Girlfriend of a POISer who wants to help her bf

[Cepheus]

Hello,

I?m needing some help, so I?ll be really grateful to those who can give me a light to follow. 4 months ago I met this man that I liked from the beginning, never felt anything like it before and the good things: he liked me back. The first few weeks were great but he warned me about a condition he has that would make him act strange sometimes, but I understood and told him it was okay but things started to get more complicated and I didn?t understand exactly what was going on, I just knew it was the thing he told me about but I didn?t know how it worked, how it happened and how to act when it happened and then he told me about POIS. He told me and tried to leave, because he thinks it?s the best to both of us. But I always said that we could get through it and that I wouldn?t leave his side, we could work it out. It was the whole night trying to make him stay and I did it. Yay!

But the thing is: he tried to leave so many times after and I always tried my best to understand and to make him stay. He always says that he doesn?t want to hurt me by being rude and he often has this change in his humor but I?ve been getting used to it, even though it?s confusing sometimes. He said once that he isolates himself because he doesn?t like to interact and to stop himself from being rude to others but he also said once that he likes when I talk to him like nothing it?s happening and to make myself present, I try but sometimes I feel like I?m not doing enough to help, to make him feel that I?m really there, sometimes I feel that I?m bothering instead of helping. We live away from each other, so the only thing I can give him right now is my words and my attention but it?s hard to make him understand sometimes and I get it. It?s been 2 weeks now that he?s going though pois. He said he?s feeling bad just by drinking water, he?s distant and he told that me that he doesn?t know exactly what he?s feeling, that he?s on autopilot and I don?t really know what to do. I tried to lighten the mood by trying to be funny, it didn?t work, I try to engage in conversation to show him I?m interested and to give my full attention but I don?t know if it?s working, what else could I do? Any ideas, please? I?d do anything, I just wanna see him happy and as good as possible again, he deserves all the greatest things in the world. I love him with all my heart and it?s heartbreaking not being able to do anything.
He told me once that his pois is one that is seen very few times, it has all the symptoms plus he loses muscle mass while going through it and until now we couldn?t find something that could help in this part. I?m trying to make him not give up and try the treatments we found like fenugreek and etc, but when he?s like this he just wants to give up and I try my best to make him try again the next day. I will never understand fully what you guys go through but I hope you can all find something to help endure this until NORD comes with a cure or a better treatment. I?m hopeful you will all get there, just don?t give up, I?m going to try my best to make my guy do the same. Easy for me to say but I?m a hopeful person so hope is the only thing I can give for now.

Anyway, what do you think I should do? Is there anything else I could be doing? Usually I keep talking to not leave him alone but sometimes I?m scared I?m suffocating, so how to make things better for him? How to act??I would be grateful to those who will give attention to this post and help

I?m sorry for the long text, I?m a big talker, especially when I write, I?m also sorry if I?m insulting or being an idiot- it isn?t my intention - but thank you for your time and for any advice.

(PS.: He said that he?s having a lot of trouble sleeping, like he sleeps for just 2 hours and that is preventing him from having a recovery, I?m trying to find something that could help but with no success until now)

[Muon]

It?s been 2 weeks now that he?s going though pois. He said he’s feeling bad just by drinking water

Yes I had this too and still have but not as bad it once was. I suspect it’s MCAS. Mucosa is probably responding to water just like the mucosa in the urinary tract responds to semen (speculation).

You could try to contact other girlfriends of POISers, ask for their experience and how to handle the situation via private messaging, forwarding your thread. There is also a list of doctors available on poiscenter.

[Quantum]

Hi Cepheus,

Thank you for writing here, and showing that you care for your boyfriend.  Men who have POIS need a spouse who has a good heart and will care for them even when they are in a POIS attack, and you seem to have this good heart

I, too, was transforming into an anxious and irritated madman when in POIS, so it was very hard on my relationship. My spouse has been very patient with me, but hopefully, I have found ways to lower my symptoms, so that it can be sustainable in the long run.  I know you have very good intentions, but years of those severe symptoms will take a toll on your relationship.  You are human, too.  So, the best is to find a method that will help him have lower symptoms, and of shorter duration.  I see you mention Fenugreek, which is helping many members. If it helps, keep it, and find something else to add to it. If you have not seen it yet, I suggest you take a look at the many methods found by members that have been proven efficient in reducing POIS.  No method is efficient for every POIS sufferer, but when you find one that works for you, it is very valuable.  See this list at https://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448 .  Some are really easy to try, like the method with niacin, or the one with OTC antihistamines.  Anything that lowers the severity and symptoms of POIS is a plus.  Some imply a prescription drug and call for medical supervision.

At the least, a very healthy diet is good to implement.  No junk food, no artificial flavors or colors, avoid refined sugars, add many fruits and vegetables, organic if possible.  This would help anybody, and help POISers as well.   Some vitamin D, like 1000ui to 2000ui a day, is good for everybody and seems to be beneficial to many POISers.  Vitamin D alone is not enough to be a POIS cure, but with time, it helps make it less severe, it helps with inflammation, it is not expensive and not dangerous ( if you respect the usual dosage like 2000ui a day - high daily doses must be taken only under medical supervision)

As Muon mentioned, you can also consult the POIS Doctors list, and see if there is one he can consult.  There is no recognized treatment for now, but they do their best to help and sometimes have some success. 

Another useful way to limit POIS symptoms, which I have been using for years, but that needs a lot of practice and perseverance, is to have sex or masturbate without ejaculating.  in my case, this will not trigger POIS symptoms, but I had to learn to manage the energy that is not evacuated, I also had to get the hang of it, at first, it is easy to stop too late and have an unwanted release.  There are techniques that help, and tantric literature can help in understanding the principles and mastering them, but it can only be learned over a long period of time, so this is not a short-term solution.  It is better to first find a method to reduce the symptoms.

On the emotional side, the best you can do, and I feel you already do it, is to not get hurt or offended by anything he does or says when he is in a POIS attack.  It is a bit like Dr Jekyll and Mr.Hide.  In his normal self, he really loves you.  But, in POIS state, I know it is hard to understand, there is no energy to adapt to anything or to calm down - our body and mind are a mess and our emotions are just one big open wound, and even if you touch it lightly, the reaction will be pain and anger.  Much like a hurt animal who feels trapped in the corner.  Anybody, anything is a threat, even you, his loving girlfriend.  So he can say mean things, and his behavior may seem totally incomprehensible, and exactly the opposite of who he was just before. That is where you have to remind yourself that it is not his true self, and not react.  Just say that you know he is in POIS attack, and that you will let him have the time to recover. So, the best you can do is to leave him space, and not react to his anger and lack of kindness.

Also, do not ask for anything that would require energy or seeing people ( all we want in POIS is to be alone and rest). If you live together, do not ask for household chores, or anything demanding ( yes, I know, it is not a normal situation...). Do not ask to go out, to see friends, to go hiking or do any sport ( maybe a car ride, with no stops anywhere, or something he can tolerate while in POIS)  Just a silent and reassuring presence is great, and doing with him what he likes to do when he is in recuperation phase (watching videos ? ).  Of course, if you find ways to shorten his recuperation phase, the relationship will be much more enjoyable for you and for him.
Get to know more about his POIS cycle.  For example, if his symptoms last usually 7 days, you can expect that the first 3 days will be the worst, and the last four will be better, so easier to incorporate light activities in this part.  But when in the really severe phase, you will have to accept that your boyfriend is "temporarily out of order". 

I hope this will help.  Feel free to ask any questions you have!