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Author Topic: Bits and pieces of actions..  (Read 1985 times)
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KV_Tofu
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« on: January 13, 2018, 10:05:29 PM »

Dont know where to put this...
Just me thinking out loud about the actions I have taken to help myself (maybe i should start a blog just for my own interest). Maybe it will give others ideas because sometimes, the things that are hindering your health are things you wouldnt think were.

For the past few months i've had what could be classed as severe ME. It is not the worst I have seen in stories online but I was bedridden. Now I am housebound and have actually managed to become "housebound with the possibility of small 5 minute walks up the road and back" within a couple of weeks of doing the following:
- Unfortunately, ridding of my pets. I love my animals but I was struggling to care for them and it not only created stress, but when I did feel strong enough to deal with their husbandry, I crashed in a major way afterwords. They have gone to good homes and now I dont have to worry about them.
- I sit by the window with it open, ALOT. Staying indoors for extended periods of time is bad for you.. I couldnt get out so it was the next best thing. And if you literally do nothing but stare out the open window with the breeze on your face, it relaxes you, even if youre struggling that day.
- I have been working on my breathing.  I am a kinda.. semi.. hyperventilating breath-holder. I take short sharp breaths and pause for extended periods of time between them. THIS IS NOT GOOD FOR ME.
- I consciously ensure my body is as less-tense and relaxed as possible when moving around. NAturally my body wants to stress and tense due to the difficulty it finds with activity, but that only tires you further.
- I have started tai chi, from home, via youtube. I couldnt manage Yoga. So this seemed like an amazing idea to keep my muscles stretched, breathing regular, and do activity on a very small scale.
- Drinking more water. Still working on this. Often forget and I REALLY feel it when I do. Sipping often reduces my stress because you.. well, I.. am kinda calm wen drinking. It is refreshing and your body thanks you for it. Dehydration is a stress on your body. And CFS likes to dehydrate you due to constantly over-exerting your body. Or so it seems to be that way to me.
- Mental health: The open window helps with this. I wuld also suggest sitting outside your front door if you can do this. Or having a friend or family member over that understands. Interaction is important even if its short. And they can help you with the chores whilst theyre at it  great
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KV_Tofu
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« Reply #1 on: January 21, 2018, 05:33:33 PM »

Felt pretty good today. I mean.. for how I've been feeling recently. On a scale of 1 to Shit (10), I have been living at 9 or 10 since end of August 2017. Today I actually managed to do a fair bit of washing up and a bit of cupboard sorting out. I may or may not regret it in the morning but it gives me hope knowing that I have managed to make myself feel like this. I'd call it a 7 or 8 out of 10. If I feel awful iin the morning then it is a reminder to me that just because I feel ok; doesnt mean I shouldnt continue to rest a bit more. If I dont, I will rest anyway in a bid to avoid the dreaded "delayed after-exersion malaise".
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roger
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« Reply #2 on: January 21, 2018, 06:28:16 PM »

Fingers crossed for tomorrow morning then, KV  fingerscrossed fingerscrossed
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KV_Tofu
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« Reply #3 on: March 08, 2018, 03:23:50 PM »

I WILL GET BETTER

Even if my uselesss ass Nanny (for my baby) doesnt turn up and has convenient excuses to be off on her last day of the week, leaving me to struggle with my baby days in a row..
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roger
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« Reply #4 on: March 08, 2018, 03:43:48 PM »

Oh dear. But don't get angry with her, KV. If you do, it's  like taking poison and expecting someone else to die!
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KV_Tofu
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« Reply #5 on: March 08, 2018, 04:17:47 PM »

Oh dear. But don't get angry with her, KV. If you do, it's  like taking poison and expecting someone else to die!

Yeah.... i have to leave her being sh1t because i dont have the energy to confront her and it wont be a positive experience if i do..
Still working on the "not getting annoyed at her for being crap" though... i need to just accept shes lazy and its fine cos at least shes keeping my baby alive....
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roger
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« Reply #6 on: March 08, 2018, 04:37:20 PM »

Whether or not it's an energy issue, KV, accept her for what she is without emotion. If what she is isn't good enough, then start looking for a replacement. Above all, keep calm. Not just outwardly, but inwardly, too.
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KV_Tofu
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« Reply #7 on: March 08, 2018, 04:40:01 PM »

Im trying to fidn another but they keep beingg rubbish or taking other jobs. SO i am going to have to work on accepting her and calm down for a bit before i try again to find another. I got chest pain today from everything so i know i need a break from doing everything i can possibly avoid Smiley
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roger
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« Reply #8 on: March 08, 2018, 04:50:54 PM »

Trust me, KV, the chest pain will almost certainly be tight intercostal muscles due to stress. Calmness is the answer. Sometimes a  hug helps!
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KV_Tofu
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« Reply #9 on: March 08, 2018, 05:11:27 PM »

Trust me, KV, the chest pain will almost certainly be tight intercostal muscles due to stress. Calmness is the answer. Sometimes a  hug helps!
I think half the time its lack of oxygen. I stop breathing a lot :p But i was having a mild anxiety attack soon after. But what it inportant to me is that i recognise it as my body being silly and its reversible, rather than it being something threatening to my life. Layin down, breathing well and relaxing normally sorts it within 5-15 mins.
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roger
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« Reply #10 on: March 08, 2018, 05:26:39 PM »

And that's the approach that will go along way towards wellness  smile
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KV_Tofu
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« Reply #11 on: April 06, 2018, 09:06:14 AM »

After being locked out of the forum for weeks (lost my password and username!) I'm back in. Yay.

 I have been alone with my son all week and it's not that great for my health.. I used to have a nanny helping part time but she decided to just not turn up one day and I never heard from her again. Luckily he starts nursery next week. Don't want him to go but I have to do what I can.

Recently, i have read that the less I move the more likely my mitrochondria will get crap? So once I've had a couple of days of literally doing nothing I will make sure I do stuff always paced but never zero activity... I don't want to end up like those people who end up in bed forever. It also makes me wonder about a guys video online who claims when he started travelling he was better and then he went home and always deteriorated. Maybe our energy production is extremely sensitive to levels of activity. I got worse when I was 40w pregnant and on leave before my son was even born.. but on the other hand doing nothing screws up soml many other things like giving you tension, affecting your mental health and being exposed to chemicals you may not know is in your home. Plus it must have a psychological impact to be back where you know you're ill...

I have been following a diet high in protein and slow and fast release carbs. Avoided junk food. Felt ok. Just ate a croissant and now feel very sick. Won't be doing a "cheat food" again!!
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roger
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« Reply #12 on: April 06, 2018, 09:15:58 AM »

The thing about feeling okay away from home but crap when at home is interesting - of course that could be a psychological thing, but equally, it could be toxins in the home, especially EMFs.  Toxicity, especially the things most people use in the home and on their bodies is a huge issue.
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KV_Tofu
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« Reply #13 on: April 06, 2018, 09:18:56 AM »

I don't think I've been away from my flat long enough to know if my flat has any impact on my health. But as we are moving this summer, after I recover from the move it'll be interesting to see how I feel.
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KV_Tofu
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« Reply #14 on: April 06, 2018, 08:05:14 PM »

The thing about feeling okay away from home but crap when at home is interesting - of course that could be a psychological thing, but equally, it could be toxins in the home, especially EMFs.  Toxicity, especially the things most people use in the home and on their bodies is a huge issue.
By the way do you have some recommendations for products for EMF's? Thaanks
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roger
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« Reply #15 on: April 07, 2018, 06:04:38 AM »

Itís difficult, weíre surrounded by them these days. There are gadgets you can buy to minimise their effect but the ones that seem to have a genuine effect are ludicrously expensive. In the house Ė donít buy general appliances that use WiFi, switch your router off whenever youíre not using it, donít put your mobile or cordless phones near your head - use speaker phone and switch them off when not in use, donít use standby when TVs etc arenít being used, switch them off and preferably switch them off at the powerpoint, donít put laptops on your lap, and in general live as healthily as you can, avoiding chemicals in household cleaners or anything you put on or in your body.
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KV_Tofu
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« Reply #16 on: April 19, 2018, 11:13:20 AM »

Officially leaving the cfs/me Facebook groups I'm part of. The attitude of some people stink. They just don't even try. Yes there's subsets of cfs/me and what may work for one person may not work for another.. but the amount of anger people show towards you I'd you make suggestions on how they can help their body heal. Suggestions on working on their mind or their diet is met with aggression (which tells me for one that their mind definitely needs some work!). I've been called "ableist" for suggesting that someone work on managing their mind to help manage their pain (apparently only an ableist person would say that because otherwise i "would know it was crap". Actually there's plenty of evidence on line about a- the minds role in creating pain or pain level and b- the power of it generally (someone kind mentioned that the mind is so powerful that Buddhist can manage all sorts of things!).
Noone on the Facebook groups are helping themselves or each other with the aggression and stress they are causing each other. I'm so glad that the people that post on this forum are open to ideas for help.
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roger
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« Reply #17 on: April 19, 2018, 11:59:50 AM »

Next time someone tells you that getting your mind working for you (rather than against you) canít have a positive effect on physical issues, ask them how they think placebo works. If they say it doesnít, you COULD point them to the overwhelming evidence that it does, which is why Pharma is mandated to measure its drugs against placebo. But you'd probably be wasting your time and it might be more sensible to stop talking to them, which appears to be what youíve decided to do. And for that, I say good on you  smile
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« Reply #18 on: April 19, 2018, 12:03:01 PM »

Yeah.. I don't think I can talk to these people anymore. It only causes me stress because they're throwing negative feelings my way and won't even listen. Currently I am helping my friend who potentially has fibro and definitely has severe anxiety and stress problems. She is open to my suggestions (cfs/me suggestions are still applicable as it's about helping the body heal). And so I will stick to that as my good deed until I am myself fixed enough to deal with stubborn people.
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KV_Tofu
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« Reply #19 on: April 22, 2018, 10:59:19 PM »

Things got  censored awful today. My.husband has been showing signs of stress and anxiety, hyperventilation etc. He kept denying it but it's one of those things you don't often realise is happening to you until too late. And about a month ago he told me he felt weak and slept all day. Then today he was even worse. Actually, his abilities mirrored the way I feel and my serious lack of ability when I push against my baseline more andpre and more through the day
 He was literally incapable of doing nothing. I had to do all the childcare today. And I could cope up to about half way through the day, thanks to my good pacing I'd been doing for the last 2 weeks.
And now I can't get to sleep
 Thankfully my husband went to sleep at 9pm. I am grateful he doesn't have a mind too busy to get to sleep. I hope this is only "severe adrenal fatigue" for him. I have been giving him advice all day about how to handle what he's feeling including staying calm, stopping the second he needs to (pacing) and how he needs to basically meditate and relax every single moment he isn't doing anything mandatory. When he gets better I will work on his daily schedule. He is the worst for not "stopping" doing things. If something needs doing he will do it.
His current schedule would be wake, change baby, give bottle, feed self etc. Leave and drop off baby at childminder on the way to work. I know for a fact that he rushes. No doubt he wakes and stresses about his morning and it needed be the case. It's even worse that every second he has spare, he spends on his phone
 This is a very stressful activity for body and mind.. I don't think people realise this. And when he is literally giving his mind no chance to STOP doing things... Well, I told him to stop ages ago and give himself time to relax but in true human nature he waited until it was too late to pay attention. My advice to him will be to spend his spare time doing something calm. On the way to work he should stare put the window. At lunch he should take a proper one and not eat and run back. He should take breaks from his screen and also sit at his desk in a particular posture to reduce physical stress... Things like this. His issues need to be temporary or this family is non existent and my baby will have  to go elsewhere.....
The only "benefit" from this is that now my husband understands what I deal with every single day.
« Last Edit: April 23, 2018, 06:18:32 AM by roger » Logged
roger
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« Reply #20 on: April 23, 2018, 06:21:13 AM »

Well you've given him some good advice. Hopefully, he'll benefit from it. But being the only breadwinner and having a baby and an unwell wife to consider isn't easy to deal with. Fingers crossed he'll learn to slow down.
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« Reply #21 on: June 14, 2018, 10:45:37 AM »

Had a skin biopsy thingy done today for a mark that's probably nothing. I don't like leaving my flat as my walking abilities before exhaustion are very short and I don't like the idea that I'm gonna have to just possibly lie on the floor in public. I took a taxi to the hospital and my heart rate went up even though I was trying to stay calm. My body's auto anxiety reaction to going into the outside world reaaaallly doesn't help.
The guy who did it was lovely but I couldn't relax properly knowing he was about to make a hole in me - one I hoped wouldn't get infected and make my days even harder. I asked to lie down in a quiet place afterwards. I am so used to asking this stuff, I have no shame in requesting it anymore. No amount of confused or dodgy looks is worse than struggling.
I'm glad that's over. There's so many other things I have lined up to help my health and various things have been in the way like tests/samples that need to be taken when you have no other substances in your body so I've had to avoid any vitamins or whatever else I may want to take to help me. I don't take any "mainstream" medicines but you never know what effect something may have so in my mind it's safer to not take it at all.
Now to try and keep my wound clean...
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