Lived Experience Forum

[AussieRecharger]

@Mazarita  could it be you are not sleeping because it might be that you are afraid to get your hopes up?

@Appleblossom - Wow.. Your artwork is amazing and yes, more needs to be done to dig deeper into delivering mental health services in a way that makes us feel like people rather than a diagnosis.  

[Mazarita]

Hi @AussieRecharger, welcome to the forum. 

Thanks for your consideration of my situation. As part of bipolar, I have chronic severe sleep disorders that manifest in different ways at different times. Occasionally I get more normal sleep and it's been happening more in the past six months or so. But for decades I have lived the craziest hours.

Anxiety over NDIS has just excacerbated it lately, but hopefully not for much longer. I have already been approved, just waiting for a plan and budget from them now. 

Hope you find the forum rewarding. 

[Appleblossom]

@AussieRecharger Thanks for the compliment, but I have not done the artwork in this thread.  I do not have a phone so cant post my pics, but do have a deep love of art, so collected a lot online.  I spent a lot of time on a site called artstack, however that closed down. I am now really glad that I linked a lot of those images and posted them here on this forum.   Painting was important in my family and I find the texture and quality of many of the images calming.  Welcome to the forum.

@Mazarita Yep the feelings around sleep and regulating it and anxiety are often irrational.  I had the same, and can help to view it as period of transition.  Did plenty of self talk about NDIS myself, mostly have to live and see it through. Weary Sigh ...

My son is "working" on his sleep while he is here.  He has special glasses to cut out some wavelengths, and is being physically active throughout day as well as careful winding down out night.  In that sense he is doing all the "responsible" sleep hygeine things.. I think for him and for you it is much more ingrained and a difficult pattern to shift.  He says he has a longer than 24 hour diurnal cycle.  As his mum it makes me sad that so much work has to go into something that ought be a natural welcome release after each day.  It has occupied my parenting of him for a long long time.  It is not that he is outing partying all night. 

I have someone coming over for lunch.

 https://en.wikipedia.org/wiki/De_Stijl 

Proponents of De Stijl advocated pure abstraction and universality by a reduction to the essentials of form and colour; they simplified visual compositions to vertical and horizontal, using only black, white and primary colors.

Just discovered an art movement from the Netherlands.   It is interesting my being is deeply influenced by these aspects of my heritage, including Celtic, rather than typical Aussie.

Cheers Apple

[AussieRecharger]

Thanks for the welcome @Mazarita

I'd love to hear more about your NDIS plans and what you plan to do with the funds. I have been researching different providers and they all seem to focus on delivering services in different ways. 

I hate it when something gets on my mind and i can't sleep but usually i am out like a light. How does having a cronic sleep disorder affect you and what have you found that helps to make the time feel worthwhile when you can't sleep? That might sound like a wierd question and i am sorry if it does, but i guess i figure if you can't sleep, you may as well make the most out of being awake (if thats even possible)?

@Appleblossom, sometimes the worst part about being a parent is dealing with an issue you just can't fix. Mine is alittle different than yours, but i have spent too much time already in the hospital wishing there was a cure for asthma.. espesically when his siblings don't have the same symptons as he does.  I feel like i did something wrong when he was little, like i should not have renovated the house or something else.

You just want the best for them and your wanting makes you suffer because you can't do anything to change it. 

You son sounds all grown up so you must have witnessed his sleeping pattens for a fair few years?

[Mazarita]

Hi @AussieRecharger,

Thanks for your interest and questions. 

The chronic sleep disorders are different at different times. I believe they are exacerbated by anti-depressants, but I sink too much into major depression if I stop taking the medication. Sleep disorders affect so many aspects of life.

For example, I have had long periods of time when I was up all night every night and sleeping from dawn to dusk. This makes even the daily basics difficult, eg. going to shops or appointments that need to be done during daytime hours, other things.

In a way it's lucky I like the night for the peace and quiet. I feel most clarity of mind and relaxed then on the whole. As you suggested, I make the most of being awake all night when that is happening and I am unable to shift out of it. I have had a lot of enjoyment and some recognition of my unpaid creative work. This helps with confidence as well and gives meaning to my life.

With the NDIS, a major goal is to get to the point where I go out of my home every day for exercise, group activities, other things to get me more connected to the world outside my home, where I spend too much time by far and have for much of my life. This will improve both my mental and physical chronic illnesses.

I will have a support worker very soon. She has helped me a lot before some years ago and I believe I will improve in wellness with her again.

About your son's asthma, that condition can happen to anyone. It seems to me unlikely you did anything wrong. I think some health problems are just bad luck. Sorry your son and you are going through this. I feel for you both. 

[Appleblossom]

Oh yes @AussieRecharger Took him to a sleep clinic aboout 15 years ago.

I know what you mean about thinking about all the issues effecting our children.

[Appleblossom]

Copied from religion chat thread

Rested beneath palm tree today.  Thinking about Palm Sunday and the week ahead.

after responses:

I spent time in a very traditional church   We would process with palm leaves to begin the service.  There is a lot of memorialising in Christian liturgies, which feeds into family traditions and therefore experiences.  For me this Palm Sunday was special as I was reading Bonhoeffeur in the sun and waiting for my son and grandchild under palms in a favourite part of town.   My grandson's other side of the family is atheist, but for me it was a spiritual moment.

and later:

I do not push religion or spirituality on them. They are fixed in their ideas, but there are many values we share so I focus on that, and of course interacting with the beautiful little boy.

Giving thanks that I am alive to witness and share.

[Appleblossom]

https://www.healthline.com/health/stress/amygdala-hijack#overview 

I want to keep reflecting on this.

[Appleblossom]

and this, on grieving and emotional expression

https://www.youtube.com/watch?v=Cwdo8_qwjog 

Anger can be legitimate, but dont hold onto it too long.

Move through the Valley of Death and the Shadow side. Dont camp there.

[Anastasia]

Haven't seen you round @Appleblossom so popping in to say that I'm thinking of you. Hoping all is going well with your boy too. Take care of you...the first thing that slips when we have so much to juggle. Hugs and hugs 🤗