    But bloody August.......
     
    Last edited: Mar 8, 2019
  2. Wonko

    Wonko Senior Member (Voting Rights)

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    I got 4-5 hours sleep, no idea why, brain wouldn't shut down.

    I've had meds/supps and horrible chocolate/ginseng porridge - it seems spending 5 minutes whisking it all together before cooking doesn't help much - no longer particularly bitter (which is a concern in itself, is cooking it damaging the active, bitter, components?). Just brown sludge.

    When I went to put out recycling I found my body currently doesn't really like stairs, it detests them, not unusual but I am hoping to get a little shopping today and most shops are downstairs, so....potentially a problem.

    I'm going sturr crazy, I need the shopping, at least some of it, and I did a lot of unnecessary eating yesterday (frozen pizza, 6 burritos for tea/snacks, extra portions of nuts), possibly out of boredom, so I may go shopping anyway, even though I know I should really rest for at least today, again.

    It's unlikely I'll get anything of note done at home today, given that the first thing that needs doing is getting something down from the loft, and I don't trust my left leg on a ladder. Apart from cleaning a big window most other stuff has been done, anything else would just be makework.

    If i do go out it may be only one way, walk up, spend a little time in the park, get shopping, bus back - cutting a 6000-7000 step trip down to 4000 ish. Even though my primary aim is shopping, and my secondary is to spend more time outside, I think doing as little as possible to achieve them is probably wise. Well. not as little as possible, I could catch the bus both ways, or use the corner shop for milk, but......lol

    Today i have the last portion of lentil and kale soup, if it's edible, there is probably enough burrito mix left over for 3-4 burritos, and chilli (or bolognaise) for tea, so probably well over 2000kcal of food that needs to be eaten today.

    Or I could decide sod it, and make a macaroni cheese, probably close to that by itself, of course milk is handy when making that.

    I suspect that yesterday, today, and tomorrow will be right offs, on all levels, so why not eat something I rarely do, that I like?
     
    Last edited: Mar 9, 2019
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  3. Wonko

    Wonko Senior Member (Voting Rights)

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    Sunday;

    I got about 8 hours sleep, maybe a little more, although the last couple of hours were quite disturbed.

    Diabetes meds taken around 11am, maca/l-arginine (2g/850mg), ginseng (300mg), pine pollen (500mg) allegedly an androgen, rebalances hormone levels (?), DHEA (25mg), D3 (3000IU), K2 (200mcg), butea superba root (400mg), taken at the same time.

    Still got to take citrulline malate drink with boron/zinc, I reached saturation with magnesium a few days ago so I've stopped taking that for a while.

    The doses and range of supplements I am taking is decreasing, mainly as I get used to what effect they have, and some others that i was taking routinely are now reserved for specific situations.

    Either the maca root supplement I am now taking, primarily to keep cortisol levels under control, is less effective than the previous one I was using, or the level of activity I was undertaking last week was higher than even the increased dose I was taking could compensate for.

    Walking/exercise will have to be majorly adjusted. In common with every other attempt at exercise I have undertaken in the last 20+ years, at least one rest day afterwards seems to be mandatory, quite part from the way I feel the next day, any symptoms or PEM, I have now noticed that some things just work better if I rest. Not an unusual reaction even for those without ME but the level of 'exercise' required to require rest is a little 'disappointing', totally expected, but disappointing. As far as I am aware the 2 most likely drivers of this, as opposed to any PEM etc., are cortisol rising during and after exercise, as a stress response, and testosterone being used up and needing time/rest to rebalance. But I may be wrong.

    I have however pushed the extremes of range out to where they were in about 2006, roughly double what I currently need them to be, so I can afford to be a little more relaxed about the whole thing. Walking was only ever about 3 things; trying to maintain a useful range, to keep my circulation moving, and allowing me to get out, to not sit/lie around all day with no other options.

    I didn't get out at all yesterday, so I still need shopping, basics. Although I won't starve, or even go hungry, I have now run out of fresh stuff, the allegedly 'healthy' stuff. I haven't decided if I am going to attempt a shopping run today or leave it until tomorrow, although it seems more likely it will be tomorrow.

    Things are basically not going as planned, or hoped. If i do the walking then other forms of exercise (minimal, under 4 minutes of isometrics a day, split into a morning and evening session, so 2 minutes a session), diet (when I've overdone it, even if I don't know I've overdone it, my diet suffers, both in my 'choices' of food getting really bad, and in overeating, although that's probably a consequence of the food I am eating) and self care don't happen. I need to find a balance, if that's possible.

    Evening meds have now been reduced down to the maca/arginine capsules, I am considering adding another lot of DHEA/pine to it tho.

    Last night I made a cocoa drink the traditional way, heating up milk in a saucepan. It needed quite a lot of stevia, it was far too rich (so I can see why people may be using skimmed milk rather than the semi skimmed I used) and basically never seemed to cool down. It was a very annoying drink. I will try it once more with skimmed milk, as and when I have milk, but it's looking like just too much work, it's easier to put up with bitter brown slop for 'porridge' in the morning as a method of consuming cocoa.
     
    Last edited: Mar 10, 2019
  4. Wonko

    Wonko Senior Member (Voting Rights)

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    Monday;

    10 hours sleep, it was very hard work but I persevered.

    Managed everything I was supposed to do this morning, this morning, including a bath. I was ready, and capable, of going out this morning. That didn't happen, no idea why.

    So I did what was supposed to be Saturdays shopping trip leaving at 2pm. It didn't go according to plan. I knew before I left that leaving at that time would cause school related issues for getting the bus back, so I decided to leave later, after the school rush. Then next thing I know I've left, and although my plan was to walk up and catch the bus back, school rush issues meant I walked back. Turning a 4000 step trip into 6700, when I specifically wanted it to be a 'short' walk today while I assessed my condition. With rests I was out for a little under 2 hours, so my pace is still only around 1 mile per hour.

    My condition is not good, better than the end of last week but not good, so although I only managed to get milk and fruit, the veg, meat, fish and salad shopping will have to wait for a couple of days at least. Or be ordered for delivery.

    I ordered a smartwatch (a Garmin vivomove HR Hybrid, more a watch with some activity monitoring than a full on activity tracker) this morning, one that monitors activity all the time (as opposed to my phone which only does so outside). I need more metrics, to see how much the walking is shutting down other things, it feels like it's crowding everything else out, but without the numbers who's to know. I'm also considering ordering a flask (haven't owned one in over 30 years) so I can have 'lunch' in the park, probably in a hurricane, it never fails to rain at least when I need to rest there. And maybe catching a bus. to a different park, to sit and feed the pigeons, to the squirrels, or the other way around, I'm not fussy. So some form of high speed catapult may be required, if they are still legal. Joking, of course they aren't legal, what was perfectly fine for me to own, and use, when I was 4, is clearly too dangerous for anyone to own now.

    I am definitely coming to the conclusion that I am missing something, as 'improvements' and deterioration don't seem to tie into anything. Yes there is deterioration caused by damage to my body, yes there is PEM, all of that was expected. I'm even lead to believe (the other place) that my appetite going berserk is just some weird type of crash behaviour. There are some improvements caused by the supplements, probably short term, but other improvements/deteriorations seem to be essentially random, once I've taken rest levels into account.

    I'm missing something
     
    Last edited: Mar 11, 2019
  5. Wonko

    Wonko Senior Member (Voting Rights)

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    Tuesday;

    About 6 hours sleep.

    Had breakfast (boiled eggs on toast), meds and supplements (as above), lunch (baked potato with tuna/sweetcorn and mayonnaise). Nothing else has occurred or is likely to. Probably chilli for tea.

    It seems today is a rest day. If I get really, really bored then I may venture into the loft to reset the tv tuners, one of which seems to have disappeared from my network. I think my left leg is probably now capable of supporting me on a ladder.

    Might put on some washing. I need to put on some washing.

    One of those days. that a few months ago I would have considered a busy day, possibly attempting more than one thing beyond bare survival. Now it's a waste, a necessary waste, as it seems my body is hinting it would like more rest please, but still a waste. I have things to do, many probably ultimately pointless things, and today was the only day where according to the met office the weather isn't going to be atrocious this week.

    Never mind.

    ETA

    After posting the above I got annoyed, and came up with a plan. Go out, just for shopping, and to check how big a 1L flask was in person, as opposed to a picture on amazon that tells me nothing. Catching the bus both ways, approximate step count of 1200-1400 for the total trip, including walking around sainsburys.

    So I caught the bus, picked up some shopping, including a few things I shouldn't have (trifle, beer) and attempted to catch the bus home. The bus shelter announced the next bus was in 26 minutes, it's supposed to be a 12 minute service, it wasn't rush hour yet, and a woman who was there when I got there said she had been waiting for over 10 minutes, so I hadn't just missed a bus.

    This was at 16:48. I waited until 17:00, 12 minute service remember, so I waited 12 minutes, which is damn nice of me.

    I then gave up and decided to walk back. The bus went past me at 17:25, from which I deduce that it was late, and if I'd of waited for it then I'd of been standing there for 40 minutes. I can't stand for 40 minutes, not if I want to be able to move, so I could, you know, get on the bus.

    So I walked back, 4700 steps (total), just before I got back home it went from keep pushin on to damaging. Neither leg works properly now, standing is not fun, my legs and feet wish me to not do it, enthusiastic they are in informing me of this desire.

    I really must pay more attention, when I can't get down the stairs other than by single stepping it (i.e. can;t walk down them anything like a normal person would) then I really shouldn't be going more than a few meters from the bottom of them. Oh, and I really should remember that the local bus companies think that timetables, and buses, aren't their concern. For some reason I keep assuming that the next time will be better, despite that it never is, hence why if I'm capable I will walk. Buses, even less reliable than cheese kettles.

    Doubt I will be able to do sod all tomorrow now, entirely my own fault, largely for assuming that other people give a stuff about the service level they provide, but still my fault.

    The tv tuners in the loft, not sorted, the washing, not done.

    ETAA - and now I'm bloody feverish, I knew that last 100m was too much.
     
    Last edited: Mar 12, 2019
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  6. Wonko

    Wonko Senior Member (Voting Rights)

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    Wednesday - no idea how much sleep, some.

    Today was supposed to be a full on rest day as I overdid it a tad yesterday, but when I got up I had no PEM, legs that felt as if they were in casts but no PEM - at least not physical PEM, my cognitive ability is slightly variable today.

    My new (amazon warehouse) smartwatch turned up about 10am, went to turn it on and nothing, so put it on charge. Some nice electrocution, of me occured, along with some teeny cute blue sparks. So I checked it, connected it again, not believing that a USB lead, plugged into a PC, can deliver enough voltage to cause sparks, not without blowing something up anyway.

    It did again, so I tried again, and again, and eventually came to the conclusion it is what it is, this is what it does. So I left it to fully charge.

    After a small period of time where it insisted on communicating in French, despite being set to 'EN' it started to communicate in English. No idea why, the online manual didn't say much on the subject of changing language, it just used emoticons which were impossible to access on a smartwatch that was by this point completely unresponsive.

    But it started working, I have derived some numbers, and learnt some things. Things like wrist based step counters don't work if you're using a shopping trolley, and the difference in steps between my phone and the smartwatch suggests that on a long, confused, wander around my local sainsburys I do around 500 steps, as this was the difference between the 2 counters.

    I've also determined why I may be wearing myself out, the smartwatch suggests that in under 8 hours, mainly sitting on a sofa, but including the trip out (walk to bus stop, bus, walk around shop, bus, walk home, routinely around 1200-1500 steps), I have currently done 151 intensity minutes at the normal settings, a week's worth of exercise for a normal person. Whilst mainly sitting on a sofa or pottering.

    Since I put the watch on I have allegedly burned 2200 kcalories, my stress level is high, probably derived from the fact that my heart rate is also quite high, at times it will drop down to high 60's - low 70's for a while but mainly it's in the high 90's, rising to about 120 if I have the audacity to move, or feel pain. So the poor little watch seems to think I'm running or something. I suspect it's simply a physiological response to a minor crashy type thing. Although, cognitive issues aside, I don't feel crashed, I feel broken.

    Too many words, leant more than that, watch will go back as can;t be arsed with it electonuting things, just deciding if one that doesn't is worth ordering again.

    ETA - took me until 4pm to finish my 'morning' stuff, meds, supplements, etc. Still not sure if I did everything or if I'm remembering another morning into the blanks. Cognition not great right now.
     
    Last edited: Mar 13, 2019
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  7. Wonko

    Wonko Senior Member (Voting Rights)

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    Been a while.

    I've had to take a lot of rest days as I keep stalling/crashing.

    I've purchased a fitness tracker, a garmin vivoactive 3, to see what's actually happening.

    The results are 'interesting'.

    I can, I think, spot crashes, when they are still subjectively within normal symptoms ranges, masked by PEM, and also see how effective my attempts at resting are.

    The results are far from conclusive, only had this particular smartwatch for a week so a lot more data is needed.

    Things are much more at the level of 'that's interesting' than anythings else.

    I'm fairly sure I know why it feels as if I'm working really hard the days after 'activity', even when doing nothing. It seems to be, my smartwatch suggests, because I am working really hard. Lying on a sofa, making a cuppa, all become difficult enough so that I rack up 'intensity minutes', a lot of them, whilst doing basically nothing, whilst being almost totally immobile.

    (Added - To give an example, in the last week I have racked up 616 Intensity minutes. The equivalent of over 10 hours exercise. I got this watch on Sunday, I was unable to go out until Wednesday and was surprised to rack up 30 IMs before that, but the watch hadn't had it's calibration session so I ignored them. On Wednesday I racked up 120 IMs, mainly in a walk of just under 2 miles, at an average speed of 1.5 mph. Thursday I did nothing, but racked up 104 IMs. Friday I did nothing but gained around 200 IMs. The rest have been racked up since, mainly in 10-20 IM jumps, whilst doing nothing, sitting on the sofa. But the pattern appears clear, recovery is more demanding than 'exercise', and this can, apparently, be measured. Possibly explains why doing stuff whilst 'crashed' is such a bad idea.)

    I am modifying my supplement regime a little.

    I am adding alpha lipoic acid (2g a day).

    I am changing my l-arginine, to powder, and again increasing the dose, I am switching to 5g twice a day, with a little citrulline mixed in. To bring it in line with Fluge's NO study - largely discredited, or at least ignored, but as my intent is not recovery, just to improve my circulatory system it seems a like a good place to move to and see what happens. I have been unhappy with the results of a combined maca/arginine capsule I switched to a while back, so a change was needed.

    I am looking into undenatured whey but haven't formed any conclusions yet. It's just on a list of things to use to try and increase Glutathione production.

    I will probably go into more detail on the smartwatch itself, the data collected, and it's limitations, in the using a fitness tracker to monitor HR thread.

    ETA - I also seem to have data that suggests my 'shut downs' are, as they feel, completely different from sleep. High HR, high enough to trigger the watches 'abnormal' HR alarm (currently set at 120 bpm but it takes 10 minutes at that level to activate it). High 'stress' levels. All while sitting fighting for consciousness, and generally losing, doing what must look like nodding off due to 'fatigue'. whilst 'shut down' I get virtually 1:1 intensity minutes, probably due to the elevated HR.
     
    Last edited: Apr 7, 2019
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  8. Wonko

    Wonko Senior Member (Voting Rights)

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    Last night my left achilles tendon finally aggravated me enough to google it. I discovered that the pop and collapse of my left ankle a few weeks ago should really have had treatment. It's still too tender to touch, getting annoying. But I still have things to do, so I'm probably, almost definitely, going to continue with the tried and tested method of dealing with problems, ignore it and hope it gets better on it's own.

    Also last night my ALA and arginine powder arrived, along with a bulk powder mixer (basically a lidded cup with a steel wire ball in). 100g of arginine powder is basically none, it's going to be a challenge to get it to last the 9-10 days I estimated. It is supposed to be a fairly fast acting 'treatment' which is why I went for the smallest pouch available. My resources are not what they were even a few months ago, even my credit cards are basically maxed out.

    So I mixed up approximately 5g of arginine with approx. 2g of citrulline malate, with a little squash and some water.

    The result is odd tasting, but perfectly drinkable. Also took 1g of ALA with it.

    I ended up going to bed around 9.30pm, a lot of hours earlier than normal. Coincidence or as a result of it I don't know.

    Woke up around 6am, in a significant amount of pain. Felt like my insides were being stretched/ripped apart. So couldn't just lie there. Probably just slept wrong.

    Today I needed to make two semi urgent phone calls, being up early should have helped with that, jump in as soon as the call centers open the lines. Didn't happen.

    I have managed to organise 2 parcels that need to go back to amazon before the end of the week.

    I've had an arginine drink, with ALA, my diabetes meds, Vitamin D3 and associated stuff, testosterone precursors and not much else supplement wise. I've also had 2 coffees and a cocoa drink. I am in no mood for breakfast.

    Plan for the rest of the day is bath, walk into town to get electric and post stuff to amazon, maybe pick up some more milk, decide if I am up for walking back or if the bus is more suitable.

    I have some homemade wholemeal bread, salad, eggs, tinned fish, tinned meat etc. for breakfast/lunch options after I get back from town.

    Tea will be a chicken thigh with a few small potatoes, carrot and half a head of broccoli, with some very poor gravy I made up last night when I had the same meal.

    One more lot of arginine squash with ALA and one more cocoa drink needs to be consumed, along with at least 2 apples and a 100g or so of black grapes.
     
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  9. Wonko

    Wonko Senior Member (Voting Rights)

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    Been out, despite my numbers suggesting it wasn't a good idea after I'd had a bath.

    Walked into town, stood in post office queue for 20 minutes (ish), caught bus to sainsburys, caught bus home.

    A total distance walked of 1.21 miles. Time taken about 2-2.5 hours.

    My watch informs me I have gained 174 intensity minutes in doing this, 55 of which were classified as 'vigorous exercise'.

    Which I find puzzling, fairly sure I would remember even being out of breath, and I don't. It wasn't easy, fair amount of pain, but vigorous exercise? I think not - it was too slow to be vigorous anything lol.

    My HR peaked at 136 (that I know of, I wasn't watching it continuously, or even much, I was just bored so looked at my watch to see what the time was, and flicked through to the HR screen), whilst stood in the queue in the post office. Not sure of the significance of that but it also reports a peak of 116 whilst walking, so standing, doing sod all, is more demanding than moving, it seems.

    ETA - It may have been a bad idea to go out before eating. I seem to have bought mainly heavily discounted bread and meat, 2 things I am trying to restrict (at least I managed to forget about ice cream using the method of buying some frozen chips I know are horrible, so probably won't eat). I did manage to get more milk and salad, which is what I went in for, which makes a change.

    Meat and bread have mostly gone in the freezer, I don't even really want any bread, but who can pass up bread at 19p a loaf, normally £1.30, or wierd bread with a similar mark down. The only bread that's stayed out is a small baguette and 2 scotch rolls.

    They don't exactly fit into my meal plan for today tho :(

    ETAA - Tea was sausage and chips - inna bun, not the chicken and steamed veg it was supposed to be (sure I've mentioned difficulty with food choices when I get run down, that with my numbers say tomorrow is likely to be fun - and I still have those 2 damn phone calls to make tomorrow)

    Still got 2 apples (yuk) and cocoa drink to consume today (also yuk)
     
    Last edited: Apr 8, 2019
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  10. Wonko

    Wonko Senior Member (Voting Rights)

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    Regretfully I woke up. (6 hours 'sleep')

    My first thought was something along the lines of "Arghhhh!!!" - only not as articulate.

    My numbers probably suggest that my body is currently undecided as to whether to enter a physiological crash state, or not.

    But it's difficult to be at all sure coz I can't remember how to get some of the metrics I use out of the software. As I've been doing this at least a couple of times a day for the last few weeks this probably isn't a good sign.

    So far in the last hour and a half I've managed to make a coffee and drink half of it, it's now cold.

    Still got the 2 phone calls to make and I don't think they will happen today, at least not this morning, and both of them have bad customer service re actually answering the damn phone. So even if I manage to ring them it could be hours on hold, each. Not strong motivation at this point.

    One is to scottish power, to try and get them to issue my warm home discount to the correct address. The other is to utilita to cancel a switchover that was arranged last wednesday, when it must of been obvious to the guy, on my doorstep, that I wasn't mentally competent to make such a decision. I couldn't even operate my phone to answer it, and despite my attempting to call a halt to what suddenly became a switchover somehow I am in the process of being switched over.

    I've looked them up, top ups that don't happen, terrible customer service, misleading selling, obsolete and incompatible (with any other companies) smart meters, unhappy engineers, under investigation by ofgen for dodgy signups, etc.

    So it needs to be canceled - before next Wednesday.

    Got to go out, just to the electric meter, down stairs, in the underground car park, as I wasn't up to it when I was out yesterday. Bought some electricity but actually putting it on the meter didn't happen.

    Other than that it's supplements, drinks, try and keep the food in line with aims (seeing if the food I was supposed to eat last night will be okay for tonight). May wash sheets if I feel like it's possible I may be capable of putting them back on the bed afterwards. They probably need doing but another day won't do any harm, but I've been saying that for at least a week ;)

    History suggests I'll either be fairly quiet today, or prolifically bizarre.

    My apologies if it's the later.
     
    Last edited: Apr 9, 2019
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  11. NelliePledge

    NelliePledge Moderator Staff Member

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    OMG @Wonko I saw you were 20 minutes standing in a queue a nightmare on many levels. I hope you manage to do your essential stuff today.
     
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  12. Wonko

    Wonko Senior Member (Voting Rights)

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    Despite my numbers suggesting my body is trying to get into a recovery phase (slightly elevated HR that doesn't over react, much, and a 'stress level' that's moderate to low but never in single digits, which it does once it's decided to rest, whatever I want) I feel basically okay with a couple of exceptions.

    Moving, it objects. I can sit here, doing not a lot, without much of a problem but if I have the cheek to want to get food, or a drink, it bitches at me.

    I'm hungry, I've done little but eat inthe last few hours, 6 slices of bread, most of a tin of corned beef, half an onion, 3 coffees', a few other drinks, and about 200g of grapes. I'm stuffed, but I still want more food, like yesterday.

    I'm cold, all of me, but specifically my toes. the base of my feet feel like they are in cold water, moving cold water. I noticed this a couple of days ago, it corresponded with the morning after I started the ALA. WHen walking it felt like my feet were sloshing in cold water. This is the first time I've felt it, with the motion, when stationary.

    Hopefully it's the nerves heeling, something ALA is 'supposed to' help with.

    Be annoying if its the new 'normal'.

    So....done all teh stuff I shoudl have done this morning, apart from phone calls, tonight may be the chicken I was supposed to eat 2 days ago if it's not too yuck.

    Nothign else will occur today other than evening meds/supps ans one more cocoa drink.
     
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  13. Wonko

    Wonko Senior Member (Voting Rights)

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    Definitely in a slump, my body has not, so far, entered into a recovery phase, where HR drops and HRV rises, sleep is erratic, shut downs are occuring, the phone calls still have not been made and my alternate of sending the cancelation form by RMSD hasn't happened, as I'm not up to a bath let alone going out and standing in a queue.

    I am maintaining most of the supplements, the important ones anyway but other things are inconsistent, and mainly not happening.

    If I had enough energy to get frustrated it would be frustrating.

    I gave up on today a few hours ago, it would be justeat for tea if anyone would supply a big meals worth of food and deliver it for the 2 quid I have in my account until 1am. This is unlikely, so it looks like the known disgusting chips I bought a while ago come into the mix.

    Let's see what tomorrow brings.

    (to bring this post on topic; I have no idea if any of this is improving circulation, I have noticed that increasing the l-arginine does make some things feel better, but it appears to have downsides that more than remove that 'advantage', at least initially. It's yet another wait and see thingiemabob - the downsides could all just be things catching up with me, coincidence)

    ETA - just noticed something that may be relevant - it appears I'm not getting a significant amount of REM sleep - a whole 4 minutes last night. Somethong to keep an eye on, but I'd forget which is why I'm noting it here. I've taken 1-2ml of oramorph to try and ensure I get more than 4 hours sleep tonight, and that I get ot sleep before 6am, as I need ot get a letter posted later.

    I also dropped the evenoing dose of arginine, as the sleep problems have been since I increased it, although I changed a couple of other things, which have also been omitted tonight, I need to get sleep, that's more important right now.
     
    Last edited: Apr 12, 2019
  14. Wonko

    Wonko Senior Member (Voting Rights)

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    I found some whey which appears acceptable.

    There appears to be a lot of hype around whey, and the main users do not have the same aims as I do.

    Code:
    https://www.amazon.co.uk/gp/product/B00SP30L94/ref=ox_sc_act_title_2?smid=A3P5ROKL5A1OLE&psc=1
    There are better wheys around but they all seem to suffer from some problem or other, ease of mixing, taste, cost, etc. Whilst I'd prefer one didn't use an artificial sweetener it seems these do not mix well, and I don't want to be mucking around with a blender.

    I'm switching the l-arginine powder to

    Code:
    https://www.amazon.co.uk/gp/product/B01FI18OZ8/ref=ox_sc_act_title_1?smid=A2USH43P966G34&psc=1
    I am uncertain as to the desirability of doing so, everything I read suggests this is a better absorbed form of arginine, but it's all slanted towards people who work out. I am currently unable to determine if better = faster and if this is desirable in my case, given I don't just want it to hang around for an hour or 2, I want it to be in my system and raise NO levels 24/7.

    So a little unsure, I'll give it a try.

    I've added NAC, ALA and ALC.

    I'm trying to find an affordable preferably single pill/capsule multivit with minerals that uses bioavailable forms. This doesn't seem to exist.

    I'm, broadly speaking, following this page

    https://drhyman.com/blog/2010/05/19/glutathione-the-mother-of-all-antioxidants/

    regarding what to take to help increase glutathione levels, a lot of the same supplements/changes also raise NO levels.

    I wish to increase glutathione levels as it's used help cellular repair and detox, something I feel many of my cells could do with.

    I am still some short bits short, mainly vitamins and minerals.

    I can get B complexes with a few other bits in, all bioavailable forms, but it's a minimum of 2 capsules a day, at least £1 a day just for that. Vitamine E, that appears to be the same cost per day, fish oils, even more for decent grade ones.

    Looking at ZMA mixes, again multiple capsules a day, starting at a quid a day and rising.

    Trying to balance things, to find a combination that doesn't overlap on constituents, and keeps the cost and number of capsules/tablets as low as possible, seems to be beyond me.

    I have very limited resources to do this, especially on an ongoing basis (I'm currently paying for this batch out of the refund for a defective smartwatch which was intended to lower my CC balance, not for this), so getting it right, as soon as possible, is necessary.

    I am seeing some positive results, in between crashes, and my cognition appears a bit clearer, faster, and slightly broader. I am still basically a vegetable tho, but the trend appears upwards - either that or self monitoring is failing.

    Physicality, slightly easier to move, to get things done, but my ME isn't really being touched much other than a reduction in PEM, as most of my PEM is and has been cognitive for the last couple of months, which could be coincidental. That wasn't specifically an aim of this, but not gonna grumble if I dont keep getting slammed by PEM.

    Crashes on the other hand, they seem to be taking longer to resolve, getting annoying, taking so long to even shift to 'not doing damage' let alone 'recovery phase' it's proving difficult to allow sufficient recovery time. I can allow for losing 3-4 days between stuff, but that's not enough right now to allow a full on rest state to occur, something that a few weeks ago happened within a day or so. It was quite marked, suddenly for no obvious reason my HR and stress levels would drop below levels I achieve in sleep, and stay there for several hours.

    Not happening this week.

    ETA - but shouldn't grumble I suppose. Whilst I may not have got the beef casserole in the slow cooker yet, which means it will end up in the pressure cooker, which doesn't like beef for some reason, haven't even started it.

    What I have done is flipped and turned my mattress, putting the sheets in the washing machine, and, and this is the unusual bit, hoovered and dusted the chunky wooden bed frame. It's needed it for about 2 years, but who has the time or the energy to do daft stuff like that?

    ...and it wasn't difficult, and I feel broadly speaking okay ( added - but I've just noticed my vigorous exercise count went up by 23 minutes doing so).

    Now I've just got to put fresh bedding on the bed, and you know, actually start preparing tea - then I can consider taking my morning meds and supplements and maybe breakfast in a few hours (it's currently just before 1pm lol).

    I suspect that may be it for the day, that's several days work normally. 3 things accomplished, assuming I do manage to sort out the stew, a good day)
     
    Last edited: Apr 14, 2019
  15. Wonko

    Wonko Senior Member (Voting Rights)

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    Thursday 18/04/19

    Definitely crashed with significant PEM. Can still stand and walk but weak, unstable, dizzy.

    IM's going on at an alarming rate given I am not doing anything, but noticed this before as an apparent marker suggestive of physiological crashing, taken it as diagnostic. So far at 556 (started at 384 when I got up), so 160+ up, in 3.5 hours when I've only walked 544 steps inside my flat.

    Things haven't been right for at least a week, oddly roughly corresponding with when I stated milkthistle, but that's probably a coincidence. Body is not entering a recovery phase according to my trackers metrics. Deep and REM sleep are practically non existent) although I suspect a bug in the softwares sleep stages interpretation.

    I have taken diabetes meds, simple protein stack (arginine, citrulline, l cystine and one other bit I forget) in whey mixed with skimmed milk and some extra cocoa powder, NAC, vit d and K, and not a lot else. ALA and a few other things, specifically the hormone modifying stuff, have been dropped until i feel a bit better. If I can't move they are all pointless anyway.

    I get the definite impression that doing anything more demanding than blinking is probably a bad idea today.

    So yet another day wasted, sat/lying on sofa, possibly getting fat (although the tracker insists I am burning crazy amounts of calories I find it difficult to believe it).

    ETA - also running a temperature, noticeable but not extreme. If I remember then I may check it with a thermometer later, just out of interest, if I can remember where any of the 3 thermometers I own are currently located. Probably just a result of being over tired and a high HR.

    ETAA - 37.4C, meh, doesn't mean anything other than it's at least 1.5C higher than last time I checked. It certainly doesn't mean I am feverish even though it feels like I am.

    I 'remember' this, from 25-30 years ago. I actually used to go to work feeling like this, for as long as I could. If I could stand up I went to work. Simple, if not a sensible, rule.

    Well before I knew anything about ME. I just 'knew' (gathered at some point) that if I worked too hard I got ill.

    It's a genuine olde worlde crash.

    What I can't remember is how long these things lasted, but I suspect that's not relevant as I don't think I ever tried resting my way out of them.

    I really don't want to have to mess around with Mondays arrangements.

    ETAEMS (even more stuff) - it seems co-codamol is reasonably effective against this, took 2 earlier and not as limited or dizzy. 2 more might get rid of most of the remaining noise. A class of drug I didn't have access to 30 years ago.

    What it does not do is slow my HR or the ridiculous rate of IM accumulation (well over 500 so far today, 909 steps). It may be dropping the 'stress' level but that isn't unexpected given pain levels, burning and aches are reduced, and I can now move my head without much vertigo - so it's not unexpected that'stress' levels would be lower with those symptoms reduced.

    Now I've just got to build up motivation to do food, everything prepped just not turned on yet - been that way for a few hours now. Fairly sure I don;t want food yet.
     
    Last edited: Apr 18, 2019
  16. Wonko

    Wonko Senior Member (Voting Rights)

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    Despite near continuous crashing I haven't given up on this.

    I'm using the 'experience' gained to gather data and refine things, as well as identify problems/issues both with my methods and problems I am encountering.

    Yesterday, due to having time on my hands, a certain amount of frustration based energy, and my numbers suggesting it was okay, I went out for shopping.

    I intended to catch the bus both ways, but due to it being rush hour, and bad timings wit the buses, I ended up walking both ways, as it was always just missed a bus, walk to the next stop rather than stand, and by the time I got there, just missed the bus. So walking both ways it was, just over a mile each way.

    I determined fairly rapidly that my numbers being good didn't mean my body was up to it, it's been a few weeks since I attempted that sort of distance and my body was weak, unsteady, slow, and just generally bitched a lot.

    But it did it. I did little else apart from sleep, lots, and eat, when I got back.

    I slept okay last night but when I got out of bed this morning I nearly fell over, my ankles, neither one of them, wouldn't take my weight, or bend, without informing me that this was not what ankles were for.

    Both achilles tendons are tender, sore, and inflexible.

    This seems to be recurring issue number 1, it, or something very similar, seems to keep happening when I try and walk outside distances. I need to find a solution as walking when they are like this is tiring, slow and a tad risky, as they have no strength and are useful for stopping falling etc. It's also quite painful.

    So I need to find a way or stopping this happening if I am to continue walking and keep the damage/strain on the rest of my body as low as possible.

    So far I haven't, but I was thinking of it as odd isolated injuries, when it's not, probably, it's a pattern, and as something that keeps happening it needs addressing.

    One of several things....TBC when I get around to posting them.

    ETA - Walking? Why? It seems the 'gentlest' form of exercise that I can do which is also useful, not duplicated effort, as I do need to be able to get to, and maintain the ability to get to, my local shops. The other reason for doing it is to try and counter suspected/likely hypovolemia, more on that in a future post
     
    Last edited: Apr 26, 2019
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  17. Wonko

    Wonko Senior Member (Voting Rights)

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    Okay - next thing.

    It's very likely I have hypovolemia, all of the research I've read suggests I should have, at least to some extent.

    It can take as little as 5 days immobile to lose up to 25% of blood volume - which in my case would be 3-4 pints.

    It would explain some of the very rapid weight loss I experience after periods of pronounced inactivity (even for me lol). It would also explain the very rapid weight gain, of several pounds, once I start moving again, above a certain activity level, that appears to be largely independent of diet (i.e. I'd need to be eating 10k calories a day to put on weight that fast).

    Hypervolemia, on one level, if you're healthy otherwise, is easy to reverse.

    As little as a days normal activity levels can do it, or isometrics, or basically most, if not all, forms of movement that activate muscle.

    But maintaining things with ME, that's hard, I haven't managed it yet and I've been aware of the issue and trying to deal with it for months, several months.

    The problem is, even when healthier than now, doing any form of 'exercise' or increasing my activity levels crashes me to one degree or another, and stops further attempts for a few days at least, undoing everything I was trying to accomplish.

    That's just ME, but there has to be a way around it, surely.

    I'm not trying to get 'fit', I have no plans to do a 5K or anything so ridiculous.

    I'd just like an appropriate amount of blood in my body, to see if that helps with anything, as being 3 pints down, that's over a headful.;)
     
    Last edited: Apr 29, 2019
  18. Trish

    Trish Moderator Staff Member

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    Hi @Wonko, I've just found a paper that says raising the head of the bed can increase blood volume. See this post.
     
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  19. Wonko

    Wonko Senior Member (Voting Rights)

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    It's been a funny weekend.

    As people may have noticed my mental state has been somewhat 'slippery' and keeps getting away from me. Not an uncommon occurrence when PEM'd but it's more a case of the filters being off at the same time.

    I apologise for the threads I inadvertently derailed.

    I went out on Thursday and 'inadvertently' walked far more than I intended, after all I was still PEM'd and hadn't fully recovered from the previous trip out.

    On Saturday afternoon my body entered a recovered phase, all my numbers suggesting it was okay to do something.

    I didn't.

    On Sunday afternoon my numbers suggested a switch back, that I'd overdone it, which given I'd done sod all was a surprise.

    It's ME, it happens

    Still there, from yesterday afternoon to when I got up this morning I'd picked up another 200+ IMs, giving a total of just under 800 for the week, almost all of which were acquired on the Monday, a few, 70 or so from memory, on the Thursday, walking, and yesterday/overnight, with the odd blip of a few doing things like finally cleaning the living room window.

    Everything seems to have been on hold for at least the last week, with very little having been done.

    I've even got shopping being delivered tomorrow, all stuff that should have been picked up over trips in the last few days, when I booked it early last week I didn't think it would be needed, it was just booked as a fallback, just in case.

    This week I need to sort out my bank, I need to check and most likely acquire electricity, and I need to get what I am eating back under control, as it's too much, but I'm almost permanently hungry and cold right now. I also need to get supplements back in line, yesterday I don't think I took any, the arginine being the main important one right now. Missing it, even for a day, might be bad, as it's primary purpose is to trying and increase, maintain, blood vessel flexibility, to increase HRV and drop blood pressure.

    I need to figure out how to eat all the stuff I'm aiming to, consistently, and do it within a calorie budget. I need to sit down and work this out, something I've been aiming for for weeks, but who has the capability for that, it involves maths, and decisions, and sticking to something even if I really can't face it.

    Today my primary goal is to trim my hair, get a bath, and generally tidy myself up so I don't have to 'rush' around tomorrow before the shopping arrives. This was supposed to have been done already, but it's gone 1PM and no sign of it happening yet. For tea I plan on cooking cauliflower cheese again, I've had the cauli since Thursday and it hasn't happened, bought for tea on Friday, TBH I only ate Thursdays tea last night, so I'm a little behind, but now, apart from one courgette and the cauliflower I've eaten all of last week's 'fresh' veg and all but one portion of salad, which has probably had it by now.

    The reason for this is, as usual, overdoing it, and then ordering takeaways (or eating sausage and chips, or corned beef and beans, simple, easy to prepare and/or obtain junk food in other words) coz I can't make a decision or face what I am supposed to eat. Plays havoc, costs money I can't afford, I need to stop overdoing it, but that's 'tricky'.
     
    Last edited: Apr 29, 2019
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  20. Wonko

    Wonko Senior Member (Voting Rights)

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    For example (rough)

    I am supposed to eat (per day);

    2 apples, at least 2 other fruits, 100kcal each (roughly) - antiglycemic and good for circulation/microbiome/etc. (400kcal)
    100g grapes - circulation (100kcal)
    1 whey drink made with skimmed milk, with 5g arginine, 1g citrulline, 2g acetyl carnitine - BCAAs, circulation, glutathione precursors (210kcal)
    1 whey drink made with water, with the above stack - circulation, glutathione - (120kcal)
    2 hot cocoa drinks made with 200 (ish) ml of skimmed milk each - circulation - (400kcal)
    Sulphurous veg, broccoli, kale, spinach, that sort of thing - glutathione precursors - part of at least main meal which I aim to be be 600-800kcal
    Salad, various, just for odd bits and pieces, variety, minerals, the odd vitamin - 100kcal but normally paired with a couple of eggs (B12) (100kcal each) or smoked mackerel (Omega 3) (120kcal)

    Often with soup instead of salad, high veg and protein content, a way of using up kale and anything else that's' near throwing (so vitamin content may not be high) - 200kcal a portion.

    so.....a typical day eating boringly, just the food I'm supposed to to stay in line with my aims - over 2000kcal and easily possible to hit 2500.

    I'd quite like to lose weight lol

    Today I've had;

    2 slices of homemade wholemeal toast (dry) with 2 boiled eggs - probably 500kcal
    1 stacked whey drink with skimmed milk - 200kcal
    2 coffees with skimmed milk - 60kcal

    700-800kcal

    Still got lunch to do (if it happens as I'm currently quite full and it's only an hour or 2 until it's time to start preparing tea), which will probably be

    2 slices dry toast with small tin of pilchards in tomato sauce (400 kcal)
    bowl of soup (lentil and kale) - 200 kcal

    or

    salad, dressing, small tin of salmon (250 kcal - rough estimate)

    then there is tea, which will blow everything out of the window coz it involves cheese sauce.

    not to mention 2 apples and 2 cocoa drinks (no grapes or other fruit left), and maybe another whey drink....

    ...and the forgotten 'healthy' bits, 70g tiger nuts, or other nuts, seeds etc (fibre, minerals, the odd phenol) - yet another couple of hundred calories, assuming portion control is good.

    More or less all healthy (too much bread I know but that balances out as most of the time I don't eat bread), not vast amounts, but the calorie count, and effort, trying to fit it all in, is considerable.

    Which all assumes I'm being 'good', that there are no off list foods, no meals replaced with sandwiches, junk food/takeaways, or 'snacks', that I'm not significantly PEM'd or crashed and can actually manage the organisation, or even face eating rabbit food that day.

    Needs more planning, as what I am currently doing isn't working.
     
    Last edited: Apr 29, 2019

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