Lived Experience Forum

[Rosie]

Hey everyone, I'm Rosie.

My diagnosis of schizophrenia has me down. I have been taking meds and living again with family for nearly three years, and almost all the symptoms have gone, my delusions and hullucinations are less recurrent and I can look back and see how unwell I actually was. So everything is cool and good right?

Well, from the outside it all seems good. Symptoms gone. Check. Have a job. Check. Family supportive . Check.

Yet I am completely stuck in doing the bare minimum to get by. Well, holistically. I go to work, try not to stress out that people think I am weird, come home, have dinner and if I can bear it, watch some television and go to bed early. TV can be hard to 'do' as it can bring back memories of being in a delusion, so it's not all bells and whistles.

The things that "light up one's life" are far away, because I associate many of them with my MI, and I have trouble exerting the effort to bring them into my life. Because I reason with myself and I attribute creative energy with being schizophrenic. I have tossed out so many of these things trying to rid myself of the illness.

I miss this creative energy that used to flow through me in a kind of wild uninhibited wave - yet I can't go back there. Things are comfortable and organised now - but even getting up to go for a walk in the morning is too much effort. I feel blocked from the essence of motivation, from the will to go on, from the will to undertake projects like knitting, music and playing sport. I feel like I am not good enough at them, I am scared of trying to try new things and the effort of PRACTICE just seems too much.

It's easy for me to blame the meds as they definitely contribute to my lethargy. But I am scared to go off them because I do not want to get ill again.

"I have dozed through my alarm to go for a walk for three weeks and I am over it!" I wrote in my diary on Sunday.

[nigioc]

Hi @Rosie 

Welcome to Sane! You'll meet some amazing people here. 

Keeping the creative fires burning brightly can be difficult when it's so common for meds to kind of 'blur our edges' a little. Lethargy, lack of motivation, fatigue are often experienced by people on meds, and some days it can feel like a huge sacrifice.Which is why it's so great that you're able to stay connected with the important role that the meds are playing in your recovery and the fact that they are doing what you want them to do. That you don't want to go back to how things were before. I believe @kenny66 has posted about similar things in the past.

I also really liked how you wrote "it's easy to blame the meds" because I totally agree, the meds do a bit of it but it's not impossible to create when you're on them. It just takes a little bit more of a push.

I got this great piece of advice a while back. I was talking about this type of thing, feeling really unmotivated and not knowing how to kick myself into gear. The suggestion was I work out what are the things I do that I don't notice time passing.. You know, those times when you're engrossed in something and you look up and go 'wow, It's way later than I thought." By working out what those things were I was able to start adding them more and more to my days. They developed a momentum of their own and pretty quick I felt like I was spending my time creating and doing stuff I loved.

What are the things that make time fly when you do them?

[kristin]

Dear @Rosie 

A quick (but warm) welcome to the forums, before closing time. It sounds like you have come a long way but are missing some of the things you left behind. Now wondering are they part of the illness or just "guilty" by association?

I have bipolar and have similar issues with fitness (as in fanatacism). I've finally reconnected with my creative side a couple of years ago, long lost decades past, so that has been really good. Before I started the art classes if anyone asked me I would have said I'm not an artist, but the truth is that I can and do produce some powerful artwork. I'm not medicated because it makes me ill, so I have had to learn other ways to manage. That can be hard work too. Sometimes I just can't connect with the creative spark because I'm overwhelmed with "stuff" in my life.

I truly hope you can rekindle the creative thing without having to feel you'll get roasted by it. I know I would really miss it.

I'm sure @kenny66 will say hi and share some of his journey. He;'s a real gem 🙂

Take care and keep posting!

Kindest regards,

Kristin 

[kenny66]

For many people there is a definite link between creativity and their schizophrenia. Some of my writing was quite beautiful when I was ill and I miss that very much.

Every so often a small flicker of that creative light emerges, more like an ember really.

However having that talent is not worth enduring all the other negative aspects of schizoaffective, so I tend to trade off being well as against being more creative.

The way I look at it, is that I am still creative but that little part of me is hibernating to be resurrected at the right time, whenever I feel that should be.

Its a bit like when I am manic, I love the euphoria and thrill of it all, but the crash is devastating.

Nevertheless there are aspects of schizophrenia that I embrace and I have stridently avoided in categorising the condition as being negative, as most of the rest of society does.

Medication is a difficult topic. I hate aspects of it. However without it I would be uncontrollable. Not violent or anything near that but not really part of society.

I am sure you know how difficult it can be with the voices, delusions, hallucinations and the running commentary, all whilst you are trying to be a member of society-almost impossible.

I take a fairly lethal dose of medication over the whole day but I have quite gotten used to it now. I do get tired and can lack motivation though.

I started volunteering at an animal shelter and also with animal rescue and wild life care group. Its amazing how having something alive relying on you to feed-water-walk or whatever motivates you.

I thought I would die of a broken heart when I started looking after rescue animals, but once I realised what I did made a difference I put some serious effort into it. I still cry over some of the things I see, but what I do does help.

Likewise I help out at the MH clinic sometimes especially for those people who have no one and have been treated badly in so many ways.

I also have a new friend who is schizophrenic and blind, so I go shopping with him a bit and read to him quite often now.

 The world doesn't have to end with schizophrenia. I founds its all about what motivates me enough to push me forward.

I refuse to give in to the sleep monster and haul myself out of bed no matter what. Anyway my schizophrenic housemate who never seems to sleep, makes so much noise all the time, you have to get out of bed.

There are many things, that only we know about which can move us forward. Its discovering what these are and applying them that may make a difference.

In my case it is because someone/something is relying on me for support and I cant be late. There is no reason that you cant be creative as that is a talent that is inherit.

Looking at the world through untreated schizophrenic eyes can be a magical experience, a world filled with gossamer and ecstasy, an addictive elixir. No wonder some of us don't want to lose that.

[Rosie]

Thanks for the welcome @nigioc!

Your post in which you wrote:

"Which is why it's so great that you're able to stay connected with the important role that the meds are playing in your recovery and the fact that they are doing what you want them to do."

Well, what a great way to put it.

It can be a catch 22 sometimes. But yes, the ability to stay connected to the role the meds are playing in my recovery - I feel very lucky for this.

I guess writing and reading really make the time pass without noticing it. I often lose sight of what brings me pleasure as I make myself worry about how people percieve me and spend time doing that rather than the things I love(d).

I really do need to finish the patchwork quilt I started - where time flew by, a whole day in fact - making it for my future neice/nephew. It has holes in it that I need to fix up before I get someone with the expertise to do the machine quilting bit.

I went for a walk this morning too - I won the sleep battle this morning. The dawn and the fresh air in my lungs as well the engagement with this forum to think about really made my morning quite nice.

Thankyou @kristin and @kenny66 for your replies as well. Art classes and actually living out of home supporting someone else sound like wonderful things I could definitely look toward to.

You wrote @nigioc that I would meet some great amazing people here. I think I am, and I think it is a really positive thing to be able to have somewhere to talk about MI.

[Alessandra1992]

Welcome @Rosie
One of the things I have found to be helpful is to rethink what is creativity? Some people can be creative with their hands through ceramics, sculpture, painting, drawing, sewing, carpentry cooking and some people are creative with singing, writing, talking or listening.
The stories on this forum speak to me in volumes of how gifted people are in expressing their experiences and how creative people are in supporting each other on this forum.
It is a tricky thing as @kristin says, sometimes it can be that our flow can become a current that overwhelms us, but, not always.
Finding a flow that nourishes and supports your wellness may be take a while, but I would not enjoy my life as much without it (for me it can be escaping into a really good novel for a few hours, or designing my next quilt)
There are techniques I use to keep me fairly grounded, such as an alarm on my phone..and that has been to prevent my back giving out when I sew for too long or do tapestry. So I set my alarm for 2 hours after I start, and make myself a cuppa, or a bit of a snack to make sure I get up and walk..sounds a bit regimented but I need to break chunks of time up so I don't overdo things...
How is your quilt going? I find quilting to be incredibly relaxing, but I don't do hand piecing, I machine sew as my hands aren't good with fine stitching..
I would love to see a pic of your quilt when it is finished...when I learn how to upload pics I will post one of mine up...

[Rosie]

Super @Alessandra1992 !

Will do when it is finished. And looking forward to yours.

The alarm is a good idea. My back did get a bit sore. And I did overdo it a bit that day. I think that's why I haven't gone back to it for a while. I exhasuted myself too much during that day.  I think doing little bits and pieces of the little bits and pieces is a better approach. Thanks for that idea.

I machine sew too, just squares and rectangles at the moment, as I am only a beginner. I find it relaxing as well, I love the colours and the different materials.

Rosie

[Alessandra1992]

You're welcome @rosie, and with quitting smoking you will find more chunks of time to draw ideas for quilts too..I enjoy making pictures with quilts too, almost appliqué I call it.
Also, I have invested in some great beginners quilt lasses with Janome..I found sometimes going to a licensed dealer like Janome, husqvarna, brother was cheaper than quilt classes run through fabric supplies sewing shop.
Watch out for stash building though.. Easy to buy way too much fabric..
Darn cheap fabrics sell quilting fabric for $7.50 a metre, sometimes down to $2/metre.
They are online, have stores in Melb and I think Sydney?

[kristin]

Actually Sandy that might even be an idea to help @Rosie  with trying to quit smoking. Rosie what about trying to get a little tiny sketch book - they come in nearly cigarette-pack size. You can keep it and a pencil on you to draw ideas for quilting when you crave a cigarette. Worth a try as a distraction? Turn an unhelpful habit into a healthy one?

Cheers, K