Lived Experience Forum

[CheerBear]

Hey @Doglover. I'm replying from the chat we had last night over in the craft thread where you asked about my hospital experience and how I am going now.

I'm careful about what I say about hospital as I know it helps some people and in a way it did help me. My psych says that it is a "certain tool for a certain purpose" and the purpose hospital played for me was to remove me from a dangerous situation and to keep me alive. From that perspective it was super helpful. Aside from that, what I found really helpful about it was that it made my family see that I really wasn't coping and that I needed support too. I also found it helpful to meet other people struggling and to challenge my views about mental illness. I met some amazing people, with incredible stories of resilience and survival. We lauged a lot and I saw that you can find good moments even when you feel as bad as I was feeling and even when you really have to hunt for them. It gave me hope I guess. 

Since then life has had a way of presenting me big challenges (as it does for all of us) that I can struggle to manage. I haven't been back to hospital as I try everything I can to stay away from it, but I have had a few stays in recovery centres which are a step up from home and down from hospital. I've found that incredibly helpful. They have been life saving and life changing. My psych and I know I may need these stays sometimes for a while yet. If I needed admission, I would try and do that before I reached total crisis point as I think it's much easier to act on something before it gets massive.

Spending time in my head and living life in general has really been like a rollercoaster and there have definitely been some low times with the high ones, and some backwards with the forwards. But in experiencing it all, I can see that things are always changing which helps me to believe that tough times can and do pass. I try really hard to hold on to that when I'm feeling like I can't cope.

Living with MH issues has taught me so much and I think that's something that I appreciate about it. It has taught me what matters most to me. It's shown me what I can do to get through hard times and it's given me a huge toolbox of coping strategies to draw upon. I know a lot more about myself and about people from living with it. This reminds me of an awesome thread over here. You may want to have a read through it and contribute to it if you're looking for some hope. There's plenty of it to be found in there!

So I guess the short version of it all is that life can still be really hard for me. Sometimes getting through it all looks like smooth sailing (not often 😉), sometimes it looks like frantically trying to keep my head above water and sometimes it looks somewhere in the middle, but I do feel more able to cope as I make my way through it. 

I hope that kind of helps maybe. I'm really sorry to hear you're having a hard time at the moment. Is hospital an option for you? I think you mentioned your medication isn't working. I know of people who have found a hospital stay helpful in sorting out medication. You also mentioned self-care which is a huge part of recovery for me and one I have really had to learn and practice. What does self-care look like to you? 

Big hugs doglover. It's so good to see you reaching out and connecting. They're both more ✔✔ on the list of things that can help!

❤

[Doglover]

Hi @CheerBear , 

Thank you so very much for your heartfelt reply and for sharing so much of your journey with me.

I really appreciate it and it means a lot. You have a remarkable way of looking at ur MI and for seeing the good that can come out of such a journey, not just the bad.

Btw, i hope u dont mind but i will probably break up my reply into several posts bcoz my phone seems to get more and more temperamental the longer my post is, and has bn known to crash and i lose the lot and i dont want that to hapn!

You hav an amazing perspective on ur hospital stay - how long ago was it? Im so glad that it served the purpose of keeping u safe when u otherwise may not hav bn. Were u in a private or public hospital? Im glad to hear that it helped to open ur family's eyes also to your need for support. Is there a Mr CheerBear? If so, is he supportive of u now and there for u when u need him? I find that men often find dealing with MI very difficult, at least i know my husband does. He doesnt understand it and just gets frustrated/annoyed, even angry at times. From time to time he can b compassionate but mostly i try not to bother him with it. I mean, obviously it affects our lives, but as for talking to him about how im feeling and whats going on for me, i generally dont go there.

I find that very difficult.

Amazing that u could find some laughter in amongst such a difficult time. It sounds like u hav more support around u now which is good. Are thr people u can turn to for emotional and practical support when required? I hav my mum, but she is not well physically so i dont like to turn to her too much. When she is able she is a good support bcoz shes bn thr with MI, she has had significant struggles. I cant rly turn to my husband or rest of my family (brother and sister in law) as they are too busy to worry about my problems. I hav 1 elderly friend who is good to talk to from time to time, and thats about it. Oh, and the SANE forums of course. From a professional point of view, i hav a psychiatrist and an ot, starting group therapy in a couple of weeks and they hav put a referral in for a public psych but that cld take a few months. Iv bn to psychologists before and rly havnt found it beneficial so im hoping this time is different. Anyway, will post this before it crashes on me....

[Doglover]

The recovery centres u mentioned @CheerBear @ sound interesting. Are they specifically for ppl with MH challenges? I dont think we hav them here. They sound like they wld be a real blessing. Im rly concerned about having to go into hospital. I dont want to bag out public hospitals but the one whr i live leaves a lot to b desired. I was in thr for 2 days, officially as an inpatient but didnt stay thr overnight and my husband was with me the whole time, waiting for an appt each day and it was just awful. It broke my heart seeing the ppl in there with absolutely no support. I didnt see 1 staff member interact in any compassionate way with 1 patient in the whole 2 days i was sitting around waiting for appts. It was just awful. And i didnt feel safe in there and my husband felt the same for me, he said there was no way he was going to b leaving me there bcoz he cldnt protect me. So even tho we cant afford it, we rly need to look at taking out top hospital cover in case i do need to go into hospital so i can go private. My concern is particularly surrounding getting off meds. So iv bn on short term only anti anxiety meds for 7 months bcoz they havnt found anything else to control the anxiety. I am on a low dose AP for sleep and supposedly anti anxiety and now i hav to get off the 2 lots of short term meds, which my body wld now b addicted to. I hav reduced 1 med by a quarter a week ago and can well and truly feel the increase in symptoms. When i tried reducing the other med by the same amount about  a month back (under psych instructions) everything went haywire. I was in an absolute mess, i cldnt cope with it, i wanted to die. They told me to put the med back up. Now thr trying to get me off the other med instd. But im rly scared of whats going to hapn coming off this med, then knowing iv still got to get off the other med as well. Doing it at home at the  moment but i am scared about whats going to hapn and that it may result in a hospital stay. They said i cld up the AP but i dont hav psychosis and i dont want to b on doses of that med that they wld giv someone with psychosis. My mum had psychosis with bipolar and shes on less of the same med as i am and ive 'just' got anxiety! Im scared of becoming a zombie, scared of not being able to get down to a reasonable level of the AP med once im off  the other ones, and scared i wont be able to function normally in society again! Before diagnosis, i was a highly functioning person in a highly demanding job, i was only part time due to physical health issues, but i worked hard and was an asset to my company. My hubby and i didnt go out a lot coz finances r always tight, but we loved each others company, loved being together, laughed and had fun so much, even doing mundane things. Now i feel like my world has come crashing down around me. I havnt worked in 7 months, im no longer the same person my husband married, we hardly laugh, our lives are just a shell of what they once were. Our marriage has suffered trememdously. Its just a rly rly hard road. I wish my husband cld b more compassionate and understanding, but i also realise hes never had any exposure to anything like this, and its not something he can 'fix' which he finds rly frustrating. I am trying to hav hope that things will improve but im not finding that easy. I just cant see the day when i will b myself again and b able to function normally again, in my life, in my marriage, at work, etc. Its just so tough. And i know that thr r many ppl worse off, and for them i feel so sorry, but it doesnt make my situation any easier

[Doglover]

I think its amazing @CheerBear  that u can see the positives and even appreciate all the things uv learned. I think iv got a long way to go before i get to that point. Im still so heartbroken at the shell of a life i know hav compared to what it once was. I hope one day i can see things differently and see the positives like u can. I am glad u hav the skills and tools to work ur way thru the hard times better than u once cld - i guess iv still got a way to go on that one too!

Im still figuring out the self care - hanging out with my mum chatting and knitting is one, knitting on my own to a lesser degree and only at times, other times i find it annoying. Sometimes when i walk my dog i will sit at a park and ring my elderly friend who is supportive, thats about all iv got in my bag of tricks at the moment. My ot has taught me deep breathing and 'mindfulness of the breath' techniques but i cant say i find them overly helpful. I actually tend to get more anxious when im doing the deep breathing. I used to do clinical pilates and found that so helpful but had to stop when i stopped work - that wld b an excellent self care thing to do if i cld. So thats about it self care wise, i know i need a lot more tools in my arsenal in that regard.

Well i hope i havnt overwhelmed u with so many long posts! I understand if u cant reply to them all, or if it takes a while.

Thank u for encouraging me for reaching out for support. I rly appreciate you and all that you have shared. Thank you @CheerBear  and big hugs and appreciation to you. XOX

[Doglover]

Oh and thank you for the link @CheerBear , i will check it out. ☺

[CheerBear]

Hiya @Doglover. How have the last few days been for you?

Going back to the question you asked about hospital, I was in a public hospital. I have heard that there can be a difference between public and private hospitals but I don't have experience to be able to compare them.

I don't have a partner and haven't for a while. I lived with family violence and the trauma of that is behind a lot of the mental health challenges I still experience.

I'm sorry to hear your husband gets frustrated and angry at you sometimes. It would be really hard to be struggling as you are but unable to talk with him about it. Has he been with you to any appointments or conversations you've had with professionals about your MH? Sometimes I hear of partners not understanding mental illness/mental health challenges because it isn't something they are used to talking about or living with themselves and they don't know how to help but can't see that helping can be simply allowing space to talk and share. Whatever the reason is, it would add another challenge for you I imagine.

I have parents who are supportive but like you, I have trouble reaching out to them sometimes as one is very unwell and the other is living that with them. I know they want to help but I don't want to add too much to what they're going through so I can relate to the way you spoke of the relationship you have with your mum.

It sounds like you've had such a hard time with meds 🙁 I've struggled to find much in the way of medication that helps and had some awful experiences too. Sometimes they have made it worse and I too am pretty scared of meds. But over the last 6ish months I have been on a mood stabiliser and I think it is helping, which was a huge (and nice) surprise. I empathise with your fear and some of the struggles you're having trying to find something that helps.

Something else I empathise with that you mentioned, is the huge loss that can come with MH stuff. It is something I don't think is recognised widely but it is real and really hard! Not only is there a change (and loss) in the way MI impacts functioning, but it can change the relationship you have with yourself and people around you as well as your hopes and dreams. It can be life changing and I find the grief of it really tough at times. You are so right in that knowing others have it worse doesn't really help how you can feel about yourself sometimes. I actually think it can make it harder as, at times, I feel like I shouldn't be so sad or angry or hurt or struggle so much (or whatever it is). I know there is no reason for that 'should' as I'm doing the best I can and that there is only so much I can do with a head that gets very wonky sometimes, but that 'should' likes to try and take over. Sending you huge hugs for the pain I can feel through your posts.

It really sounds like you're doing heaps to help yourself and I can see how determined you are to try and find a way through this. It's OK to be finding it really hard right now, even though it might not feel OK at times. It's helpful to have a place or places to share that openly.

I'm heading off now as I have a busy day ahead. I've recently started some volunteer stuff that I'm going to today. It's a very small commitment in terms of hours but it takes me a huge amount of mental, physical and emotional effort to get to. Sometimes I really get caught up in my then vs now life and how hard it can be to do things I once would have found much easier, so I do get what it can be like to sit where it sounds you are now. In saying, I know it will be worth it once I get there and I know these steps (sometimes baby steps and sometimes big leaps) really do add up. I hope you're able to see some of the steps you are taking too.

Sending you ❤ doglover. Hope today has some good in it for you.

[Doglover]

Hi @CheerBear , thank u so much for ur reply post.

Where do i start? The last few days hav bn rly difficult - it feels like things r getting worse, not better. Reducing benzo meds (hope this post doesnt get removed for mention type of med),, upping other meds to assist but all my symptoms hav increased and sleep quality and quantity have gone down the toilet. Pretty concerned about whr things r headed. Tried to hav a convo with my husband about it this morning, didnt go so well.

Im so sorry to hear of ur past. It seems MI can so often be caused by traumatic experiences in our lives. 

Do u get lonely being single? Mind u, silly question rly, bcoz u can b married like i am and b just as lonely. Hubby has bn to some of my apptments which is good i guess, but doesnt seem to want to talk about it or allow me to talk about it. As u say, just being thr to listen and maybe hold me is all im rly looking for, but that is very rare. And yes, it is very challenging.

Im glad u hav supportive parents, but understand ur need to b mindful of thr challenges. I wish i cld talk to my mum more bcoz i dont rly hav neone else to talk to, but that wld b being selfish as it wld b too much for her.

Yes im pretty afraid of meds as well. Iv only rly found one type of med that works for me, and thr the ones that u can only b on short term and iv bn on them long term bcoz they cant find anything else that works. So im being gradually reduced off those meds (slow process) but not on nething thats rly helping with the anxiety so its pretty tough. I hav a feeling that they r going to want to try mood stabilisers next bcoz its the only thing they havnt tried, but i dont hav up n down moods, i have anxiety. Do u mind  me asking what u hav bn diagnosed with? Do u hav anxiety, racing thoughts etc, or are ur issues different to that?

Might post this before i lose it and do  another post!

[Doglover]

Me again @CheerBear .

How long were u trying different meds before getting onto mood stabilisers? Im sorry uv had a hard time with meds, and can relate. Its bn a very tough road. I must admit, i rly dont hav ne confidence of things getting better, it just seems like they r getting worse.

Im sorry that u experience such grief over what was, what is, what could have been, the changes in life and relationships that come with MI. It rly is a hard road. I was totally unprepared for the depth of grief and sorrow that i have experienced. Im sorry u hav found that so difficult too. And ur right about hopes and dreams - i used to hav many, now i hav none, other than to one day be in a better place than i am now. It leaves life feeling very empty. I so want to get better, for me, for my husband, for our quality of life but it seems that i am powerless to bring that to pass. And that is rly tough.

Good on u for volunteering, even though it presents significant challenges for u. Its great that ur wanting to push thru those challenges to further ur healing and quality of life. Iv bn off work for 7 months and desperately want to get back, but thrs no way i can in the state that im in, nor for the forseeable future, and its heartbreaking. But good on u for taking what is a really big step for u. I hope it all works out and u find a sense of satisfaction and fulfillment in it. How did it go for u on Thursday?

Thanks again @CheerBear  for all of your support. Sending u my best wishes and encouragement to you, and appreciation for your help and support.

💚 Doglover

[Doglover]

Hi @Shaz51 , feel free to talk and share on this thread. Look forward to hearing from u. Xx

[Shaz51]

How are you tonight my @Doglover 

Thinking of you lots today