I know this condition totally destroyed us. Those who has severe cases they know what Im talking about. I think our goal in life is not being totally bedbounded and housebonded. That is really hard i know. Most of the times really hard to get up from the bad. But we could inspire each other if we write down what was our days. What we made. How long we were going outside. What we are cooked. Things like these… Maybe we could give each other to power to not just laying all the day in the bed. Stupid idea???
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It’s not a stupid idea at all.
I think that sort of thing would really create a nice atmosphere here on the forum.
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I made today breakfast and house work. At midday a mascarpone dessert then i eat my lunch… That was a soup with meat… I layed at bed because i have extrem fatigue. Than after dark i forced myself to go outside and i walked 2 hours… That was all… Its a big fight every day to survive this hell… What about you guys???
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That’s great @bsvc. I’ve had a tough day which hasn’t amounted to much. I had plain yoghurt with gluten, wheat free corn flakes. I put clothes out on the washing line, read the bible had beef curry, a jacket potsto with tomato and cucumber. I then watched a relatively old film called faster with Wayne Johnson. Things have very marginally improved as the day has ticked by. I’m in bed now. Tomorrow will be the church then the beach weather permitting. I’ll have the same for breakfast and hake, calamari, prawns and chips for lunch
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Still in RSA?
EDIT: had to remove most of the text because i accidently put some personal info there
this disease taught me that before PFS, i cared too much about how i felt.
ironically ive made more progress recently in my life because ive decided to stop caring, genuinely. people say all the time that “they dont care”, but is it true? i think it’s projecting that they do care
people that dont need approval or validation of emotions are rare
PFS changed me forever in good and bad ways.
PS -with our fundraising going on and new study with more transparency starting soon, don’t despair too much. a lot of good news to look forward to very soon in terms of science and solutions
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I not write down what Im thinking because i started this thread with a positive attitude. Fucking hard to going trough the days and hard to do anything for me. But i try…
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I almost can sleep nothing. I have severe sleeping problems. Its too much time to me what i spend wake up with this hellish condition.How i spend my whole day?? Any tips guys?? How you spend your days?? Any daily routine or something??
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I made a promise to myself to do 3 things each day .
-prayer/meditation time
- some kind of exercise for 30 mins minimum gym/ walk / cycle
- working on music either practicing and singing some songs ,writing music or working on a production etc
Obviously not everyone here is gonna be a musician so it could be something unique to you or a passion of yours.
Doing these 3 things really helped me and by the end of the day if I had done them I rewarded myself that I had done well today.
Hopefully this is some inspiration that can encourage others ….
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You are a good fighter.
I cant do just very less things… Today i go to the store to buy some foods and after dark a long walk. Its a shame but i fight for these Basic things like a fighter…
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我的建议是躺床上得了，天天看看手机，听听音乐，饿了吃点饭，睡不着就不睡了，先把最困难的时间熬过去，不要在意真正过了多久，让我们看看接下来会发生什么
Tell us your day please Wu…
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我会在早上五点多犯抑郁惊醒，然后赖床，在七点钟去上班，开始在焦虑、脑雾、肌肉僵硬、慢性疲劳、呼吸困难的状态下上课或批改作业，或进行一些其它的工作，或者干脆瘫在办公室的椅子上打开论坛，看我们最新的研究项目，在网上搜集一些医疗信息等等，中午我会睡一个小时，然后伴随着自杀倾向和剧烈的心跳醒来，开始头晕，于此同时我的脑雾似乎会稍微好一点，我会工作到下午六点，然后头晕目眩筋疲力尽地回家躺在床上，接着看看手机之类的，这时候我的肌肉会更加僵硬，焦虑症也会逐渐发作，我需要在10点前入睡，否则我会非常兴奋导致一晚上醒五六次，所以我喜欢周末天天躺床上…顺便说一句，我比三个月前好多了
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How can you work with these symptoms???
Its impossible to do my work… Im totally done… No feelings, no motivation, no joyness, penis pain, all time fatigued, insomnia. I cant do anything…
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前些天还有视线模糊和更严重的人格解体，老实说，我不知道我怎么坚持下来的，或许是“自大”和“无畏感”这种精神问题导致我这么做下去的，我曾经在早上有控制不住的情绪崩溃，不过现在好了，我建议你好好休息一年，后年春天开个花店。顺便说一句，你的症状我都有（或者有过）
This condition is a killer. Going to buying foods is a torture. Going to among people is a nightmare. I dont feel myself to human anymore. Its a torture chamber. I try keep going. Make the foods and try to force myself to walk every day. But for what??? This is the question. For what??
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I know its an inspiration thread but its hard. Im totally alone. I try to do things but Im not see the goal. Im not see the end of the road. Things not change what ever i do. Its very hard to do anything if you know that you will not getting better. Its pointless. Fucking pssd killed me completly
U have to stick with it Rome wasn’t built in a day it takes time for changes to trickle through. If this was an overnight fix no one would be on here. Keep trying and STO P feeling defeated it feeds the giant. DO not don’t wILL not won’t, CAN not cant say out loud the opposite of what your emotional state is telling you. A positive mindset can bring around epigenetic changes. Keep going no matter what
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@LazarusRy you are the rock. I feel myself totally defeated what ever i do. No joyness anymore. No feelings. I live like a robot. No women. I do the routine things every day but its nothing. Without joyness and feelings and sex the life is nothing… Because these 3 things are LIFE. And we havent these basic things anymore. But your advices are always help a bit. But if i think about what we are lost. I think you know what i wanna tell…
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One thing is for sure this will no kill u so carve out a new life and live as best as you can. Re invent yourself. I stopped the struggle after many years of trying to hang on to qgat I had, it was simply too painful.