Support and Treatments

Support & Treatments

CBT

I was referred for CBT when I was initially prescribed medication for anxiety and depression by my GP. It was a standard 6 week course, taking place at my surgery. The referral process was self-referral & I had to ask for help to fill the form in. I am capable to fill the form in, but answering open ended questions about my mental health was near impossible. My wait was very short – we assume this was due to severity.

I can understand how CBT can be helpful for some; for me it was not. Partly because I didn’t gel with the therapist, mainly because I just had too much stuff. I am too complex. In 6 weeks, CBT could only focus on one aspect and they chose anxiety. For me anxiety wasn’t the priority, my risk level was. The support and advice she was giving me just wasn’t important at the time and so I didn’t engage well. It also only scraped the surface, there wasn’t time to dig any deeper. I could not identify any triggers and this seemed to make her job very difficult.

After the 6 weeks I had not got any further. I still didn’t like her and the strategies were not helpful. I knew the strategies already and hearing them from her just proved frustrating. Very.

CPN

Again I have mixed reviews of support from the Community Psychiatric Nurse. I have heard a lot of negative reports from others and unfortunately I can now empathise. I was assigned my CPN 10 months ago and I cannot say we gelled immediately. I’m not sure we have gelled much more since.

The idea of a CPN is to keep those with mental health problems out of hospital by providing support at home. After the initial month, my support became Everglades 3-4 weeks. How much support can they realistically provide an hour a month? Not enough. Especially for someone who has come from Crisis and hospital with 24h support. You have to time your despairing moments 9-5 Mon-Fri (and when they are not on annual leave). I am told to ring helplines out of these hours. It is only in the past fortnight that I have been given a number to call to speak to the duty worker. My CPN will not always respond when she is working, to a call or text from the day/night/weekend before. To me, this is not support. Maybe I expect too much. The support I do receive is also not always practical enough, Being told to practice breathing techniques I was given 8 months ago and take up a hobby is frustrating. During appointments she usually asks ‘have you had any thoughts of harming of suicide?’. These are daily occurrences, part of my illness, they should be a given. I am not sure who I get frustrated with. My CPN usually gets the brunt of it, but presumably she is just following her job description, it is the system that is wrong.

Recently, I spoke to her on the phone, mainly to query my care plan that I do not have (or recall ever seeing/creating). During this conversation, I was told that she would be going for a meeting that afternoon to see if her employment would be continuing. What? For months I had been reassured (fear of abandonment) that her support would be continuing up until and during therapy (it can be very distressing). It turns out she is on secondment and her contract was up that day. What would happen about me? No-one had spoken to her to discuss if this was still the case. Due to this she had been wrapping up her case load and not putting plans into place. She hoped that someone would pick me up but couldn’t be sure. This totally threw me, it was not part of the plan. 

I still cannot understand why I had not been made aware of this possibility. I was upset, not with the possibility of losing her specifically, but that I may face no support or even a handover. That could have been the last time I spoke to her. As it is, she has been told that she will continue for at least 6 more months. Where is the part where the patient is central to their treatment?

On the positive side, I know I am lucky to have a CPN after a long fight. It took my stay in hosital to make them realise I really did need one. I am under my local Recovery Team. (Theoretically) communication between areas should be simpler. My CPN will accompany me to appointments to help me express my thoughts when I am unable to. Often I need the question rewording. She will also sort out my medication when (inevitably) it is not put on a repeat prescription and I have run out.
Is it worth continuing to see her? I often question this, however I am not in a position not to have these appointments. Without a CPN, I will not be able to receive therapy and may be taken from the recovery team entirely.

SV2

SV2 are an organisation in my local area that support victims of sexual violence. I was referred & spoke to them last year. When I went to speak to a lady there, she was lovely. The environment was really comforting, when I spoke to the lady I was sat on a large sofa with cushions. She didn’t ask for specific information, just the general outline. SV2 then put me on their counselling waiting list and given helpful information.

The predicted waiting list was 6 months & after 5 months I emailed for an update, it was then 6-8 months. When I emailed recently after 10/11 months, I was told I would be contacted in a few weeks for an assessment before counselling. I will keep you updated.

Medication

I really am quite embarrassed to admit this but, I do kind of think that medication is the answer. I know that’s controversial/naive/ignorant but my opinion is still the same. I’m yet to speak to anyone, particularly why professional that agrees & I understand their reasons but they still haven’t swayed me yet. I believe that everything I experience is due to a chemical imbalance. My brain just isn’t quite right. There hasn’t been any traumatic event, no triggers as an explanation. Therefore, when the chemicals are balanced, my mood will improve and I won’t experience the associated symptoms and behaviours.

I’m struggling to remember every medication I have tried but I can list the ones I do recall:

  • Citalopram
  • Fluoxetine
  • Sertraline
  • Mirtazapine
  • Propranolol
  • Zopiclone

Currently:

  • Venlafaxine 300mg
  • Propranolol 80mg slow release
  • Zolpidem 10mg
  • Trazadone 100mg
  • Diazepam 5mg as and when

Side effects I have experienced:

Drowsiness, nightmares, vivid dreams, night sweats, nausea, dizziness, tinnitus, shaking, poor skin, emotion overload, blurred vision, constipation, urinary retention, irritability, dry mouth, disassociation.

The difficulty with plenty of these is trying to work out if they are a symptom or a side effect. 

I’m not in a position not to try the talking therapies I am offered as without this effort, I won’t be professionally supported. It’s unlikely that my psychiatrist will keep prescribing or my CPN keep visiting. Even informal support from friends, family, colleagues will not be given as their view is you have to try. You have to help yourself. It’s not going to improve if you won’t get help. You don’t help herself. 

Crisis

I have mixed reviews of Crisis. The first time I encountered them was when I rang directly (mission impossible to find their number) to see if I could speak to them. Their response was immediate and firm. Without being referred by a GP or other MH professional, they could not help. I understand that they have a strict policy. What I still do not understand is why they did not check if I was safe at that moment, where I was, if I had any support etc. Because you have to be in a pretty desperate state to ring in the first place, right? 

I think they actually became involved after my first visit to A&E, just over a year ago. I was taken there due to my increasing suicidal thoughts, I was petrified about going to A&E but it worked in my favour. A letter from the hospital psychiatrist to my psychiatrist made her take notice. The next day the psychiatrist finally made my referral to Crisis and they made a home visit. That very night, they booked me in to the Crisis House. That was very scary. I had not seen it coming, I did not even know that such a place existed. Full praise for making arrangements so soon, but it really was soon.

I saw a few members of the team while I was in the Crisis House. They came every few days for an update, mainly from staff but partly from you personally. Crisis was still strange to me. I didn’t cope well with seeing a different person each time they came. In summary they asked if you felt any better and if the suicidal thoughts had decreased. But they’d never met me before, did they really expect me to open up?

Once I left the Crisis House, I must have had home visits every couple of days, I do not remember. What I do remember, is their action when I had answered the how are the suicidal thoughts? question. I’d been honest with their team (a different person every visit), what help was I going to get otherwise? I can’t say it went down swimmingly when I updated them. The lady that night said I needed to be in hospital. She rang various wards while I arranged for a friend to come. Maybe naively, I didn’t think I would ever get admitted to a hospital, not really, because I wasn’t that bad was I?

When I was discharged from hospital, Crisis continued their home visits for a couple of weeks until I was assigned a CPN. This was the main positive from the past weeks, the wait for a CPN was finally over. The first lady to visit was not particularly helpful, she was negative towards the incident I had experienced only a week before. Suggesting I should have seen it coming as she did. I was told she had already raised her concerns while I was in the Crisis House. I can’t begin to describe how unhelpful that was. It added to my already strong feelings that it was my fault and I had been naive. The next day I was visited by a lady I gelled with immediately. She then came the next day as well, telling me she realised how important it was for me to see the same person each day. From then until I met my CPN, she was the only person I saw. She also took me to my psychiatrist appointment and introduced me to my CPN personally.

More recently, they have been quite unhelpful, they are probably only following protocol but unhelpful nevertheless. Upon two referrals, they contacted my CPN…their decision was that because I was at work I was functional. Please feel free to tell me what functional is. My CPN told me that some people cannot function, they can’t think clearly enough to go to work. I know. Do not assess my risk level based on this. I go to work because it’s easier. I have incredibly supportive employers who make provisions for me, as they believe that my risk level is lower if I am at work. This is true 9-5, but that does not correlate to my risk level after 5pm. When my CPN also finishes work. When I rang Crisis directly to confirm this, their response was the same: if you are working you will not be deemed as at risk. They also told me that they were not a risk management service. Again, they did not check my risk or safety at that moment.

I know that I am lucky to have a Crisis Team in my local area, but their support does seem to be pot luck. 

Crisis House

This time last year I was in the Crisis House. That is scary. A year ago. Have I progressed?


The Crisis House was amazing, the only downside was that the maximum stay was 2 weeks. I’m very lucky to have been offered the service as I know many areas do not have Crisis Houses. There was also only 6 beds there, sheer luck that there was one free.

I was referred to the Crisis House by Crisis on my first visit from them. I was truly devastated by the referral, I did not know that they were even a thing. I wasn’t going to know anyone, I was going to be on my own. I was scared. I was not bad enough for this. How was I going to tell everyone? It did not get any better when I arrived. I was exhausted from crying so much (for the first time in years) and was begging not to be left. The people looked scary and I did not know what was going to happen. I would not let go of my blanket. There was a fair bit of waiting as I did not have the boxes for my medication (standard) and so I had to get an emergency prescription from the Crisis Psychiatrist, once it was confirmed that I was prescribed them. My parents were informed and wanted to visit immediately, they panicked. As did I, I ensured that I would not be visited by anyone until I gave permission. The last thing I wanted was to explain.

The Crisis House was reasonable and fair. You could come and go as you pleased (curfew 11pm) but must notify a staff member.  You were given your medication but did not have to take them there and then. Cooking and cleaning were your own responsibility. You would not be got up in the morning, only if it got towards midday. Each bedroom had a lock, ensuring privacy. It was agreed that I was allowed to harm. I just had to ask for help if I needed it. I do not know if that is a standard rule. I cannot help but feel it was an unusual agreement, not something recommended. Frankly there was not much choice, in regards to my mental health I can be extremely stubborn and arguably manipulative. The deal was I will not stay here unless you let me harm. They were potentially putting my safety at risk if they did not allow it.

I met some incredible people there, all lovely and each with their own story. One young lady arrived in particular, she was a little older than me and painfully quiet. Quiet as she was, we just clicked. I cannot describe it, we just did immediately. After a day or so, I learnt more about her and the reasoning behind her quietness. She stopped being quiet around me and we spoke about everything. She is probably the only person I have ever felt that comfortable with. She just got it. After a few days, she was heavily advised to be admitted on to a psychiatric ward. I really was so upset. I could not see how I was going to cope without her (Man up, you say. Unfortunately, at these times I genuinely fell as though my world is crashing down and cannot imagine functioning). Her and her key supporter ended up comforting me as opposed to vice versa.

The Crisis House team tried to provide practical support. It was not enough but on reflection, what more did I expect from a short-term stay? I was given a couple of booklets to fill in and practice the suggested techniques, one on self-esteem and the other confidence. Those were a really small part of what happens in my head, but again, what more did I expect? I saw one of the team usually daily, to discuss the most recent pages that I had filled in, it was beneficial there and then but was not really going to lead anywhere. While I was in there, mindfulness was introduced properly to me. Some of it sort of worked during my stay, some I could not even contemplate. People often mention mindfulness to me, professionals and non-professionals but I am too stubborn, I’ve already decided that it will not work. Sometimes I wish I did not think this way, but I just cannot help it. It is not a conscious decision, it is my brain. This is a common problem for me, I understand how these techniques work for people and how effective they could be, but not for me. As a GP said to me recently, I know too much about my illnesses.

I was again petrified when the 13 nights were approaching. For the second week I would ask at least once a day when I was going to have to leave.What if I just got told that day? How was I going to cope in the real world? Without 24h support at hand? As I was assured, I had 48h notice and they let me stay until the last day possible. Again, I was devastated and scared. My only positive was that the people I was closest to had left before me and I did not have to do the final goodbye.

Psychiatric Ward

When I left the Crisis House, I managed being at home for 2 weeks. Crisis visited every couple of days to check in with me and then a member of there team said I needed to be in hospital to keep myself safe. I couldn’t promise them I was safe at home and so the phoning around to find me a bed started. I was voluntarily admitted to a hospital 20 miles away. A friend came to pick me up, drove me and stayed as long as she could.

Memories are hazy of my stay. I can remember the realisation that I was under constant monitoring. There was a nurse watching my every move. I can also remember having to take everything out of my bag/pockets for it to be written down, claiming theft seemed to be a problem. Sharps were taken. These things were new; nothing was checked in the Crisis House. The nurse that did this gave me a (short) guided tour of the ward – the dining area, the toilets, the shower, the living room & the beds. I was told this half was the female half, and the opposite the male half.

I think I saw the doctor or psychiatrist that evening/the next day. I know I didn’t have my medication as it’s always a problem if you don’t arrive with it (I never keep mine, it doesn’t help my organisation as I can’t see how many tablets I have left. I would throw them away as soon as I had taken the pack out anyway).

I can remember the confusion of meal time. It was evening snack & I was sat outside the dining area. I could not work out how other patients knew it was that time. How it worked, did you just go in? Then, where did you sit? Were these all patients? What was the food? How did you know where everything was? No-one helped, I suppose patients were looking after their self and nurses didn’t know if you were new. The next day I found out you were each given a meal slip at breakfast to choose your lunch and evening option.

The second night I was put on new sleep medication. As it was new it totally knocked me out, Zolpidem. I’d no recollection of staggering to the desk as I was cold & being walked back. It was also alien to me to have to take my medication there and then in front of nurses. The monitoring level had stepped up.

I don’t remember the daily cycle with much detail, it came down to meal time, smoke time, bed time. Mobiles were charged in the office, not that there was much use for them. The psychiatrist came once a week, with her sidekick trainee. I was poorly diagnosed with BPD & told me she wouldn’t have me stop long as I would pick up bad habits from other patients. She was probably right but at the time it was devastating and frightening. Majority of nurses were nice enough, day staff rushed off their feet. They patched me up if needed without disciplining me. They’d take that instrument, knowing I would replace it with another. After two weeks, I was instructed to take leave for am the weekend. However much I expressed that I didn’t want to go, the psychiatrists instructions were final.

As it is, I was right. I was sexually assaulted, by someone I knew, at their house. No-one was to predict it. Bad timing. I pleaded to go back on the Saturday morning, they had to check my bed was free (worrying) & then said I was allowed. Then, more than ever, I needed that hospital. I knew I was safe from myself & others and I was safe from others’ questioning. Also, it meant I could disclose to someone a step away, they didn’t know me personally, they couldn’t make any judgement.

The psychiatrist still stuck with her plan and I left a week later. Given recent events, I think that was too soon, but I would have probably said the same regardless. I was devastated to leave. To leave 24h professional support and a safe environment. To return to the real world,  the world where I would have to be normal, sociable, happy. It also meant the harsh reality of losing the support of two crucial people, due to the assault, was real. How am I going to cope? I was going back to staying with my parents, that was the agreement, I wasn’t to go back to my home. Crisis Team support would continue for a couple of weeks until I was assigned a CPN.

Work

I am lucky in that I have an incredibly supportive team of colleagues. They put so many provisions in place for me to help me remain at work. They agree that work is beneficial to my mental wellbeing. I am more than aware that many employers would not do this and would enforce that I was off work sick. Last year I had the remaining six weeks of the school year off when I was not well, this year I have only given in to one day. I could be signed off every day, but when I do my job properly, why shouldn’t I be working?

I am aware that to other colleagues, I appear to have preferential treatment. It must look as though if I dislike something, I get my own way and get moved. What they do not understand is how hard I have fought in the first place, the anxiety I experience, the difficulty it has taken to ask for help. They understandably must sometimes see me taking time out and think that I am just choosing not to do anything. This is not a choice. It has taken me years to realise that it is beneficial to have time to clear my head, it had not even crossed my mind before the past 18months. On reflection, I needed this through school but because I outwardly did not express signs, no-one realised. It will have also taken me time there and then to realise and then act upon the fact that I need quiet. It is not a quick and easy solution.

Compassion Based Therapy

This is where I am at now. I had two assessments with a specialist consultant psychiatrist with my CPN present (someone usually accompanies me to appointments due to my difficulty in answering some questions). The lady was nice enough and it was extremely helpful to have completed a written questionnaire beforehand. That way I was prepared for the questions that I would be asked and I knew that she already had some awareness.

At the end of the second assessment, I was told that Compassion Based Therapy would be my best route currently. We discussed whether a group or individual setting would be more suitable. All three of us agreed that a group would not be helpful. I would have extreme difficulty interacting with others and I can find other’s disclosures very triggering. Rationally I can see that after time I would probably become comfortable, but the thought is too much. And it is definitely too much when I am unwell. Also, chances are that I would become too attached to some others. And so I was referred for individual therapy, I was warned as usual that there was a long waiting list and this was even longer for individual.

 She informed me that now the above psychiatrist had returned from maternity leave, the waiting list would have decreased…decreased from two years. The psychiatrist has returned to work one day a week, I cannot imagine this has dramatically decreased the list. I am quite understanding of waiting lists now, particularly now I hear more of other’s experiences, but two years is a long wait.

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