Feeling that I'm the only one

[JosephineFay]

Hello, this morning I'm lying in bed. I have worked at 1.30pm and I can't get up. I went to bed at approx 12 midnight after taking my meds at 10.30pm. I woke up 3 times during the night and woke up about 8am after being in and out of sleep all night.

I feel wretched as if my life was over. I'm in bed because the meds I'm on for Bipolar Haloperidol is destroying my life. I don't feel good on this and a private Integrative Psychiatrist has been tapering me off this drug gradually since Oct 2023. I was on 4mg and under the NHS then who were injecting me every month. The NHS psychiatrist kept threatening me that she'd put me on a community treatment order which means forced meds if I didn't comply. She kept telling me I was on a tiny dose of drug. However a GP I saw said actually it was massive.

My private psychiatrist thinks that I do not have Bipolar but trauma which has resulted in episodes of psychosis. In the morning my body is so stiff that I struggle to get out of bed.

If you've had an epidural before you'll know the type of feeling. I've had 7 episodes of being in hospital and each time my husband locks me out of the house as he feels that he can't cope with me reporting him to the police and social services for things I am imagine he's doing.

He has had to sell up our home on 7 occasions when I've been ill over the years. We buy a place when I'm well then I get ill he can't afford the mortgage alone and we have to sell.

I've also lost lots of friends who have all blocked me after I've been ill. I have never harmed them but have made allegations about my husband. Many of my friends had moved away because of London house prices and noted when I tried to keep in touch with them one by one they said they didn't want to keep in touch.

Worse was that they didn't want me to have their new addresses. My son then lost many childhood friends.

My illness has been complex and has coincided with the housing crisis. When my husband has locked me out the local authority refused to house me because my name has either been on the tenancy agreement or has been on the mortgage. It's been a no man's land which has left me street homeless and away from my son for as much as 2 years. I did not see his transition from boy to young man.

He ended up going to 4 senior schools and 3 colleges because of bullying and my illness I would turn up at his schools snd follow him around.

He is now 21 and has no friends because of the constant moving. He has tried making friends online but has been again badly bullied by those he's met. Or they don't want to meet in real life.

One of my few friends who had ppp at the same time as me roughly when we had our first episodes had a very loving family. Together her mum, step mum and dad who were all retired took in her daughter whose now 20 every time her mum had an episode. Her daughter is now at LSE University and my son education never got past gcse.

Our kids used to play when they were younger but I noticed a reluctance of friend to encourage them to be friends as they grew up. My friend had a recent relapse and told me during it that she had told her daughter not to be friends with my son because he's very troubled . My son has depression which she knows. I thought she'd be more understanding but she has let me down terribly.

[Rachel_at_APP Partner APP]

Hello JosephineFay,

I know all too well that having a really bad night’s sleep does not help us in feeling like ourselves - it can all too easily be hugely unsettling when we’re recovering - so I’m sorry that you’ve woken up feeling this way. But I can hear that this isn’t just sleep. I can also feel the weight of all the challenges you and your family have been through, I am so sorry to hear that this has been your experience. I wish there were more ways I could help to help carry it all with you.

I don’t know whether you have managed to phone your employer to chat with them about work today? I hope they are understanding. And hopefully you can have some time today, and try tomorrow. Sometimes, I know for me, a whole day just felt too much. Sometimes five minute blocks were all I could manage. Tiny micro tasks.

Uncovering my head from the duvet. Rest.

Sitting up in bed, rather than lying. Rest.

Getting some water, to drink in bed. Rest.

Brushing my teeth. Rest.

Maybe sitting in a room that’s not your bedroom instead.

Looking out of the window, to get some light. I know even more tough in the winter!

Taking things step by step. You don’t have to wake up bouncing out of bed. I do hear how much you’ve been through. It sounds so sad and awful for you just now. It can get better with the support. Do you feel you can phone your health professionals? I know you’ve described conflicting opinions in your message, but there are people to support you, who will want to help.

I am so sorry that you and your son have seen friends come and go. Do not hold any responsibility for their actions or decisions. You are not responsible. I like to think of our lives as chapters in books. Some friends will be there for the whole novel while others might come and go. Some never returning in future chapters. Its important to remember that that is their choice, and says more about their character than it does yours. They are the ones who should be sad, and perhaps one day they might reflect and think about how they themselves would like to be treated if they were poorly. Just know, that you live by the mantra do as you would be done by. Something I know my Mum has always instilled in me. It helps. Your illness is temporary, like a chapter in a book.

Know that we’re all here to listen and offer support wherever we can. Just sorry today you’ve woken feeling heavy and numb. I do understand. Sending lots of positive wishes your way JosephineFay, try to talk kindly to yourself. None of this is your fault. Write anytime. We’re all here.

Rachel x

[Lilybeth Volunteer]

Hello Josephine Fay

You are not the only one …. some days we feel like hibernating especially when our minds reflect on all the ups and downs since PP hit.

I hope your GP has an ongoing care plan for you as they do have a duty of care. You have been through so much and deserve proper attention. You must be worn out trying to work and feeling helpless at times.

I think unfounded guilt can haunt us sometimes if we aren’t feeling well. I had PP twice with severe depression. Looking back I regret my actions in those years, relapsing and being a strain on my late husband. The thing to remember is that it wasn’t our fault and we had no choice when PP took control.

I hold onto guilt that when my first son was born I missed his first Christmas. Then recently reading my medical notes (I was very ill so quickly when they were born) I read that I relapsed and missed my second son’s Christmas! This was so many years ago and my sons have told me not to worry about it but these thoughts pop in and out don’t they?

I also had a friend I used to meet for coffee and chat. She had two sons too. I felt our friendship was good until one day we met. I was feeling confident about speaking about my psychosis as I had received so much support from the APP team. We used to set a date for our next meet-up but she told me not to call her, she would call me … to this day she never has! So I understand how some friends come and go.

I’m sorry your son has depression but it’s not your fault. Just loving him and being there is all you can do.

I saw a verse recently, the end of which is “A day is not a lifetime …. A rest is not defeat … Don’t think of it as failure …. Just a quiet, kind retreat.”

Take care and know we are all here and understand 🌻 Sending hugs of comfort.

[JosephineFay in reply to Lilybeth]

Hello, I wanted you to know that I read and appreciated your kind and lovely message. My meds make me exhausted so sorry that my message is so short. I am so moved by your experiences. I had no idea how frightening many people find psychosis. Even the friend that I mentioned who had ppp and has had about 6 relapses since is afraid when I try to discuss our shared experience. Despite experiencing this herself she has shown a real reluctance when I've wanted to tell her how I feel although I'm very attentive when she wants to talk. I find the lives of me, my husband and son so lonely and isolated. So getting your message means a great great deal. Thank you for your kindness. Xxx

[Lilybeth Volunteer in reply to JosephineFay]

Hello JosephineFay

Thank you so much for writing, which is very kind as you explained how exhausted your meds make you feel. I’m sorry your friend is reluctant to discuss your shared experiences. Do you think if you showed the info about PP in the link app-network.org/what-is-pp/... it might be a starting point? Perhaps she feels ashamed as I did after having psychosis twice.? Sometimes all we need is a good listener and as a good friend, that’s what you have been to her. It’s a shame she can’t offer you that same space to talk openly about how you feel.

I’m so sorry you find your life and that of your husband and son so lonely and isolated. When you feel a little better and the weather improves, do you think you might go for walks as a family? I find walking is a good outlet as some days the four walls close in. I don’t know whether you have heard about the APP cafe groups at app-network.org/get-help/pe... where mums at different stages in their recoveries, even years later like me, meet and chat over a tea or coffee. You might even persuade your friend to go along with you if you feel up to it? All very friendly and welcoming.

My neighbour’s son who is in his 20’s has enrolled in the Duke of Edinburgh Award scheme and is enjoying the company. I wonder if this would suit your son to get involved and not feel so isolated. It is a worry for you as their happiness is everything isn’t it?

I’m sorry I’ve rambled here. I hope you can ask your GP about your lack of sleep as it’s very important to find a way forward. Take good care of yourself … we are always here to listen. 🌻

[Lilybeth Volunteer in reply to JosephineFay]

Oops … sorry JosehineFay … the link to APP Guides is app-network.org/what-is-pp/... 🌻

[Rachel_at_APP Partner APP]

Morning JosephineFay,

Just checking in to see how you’re doing this morning. Hope you managed to get a better nights sleep?

Rachel x

[JosephineFay in reply to Rachel_at_APP]

Hello there Rachel, sorry its taken me a day or so to write back. The meds effect me severely and sometimes I can barely function eg can write, or think or lift my very heavy limbs. My sleep continues to be awful and I feel exhausted. I feel that psychiatry has seriously harmed me and I feel as though I'll never recover.

I wanted to say though that your message meant the world to me although I'm only now able to write you a short message. I cherish every word of your reply.

[Rachel_at_APP Partner APP in reply to JosephineFay]

Hello JosephineFay, absolutely no need to apologise, I know that sometimes exactly as you describe it’ll feel too much. But know we are here, and that we’re thinking of you.

I’m glad that the few words brought some comfort even in just a tiny way. Keep walking those tiny steps. They add up, promise. There is always hope in recovery from PP. Sometimes our minds tell us there isn’t any hope. But it is always there. Lean on those around you, and write anytime. Rachel x

[Nanabluebell Volunteer]

Dear JosephineFay, try to relax, breath in through your nose for four out through your nose for four or six, create kind of rythm. Relax think of each part of your body in turn relax, not always easy I know but try just for a little while. Tomorrow is another day. I saw some snowdrops today, next there will be celendines, then primroses, wood anaenomies and bluebells. Joy in the smallest things, Spring just around the corner a hopeful time of year. One day at a time, one foot in front of the other. Not minimising in any way how very sad you feel, just a thought that just maybe hopefully can help. You can be well again, be kind to yourself. Hold on with hope.

Warm best wishes

Judith

[JosephineFay in reply to Nanabluebell]

Dear Judith, thank you so much for your lovely and heart warming message. Will try your suggestions. Much love.

[Jenny_at_APP Partner]

Hello JospehineFay,

I just wanted to send some warm thoughts your way. I'm sorry things were feeling so tough the other morning. I hope there have been some glimmers of light creeping in since then and you have managed to rest.

Keep going, just one step at a time always. The days won't always feel so dark. I'm thinking of you and we're always here to listen.

Look after yourself and be kind to yourself always.

Sending much love,

Jenny x

[JosephineFay]

Dear Jenny, thank you for your kind thoughts. I'm having a tough time really with the side effects of the meds. I see a private psychiatrist as the NHS have told me that I'm too well to have the cmht. I'm trying to get through to my psychiatrist but don't know if she's away at the moment. She wrote a letter for me in September to my GP surgery to instruct them that she was weaning me off the Haloperidol and that I should continue to be given the z drug Zopiclone, phenergan and Melatonin for sleep. The GP is concerned and is refusing to prescribe me the sleep meds as they are so many and Zopiclone apparently leads to dependency. My psychiatrist feels that I should remain on the meds until the Haloperidol is stopped and my sleep shows signs of improving. So the last few days have been very hard. At the moment my husband and son are also suffering from depression we feel. So I don't feel I have anyone I can lean on.. I'm having to be strong for all of us.Thank you for checking up on me. I do feel very alone.

[Jenny_at_APP Partner in reply to JosephineFay]

I'm sorry you're having such a tough time and feeling so alone. It sounds difficult having your psychiatrist and GP advising different things. It must be so hard when sleep is affected and working out how best to manage things. I do hope you see some improvement in your sleep soon, keep trying to contact your psychiatrist - does she have a secretary?

I'm sorry to hear that your husband and son seem to be suffering with depression too, it's a lot trying to be strong for others when feeling so tired and low yourself.

It is a cold but bright morning here, I hope there is some sunshine with you. The days are slowly slowly getting lighter.

Keep reaching out for support and write here any time. I'm thinking of you.

Sending love and light,

Jenny xx

[Lilybeth Volunteer]

Hello JosephineFay

Just wondering how you are and whether you managed to speak to your psychiatrist about the medication. I hope by now a way forward has been agreed with your GP and psychiatrist to improve your sleep. It must be very tiring trying to support your husband and son but I hope perhaps there might be family therapy offered? Take care 🌻

[JosephineFay]

Dear LillyBeth, thank you so much for your message. To date I've only just managed to send a brief reply to Ellie who kindly emailed me a few weeks ago and I'm due to reply to Maria also. My psychiatrist and gp are working together but my psychiatrist says that we need to get me off the Haloperidol and sleep meds as soon as possible with the Haloperidol being the priority. The insomnia and sedation isn't improving but I have gone done from 4mg to 2.3mg it's taken me a year. I'm currently on zopiclone, melatonin and Promethazine for sleep. I get about 4 hours of sleep a night. The Haloperidol has done something to my brain receptors that effects my sleep. It is absolutely horrendous and I feel severely disabled by the side effects. I manage to hold down a 25 hours a week job and manage to cook dinner for the family but I can't clean the house or exercise or sometimes write I get so fatigued. Psychiatrist has advised that I increase the melatonin to 6mg , zopiclone reduced from 7.5 to 3.75 and Promethazine to remain at 50mg. I literally have to cope with the side effects and withdrawal until the Haloperidol has stopped and even then could take years before my brain has recovered. Thanks so much for asking.

[Lilybeth Volunteer]

Dear JosephineFay

Thank you so very much for replying especially as writing is draining for you at times. Please don’t worry about how brief your reply was to Ellie and replying to Maria as you are so fatigued. I think we all just want you to feel you’re not alone.

It must be some relief that your psychiatrist and gp are now on the same page although you have struggled for a year already with medication. I’m so sorry to read that you only get about 4 hours of sleep each night and the side effects of medication are so overwhelming. You are doing really well to hold everything together, coping with a job and managing to care at home for the love of your family. It’s not easy for you so please hold on to hope and rest when you can. Sending a hug of comfort ….🌻

[JosephineFay]

Hello Lilybeth, sorry my message is short but thank you so much for keeping in touch. Your message is appreciated and cherished.

[Lilybeth Volunteer]

Hello JosephineFay

Sorry I didn’t reply earlier. It’s always a privilege to hear from you as I realise how writing zaps your energy. I hope you have been able to have a restful day and your care team continue to work together to support you. Take care 🌻

[JosephineFay in reply to Lilybeth]

Dear Lilybeth, thank you for writing back to me. My son bought me the most lovely card in the world today. I have a check up with the private psychiatrist tomorrow and have a diagnostic assessment in May with a nhs psychiatrist. Cmht clinical psychology team have me on their waiting list for CBT. I hope you had a really lovely mothering Sunday too. Thanks do much for keeping in touch. Jo x

[Lilybeth Volunteer]

Dear JosephineFay, I hope your check up went well and the psychiatrist listened to how you truly felt. Our children have a way of lifting our spirits don’t they, bless them all. Thanks for writing 🌻