Living with CFS: Living life with a flat battery.
I'm frustrastingly useless today. Today I'm trying to catch up on some things but my head is very fuzzy.
It's been a week of feeling very weak and mostly staying in bed. No closer to 2 weeks. Is it?
What day is it?
Yesterday we went to church, I had a 15 minute conversation with a friend when I had to call it quits before the service even started. We snuck out during the second song (prime sneaking out time because people are supposed to be watching the screen and not the doors) and we drove all the way back home.
When you have Chronic Fatigue a surprisingly large amount of time is spent trying not to freak other people out and trying to seem okay. That means you hang on to your husband in a 'casual cuddle' kind of way but in reality he's keeping you standing up.
Now if I was this tired why did I even decide to leave the house?
Because I was feeling okay when we left the house.
I have no idea how long my energy reserves last at this stage.
This kind of tired is like 'I just ran a marathon' kind of tired. It's like someone stole the middle section of my body which controls my breathing, ability to move my legs and blood pressure.
It feels like when the batteries in your Walkman used to go flat and the tape slowed down. If you were using rechargable batteries and they were almost at their end you would hope to get a bit more out of them on the 15 hour road trip that formed part of your 'normal'. And as you pressed play again and again it would play normally and slow down at a faster rate.
Or when you had your old cellphone that would charge for daaaaays and you could send one sms.
That's what it feels like.
Only I would love to have a power bar meter reading thingymawatchit. My battery takes a loooong time on the charger to give me a tiny bit of power.
That's it! I just need a new battery!
Now where does one find a battery to power a human being?
When I took this photo I was in a lot of pain and felt like death. What would a family wedding be without a trip to the emergency room for a shot of painkillers?
Smile and wave boys, smile and wave.
Hi @simplylizelle I'm an ex South African who suffered from Social Anxiety Disorder for 50 years until I did this about 3 months ago: https://steemit.com/anxiety/@readallaboutit/losing-my-social-anxiety-disorder-no-products-required It may be completely different to your situation but you never know. It stopped my panic attacks, dizzy/fainting spells, suicidal thoughts, irritability, depression, anxiety and the list goes on. Please let me know if you try it and if it helps in any way. I would never have thought that after 50 years the cure would be so simple. Good luck.
Thanks @readallaboutit. I will go have a look :)
I'm happy that you found something that worked! I'm also sensitive to chemicals. It's always a gamble when I buy shampoos whether I would be able to use them or not.
With the water restrictions here in Cape Town we only shower every second day but I feel worse on days where I haven't showered because the heat helps with muscle pain.
I hope you keep improving and get stronger every day! Thanks for sharing your story :)
Hi simplylizelle I have been following the water crises in SA. Must be tough. You've just confirmed that you are sensitive to chemicals and have to choose your soaps carefully however all soaps/shampoos have chemicals in them even the so called chemical free ones are a problem for me. That's why you need to consider going completely soap free. The chemicals in your shampoo get into your brain and attack your nervous system. We have been brain washed into believing that we have to use soaps or we will suffer from all kinds of nasty things. It's all brainwashing to get you to use their products. After 3 months of not using any soaps whatsoever I have had absolutely no side effects and I smelt great from day one - even better that when I used soaps. I can go for a brisk 2km walk in the park, build up a sweat and still smell great. Just my opinion LOL. Hope it rains soon.
CFS is a tough and poorly understood condition and I wish you all the best.
Thank you @doctoryak. It's like a daily lucky packet :)
"batteries & walkman" youngsters didnt understand comparision :)
Lol Yes! That's why I added in the bit about the phone :)
You look so sweet. Such a great husband you have too.
When my fatigue hits me out of the blue, such as you have described, I consider alternative factors... bare with me here because not all Christians want to hear about auras and such, but even in a church setting there can be energy vampires... people, who latch onto your auric energies (think of the halos around the Holy Family or Saints for a Christian example of an aura) and suck you dry. They are (sometimes) the ones who hang out at the door (not the official greeters, probably) and MUST shake your hand and hang on for a bit... But it's not always that way. One church, I actually left after the children's message because I'd been "zapped" so badly by a vampire in there. (I didn't return to that church, actually.) Anyway, just one other "take" on CFS. Such a multi-faceted illness that it's hard to say anything definite, but what you described just sounded like what happens to me when I have an energy vampire drain me.
For me its more a case of how much energy will I need to interact with this person. Some are short, low energy interactions and others are heavy duty interactions that require a lot of thinking and concentration. It wasn't so much where we were as the effort it took to get there.
We spent time with my family last night and I played with my niece for a bit. After dinner I crashed and we left early. Mine seems to be quite closely linked to what and when I eat. Eating takes a lot of energy so even on better days if I have something important to do in the morning I will wait to eat until I'm done with the task at hand.
But I do know what you mean. Some interactions with especially negative people can leave you feeling drained. I call it 'throwing hope rocks into the pit of despair' :-) There's just no right answer for them.
I find having to explain why I'm tired takes a lot of my energy. And eventually you just disintegrate into not being able to speak.
Yep and yep.
Yeah, what I eat is important and I haven't found all the links there. Soy is huge for me, wipes my mind out for three days, but my energy takes about a week to recover! Corn sweeteners also do it, but to a lesser extent.
When it's really bad for me, I can't speak straight - like being so tired that I can't put a complete sentence together. Frustrating!
I also can't handle crowds or fluorescent lighting - but those are the ones I know - there are factors I don't know still. This past week or two has been really bad, and I'm really not sure why!!!
strongs my little lollipop <3
Thanks smeemie :)
Nobody knows how you feel, until they have taken some walks in your shoes. Teddy and you are both inspirations.
Thank you @manorvillemike. I'm sure there are easier ways of being inspirational :) But I'm glad if we can help someone and it's not all for nothing.