Hi everyone
I’d pretty much like to have your opinion on my current situation but every time I try to organize a thought about that I am quite lost. Sometimes I think its my brain still incapable to understand what happened.
Anyway I decided that I’m going to give this life a try and has to be a life worth living cause I can’t do it otherwise.
My life as I said before was already very full of not so nice things due specially to a very difficult family but I had things that made me happy.
Recently my boyfriend left me and the major supporter and reason to fight for went away completely. This to say that is a difficult situation, I am not a strong person and this shit is real. I don’t want to go too much into details cause I don’t want to trigger anyone but I’m not ok at all.
My struggle now is to understand how I’m gonna organize my life and around what, cause the things I once loved now are just hurting me for the most part, for example I was a very sexual person and now my own books triggers me, was very into art and very emotional now its quite gone. My studies are many hours and many people and I also had struggles to understand what I wanted to do and I am still not sure (I changed many things, which was one of my problems cause its definitely related to my sense of self). I’m not quite sure if I want to continue or if I have to find out what is meaningful to me and try to persue that cause since pssd I am in a ‘fuck this shit’ mode and I always think that if I ever get cured I need to make my life worth living but its better to begin now maybe and I am struggling to understand what direction is better for me since I also need to be realistic and also to find resources and time to try to cure myself somehow (which of course u all know how difficult it is to have docs who gets it)
Also who is ‘me’ anymore? In theory the things I love are still meaningful to me but who knows if I can do them, I mean I had struggles before so now its mission impossible and ofc now they constantly make me think about pssd cause I cant feel them or properly feel them.
I feel like maybe I need to step away from everything and just try to cure myself cause I dont see the point in doing this cosplay of my ex life and living like all its fine when I am constantly in a incredibile amout of pain,
but at the same time it doesn’t sound like a good plan to retire from a ‘normal life’ completely.
On top of that I always had that thinking like ‘I’m too old to do that’ since I’m 18 and now that I’m 26 is stronger than ever. I can’t imagine the future at all rn.
Thank you if you read all this messy rambling I know there’s not a good standard formula to deal with this but maybe your opinion and experience will help
I think taking a break and finding yourself and maybe improving your condition is a good initial step, you can’t force yourself in to things when you’re not feeling confident enough. Try not to isolate yourself though, and do the things you thoroughly enjoy.
Once you feel like you’re in a state of well-being, you should try to resume your activities that are more demanding.
I actually think that I’d recommend the opposite.
People here frequently say they used to be creative and that that they don’t feel any inclination to create anymore.
When I crashed, I felt little enjoyment in any of the hobbies I had but after some time, I found that even if I didn’t feel inclined to do those things if I forced myself I would find that it was enough to distract me a little from thinking about my condition.
This has improved significantly with time and I can now enjoy a lot of the things I used to, like playing games or musical instruments.
You must have great ability to have been accepted into art school. Congratulations.
As you correctly say, I think you need to build your life. As you’re thinking about that, it would suggest you’re ready to start building.
This will be harder for you, but it is not impossible and with time, you may find that your love of creativity and art returns to you. You may find enjoyment in concentrating on technical excellence.
It’s not time to give up, and I don’t think you want to.
i have (had) the same feelings of regret and pain of not being able to live etc.
if you can do meditation (a form called vipassana) i suggest it. if you cant do it (i cant due to PFS low neuros) then one day when we find a cure and you can do it, that will be the cure to your miseries, i promise that much.
all the deep pain and regrets of missed time etc will disappear if you do it everyday. trust me on that and hope to see that day
Thank you, I really hope that for me those things can come back to me too. Its hard to recognize myself like that. Do u still think one day you can be cured while you manage the situation?
Yes, I think it’s possible to feel better with time.
Hey sara,
I can relate to a lot of what you said. Once I developed PFS, which was indescribable and completely changed me, I lost the ability to feel positive feelings and could no longer enjoy anything. I could not continue my career due to the overwhelming health problems but also the complete anhedonia and loss of creativity. Over the first year I eventually regained the ability to listen to music, watch TV and play some games again, but it’s not the same. Games are forced, but I do now force myself. I can very rarely read fiction as I struggle with caring enough to imagine scenarios I’m reading about. Appreciation of things is now mostly intellectual, as if I simply “know” something is good and in line with my taste, as you might when shopping for a gift for someone else you know well. For example, if I see a film I’ll know it was good or bad without any feeling as to that - as if I’d simply heard the review score. I find no joy because I have simply lost the ability to. As you say, things are meaningful to me in theory.
I am very, very severely affected by PFS and lost all sexual function with my crash and experienced significant personal damage, so sadly I know what you mean about being triggered by things reminding you of this. I find it difficult to even look at the damage to my body, let alone art about interpersonal or sexual relationships, and I can’t take my mind off it because I’m never not in excruciating pain. I hurt and lost the person who means everything to me, and this loss is incalculable to me, moreso than my own life. I am deeply angry that this has taken me away from so many people I cared about, taken my memories away with those people from my own head, taken my feelings for them, and coloured how they think of who I am and was.
I don’t really have any superb advice for you I’m afraid. Just wanted to tell you I also rarely discuss my situation as I realise for those in a better situation it can be upsetting, and I’m also not ok, but I’m struggling on. On the plus side, time gave me improvement from the initial months of completely crippling derealisation, like I was looking through glass bottles, but I still wouldn’t be able to drive. Panic attacks and a few other things lessened. My situation is otherwise unchanged, and sadly in some ways worse due to autonomic issues. I spend my time doing my best to one day help and protect others and I think the effort I put in speaks for itself, or at least it will. I have, however, tried to focus on accepting some things and changing things to better put one foot in front of the other. I had a lot of friends and this rapidly dissolved to a handful who did their best to understand or at least accept they couldn’t understand what had happened to me. Frankly, I’m such a poor friend now (I struggle to care about anyone, fake interest, and am too sick to pursue any semblance of a normal life) that I could not manage more. So, in this scenario, a few close friends is the best I can hope for and I’m grateful for them. I would recommend trying to see if anyone close to you would understand as this has been a big tether to normality for me. I also feel the same as you regarding not seeing the point in cosplaying who I was (good way of putting it btw), but with my close friends I try to put on a brave face and act out normal interactions insofar as I’m able. I do think it’s sensible to do so when possible. Sometimes it just isn’t possible due to the extent of my symptoms and i’ll just ignore them for days, but luckily they are aware I do that.
It’s great you’re at an art school and I think that if you can at all persevere with that it is a very good thing to do in the immediate sense. Something this has taught me is my prior focus on permanence and structure is not always what life will deal you, so if you can not worry about big picture things like structuring your life in the short term, perhaps focusing on your work can be a way to find some peace. I’ve had to learn a lot of new things in my role here and doing so has been all I focus on really, and that helps me. It’s also important to know that efforts are being made for you and others, and you shouldn’t feel you are worthless in that. It might not seem like a thrilling reason to fight, but you are the evidence of what is happened to you and just by enduring you will ultimately have the ability to help everyone. One day, hopefully sooner rather than later with the rapid development of technologies and push in patient efforts for recognition, what’s happened to us will be acknowledged. It’s also the case that many find improvement from more functional symptoms and you may find significant improvement yet, just as @Greek says, so don’t give up hope for that.
I’m not sure how much that will help, but just wanted you to know you’re not alone. All the best x
Very well put you’re a warrior
Thank you for sharing your experience I was very mooved by it (in this freaking anedonic way).
I relate with your expirience with friends and relationships a lot and I also have a lot of rage towards what happened, rage never left. I also find struggle to distract myself since I’m often anedonic or in phisical pain.
Makes me very very sad to see that someone else has to face the same pain that I am in but thank you for showing me that I’m not alone.
I don’t know if I will be able to stay in this situation because I feel that for me I can just accept this as a transition moment, I can’t imagine to accept to stay like this or just some improvements, Even if I wish I could stay. I just feel like a 8 yo who need reassurance about this all the time.
But thanks for your advices.
Un abbraccio
Touching personal stories, both axolotl and sara. I sincerely hope that with the upcoming Baylor study being released, new avenues for research will open up.
I feel that if members see the utility in those pathways, it will give them both hope as well as a willingness to donate to help fund them. People need to see light at the end of the tunnel, however far away it is.