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Struggling and let down.

Posted , 3 users are following.

BellaLuna
BellaLuna

Well it's been 4 months plus since my breakdown, I was never great anyway but this has been hell.

My GP suspects perimenopause but a blood test would be unreliable at this point due to fluctuating hormones and she wrote to the mental health team asking for intense psycotherapy for me.

I struggle to leave the house, I had been making some progress with this but it was slow, very slow and I have now relapsed and am anxious and tearful non stop.

The consultant who I have never even met wrote back to my GP and  said no psycotherapy unless I drastically reduce my medication, I have been on it for 17 years now and it is Diazepam so even a slow withdrawal will be hard.

GP said she does not feel it's a good idea in my current state, I agree, I had thought about it for a while but concluded that at this point in my life I simply cannot cope with a reduction, she said I do not have to reduce but it has stressed me even more that this idiot consultant who has never met me or assessed me has said this and will not go ahead with psychotherapy now.

I have an intense phobia of new medications which is fine because they don't want me on any anyway!

The GP has said only the consultant can refer for the intense psycotherapy that I need but I don't want to go anywhere near that man, besides I can't get to the clinic due to my agoraphobia and he is now refusing a home visit, honestly his input has made things worse and I want nothing more to do with him.

I rang my CPN and she said she will try to get me psycotherapy but doesn't think it can happen without the consultant referring me.

I am so upset about it all and not only that the past few days have been hell, even before I had this news I was getting really bad again, my slow improvements have dissapeared and I am terrified I am going to become housebound.

I hate Spring, I am struggling to adjust with brighter days and lighter clothing, I am struggling because warm weather means getting outside and I find that hard enough so now I feel more pressured than ever and I have kids so it's vital that I try for them.

A few days ago I thought I could try, now I feel like I can't again and it's awful, I woke up this morning feeling I couldn't even go out, I did go with my husband but felt so scared and vulnerable and now I fear I wont be able to do it again.

I have no idea how to get through tonight, I know I will panic all night again and struggle in the morning, I honestly thought I was seeing that very slow progress but now I am relapsing and I don't know what to do sad

2 likes, 24 replies

24 Replies

  • lisalisa67
    lisalisa67 BellaLuna

    Posted

    Hang in there love. I so wish you could recieve the support you so deserve and are in need of. Home visits would have and should be done for you. Someone in the system is just not paying attention. Even if they refuse home visits, which is cruel at least they should have a way to do some therapy with you online. I hope someone comes to their senses and helps you. With the right support you would feel so much better. You will be in my prayers. Please hang in there and stay strong. Keep imagining your life as it could be as much as you can, maybe it will give you some kind of positive inforcement to give you the courage and stregnth you need to begin recovery. Im so sorry it really seems  the sytem is failing you. Shame on them. Is there anyone higher up in the system maybe your husband can speak with? Maybe your gp can help with all this.
  • Mimi9876
    Mimi9876 BellaLuna

    Posted

    Have you tried to contact PALS (Patient Advisory Liaison Services) to complain? http://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68 I've not tried it myself but understand they are who to contact in times when the NHS is not working as it should be.

    Hang in there, nothing lasts forever including anxiety.

    If you can read then look up "books on prescription"

    http://reading-well.org.uk too this is an NHS booklist recommended for all kinds of mental healthProblems. Make the most of the time you are in your home, Read as many of them as you can & invest in yourself. Youare worth it.

  • BellaLuna
    BellaLuna

    Posted

    Thank you everyone, you are all so kind and i appreciate the replies and helpful information.

    The consultant thing has terrified me, to have someone who has never met me try to make huge changes that i can't cope with felt dreadful, i am just relieved my gp didn't agree with him, honestly i don't want to see him now, the mental health team have done nothing but break promises to me and make me worse.

    My husband complained last year because a social worker assessed me and said i was not ill because people who are really ill don't wear lipstick, they talk utter sh!t they really do.

    Anyway enough of them, i need to look after myself and fight and i am trying but it gets so frustrating when you put the effort in and still feel awful.

    Yesterday we went out, not that far but to a place i had not been to since my breakdown 4 month ago, i was terrified but enjoyed being out with my hubby and the kids, i spent 4 hours out in the sunshine, sat and had a picnic and it was nice, i didn't think i could do it but i did.

    What hurt me was that i came home and had anxiety symptoms very badly for the rest of the day, woke up feeling terrified to go out the door again too.

    We did go out, did a bit of food shopping and went to a cafe, to the outside world i looked fine, smiling, chatting to shop staff, sat with my drink at the cafe, the kids had a nice bit of cake and it all seemed so normal but inside i felt dreadful.

    Anxiety symptoms were there but also this awful heavy fog that felt it was suffocating me, each step took up all the energy i felt i had and i just had an overwhelming feeling of not being able to cope.

    My brain is refusing to believe that these things are good or positive, it is refusing to believe that i can ever go out again and i have had anxiety and tearfulness again all afternoon.

    I am dreading tonight, dreading going through this hell again tomorrow and scared stiff that i wont get out, the kids are on school hols for 2 weeks and there are a few things local i want to do with them, i just hope this wretched illness lets me.

    I know i have to fight but it's just so hard xx

    • lisalisa67
      lisalisa67 BellaLuna

      Posted

      So proud of you!! You are doing fantastic. Who cares about the set backs, ignore the setbacks and be so very proud you got out a bit and enjoyed it. Look its going to take a lot of time to retrain your brain. Every outing you go on and even enjoy is one step closer. And yes sometimes the brain is a huge bully and comforts itself in old patterns. Thats why is so important to keep going out and doing stuff. Picture an ugly deranged little monster who is bullying you and when you go out and he is there saying all negative thoughts to you maybe that easier cause then you can i am having fun and i am going to go out and enjoy it. Baby steps and one day the ugly deranged little monster will surrender and be happy too. And when you get back maybe that monster will try and deter you from it all again but you will reclaim your life. Anxiety is a bully bella.i know its our own negative thinking but its self bullying with no rationale behind. So keep it up and be proud and love yourself. No need to have anticipatory anxiety, you dont have to pre plan anything. No pressure.Wait For the kids to get home and do a little something, dont let that ugly bully monster  boss you around anymore. You are doing great.
    • BellaLuna
      BellaLuna lisalisa67

      Posted

      Thank you so much, I am sorry it has taken me so long to reply to you, just been trying to fight as hard as possible and i have been keeping your words in my mind as i do things, i know it will take time but the stress of this is awful.

      I have done a few things this week, they were very difficult but i did them, for some reason my fear of leaving the house hits hardest in the late afternoon, yesterday i was so upset by it that my husband drove me to the supermarket to prove i could do it.

      I try not to plan things because i know it makes things hard but in the next week we are supposed to be going bowling, it has to be planned because you must book in advance since it's always so busy.

      I am freaking out because i'm terrified i can't do it, it is at my worst time of day and i can't change that because my eldest work all day so we have to go at that time.

      I have been 3 times since my breakdown, the first was awful, second a bit better, third was rough but I made it there and got through it, now i really want to go this time but the agoraphobia is telling me i can't.

      I am just praying i can prove it wrong, that i can go and manage the symptoms that i know i will have too, it's just so hard sad

    • Guest
      Guest BellaLuna

      Posted

      At least you're making the effort, that's a huge step forward.

      Is your husband supportive?

    • BellaLuna
      BellaLuna Guest

      Posted

      Thank you, yes he is very supportive although i think he doesn't know what to say at times, i really need to prepare for this with some coping strategies and coping statements somehow, i'm telling myself 'it's just a feeling, just a wall of fear, push through it' and things like that but it's very overwhelming.
    • Guest
      Guest BellaLuna

      Posted

      Do you have a therapist or a counsellor or someone who is trained to help?
    • lisalisa67
      lisalisa67 BellaLuna

      Posted

      Slowly but steady each day you are getting stronger. Bowling is great fun and such a nice thing to domwith family. Its quick too. Try so very hard not to make anymore rules, they caged you. Late afternoon can be a beautiful time to get out of the house. Power of the spoken word okay 😊. You keep taking steps forward and when the anxiety tries to bully you and hold back laugh at it and walk right out the door. You can do it! You have prooved it already to yourself. You are in the process of retraining your brain and uncagung yourself so be patient with yourself and please be proud of yourself. You tell yourself the anxiety rules stink adn have done nothing good for you but make your workd tiny so they are useless and tricked you. Please share yojr successes they are wonderful to note. You got this! Take the fear and show it you got this!
    • BellaLuna
      BellaLuna lisalisa67

      Posted

      Thank you so much, i will try so hard to go and not allow the anxiety to stop me, i know it will be there trying to stop me and making everything look so scary but i will remember what you have told me here and try to laugh at it when it holds me back, i want to go so much and i know the only way to have a better future is to go through this now and do things even when i feel like i can't so i will try to push forward even if i am feeling like a wreck.
    • BellaLuna
      BellaLuna Guest

      Posted

      I have a care co-ordinator but she isn't very helpful at all, my gp wrote to the mental health service asking them to give me psychotherapy, a consultant who has never met me wrote back and refused it saying i need to come off diazepam first, i have been on it for 17 years and due to the last 5 months being hell i don't feel now is the right time, my gp doesn't either.

      So the mental health services wont help me simply because both me and my gp disagree on a course of action set out by someone who has never even assesssed me, that is why i have to try so hard to help myself.

    • Guest
      Guest BellaLuna

      Posted

      They're denying you mental health services beause they require you to get off the medication?

      What country are you in?

    • BellaLuna
      BellaLuna Guest

      Posted

      I am in the UK and yes the consultant has said that unless i drastically reduce my dose then i cannot be put forward for the psycotherapy, he wanted me to halve the dose in a period of 6 weeks too which is much too fast.

      The gp wants me to have intense psycotherapy rather than the short term type because i am so unwell but only the consultant can refer for that, the gp has no access to that service so can't refer me directly.

      My CPN is not much help, a few weeks ago she said she can refer me for it so i rang her after i got the news that the consultant wouldn't do it and now she is saying she can't refer me after all.

      I am not willing to come off my meds until i am more stable in life, it seems to me that it should be psychotherapy first and then consider withdrawing meds if that helps but they wont do it that way.

      I asked my gp why they are so awkward and she said that the intense psychotherapy is very expensive which often results in them trying to avoid referring people, it's terrible really and i should complain but all of my strength is taken up fighting my anxiety and agoraphobia.

    • Guest
      Guest BellaLuna

      Posted

      That's crazy, I've never heard of someone being denied care because they're on perscription medication. 

      Have you tried online therapy?

    • BellaLuna
      BellaLuna Guest

      Posted

      I know, it seems like an excuse to me if i am honest but our local MH team are known for being pretty useless.

      I did self refer for online CBT and had a few session but then they said i was too 'high risk' and discharged me.

       

    • Guest
      Guest BellaLuna

      Posted

      really? I've never heard of anything like this before.

      Have they recommended anything else?

    • BellaLuna
      BellaLuna Guest

      Posted

      The only sugestion was from my gp who said i could see the consultant and try to persuade him to go ahead with the psychotherapy and not remove my medication but i feel very worried about that because i don't think he will agree and i don't want to be forced to stop my meds, as a consultant he can insist that happens and then my gp loses her say in the matter.

      Not only that it is 10 miles away in a very busy town centre and i can't get there, for a while they did say i could have a home visit but no appointment was confirmed and now they are back to saying i have to go there.

      I am at the top of the waiting list for some face to face cbt now that i self referred to in January so hopefully that wont be long and they wont think i am too high risk to work with, i know they can't cure me or anything but i really feel i need some guidance and help as i try to fight my way out of this.

       

    • Guest
      Guest BellaLuna

      Posted

      wow that's something i've never heard of.

      have you tried online therapy from paid services?

    • BellaLuna
      BellaLuna Guest

      Posted

      Sadly that is something we can't afford, i am just hoping i hear from the face to face cbt that i self referred to soon, any help would be wonderful at the moment.
    • Guest
      Guest BellaLuna

      Posted

      hopefully it works out soon.

      If you ever need anything, post on here or feel free to send me a PM.

      You are not alone.

      You can beat this.

      Good luck and all the best.

       

    • BellaLuna
      BellaLuna Guest

      Posted

      Thank you so much, it really does help to know i am not alone.
    • Guest
      Guest BellaLuna

      Posted

      no problem at all, we're all struggling through this together, and we're all here to help each other.
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