Living with Bipolar

[TopsyTurvyDays]

Named changed and starting a thread just to reach for some understanding I think.

In my 50s, diagnosed a couple of years ago with bipolar when had episode of hympomania. Got back in touch with consultant yesterday as could feel mood lifting (I get more mania than depression). I don’t get euphoria- just angst and misery. Consultant is trying to help me find something more constant I can take to help get enough sleep, as sleeping tablets are addictive and stop working.

I’m just tired and worried and constantly monitoring. Worried I’ll be too much for my friends one day. Worried that I’ve passed on troublesome genes to my kids. Not too worried about my DH as he seems to take it in his stride… looking back I was disguising mild mania with being drunk when we met back in our uni days - so when I fell over the edge, it was all behaviour he’d seen before. We had a worrying couple of days while they ruled out brain tumours etc.

The only people who were mean to me (shouted and screamed) when I slid down the slope into needing an ambulance were my family - siblings and parents. That’s hurt.

I thought I’d imploded my life but actually it’s all gone back to being the same 99%.

I worry for the future. I had an adverse reaction to diazepam and I couldn’t get them to believe me because they thought my behaviour was all the mania. My DH believed me and he got them to believe him.

I worry I won’t be able to drive in the future as we live rurally. But living where we live is part of the reason I held on so long as it’s so peaceful and I love it. Doesn’t work if can’t drive though (lockdown was a taster of what being stuck in house 24/7 was like and it was unbearable for me).

Thanks - it is frustrating as I’d been so focused on getting to the appointment and my waiting skills aren’t the best!

Just trying to keep going and keep the depression as under control as I can.

It’s a disgrace really, I know they are under pressure but when you are unwell then you psych yourself up for the appointment and it doesn’t go ahead it hardly helps the situation! And making you wait weeks for rescheduled one is crap. I have just been reallocated a CPN and the wait between appointments is 7 weeks, I think it’s meant to be one to two weeks so it just feels like they are paying lip service to it really 🤷‍♀️

@MarmadukeMit is really shoddy isn’t it? Having to wait 7 weeks is torture when you have bipolar symptoms that have probably been acute for weeks before we even seek an appointment. You have my sympathy.

I was last seen a couple of years ago and it felt much faster although I can’t say for sure if it was. I was in a bipolar manic high then so everything felt faster compared to feeling the slowness of depression!

The only time I have been able to get any interaction since my last consultant left is by getting someone else to advocate (GP or DH). The standard of care is nowhere near NICE guidelines. I know they’re tight for money but it feels so cruel to leave people suffering whom they could easily help. Not just a mental health issue though after an initial scan, my friend was waiting for testing for a kidney issues for years not months.

I was meant to see my cpn last week for the first time since my holiday but she had to cancel. I had my first of four formulation sessions with the psychologist last week and she said I should here from her about a replacement appt but I haven't. She's joining the appointment with my psychiatrist on Monday but it feels too far away given I last saw her in July.
I've had a message from her the walking group so I know she back.
I've had a (planned ) drop in one of my antidepressants since I have been back and it's not going well. I just want to cry and hide from the world but I've got a my eldest home on school holidays. I've got my parents taking her for a day this week and next week but feeling wobbly. I want to scream and run and I don't know how to say I need help.

I have another psychology appointment on Thursday. She said half way through the first appointment that she's already got an idea of what therapy options might be suitable for me but the idea she has would be a 2 year commitment. Although it might come down to how my health is and whether I need a bit of psychological support before being able to commit to that.

I feel so fortunate to have the perinatal team at the moment. When I was under the cmht before pregnancy. I had 1 appointment with my cpn in September 2022 and he said he would be back in 2 weeks time and never returned and I saw the psychiatrist twice a year. It sucks that so many others are in this position. I don't think I have had any good experiences with the cmht, other services yes but the cmhts always seemed overstretched and under resourced. Inch by inch more is taken.

@Superscientist , sorry to hear your appointment has been cancelled. The system is just such a mess. And I agree that extra childcare responsibilities is a tough one - trying to put on a smile when inside everything hurts. I'm finding that a bit tough myself. I know I should be making the most of the time off with family but some days I'd rather be hiding under the duvet.

I 100% agree that the CMHT are not able to provide an acceptable level of care. And it is not helpful that we feel that they are at best unreliable. I think with mental health issues you need to have the correct support but it’s just not available 🙁
what you going to do about the antidepressant? Up it again or persevere? I hope everyone with young kids on here feels better once they go back to school - it’s two weeks isn’t it? You are nearly there!
also @Superscientist if you need help would you find it easier to put it in a text or something if you don’t want to verbalise it? I’m sure people in your life would want to know, would want to help and will understand xx take care ❤️

CMHT are often so useless. I'm sorry some of you have had such bad experiences. I've had such a mixture the past 10 years, some has been ok and some down right negligent.

Just wanted to ask if anyone on here is on lithium, and if you are do you have kidney problems? I've just come off lithium due to the kidney issues but was led to believe that my kidneys would return to normal afterwards, however that hasn't been the case and they've actually got worse.

@Mousse1990 , hi, I think I saw your post on this. I didn't reply because my eGFR had been fine, but I've only been in it for 6 years ago and I think you said you'd been on it for 10?

I'm really sorry to hear that. I don't know about you but lithium was agamechanger for me.

@Superscientist , nice to see you again, but I'm really sorry things are tough. I second @MarmadukeM, maybe try worrying things down. I know this is controversial but chatgpt has been so helpful for me when I've stigma to communicate. Thinking of you.

Hugs to everyone having no tough time.

im yo-yo-ing at moment, this depressive episode just won’t finish.

@Mousse1990 im on lithium but only been on it coming up 3 years. No issues yet but early days. Sorry you’re having issues with your kidneys. Have they found any other possible cause other than the lithium? Are they currently continuing monitoring kidney function or taking any other steps? Have they given you another mood stabiliser?

Thanks everyone. I met a friend for a trip to the park and I tried to talk to her but with keeping an eye on 3 kids between we didn't get much flowing conversation.
I have my second therapy appointment tomorrow and a joint psych/con appointment on Monday.
I've not had any of my iron tablets for the last 2 weeks as I ran out, they weren't with my meds when I picked up my repeats so I need to phone the pharmacy and /or GP it's just more effort than the energy I have.
I have had many a conversation with Dr Gemini about various health things and find the tone and bit irksome. It's all a bit to cheery and trying to please so not sure about the emotional stuff.

One of the things that the therapy is aiming to look at is my inability to prioritise my own needs and how I repeatedly dig deep to help others and leave myself without the resources for life. I have been conditioned from a young age that my mum's needs come first every time and I find it really difficult to ask for support or showing that things are hard. I told my friend that I had been struggling the last week or so with the meds reduction but then a few minutes later she asked if I was doing better now school had finished so it just didn't flow.

@Mousse1990 how long have you been off the lithium? I am not on lithium any more but I developed liver issues in pregnancy and it has taken longer than expected for it to recover. I've just had a quick Google about lithium and kidneys and it seems that there might be multiple ways that lithium can cause kidney issues and depending what has happened the recovery time can vary. Things I would be asking is what monitoring is appropriate, what other tests can they run to distinguish if it's lithium causing the issues or is the something else going on and the lithium was a red herring ( whilst they were pretty certain my liver issues were pregnancy related I had a liver ultrasound and gallbladder check as they are two other common causes of liver issues in young females) and is there anyone that they can ask for guidance from? My GP has asked for advice from gynae, haematology and endocrinology for my post partum recovery. The endo team suggested some other tests they could run and conditions to check for without having to wait for a referral to come through.

@SuperscientistI Hope your therapy goes well! Sorry to hear that you had liver issues. Pregnancy can do some funny things.

I've been off lithium completely since 21st June but my kidneys have just got worse. I expected them to just go back to normal. I've had an ultrasound before when I first got to stage 3a.
I don't know what will happen yet until they redo the bloods. It's frustrating me that I have to wait 6-8 weeks for this in limbo! I assume if it doesn't improve they will refer me to a nephrologist. I think they can look to see if there's any protein in your blood and in some cases they will will do a biopsy but apart from that and another ultrasound maybe I don't think there's is much else they can do.

I'm sorry @Mousse1990 , that absolutely sucks.

How are you doing, kidneys aside, now you are off the lithium? Did you tolerate titrating down ok?

@ByLimeAntI'm doing fine off the lithium (I was already taking olanzapine) apart from bad work anxiety. It didn't seem to make any difference coming off of it thankfully. I was soo worried about coming off it, aswell.

The wait for bloods and repeats is never ending. I think the recovery time can take a while and you might still be seeing the effect of the lithium. I don't know enough about it but 6-8 weeks is quite early in recovery terms.
8 weeks was the time frame I was given for my liver and that's better at repairing itself compared to the kidneys.

There's the effect of the lithium directly but also changes within your body that the lithium caused these can be slower. Time, patience and definitely push for specialist referrals as they can take a while to come through.

My therapy went ok, I basically cried through the whole thing. We were doing a family tree and it was tough, it was funny the things she picked up that others previously hadn't. There's a lot of difficult relationship. If I stay within the perinatal team I would be entitled to up to 24 sessions and I have just over 12 months left with them. The focus would probably be more on post partum and children stuff. The other option is psychodynamic therapy which would be up to 2 years but is a separate service. She thinks this would be good for me but it's the cost of delving into things properly. There's a lot of hurt I avoid.

My mood is pretty low and I have a hectic weekend coming up as it's my daughters birthday. I have a psych appointment on Monday and I think I need more antidepressants. I'm on 300mg of venlafaxine and I've down to 7.5mg mirtazapine (previous 15mg). She's said before that the venlafaxine could go up to 375mg. Reducing the mirtazapine was to reduce polypharmacy to see if that helps my liver and mirtazapine is sedating and I'm still struggling with fatigue. I know she will bring up lithium but considering I've had borderline thyroid results and unknown health stuff going on I don't want to throw that into the mix at the moment.

We should love peace and hold onto to being peaceful.

@Superscientist this sounds exhausting for you .

I'm so sorry. Is the input you are having helpful? I know it can be hard to see through the trees sometimes

For god's sake, I'm still getting anxiety on Sunday evening, even though I have no job to go to. My brain is stupid!

@Ramblingaway , give yourself a break . I get it too and I like my job!

Need to vent! Work have referred me to occupational health to assess my fitness to work. I’ve been off since the end of May after I was suicidally depressed and had to be sent home from work and seen by the crisis team. I understand they need this assessment but what has really got me annoyed is the fact that they have asked very specific questions which include what risk I may pose to my fellow colleagues and what risk I pose to patients (work in nursing).
I just think it’s so out of order as I have just had depression from my bipolar disorder - I have never done anything the pose a risk to patients or staff - literally nothing! It just feels so out of order even raising these questions based on nothing at all and whilst I am fine with the fact I have bipolar disorder I am not ok with this attitude. They are questioning my fitness to do my job - I worked there for 6 and a half years before I got ill again and it was fine prior to my relapse! They won’t even let me into the building to pick up paperwork I need to do my revalidation this month and have told me to contact the NMC and tell them I am off sick and to defer it. Additionally they have taken over two weeks to do the referral and have now put me onto half pay even though I have been actively pursuing returning - I got a note from gp at the end of July saying I could return but as I (having a stream of no luck) had broken my wrist and had to have surgery they wouldn’t let me back as I couldn’t fulfil my role. They know I have split from husband and moved into a house by myself - I can’t afford to live on half pay so how this is meant to help my situation I don’t know! I’m just so pissed off with them. It’s a new external management team and I feel like they want rid of me even though I’ve been there since 2018 and always been punctual, professional etc. it’s so shit and they longer I’m off the more nervous I become about going back! Thanks for listening xx

Oh I’m so sorry to hear all that. Those questions sound intrusive and I’m not sure your answers could be assessed by anyone other than a psychiatrist anyway - so it’s arse-covering rather than helping you. Big big hugs. It sounds all a bit “management by rule” so I wasn’t surprised to hear you’ve got a new management team in. Is it worth a chat with ACAS? If you and your GP say you’re fit to return to work and you’re not at work before they want you to go through internal hoops, I would wonder if you would have to case to argue staying on full pay? I’m not sure but an employment lawyer or ACAS helpline should.

Sadly @MarmadukeM none of this surprises me, my mum worked for the NHS for 30 years and how they treated her during sick leave was awful.

She had problems her back due to several injuries sustained at work. She ended up destroying her stomach because she would dose herself up on painkillers to get through shifts. The damage to her stomach means she's at higher risk of developing oesophageal cancer and has been unable to eat properly since she retired over 10 years ago.

They would make procedural stuff more difficult too. There was one time when there arranged her disciplinary meeting, only notifying her through letter in pigeon hole put in after her last shift in a run and scheduled part way through her next shift. It would have meant that she would have only a couple of hours notice and would have struggled to get her union rep there. As it was she came into cover someone else shift so saw it the day before was able to get the union rep in. When the manager was pulled up on some of their actions rather than my mum leaving the meeting with an official warning she left with the manager formally being stopped from doing some of the shift allocations that was making my mum's injury and illness worse - she worked three 7am-9.30pm shifts a week as it meant she had a lunch break and 4 days a week to rest. She could manage two shifts back to back but not 3 and the ward manager used to give her all 3 in a row and occasionally 4 if it crossed into next week. After the meeting she could only be put on 2 in a row on the rota.

It's hard when the bipolar diagnosis makes things bigger than "depression" during my PhD I faced discrimination from my supervisor who also happened to be the disability officer. It made my life difficult. I had safeguarding and safety assessments. I had periods of been banned from lab work in my undergraduate pre-bipolar diagnosis and voluntarily banned myself during my PhD post diagnosis.

That all said, giving them the benefit of the doubt, could the referral be centred around you having to be sent home rather than you calling in sick? I would go into that appointment thinking about what could have been done differently in the days and weeks running up to that day so that you didn't need to be sent home. I'd would also prepare all the things you proactively do in order to stay well in between time and what would help you when you start returning to work.

I think the fact that the NHS is free and available to all is bloody amazing and fantastic, but, I also really hate the way it systematically abuses staff and puts them in positions that jeopardises their health (and also doesn', in some cases, provide adequate treatment for repairing their health). Jumps off my soap box 😘

Thanks xx I have an appointment with my CPN on Friday (routine. haven’t seen her for 6 weeks) and I was going to discuss it with her as well. Thanks for the advice, I will definitely be putting things such as how I have not had any need for crisis team and have been compliant on new meds for over 3 months now and how I am actually sleeping thanks to the trazodone (when I was at work I was going about 5 hrs sleep one night then 1 or 2 hrs max the following night in a repeating pattern so no wonder I became very unwell 😖)
i just hope I can get back and back into full pay soon as I’m now having to use my savings to pay for food etc 🤯

@MarmadukeMthis Sounds awful! I've had bad experiences in the past working in the NHS when it comes to sickness. It sounds like your employer doesn't understand what bipolar is and that you aren't a risk to anyone. I find it incredibly frustrating when people act this way.
Sending lots of positive vibes your way so that you get some better luck!

Yes I think it’s really ignorant of them and I usually am pretty chill and accepting of having bipolar but their attitude to it has made me feel really shitty and quite stigmatised x