Just a short blog about my appointment tomorrow. I am meeting my care coordinator but she has also invited my last therapist who I haven’t seen since May last year but she knows me very well.
As I have mentioned before I am grateful to my CC for inviting the person who knows me best in the system however I am unsure as to what she hopes to gain from this. Whilst it will be useful to go through techniques I am absolutely clear that I did everything I could last October when I started to feel depressed and that I put every plan I could in place – what made it worse was the crisis help or lack of it.
I am also at the moment experiencing hypomania and I need to be honest tomorrow about this however I feel that if I am honest I won’t be believed because this is my last but one appointment before being discharged again.
What I am experiencing at the moment is very frightening but I am doing everything I can and at the moment by using the strategies I have learnt (mostly in therapy) I can function as best I can. If the feelings and symptoms I am experiencing get too much I can’t rely on the support of the system and that is a scary prospect.
I have decided that tomorrow I need to be honest, factual and state very clearly & calmly my views and hopefully something more suitable can be put in place for me. I am going with no expectations – that is the sad but true reality of mental health care for many people.
Ok so I am hypomanic …..
About a week or so ago I started to feel that I was slightly high. I find that as I become more honest with myself and others about bipolar I actually also become more aware of my symptoms. This in some ways is very positive and means that things like my Wrap are easier to implement but also means that I am frightened very early on.
I first noticed the high at my book club. I am quite shy in many social situations that I don’t know and especially at places where I haven’t been before and as I am fairly new to the book club I haven’t been to some peoples houses so is all still a bit new. On the Thursday before last I felt on top of the world and it was like I was watching myself from a distance at the book club. I was talkative, joking, confident – at times I wanted to shout at myself and I think that the other people there probably thought I was a completely different person!
This was the first sign I took notice of and so immediately spoke to people I trusted to ensure that others knew. I also took some diazepam and luckily had a short break booked for the following 5 days where I was able to relax and really control what I did which seemed to stabilise my high for a while.
On Monday last week whilst still away I became very anxious and unable to concentrate much and my mind jumped from one thought to the next so quickly. I became more frightened and by the time I went back to work on Wednesday not only was I experiencing mild psychotic symptoms but realised I wasn’t able to keep up with my thoughts and also was very talkative. At times I gave also felt very isolated and desperate which has been so difficult to manage.
I think that I have controlled it as best I can by trying to avoid situations that might not be helpful for me at the moment, ensuring I get some sleep even if I have to take something to help and by taking diazepam.
I am so frightened that I am going to experience a very deep depression again like last November and so working as hard as I can to stop this from happening but I really don’t know if I can.
I am seeing my care coordinator on Thursday – my 2nd to last appointment before being discharged but I think I need to call her tomorrow.
#morethanadiagnosis …… Discuss!
Every so often my twitter feed will be full of a new hashtag and with this brings different opinions and thoughts on many different subjects. Over the last few days one has caught my eye, made me think, challenged me and also most importantly got me and probably countless others talking with people about mental health and sharing a bit about one another.
The hashtag I suppose is saying that we are more than our diagnosis’s and this got me thinking. For me personally and this is my opinion when I first heard this I thought yes of course I am more than a diagnosis of bipolar. I am a wife, a daughter, a bossy sister, a colleague and countless other things. In fact the hashtag gave me a bit of a boost and for someone that struggles to find positive things to say when talking about myself it was quite a revelation!
I also think that sometimes mental health professionals struggle to see past the diagnosis and when they do they might miss the diagnosis completely. For example when I have spoken to mental health professionals in the past about my job I have immediately been told I must be fine and coping ok and all the frightening symptoms I might of described just minutes earlier are ignored.
When I thought about this hashtag more closely I then thought that my diagnosis has rather shaped some of the things I describe myself as being more than my diagnosis. I am not sure if this makes sense as I often struggle to get my thoughts down on paper but would I be the wife I am, for example if I wasn’t bipolar?
Whatever people think and just like each diagnosis it is so individual, so is our opinion on the hashtag and that is absolutely fine! I am just pleased to be part of the discussion and keep the conversation going.
Thank you twitter for that opportunity!
Preparing to be discharged ……… Again!
After the chaos that surrounded the last appointment I was supposed to have with my care coordinator I was reassured to find her at the correct location this week! I was pleasantly surprised. She started by apologising and I sympathised with her as the system is mostly to blame for the amount of travelling that she has to do.
I really like her style! This might sound peculiar however she really gets how everyone is different and therefore is affected differently by mental health
Illnesses. She also doesn’t go through a rigorous checklist of assessment questions which I find makes conversation harder and instead talks openly with me, dropping questions into the conversation or picking up on things I say in order to ensure that she covers all the important and necessary areas. She lets me talk but does her job and as much as I hate a checklist I understand the importance of assessing and watching for signs.
We talked about how evenings are difficult for me and instead of telling me what to do we talked about options and she suggested things that might help. She had also got in touch with my previous therapist who is retiring soon and has asked her along to my next appointment which I was so pleased about. I thought it was very sensible for a care coordinator who has known me for 3 months to ask the professional who knows me best to see me. I was really grateful for this and this is taking place at the end of February.
After that appointment I will have 1 one more in March and then I will be discharged from mental health services back to the care of my GP. It is very frustrating and frightening not to be in a longer term care team and actually it is something that at the moment I am trying to push out of mind. My family however are concerned. My husband, family and close friends saw for themselves the immense struggle and distress I faced last October/November and are scared for me that this will happen again. They provided that 24 hour care without any professionals on board for almost 3 weeks. How many times will this have to happen?
Time to Change and Time to Talk
The posts and tweets I have seen today have really made me smile and feel warm inside. The campaign has come on so much in the last few years and whilst there is a long way to go the progress can be seen. In my own life I would never of thought I could talk so openly with people about mental illness as a subject and also my diagnosis of bipolar. I never thought I could challenge stigma within my own friendship groups, family and at work. I have been comforted by the fact that people have felt they could open up to me because of a conversation I had started.
In addition to this blogging and twitter have proved to be immensely therapeutic and the ability to read and share with other people experiencing similar but very individual stories has at times been life saving and inspiring.
Keep talking everyone, thank you all
A pretty perfect weekend – despite the broken boiler!
It has been so wonderful to have such a lovely weekend, one where I have also felt pretty well and pretty ‘steady’. After such a difficult few months I was able to enjoy such great events and not be too pre-occupied by symptoms of bipolar. The biggest thing for me recently has been paranoia which can mean that I am heading for a depression or a hypo manic episode – this is very scary and so I was relieved to have some respite from these symptoms.
Last Thursday evening our CO2 alarm at home sounded which straight away I knew wasn’t just a battery warning! After various visits from gas and boiler experts we have a condemned boiler so now working our way through the world of quotes and trying to get to grips with technical facts!
Instead of stressing me out I took this in my stride and thanked God for our alarm.
On Saturday I took my Brownies to the Science Museum. It was fantastic and they were a pleasure to take out for the day. We had lots of laughs and learnt so much. What made it even more special was meeting one of my best friends who lives in Oxford who had brought her Brownie pack with her as well – it was just a great day. Volunteering gives me such a boost and helps with my self esteem and also I enjoy it so much.
After an exhausting trip to London normally I would run a warm bath and relax for the evening but last night was my sister in law’s 30th Birthday Party back in London. It was absolutely fantastic and wonderful to catch up with people, have a good dance and generally let my hair down. I am so pleased that I felt pretty well and that I could enjoy myself.
Today I made it to church which provided me with some quiet and time for reflection and then my husband and I went out for Sunday lunch – much warmer in a pub than our house at the moment!
I am feeling tired but contented and very blessed and hope I can take this positivity into next week and beyond.
Poverty Homeless Action Week – A Personal View
This week I am going to be attending a networking event on Tuesday evening at a local charity who support young, single homeless people in the borough. When I was just 19 I found myself in a very difficult situation. I had been living with my family and had recently started college but for many reasons I was unable to continue to live at home. My mental health had really deteriorated and this with other very difficult situations meant that I found myself without anywhere I could permanently live. I was definitely one of the lucky ones as I had other friends and family I could stay with however this wouldn’t of been ideal on a permanent basis and I needed some space and stability.
I decided to confide in my tutor at college who had heard of the charity and made a phone call on my behalf. The charity met me almost immediately and then worked hard to place me with a couple who we’re renting out a spare room in their house through the charity. This placement and host couple gave me the opportunity to distance myself from a difficult situation and focus on my college course and treatment for my mental illness as I hadn’t yet been diagnosed with bipolar disorder.
Whilst the placement unfortunately meant I was more vulnerable in other ways it gave me a chance to focus on things I needed to and the staff at the charity were fantastic and also instrumental in ensuring that I was transferred to a supported living environment within 7 months.
They also assisted with the overwhelming task of claiming benefits and budgeting which coming from a fairly affluent background was completely alien to me.
As we spend time this week thinking of and acting where possible to help those who find themselves poverty stricken and maybe homeless I thank the people who helped me when I needed it and therefore probably stopped me from sinking further into the poverty trap.
Why are mental health patients always in the wrong?…….or so we are told!
I hope this doesn’t come across as too angry but I am so cross and disappointed to be let down so badly by the mental health system. I had really worked myself up to my appointment today as I always do and I am sure this is a feeling that others experience too.
I last saw my care ordinator in December at my local mental health centre – it is not the centre where the care coordinators in the team I am under are based but because they are setup in a way I cannot fathom I can still request to see staff at the centre most local to me. Only in emergency situations would I ever go to the centre that is not so local.
After my December appointment I was telephoned by my care coordinator and we made an appointment for today at 3pm at my local centre. Due to the large gap between appointments I was more anxious than usual and also wanted to speak to my care coordinator about lots of important issues as I have blogged about before.
I work full time so I had booked off from 2.50pm this afternoon and made my way 5 minutes up the road to the CMHT building. I live and work within 5 minutes of here so the obvious choice. On arrival I spoke to the receptionist who I have known for years and she made a call to the office where she expected my CC to be but told she wasn’t there. She then called the other office which is half hour away and she answered and said that I should be there where she was! The receptionist passed the phone to me and instead of any apology I was told by my CC that the appointment had been made for the further away centre because I had said this was easier for me because of work! This is completely wrong and in no way logical and I now have to call tomorrow to arrange another appointment and have all that build up again.
Whilst I am happy to accept that everyone makes mistakes I am appalled that no apology was offered and that actually I was blamed for a mistake that was obviously hers. It always comes down to the staff members word against a service user’s and the staff member always seems to be believed. What made it more worrying was that I was told by the receptionist that I was the 3rd person today who was at a different location to their CC – there is definitely something wrong with the system.
Reasonable adjustment but not too much!
After a very busy week at work I felt I needed to blog about reasonable adjustments for people with mental health illnesses and why I think these need to be so carefully tailor made for each indIvidual. Even though I have bipolar I am very careful about what reasonable adjustments I have and very rarely ask for any in the workplace. Basically the main reason for this is because I think I could feel worse if I were to feel uncomfortable in anyway about an adjustment even if someone else thought it was in my best interests or if it had worked for someone else – everyone is different.
For example work are keen for me to have a dedicated parking space, as because of my anxiety and past trauma I am unable to park in the multi-storey car park near the college if there is no space in the college car park. To get a parking space you have to get in by 8.30am which is not a problem most of the time as I prefer to start work at 8am. Sometimes though I need to get in later due to side effects of medication or for a doctors appointment and it is a nightmare not getting a space and it causes me lots of added stress. This means that I don’t use my late morning and flexible working reasonable adjustment as often as I should and I don’t want a saved space because other people won’t understand and the anxiety of thinking people might be annoyed by this or are talking about me would be harder for me to cope with. I have comprised on this one and said that when building work starts which will reduce the number of places for a time I will have one but not until then.
Part of how I cope is to keep busy and this works for me – it might not work for everyone but that is why I am trying to ensure that people understand how different one case of bipolar is from another. I am sure that this same principle works for other illnesses as well.
Because work has been so busy this week friends and family gave urged me to take it easy, to contact HR about workload but this is really not me and therefore I haven’t done so. I might regret this further down the line but actually I know myself very well and believe me I am close enough to my last episode to be careful. I think as it stands today asking for some time out, flexible working or extra support could in fact make me worse as I will give myself a hard time. I just need to convince others of this as well.
I want to abolish evenings and nights!
This may seem ridiculous but I am completely at a loss about how to improve the evenings. This recovery has been very tough – I am frustrated and I know possibly also impatient but the evenings and nights are so hard. I can have a fairly positive day – without any signs of depression. I may get pangs of anxiety during the day but all in all I am pleased with the progress I have made. I then return home or even at the weekends start to settle in for the evening (although I can feel unwell in the evenings even if I am out and not at home) and quite quickly the anxiety sets in and I start to experience waves of depression and even desperation when it is at it’s worse.
I have tried everything – I have rested, tried to read, tried to keep busy or find distractions. I have had baths, practiced mindfulness but nothing seems to work for long or at all and the evenings and nights that follow really bring me down and I am using all the positivity I can muster to keep focused and reminding myself how far I have come. What really frightens me is the speed in which I experience these symptoms. Literally just minutes can pass and that really undermines my confidence and scares me so much.
The nights have also been bad and I had been struggling to get to sleep much before 2am and waking 2 or 3 times in a complete panic and then really only dozing before waking again. This was frustrating during the holidays but I could at least doze in till lunchtime if I needed to but I couldn’t let this continue when I returned to work so I started taking sleeping tablets from Saturday night. I have had 2 better nights sleep but still woke each night once and was fairly distressed. I have at least ensured I am getting 6 hours sleep a night which is vital to sustain my recovery – I am walking a tightrope that seems to be getting thinner.
I have an appointment on 22nd January with my care coordinator which is not ideal but going to ring GP tomorrow as I need to ensure I can talk this through with a professional – I hate feeling isolated on top of everything else.
My Journey through the world of Mental Health 