Struggling again

@D1ng0While I can't honestly say I identify with a lot of what you describe, I can definitely identify with the loneliness and isolation. When you wrote "I feel like my reality is so, so far away from everyone else's" I immediately thought "What a perfect way to describe it!" Add me to the list of people who think you deserve a medal! If there's no one on it then start a new list with my name on it. Unless you've lived with that feeling of feeling a lot of pressure to always give the 'happy responses' and hide out true feelings, either because we don't ant to dump it on people or knowing they wouldn't understand, especially when feeling you're the one who always has to reach out just to maintain any sort of contact.

I was diagnosed with a serious illness almost 2 years ago, and most people just disappeared. To be fair, it wasn't a large group of people, but it did hurt that most of them disappeared. The few that kept in contact, mainly through necessity or family links, never ask me how i'm going health-wise or show any interest in asking how I'm going with it. So of course I feel like I should keep my worries to myself and never bring it up. It's like my worries and concerns just aren't important, or even a consideration at all. I too, have had people over the past couple of years share happy news with me, with no concern about the things they know i'm dealing with. So I can totally relate to how you feel there. You're right! It is exhausting expending every bit of mental and physical energy you have only to feel like you're barely moving anywhere but backward.

I find it so difficult and reading all the things that you have to deal with made me just feel the need to reach out and tell you that I hear you, understand just how much hard for you it must be and just want say that you're not alone and there are people who understand and that that gap you describe isn't with everyone.

If there's one thing i've learnt in the past couple of years, it's to never stop reaching out for help and support. If we can't find it with family and/or friends then look elsewhere. I've tried a number of different support groups, psychologists (the few visits I can afford), and support services and it helps me, well... to at least feel heard. It helps me to get through another day even though it feel pointless at times.

I really hope you can find some support soon and i'm so sorry I couldn't really think of much advice to give you. Take good care of yourself, and most importantly, be kind to yourself. You're dealing with more than a lot of people have to without much help so continue to reach out like you have here and hopefully tomorrow is a little bit better and the day after improves a little more and so on.

Hey @D1ng0

I'm sorry you are dealing with so much! I can relate to the feeling of disconnection from friends when dealing with a lot. When I was dealing with my spinal injury the people that came visited me were family. I think like you, it's a bit of an eye opening experience when you are dealing with a lot and you hope people will be there but they aren't. My general experience with people suggests that most people are just clinging on for dear life most of the time. I could be wrong, but that has been what has allowed me to forgive them and move forward with them after a period of time passed.

Good on you for sticking to your routine, and managing your pain as best you can. It's not easy. Hang in there.

Hi there D1ngO, I can totally relate. I have some of the same conditions as you and emotional dysregulation disorder. I feel you...just surviving can be exhausting. When things are bad, I try to remind myself that literally everything passes. So in that moment that I'm so sad/angry/distressed/frustrated, it feels just so so huge and that it will never end, I'm trying really hard to remind myself that all feelings pass and to 'ride the wave' as they say. Sometimes easier said than done, I know!

Currently I'm not working (looking for a job) and so I don't have any structure which is really not good...without structure my mind wanders and all I want is for my thoughts to shut up so I fall into negative coping mechanisms that you may be familiar with. So, each morning I try to write a 'to do' list, even if it's really mundane things, with a little check box next to each one....clean kitchen, change bedding, call a friend, go shopping etc... and I tick each one off. Even if it they are not huge things, at least it feels like I've achieved something in a day when I tick each one off. I can relate about friends...I used to spend a lot of time with friends but I moved to a new city with my partner (who is very loving and supportive but I need friends too) and it's been really hard to make friends as it seems like everyone here already had their own family and friend groups. I've joined a sport group which is good to socialise, hoping I'll make some close connections but I know it will take time.

I know that I often isolate myself and I fall deeper into a hole...but if I really push myself to connect with people even a little bit, I feel more positive afterwards. Perhaps you could contact a couple of friends...and try not to be upset if they don't reply right away (I can get upset/worried if they don't but I have to think that often people are busy and they will get round to replying).

Try to be proud of whatever you achieve today, no matter how seemingly small. Sending you positive energy D1ngO, Rubia 🙂

Hello @D1ng0 just sending you my thoughts and wishes that matters in your life will have lesser bearing over you fairly soon. I know you are feeling overwhelmed and stuck and having to manage your lifestyle. You may have just reached a temporary point at which you have hit the wall in exasperation. You show lots of valour and tenacity living the life that you do.

Living with psychiatric disabilities and the medicines we take consumes energy. Work also consumes energy if youre able to be employed. Pain consumes energy. I have lived with CFS for decades now and can relate. I've spoken to people on twitter working several jobs, raising families and running on empty trying to be the best husband or wife or family member. I think you are trying your very best.

My ex-brother-in-law had depression and could barely function in a casual job and his wife was a psychologist and just understood and allowed him to be. She told me herself you can't work on these meds. Psychiatrists have publicly recognised that those of us with major psychiatric disorders cannot be gainfully employed mainly due to the illnesses and the heavy and sedating effects of meds.

I know of one lady in the MI space who said she could not have achieved what she wanted as an advocate taking psychiatric meds. She weaned herself off them and still has her mad moments. She suffers when she gets triggered but would rather have some level of engagement with doing something with her life. I don't think that is a good option for me however. I'd rather take the meds and have some level of mental health and sedative sleep than the price of having a relapse. It would be irresponsible of me in my case to come off meds as I don't have supports or a psychiatrist and live in a semi regional area.

D!ng0 i certainly hope things pick up for you I really do. I know youre not coping and feel stretched and worse off because of it. You have my solidarity. Kudos to you for being out there and trying.

If you feel the need please check in again. I love seeing you on here. Wish I could offer more than just a pep talk...

@MJG017 Hey, thanks so much for your empathy. It means a lot. And especially, thank you for saying that you relate with my description of things. Makes me feel less isolated, particularly because this didn't happen all at once, so I often feel like I'm imagining how bizarre everyone's apathy is. I got sicker and sicker, drifted further and further away from everyone, and people slowly stopped checking in. Since the change happened over years, it's jarring to realise that this new normal is so far from the way I used to live. (I don't know if that makes sense, but thank you for reading.) Kinda like boiling a frog... Horrible metaphor, but it fits.

Thanks for sharing your health journey with me. I see many parallels. My group of people was never large, either. But it still hurts to have lost that closeness to such a degree.

It's reassuring to know that the gap isn't there with everybody, like you say. I'm glad I made this post. And extra glad that folks have been supportive. I hope you're having a good day, too.

Hey @Ainjoule, thanks so much for supporting me. In my rational mind, I know that about other people, too. I know people have a lot of problems that I don't necessarily hear about, and I know my friends probably have good reasons for not supporting me as I'm dealing with serious problems. I feel guilty for needing people to support me, and especially because I can't seem to feel happy for my friend being on holiday and doing fun things. I can rationally recognise that I want my friends to be enjoying themselves, because I do love them, but actually feeling that way is something else altogether.

What I'm struggling with is the fact that my conditions may never go away. I don't know if I'll ever stop needing people this much, which makes moving forward seem impossible at times. That's part of the reason I have such negative thoughts.

Hey @Rubia, thanks for telling me about your life.

I definitely make use of the checklist system, too. That's part of the work I do, just to keep functioning. It takes a lot of effort and often causes pain. I used to get a sense of achievement from a lot of that stuff, but it's fading. Now I just feel tired, most of the time.

I do contact friends. Some take a week to reply, or a fortnight, or months. I know it's probably not about me. I'm rationally aware that I'm not the centre of the universe, which is why I often feel guilty for wishing that people would show that they care. But I haven't found a way to get rid of my need for support. Whenever I hear that my friends are struggling, I tell them that they can message me, they can call me, they can tell me what's going on. I really do care about the people in my life. I try to be there for others as much as I can. But the distance feels so huge. And mostly I just feel alone.

Hey @Former-Member, thanks for encouraging me. My work isn't too affected by medication side effects right now, but fatigue and pain... yeah, those are a huge problem.

I guess everyone finds a different balance. I feel like I'm barely clinging on, right now. But maybe someday I'll settle.

Hey @D1ng0

Thanks for your response. I don’t at all want to invalidate your feeling of disconnection. I can completely understand hoping that your friends are there and being disappointed that they are not.

I do want to give you hope however that things can get better. I have chronic pain from my spinal injury, previously bulimic turned BED, BPD, psychosis, substance abuse, etc. Like you I have had some really dark periods, but slowly I have been coming out of it. I can hear that you are having dark thoughts and I guess I want to say to is that it really can get better. And it’s ok to need people. There were people that surprised me in my darkest hour. At my lowest point I started calling people (like everyone I knew), most were not receptive to it but I quickly worked out that my aunts (who I thought despised me) were receptive to it. I can’t fully appreciate your experience but I hope that someone positively surprises you with how supportive they are. And if not, then you always have this community to cheer you on in your journey to recovery….whatever that means to you.

Hi @D1ng0

Can relate to so much of what you have said.

I have no friends that reach out to me. I see them post their "perfect" lives on line and as always, they only post all the good stuff. They share those mental health messages, think they understand, yet they have no realisation of just what we are going through.

I am forgotten, probably not even thought about.

It is so hard when we are trapped in our own lives. When just surviving is an accomplishment within itself.

Just wanted to let you know that I hear you. I understand what you are going through. You are not alone.