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).

Went to see mum in hospital, and she's still confused as ever. I think they're going to give her a diagnosis of vascular dementia. All the symptoms fit.

Dp went over the renovation project today and text me when I got home from the hospital asking why I haven't popped in? The reality is I don't have the bandwidth to be thinking about that too. I'm still trying to sort out everything from dad passing, now mum, works full on, I'm away every week for the next 4 weeks, my bedroom looks liken it's been ransacked, and my house could do with a bloody good clean.

Need to phone the psychiatrist's secretary tomorrow to find out what happened when I asked for my review to be in the phone and they never got back to me.

It’s so full on for you. I hope you’re managing to be as kind to yourself as you can be.

i have the same problem with our CMHT. You call because there is no other way to connect them, leave a message and then tumbleweed.

it has been a bit better for me since I’ve been allocated a care coordinator. In someways that makes me feel more anxious as I know it won’t last forever.

Do any of you worry about having an episode when abroad? I’m in Europe a week after starting quetiapine on top of lithium and although I do now get loads of lovely sleep and I do feel my mood lifting, my anxiety is through the roof. It’s very hard to enjoy this holiday.

@TopsyTurvyDaysYes I always get anxious when I'm away. I'm afraid I'm going to have a major episode and get carted off. Then I try to rationalise it. How many times have I been cartref off? Never. How many episodes have I had when I've been away? None. Do I get a build up to an episode? Yes. Would I be back home in time? Yes? Is it just my anxiety talking? Yes.

I think part of my anxiety stems around worrying about getting there, and missing the flight because we're stuck in traffic. worrying about going through security (I always panic here and 3 times I've heard my name over the tannoy because I've left something behind!). Then worrying about driving on the oposite side of the road ((why I love Cyprus), the language barrier, getting sun burnt, losing my passport and I could go on. In essence I'm a worrier by nature. Add in anxiety snd bipolar and it's the perfect storm.

Yes I feel much the same. A perfect storm.

I have been carted off and sectioned once - first episode of mania when I was diagnosed in my 40s. But I wasn’t medicated as undiagnosed and I did have warning for days - which I kept flagging but I just couldn’t get my DH and the GP to recognise what was going on.

Thanks for your reply. I wouldn’t wish this on anyone but it is nice to feel less alone with it all. Now the queriapine is kicking in my DH and the kids seem to have forgotten I’m still not well even if a little better. But I also don’t want to impact them all the time. So it’s a lonely road.

When ever I'm up or down dp will ask 'are you better today?' As if the mood suddenly switches off when I'm sleeping and because I've taken some tablets. Those are the days I really want to scream at him. If only things were that simple.

Take one day at a time. Remember what Stephen Fry said-
Just as real weather changes, storms, clouds, and heavy rain eventually pass, and the sun eventually comes out. So will your mood. It's just riding the storm you have to get through.

Do you know, I'm reading and thinking, nearly all of us seem to find anxiety a really severe symptom. But it's not even in the diagnosis. Mania/hypomania and depression. And the medications all focus on the ups and downs. The psychiatrists are more interested in the ups and downs. But the thing that never goes away for me is the anxiety and it doesn't sound like I'm the only one. I feel like we're all being let down on the anxiety front. And on the crisis team, I have a male nurse who likes to talk to me like I'm a toddler and tells me I need to stop ruminating. Well mate, if I could do that, I wouldn't be on the phone at all. I've done CBT three times but it makes not a jot of difference. If anybody has had anything useful on the anxiety side of things, please do let me know.

@Ramblingawayi agree. I think i said further back in this thread- the bipolar I can deal with, it's the anxiety that I can't cope with. I'm so jealous of people who don't have anxiety. To sleep all night then to wake up every morning with out the pit in your stomach, palpatations, a tight chest, and every negative thought running around your head, it must be bliss.

I totally agree. Anxiety is so hard. It impacts everything day and night.

Same, depressive episodes I find are quite self limiting in that whilst I might be feeling awful the numbing of my senses means I have less awareness of it and don't have the energy to think about it. When there is depression and anxiety or hypomania and anxiety it makes everything very tricky as my brain has this nervous energy that is so difficult and destructive

For me I think the anxiety is the worst part of it. It doesn’t matter how much I try to outwork, literally outrun it, it’s still there in the background.

I put in a complaint to my GP today. Not for the first time they’ve passed responsibility onto me to manage my care and said I need to contact and coordinate secondary services myself - despite me being the vulnerable patient with a variable capacity to do this!

This time it was very clear cut though. They got a letter from renal asking them to prescribe two different medications related to kidneys and thyroid (mild issues at the moment but obviously a concern when on lithium). They didn’t action this and I found out about it checking my NHS record. So without drawing attention to their significant error I asked them to look into it and mentioned I was a little concerned about sodium bicarbonate and its impact on lithium levels as I’m much more well on 0.8 and a drop could be a concern.

They effectively text a reply that told me to sort it myself and use PALS if I needed help. So with the aid of AI removing my anger I sent in a complaint asking what action they’d taken when they received the letter. Had they informed renal they’d taken the decision not to action the prescription? And a few other little bits about clarifying how a vulnerable patient can expect their care to be supported when they’re unable to project manage it themselves.
I also said my husband had taken to bringing his medicine “bible” home from work (he’s in a medical adjacent field) and is routinely spending evenings checking for answers on interactions and risks - I said I appreciated his support but wished the essential care to come from medical services so he can return to just being my husband.

I’ve never made any official complaint in my life. I’m so angry but also feeling very vulnerable!

That's so bad @TopsyTurvyDaysyou done the right thing. It is how hard managing this condition and staying well, when you are well!

It feels discriminatory at this point. This isn’t the first time but it’s the first time that’s so clear cut and I’ve been well enough to know it isn’t me (yay for the quetiapine working). I can’t believe there are 100s of other parents with long term health issues having to make sure their medication interactions are optimal. Renal wrote to them not me - it’s clearly their responsibility. They shy away from my mental health and its medications in a way they don’t with physical ailments that require secondary care. It can’t be my job to tell CMHT that renal have sent a letter with recommended prescriptions to my GP.

@TopsyTurvyDays that is so shit. I'm so angry for you. Are there any other GP practices near you that it would be worth switching to? My mum just changed GP after years of poor treatment.

It's not just you! Although they do seem to be particularly bad!

My mum has severe stomach issues - severe GERD, larger hernia a narrow and damaged oesophagus. As a result of this she struggles with swallowing food and drinks. She also has osteoporosis and was prescribed so tablets that are very very harmful to the oesophagus. They are a once a week medication because of how harmful they are when swallowed you have to have them on a completely empty stomach having had no more than a sip of water and then lie down for half an hour. If it get stuck in the oesophagus it can burn a hole into it.

She told me she was prescribed them and searched them and saw this black box warning for anyone that has swallowing issues. I told her categorically not to take them and to speak to the GP. She had 3 GP tell her she had to "try and see if they get stuck" including one GP who had to put her on the 2 weeks pathway (again) for urgent endoscope to rule out oesophageal cancer after she was back at the point of needing to make herself sick frequently due to food getting stuck. She was able to contact her consultant who wrote to the GP to say she can't take any of the oral bisphonates and you need to refer her to secondary services for the injections. This all took more than 6 months, during which time she had no treatment for the osteoporosis in her spine and considering on patch is in an already fractured vertebrae she really needed treatment.

Another time her stomach consultant wrote to her GP saying, I know X struggles with the side effects of these meds but currently the risks of not being on medication is causing a bigger negative impact on her health and life style than the side effects of taking them we have discussed restarting X as the medication that was the most tolerated previously. Please can you prescribe it.
She got a phone call from the GPs pharmacist, luckily I was with her at the time saying, I'm not sure you should take it you had to stop it last time due to side effects. I was able to explain that yes we know this but right now we are out of options and the plan is to see if we can stabilise or reverse the damage before the side effects get too bad and review from there.

I've got similar myself with my fatigue. I'm 14-15 months down the line and it's hard to keep finding the energy to fight. I've had endless blood tests. I need to message the surgery asking if they have sent them to endocrinology as they requested them. Not all of the tests endocrinology have asked for have been run as apparently the lab can overrule the consultant and deny access to bloods. I also need them to send over my latest ECG to my psychiatrist to check for prolonged qt. Both the bloods and the ECG I had to contact the GP surgery to arrange once I received copies of the letters. It was a relatively low barrier as they had an online form but their website is currently down. I'm done in and don't have the energy to phone so I'll wander in after the school run on Monday.

The short story of the above post is not just you and they should do better

My psychiatrist also had to ask then 4 if not 5 times what they were doing to help my physical health before they replied to her.

I do have a good GP at the surgery but everyone wants her and have now become her friend and not sure where the line is

@TopsyTurvyDays you can also access the BNF online without signing it....if that's the bible your husband uses - I check everything against the BNF!
I worked in medicinal chemistry in my last job

I guess that’s part of the thing for me, before I got diagnosed 3 years ago I would have said they’re the best practice I’ve ever had. I know I’m likely overreacting about the discrimination but I feel so sad and vulnerable.

It’s a very rural practice that’s just been bought by a practice in town, so I’ll wait to see what the partners say in response to my complaint as they’ve actually been supportive since they took over.

but you’re right it this doesn’t resolve the. A change to a town practice might be something to think about.

That does so truly awful for you both.

My Nana has an obstructed oesophagus caused by her hiatus hernia. It was awful to witness and it was listed on her death certificate as a contributing factor.

Yes. It’s clear it’s a wider issue. So hard to manage.

im glad you have a good GP - good dust.

Thanks - had a look online and found it.

My key worker is back from leave and called yesterday and is already banging on about behavioural activation - she seems to be obsessed with it. I tried explaining that I don’t see the point in showering or cleaning because I’ve tried it and it doesn’t make me feel any better. I’m seeing her next week and I know it will be more of the same.

On a more positive note my appointment with psychological services came through for Nov 18 so hopefully that will help. I’m a bit sceptical though because it’s CBT and I’ve done that before without it really helping.

Can you tell I’m in a mood today?

Sorry to hear that some people are struggling at the moment. I haven’t checked in in a while. Had a slight ‘blip’ a few months ago when I became suddenly quite paranoid and had thoughts I’ve had during past episodes about surveillance etc. After a few days off work things went back to normal (I was back to thinking clearly the next day but still felt a bit shaky) so didn’t seem to be a warning sign of anything more serious thankfully.

Otherwise I’m ok apart from fatigue. Had some blood tests done and I’m low in both iron and Vitamin D so hopefully some supplements will help.

Mums on end of life care. All life sustaining measures have been stopped.

I'm so sorry @mindyourhead78