Lived Experience Forum

[R4012]

I spend a lot of time in bed. I feel ashamed about this. I have bipolar type II rapid cycling. Experience anxiety, depression, mixed states. I am on a lot of medication. Am moving towards living a balanced life however I am finding the inconsistency I experience difficult as I know my loved one do too. It's hard to confidently make commitments in the future. I have low energy. I spend time in bed everyday. Anyone else cope by going to bed to watch tv, watch
Livestream, listen to radio, read, sleep ?

[kattytee]

Hi @R4012.. I've just come out of a four day/night bed-a-thon, I totally cope by sleeping. I find it a really tricky thing to deal with. I have depression; when I'm bad, I just hide under the covers til it's over. Only thing is this whole life shenanigan - gotta work, bills to pay etc etc. Do you have any ways of forcing yourself out of bed or do you let things run their course?

[R4012]

Hi kattytee, <br>Thank you for sharing. When I am depressed I ride it out with loads of sleep, rest, catch up streaming tv. Forcing myself out, to do things causes me a lot of stress. I've had panic attacks from doing this in the past. Anxiety, mixed mood &amp; depression washes over me &amp; then I have times of high energy, productivity &amp; everything is easy. I don't become too elevated as I'm on looks stabilisers however as much as I feel I am "back" it's borrowed time as my energy eventually shifts. I get tired. I struggle with consistency &amp; making future commitments.

[kattytee]

I count myself lucky to not have mixed episodes and rapid cycling like that - you deal with a menace of a MI @R4012! And you have my respect for making it through life to this point, you must be incredibly strong.

What are your strategies (if any) when you slump downwards?

[pip]

@R4012. When we suffer debilitating depression 'hiding' under the covers becomes our way of life. I used to get up, shower, stay up for a couple of hours, then crawl back to bed. Getting up was 'cruel/hard'. Before you get to the point you are at now, what did you do to make yourself feel good? Did you read, listen to music? I never wanted company, I actually wanted my (now) ex, but he was too busy worrying about money to notice how sick and depressed I was. I eventually made the mammoth effort to see my Dr and beg for help. He put me in touch with a psych, who gave me some strategies to help just getting out of bed. I found once I had the strategies and was able to join a group who catered strictly for people with depression, plus other MI, I started feeling better about myself. I actually rang my local health centre and inquired whether they had anything which would help me. They told me about this support group, they arranged a pick-up and this group worked with me to help me. I stayed with this group for about 6 months during which, with their support, guidance, non-judgement attitude, I gained the strength I needed to take the next step which was to get a volunteer job. I have never looked back except when I attempted to end my life, but that was through my vicious in-laws. They tried to undermine me and my newfound independence by abusing and belittling me in front of and with their son's (my ex's) full support. I left him a year ago and have grown even more. It takes time and strength to overcome depression, but with never-ending support, guidance and friendship it can be done. The 'down side' being, you have to reach out, if no-one knows or hears your cries, like my ex didn't, no-one can help you. I actually have a platonic bf, he is interstate, but without his encouragement, non-judgement, never ending patience and love, I would have gone even further backwards.

[R4012]

Thank you for your kind words.
My strategies are:
EDUCATION
- knowing bipolar. I've read anecdotal & peer reviewed articles.
I've pulled on inspiration from people like Kay Jamison's book "an unquiet mind" which gives me hope professionally as I am a social worker.
Ted tv have a few inspirational talks that have moved me
I make every attempt to embrace my lived experience
I communicate with Nic Newling a bit. Public figure who speaks to youth about suicide prevention. Nic is currently living in NYC & is featuring in a US doco soon. He was on aust story recently.
I have read extensively on medications & take leadership in the pharmaceutical management of the treatment of bipolar symptoms
My psychiatrist is fantastic & intially engaged in a lot o psycho education around bipolar, expectation of the future, strategies for when I become unwell - which could involve hospitalisation which scares me but I know could keep me alive. Psychotherapy which i passionately believe is better suited that CBT due to the episodic nature of mental illness & the fact that symptoms originate from brain imbalance.
I am aware bipolar comes with a high suicide rate & have made an attempt & ended up In an ambulance an in Emergency. Horrible experience with nursing staff.
Self awareness - knowing when I am starting to stumble off track. Sleep disturbance, over sensitivity, offended easily, focusing on things - ruminating, psychomotor agitation, inability to focus, can't focus to read, noise becomes unbearable, sensory overload, agitated easily , bickering with my partner as I don't let things go, feeling uncomfortable, restless, not wanting to leave the house.
Strategy - sleep. Sleep medication. Ensuring not even one dose of medication is missed.

When I loose grip & slump downwards it's an awful place. I was medication resistant for about a year & have muscle noticed I'm lost some muscle from being in bed for so long.
I use to isolate myself from my family as I tried to hide it from the kids (10, 11 & 19) they knew. The little ones call it the ups & downs & use their thumb to say up today, down or in between with a shake of the hand indicating so so. My youngest has hugged in in bed & said are you a koala bear today? When I'm well she said I like it when you are not a koala bear. I feel bad however I am surrounded by love.

When unwell I find it hard to cook, clean & do my bit as a mum & partner. My family are generous, gracious, understanding, forgiving & amazingly loving.

Disclosure had been important. I have friends who message me however I rarely catch up with friends. My family keep me busy. I turned 41 this week & am making every attempt to be positive & embrace my next chapter in life with the hope I will improve a I've never been as sick as I have been in the last 2 years.

I have a 22 yr old daughter who has 3 children under 4. This keeps me busy & brings me a great deal of joy.

I RECENTLY CAME OUT PUBLICLY TO EVERYONE. I put a positive proud post on FB. My commitment to reducing stigma & of being ok having bipolar. There are worse things in life.

I am incredibly lucky to have top private health insurance, to be able to access medication not covered on the PBS, top quality psychiatric appts with my dr which at times has been 3 times per week, access to his mobile ph & calls from him checking in when I've been incredibly unwell. I am well aware not everyone has this access & as a result pharmaceutical options & access to quality treatment is limited. I have seen this through my work & feel a deep sadness.

STRATEGIES

I believe in support outside ourselves. It's been up to me to communicate this openly & ask for the support I need.

Sunshine - I am vitamin D deficient due to so much times in doors so this is a priority I've put on my list

My therapy dog - a 4.5 kilo moodalier Jackson who I am very attached to - ok maybe codependent with lol
So Walking my dog
Riding my vintage bike with basket where Jackson travels in the basket
Going to the dog park where I enjoy Jackson socialising, watching the other dogs & engaging in light conversations with people in my community
I have yoga on my list - yet to do
I am considering some volunteer work
Reading as it focuses my mind
Going to the pool - am thinking of adult swim lessons
Keeping on top of the house work as I feel a sense of order
Nutrition - healthy food choices

I have ever not worked. My diagnosis is new - 2 yrs ago. Although have lived with it all my adult life. I had strategies - lots of sick days - sled medication on codine based medication, sleep medication. Ignorance can be bliss but also disastrous.

My family & I travel a lot - average of 2 international trips a year & domestic travel through the year here and there. The fast paced international travel with my partner is what tipped me over the edge. I've had extreme elevation as well as suicidal depression all over the world from Paris Scotland NYC Utah Duabi - the list goes on. Up & down. Exciting highs with high risk behaviour to debilitating lows. I now have travel strategies of sleep support which seem to help.

Everything is a work in progress.

My aim is to eventually return to work as a social worker. I have decided I am not up to the front line work I use to do in coordinating an disability support service, youth work, drug & alchol detox & rehab, front line child protection. I did my social work prac in the mental health field,!inpatient, community & forensic mental health. It was a good fit for me. After completion of my masters I was working as the sole social worker on a kicked psychiatric ward. I have learnt the art over many years to mask my symptoms well & fall apart at home! One day I looked around the ward & thought some of these people are actually doing better than me. It was at that point I identified I was not fit to practice at that time. I have a strong ethical practice framework. And Kay Jamison who works in the field of mood disorders in America inspires me as she is open & has support from colleagues if she needs a break if not fit to practice.

After my breakdown I have a journey ahead to step back into my career & live life consistently peacefully (I hope)

Anyway I have a feeling I have prattled on enough.

Warmly R 😊

[Former-Member]

I also use bed and sleep to cope and thats where i have spent most of this year. I have stopped everything that i do that usually makes me feel good then it being hard to re establish....... Dogs are the best company. Trying to re establish the relationship i had with him too. It's difficult. Thanks for posting. 

[Appleblossom]

It sounds as if you still lead a busy life even when part of it is in bed. @R4012

Changing my relationship with my bed was KEY to my survival.  I probably would have completed .. as I had strongly internalised not to lie in bed.  But about 10 years I discovered the joy of letting my head rest on my pillow during the day .. it was such relief .. and I felt foolish that I had pushed myself so hard with householding, teaching, study, gym and the pool etc for years.

NOW I am ok with the idea that it does not get made ... for others to look at .. it gets made to keep it orderly and comfortable for me to sleep in ... I actually did not have a bed of my own a lot when growing up ... and so there were many complications with sharing and what am I entitled to enjoy etc ... but I found that is I was well rested .. I became cheerful again .. before I was so exhausted a lot of the time that I found it difficult to string words together and to speak .. I just kept pushing myself ..

So YEP ... bed has helped a lot.

Nice to meet you @R4012

[Kurra]

@R4012
Your story is of particular interest to me as there are some amazing similarities in some respects.
I was diagnosed at 40 although the symptoms had been obvious from about 4.5 y o. Apparently I changed significantly around that age.
There was a period of about 4 years post diagnosis where I was clearly a victim of bipolar 1. More importantly I can recognize that I allowed myself to be a victim.
Giving you the long story short I eventually realised that I needed to take responsibility for my own mental health.

I didn't allow myself to stay in bed.
I ensured my home was clean even if it wasn't tidy.
I was harsh with myself and forced myself to live as society demanded no matter how hard this was to achieve.
I have driven myself mercilessly except when forcibly hospitalised and there have been many of those in the past not to mention the serious attempts to cease living.

Today I live life to the full. I take my meds religiously. The world is wonderful. I have rebuilt my life from the ground up twice, destroyed two professionally based careers and rebuilt both
I have and I must be realistic could still experience clinically catatonic depressions and depressions with psychomotor retardation. dysphoric mania and full blown mania. The extremes of both mania and depression are accompanied by psychosis.

Recovery is possible but it's consistent hard work. My solution has been very different to yours to date but I've also had 26 years since diagnosis to develop and refine my strategies so it's a bit of an unfair advantage. By the way I also disclose openly.

Keep working for recovery. It will come particularly if you're as pig headed and stubborn as I am.
Keep working

[R4012]

Hi kurra,

thank you for sharing your long story short with me. I got a lot out of what you wrote. You have been through some full on breakdowns with hospitalisation.

Your strength inspires me. I find it enormously difficult to push myself. When I have I've had horrendous panic attacks. Embarrassing & scary.

I am aware I give in to my symptoms. It's easier. I get so overwhelmed at times. Sensory overload. Intolerance to noise or crowds. I have a list of things I want to do from yoga twice a week, going to the dog park daily to mix with ppl from my community which means engaging in small talk, rising my bike, weights training in prep for another fam ski holiday in Jan, horse riding & ice skating lessons.

This wkend coming my family are going away for 3 days to a farm stay. My partner is a pilot as a hobby so will fly us in the single engine 4 seater plane. I love flying but sometimes feel nervous. I am indecisive if I will go or not because I'm not sure how I'll be emotionally. I don't want my up & down mood to impact my family. It does when I'm unwell.

I take my medication. I am religious about it too. However I was ill & didnt take my evening mood stalisiser medication twice this week which has thrown me. Symptoms are intense. I know in a few more days things will improve.

My family live a busy full life. I get a bit of FOMO. (Fear of missing out). I have lost too many days of my life in bed with depression. I only have 1 life.

Are you able to share with me some of your wisdom about how you manage your break through symptoms?

Thank you kurra