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.

[Katkins1]

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.

[fluffydressinggown]

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.

[Katkins1]

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.

[fluffydressinggown]

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.

[Katkins1]

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.

[fluffydressinggown]

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.

[temporaryusername]

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

[SilverStars]

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?

[Katkins1]

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.

[SilverStars]

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.

[Katkins1]

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.

[temporaryusername]

You did really well calling them - I really agree you need that consultant review. With all your physical symptoms too you need his input - as you say if it is somatic that is something he needs to address, ditto if he thinks it isn't. I would imagine that being self-aware, keeping in touch with them and letting them know what help you need....all that should give them confidence in you as a care-giver for dd. I think the social worker needs to get you some practical help.

I didn't know whether to chime in on the other thread as I've not been on it, but re graduation - could you defer it at all? Tell them you're unwell or cannot attend and you may be able to go through the ceremony next time they have one. Then you could decide at that future time if you still want to go.

Well done on getting out to the park - I really mean that and think it is a positive. It isn't easy to get yourself out and do things like that, I know, but you did it. Remember that looking after dd when you're physically and mentally unwell is a huge accomplishment you've made every day. You may feel bad, but you've done it every day and that's brilliant. It is ok (and not your fault) if you have times where she has to stay with other people, but at these times when you're doing it all you deserve to congratulate yourself. Many people struggle with child care without any mental or physical issues, and fair enough. I'm just saying you're actually achieving something more impressive every day.

[Katkins1]

Thank you. They were good to offer to get me a consultant that quick. It will be a case of something like having an emergency, or the nurse forgetting. He has done that before! The pain has become unbearable, and so I'm guessing my anti depressants aren't working if it's somatic pain! I'm guessing the first thing would be to screen me for post psychotic depression and/or any other symptoms of psychosis, then review my meds.

[temporaryusername]

I saw on the other thread you're not feeling well. You are actually ill, you have every right to resources, you know it is true. It would be hard for anyone to stay constantly positive when coping with pain, even someone who didn't have depression. The fact you haven't had a call back doesn't reflect on their attitude to you, don't go down the road of thinking that, it will be about something unrelated they had to deal with. It's not good but I hope you'll hear tomorrow, call back if not. I think you need to be honest with them, they will be pleased that you are self aware about your symptoms.

I'm sorry I don't have any advice, just wanted to say - hold on and take it minute by minute, hour by hour. You've every right to feel pissed off and you can share on here as much as you like.

[Katkins1]

Thank you. I feel so drained, sick, sore throat and hot and cold (just when walking). The aches are horrendous though, get them even when resting. I'm in so much pain I keep thinking you wouldn't let an animal suffer like this, never mind another human. I was waking home today and I just thought "I want to die". Not that I'd do anything about it, but I can't stand the emotional and physical pain anymore.

[dontrunwithscissors]

I've not posted on here before, but have been following. I just wanted to add something regarding physical illness--I've just come through a depressive episode, where I felt so physically drained. For a long while, I put it down to the depression, especially as I didn't have any other symptoms. I eventually saw my GP. Turned out I have a kidney and ear infection Similar things have happened in the past. I think the depression weakens my immune system. As others have said, it can't hurt to have it checked, especially thyroid function. Hope you feel better soon.

[temporaryusername]

Erythrocyte sedimentation rate and C-reactive protein (I think!) - they are both markers of inflammation. Your ESR could be raised if you're fighting an infection of some kind, or if you have swollen joints for example. I know they are both often given to people with widespread musculo-skeletal pain, they aren't really diagnostic but they can be pointers. They might run a basic rheumatology range of blood tests. It probably will just remain vaguely linked with the mental health issues and the stress your mind and body have been under. I hope it will abate soon. But no harm in getting the tests done.

I remember you mentioned glandular fever - you could ask to be tested for that too (Epstein- Barr basically), but the trouble is it is estimated that around 95% of us have been exposed and have the anti-bodies. I don't know if the results are different in the acute phase.

It is wonderful that you did that reading! Honestly, I'm so impressed, that is such a brave thing to do at any time let alone when you are feeling vulnerable and unwell. Good on you!! .

You sound like you have so much to offer and so much good in your future. I'm not underplaying how hard it is to make that real when you're not well, but there is such reason to hope. You are doing really good things right now. Looking after your dd, making yourself go out, doing a reading - I need to follow your example and try. I know it doesn't yet 'feel' better, but doing the actions anyway will make a difference, I'm sure.

[Katkins1]

Ok, I will ask. What's 'ESR ' and 'CRP' ? It seems to be all of the time now, even if I'm resting. I had huge pains in my arms when psycotic, and have good and bad days with those, and my legs too. Never had when lacked sleep- even when little one was a baby, strangely. I have migranes and a swollen throat too- usually after extertion.Today, I did a reading (am a poet/writer) at a cafe, and was feeling so unwell after. It was a journey (half hour each way and short walk) I would have done no hassle before, now my throat feels constricted. Really horrible.

[temporaryusername]

Sorry - cross posted- but also ask for iron and vitamin d to be tested.

[temporaryusername]

I agree about the blood tests, they're usually really willing to run basic bloods and ask for your ESR and CRP to be tested. Also, I wonder if some of the pain is due to disturbed sleep and lack of sleep - that can cause a sort of jetlag type muscle pain.

Hope you're ok.

[Katkins1]

I was honest with them, but as I'm meeting DD's basic needs, they aren't overly worried.

I'm seeing the CAB on Wednesday, so hopefully they can help me a little.

They said to wait a while on the setraline, and that will help, then review later, but I'm not so sure. I do think it's depression related, but I've had it 6 months now (the psychial stuff), so it's getting a bit wearing.

[SilverStars]

Sorry you really struggling. Can you be honest with social worker and cpn, so that they can tailor their sessions with you to help you. I guess if you are not telling them how bad things are they cannot: give you extra sessions, refer to osychiatrist for meds review, get extra support in place etc.

Can you ask the cpn to support you seeing CAB or whoever relevant about benefit help or debt advice? They can help refer you to food banks if helpful just to support you for a week or so.

May be worth going to gp and asking for basic blood tests - if they normal may reassure you? I think I would want some tests now as if there is something physical then it will not be helping. Sometimes it is hard to persuade dr it is not all mental health related - so could you ask firmly?

[Katkins1]

Ah, I just looked up how to apply for one. I've been really down today, cpn came and talked to her. Started asking if I'd act on suicidal thoughts etc, then she asked (because she has to) if I have any thoughts of harming myself or others. It's so horrible- I really want to talk to some-one; but my words are caught in my throat. I ache all over and can barely move some times- the CpN said that was psychosomatic, and the social worker dosent seem too worried about dd- will check on us next week when the cpn visits, too.

[SilverStars]

The bus pass is easy to sort. If you had a psychotic episode you have to declare it to DVLA and usually cannot drive for a while so thefrefore can claim a free bus pass until you would be medically declared fit to drive. Handy and means you can go out to places for much less! Lots of parks are free, with a picnic making it exciting. Libraries are great places and often have free events in the holidays and your dd can join in the crafts and events they do whilst you sit and watch.

Lots of churches run free holiday clubs, and do not have to be a member to go and they are free.

My ds is too young for such things, so the park/pooh sticks/library to get out of the house it is!!

[Katkins1]

My friends are away, that's why my dd came back. We talk on Skype though :) I don't know about family support, will ask about it perhaps we don't fall into needing,needing it because I can do the basic things. I will ask about the bus pass, buses are so expensive where I live.