Really struggling

[Katkins1]

Hello

I'm on the 'village' thread, but didn't want to bother anyone on there.
I'm really struggling, had a two month long psychotic episode, where I had home treatment and I'm now at outpatients with a CPN. I'm a lone parent- no family support, limited friends because I keep cancelling on them because I can't face going out. My DD was just away from me for 2 months, she stayed with friends. I feel so guilty and as though I'm such a bad Mum. I can't afford anything, am in lots of debt (on benefits- just graduated but can't work at the moment). I think I have depression now- need to sleep all of the time, absolutely exhausted (and I look it when I look in the mirror), think about death all of the time, and if I died no-one would find me for days except my DD. I wouldn't do anything to myself- but the thoughts are there. I'm in loads of debt and think every knock at the door is the baliffs (silly, I know as it's sort out able and most likely fairly easily), my alcholic ex wants to take me to court for access to DD (i stopped him seeing her because of his drinking). The court date is September 4th.

I look in the mirror and hate what I see, hate what I've done to my DD, hate that I can barely wake up in the mornings, that I've screwed my life up trying so hard to get my degree (I got a first, had psychosis and depression in the last 6 months of it), my house is a tip because I started redecorating before I got unwell, I've got something like grandular fever and my DD is lovely and so well behaved but has played up constantly today and worn me out.

I'm on 100mg setraline and 80mg of propanol (as needed) for anxiety, but my whole body aches (I've had this for ages, just everything aching...especially my arms and legs, I think it's to do with depression). I'm just about keeping going, but I'm not sure how much more I can take. Don't know why I'm posting, just needing company I guess.

The clinic haven't rung me back, so they obviously aren't concerned. Having a bit of a better day with the pain today, though I was up until really late last night/morning with it.we have been to the shops, sorted a few things and made a chocolate cake. I'm still feeling really really low though. Feel really ugly and fat, and the house is a complete tip. Horrible feelings to have, and I feel so powerless.

Most clinics do not ring back immediately. That is how clinics run. It is only crisis teams that react quickly, generally. It took 3 weeks for a psychiatrist to contact me ( a fairly urgent need to talk to due to being pregnant and needing to change meds) and a 16 week wait to see the same psychiatrist in person - as an emergency apt. So try not to take it personally - it is how the NHS teams work. For urgent contact your cpn or whoever is on duty that day is the best bet and after that a gp or out of hours dr or A and E if urgent.

My CpN is on holiday- I'm meant to see another this week, but they haven't booked that yet, annoyingly. They tend to phone whenever it suits them, and yes, don't understand urgency really. I spoke to the duty nurse, obviously I'm happy to wait because some one else obviously needs their services and that was me 3 weeks ago, but I really can't stand the suffering and the depressive thoughts much longer. They are so intrusive.

I was told than a full time cpn can have about 40 patients on their books at a time so in reality the actual cpn's ( not the dr's) can only ring or speak to you when not driving to patients houses, the hospitals or clinics or when not seeing patients. Which is why they use the duty worker system in many places so can speak to someone medical with access to your notes straight away. Good cpn arranged cover for absence - sounds a good cpn ( mine used to take 3 weeks off and one just waited or used duty nurse!) No idea why dr's take so long to call back, but understand why the cpn's cannot always return calls as they travel so much.

Have you done the paper work for a care plan yet? That can include numbers of who to call and when, a useful document to do together and to keep a copy.

Hope you can get a free bus pass sorted. I think they should have all forms but if not why not look up/contact your council and find out what paperwork you need and give it to them to fill in if easy to do. I know the system where I live but not for every region sadly so they prob vary. Where I am each CMHT had an Occupational Therapist or several attached and they end up doing much of the practical stuff - getting people mobile, helping with issues in the home, with benefits, with practical support and also re: employment. The OT's can be someone's care co-ordinator instead of a nurse. If your cpn not helping with practical stuff may be worth asking if there is an OT in the team who can help?

Maybe things are slow due to August/holidays, and will quicken up a bit in a couple of weeks..? We can but hope.

I am sorry you are really struggling Katkins :( You are doing so well with all that you have been through this year.

Do you think you would be willing to re-try anti-psychotics, I remember you saying you hated the side effects which I know are horrid but I wonder if it might be worth giving them a go. They have made such a huge huge difference to me, significantly reduced my psychotic thinking and also helped my mood. I built up my dose very slowly and that avoided the side effects.

Sorry to interfere, I just had a thought about it.

I have been trying to get hold of my cpn to suggest it, fluffy. I'm more in pain and demotivated than anything. It's so exhausting just to do anything. I phoned the clinic, and they said they will chase it up. I don't mind taking anti psychotics; now I'm more stable , I'll probbably respond to them better and take them properly.

Today, my throat hurts and my elbows hurt...not a bad day pain wise, compared to a couple of days ago, but the pain really comes back if I do anything a bit stressful or tiring. Wev'e managed to get out and go to the park and the co op,so I'll be doing tea in a bit. Shooting pains in my leg. I'm considering taking a zoplicone just to get some proper sleep tonight.

Oh yes you should take the zoplicone if it helps, I am also taking sleeping tablets at the moment and being less tired makes everything feel better.

I am sorry you are in so much pain, that sounds horrible.

Re the anti-psychotics, I have had success, risperidone and now aripriprazole, I was also on a low dose of quetiapine for a bit but the dose was not high enough to stop my psychotic thinking although it did help.

With the risperidone when I initally took it (4mg) I felt like a zombie, I just couldn't function but then I stopped it and started it again at 0.5mg and built up on 0.5s to 4mg and had no sedation side effects. The aripriprazole I now take doesn't make me sleepy at all - quite the opposite I am struggling to sleep!!

Sorry for waffling on. I hope you can start to feel better soon.

I was on quetiapine, but I was so poorly I don't thnk it made a difference. I was on 75mg; it sedated me basically. I rang the clinic again and they are sending my usual cpn next week, if there's no change, then I will discuss it with her. They did say it's a long process, just not nice as I have DD and t's school holidays.

I was on 50mg of quetiapine and for me, it took the edge of my psychosis but it wasn't enough to get me fully well, just enough to get me well enough to be discharged from hospital, whereas the 4mg of risperidone stopped it and helped me to re-start my life. It did mess up my periods though.

I hope your CPN gets back to you soon and you can maybe get started on something asap.

Ah that's good that it stopped things a bit for you, fluffy. I think I have 'negative' and 'positive' symptoms; I've been telling them for a while I think it's schritophrenia- my Mum had it- but they are very reluctant to listen, which is frustrating.