300 days without depression…

To be honest if anyone had said to me on the 28th December 2015 that I wouldn’t experience any depression at anytime during the next 300 days then I just wouldn’t of believed them. 

Last year was a pretty difficult year for me and at times the depression I experienced as part of many prolonged bipolar episodes was deep and painful. At times I wondered if I would ever get through.

I am not saying that the last 300 days have been a bed a roses but I can honestly say that I am coping pretty well and every month I seem to be able to discover a new strategy or find someone to chat to who helps me see something in a slightly different way. I am still plagued with anxiety and recently over the last month or so this has been pretty unbearable. Panic attacks have woken me in the night and some days increased stress at work have meant too many escapes to the toilets to hide away from everyone.

I am often asked what is different? What has changed? How have I managed to stay so well for so long? In someways I would love to give an answer,to share the newfound wellness knowledge with everyone and maybe help 100’s of people have 300 days free from a depressive episode but sadly it isn’t that straightforward. 

Bipolar is an unpredictable illness, one which could quite easily catch me unawares at anytime, anyplace. I am sure that some of my coping strategies do help and that I can’t be 100% sure that if I stopped all the positive changes I have made over the years that I would have had such a stable period recently but I need to be realistic.

To be totally honest I am really scared about having a period of deep depression again and the recent anxiety and stress has caused me to worry more about this. I think that instead of dwelling on the possibility of getting really ill I am actually trying to strike a balance so that if/when this happens I can deal with it as positively as I can, although I am also aware that depression alters the way I think about everything and therefore postivity is often hard to find in these circumstances. 

I also want to, if possible, look forward to the next 300 days and the new challenges, life experiences and good times that might be ahead and if I can have the next 300 days depression free then that would be amazing but if I do become really unwell I will try not to give myself too much of a hard time about it, I want to give myself the time and space to recover and let people help where they can. 

One of the most important messages I have communicated to myself in the past year and to others is that mental illness is not a choice, sadly this is still a myth that needs to be dispelled in so many areas of society. 

Getting back into a routine is good news!

Christmas is over for another year and even though I was pretty unwell for a lot of November and most of December and still not 100% now, I managed to enjoy quite a bit of Christmas. 

I have had 2 weeks off work and don’t go back until Tuesday but I am actually really pleased to be getting back into a routine.  However good a break is and yes, after the last couple of months I have had I certainly needed one, I am now though craving a routine.

Whilst quite a few of my friends are cursing setting the alarm after two weeks of lie ins – I am looking forward to returning to work and the structure that it brings me most of the time. 

Over the last couple of weeks I have been going to bed later and getting up later – my sleep hasn’t been too bad but over the last couple of evenings I have become very depressed with no warning at all and then had to ensure that I got on with lots of jobs for Brownies or Church as a distraction to try and keep the depression at bay.  This was a sure sign I was ready for work again! It will do me good to get a better bed time routine in place as I don’t want the depression to slowly creep back at other times of the day as well and sleep is crucial to this.

Eating is also something that needs to be in a routine for me! Christmas food is lovely, however it makes me feel a bit bloated and then I give myself a hard time that I am putting on weight which doesn’t do my self confidence any good either. 

I haven’t worked full time hours since November as I had a bad bipolar episode and so of course I am a bit anxious about going back but I am pretty sure that I am well enough to cope and also seeing my GP tomorrow. I have been under the care of the community mental health team for the past month and it pleases me to say that they have been very supportive. They have for the first time in years listened to what I needed, not over complicated the care they gave me (which was my request) and worked with me to get to the position of going back under the care of my GP from tomorrow.  I feel in control of the situation and that is often half the battle.

So as I pack away the Christmas decorations for another year and stop tidying cupboards for the sake of tidying it will be with a smile that I go back to work!

I am a great believer in creating good memories for the future and in the last two weeks I have certainly done that! 

It has all gone downhill so quickly … But there is no mental health support to be found

So less than a week ago I wrote on my way home from a weekend away and things were difficult but not impossible. Today I drifted well into the impossible phase of this bipolar episode – however I certainly kept fighting. I find it frightening how I can wake up in utter blackness – it takes even longer than normal to see through the morning fog (Even when I am well I am not a morning person!). This morning it took 2 hours before I finally got out of bed and made tentative steps to work and to what was a fairly active if not difficult day.

I have contacted my GP who is my care co-ordinator as I am discharged from the community mental health team. She has upped some of my medication which I can take over the weekend to try and stabilise me and she will see me on Wednesday. There is no other professional support avaliable.  To me it would make sense to act now before I reach crisis point – but even then A and E is probably my only option and to be honest that is enough to exacerbate a crisis.

I am though, in the midst of the despair feeling truly blessed tonight and thankful that family and friends are providing me with so much support and love. This makes me think about those without a support network such as mine, those that are living alone with the pain of mental illness and those that like me have limited professional support but without the friends and family I am so lucky to have. 

Tonight I am angry – angry with bipolar, angry with myself as depression plays with my mind and so of course this must be my fault! But also angry with the system, the system that seems non-existent to so many, that doesn’t have parity of esteem with physical health care and the system that waits until a crisis before acting and stepping up to help. Even then it has severe limitations.  

All I can hope is that this particular episode of bipolar isn’t a long one and that I remember to take life in small chunks until I feel stronger again. 

Does getting away for a bit help?

I am writing this blog on the train coming home from a lovely quiet weekend in Harrogate with my husband. We have both been very busy lately and last weekend we had a family wedding to attend which was lovely but very tiring. It was also my husbands birthday this weekend and we often go away around this time of year before the Christmas busyness sets in. 

Over the last few weeks I haven’t been feeling that well. My anxiety and paranoia have steadily increased and become more and more disruptive and I have also experienced bouts of depression that aren’t constant (and are actually relatively quick) but when they suddenly occur they are terribly painful and often come with a wave of emotion that I struggle to control. 

As the train gets closer to London with the inevitable ‘back to a routine and normality’ that it brings, I am anxious, as I worry that whilst I had the same head with the same illness with me this weekend that it might seem all the more difficult at home. 

During dark times I often have the urge to ‘run away’. When I was younger I used to actually do that (probably causing untold stress to those that love me) but I was convinced that I could run from the depression and the anxiety that was building up inside me. It did though help a bit and even now when I get away on mostly pre-planned trips it does give me some breathing space and a chance to gather my thoughts before trying to fight this illness in the midst of work and ‘normal’ life. 

So as I return to work tomorrow I will do so after 48 hours of ‘getting away’. It hasn’t been always easy this weekend as reading and relaxing in general are pretty difficult in my current state of mind but I have been able to enjoy parts of the weekend and it is those things I need to hang on to through the despair of depression. 

What would help? What can we do?

Sadly over the past week I have become hugely anxious and paranoid and this is really starting to affect me a lot and is very debilitating. 

I have been so well for a long time and whilst I know it was unlikely to last for ever I am terrified that this anxiety might lead to an episode of depression and/or hypomania. 

I have already been to the doctors and started to put good support in place which has led to a medication increase which is helping with some of the symptoms.

I have also had so many offers of support and help and I am so grateful for these but I sometimes worry that I can’t always tell people what would be helpful or if there is something specific they can do. Sometimes the very simple things like a text or a chat over a cup of tea are enormously helpful and it is those spontaneous gestures that seem to have the greatest effect for me in combating the paranoia and very low self esteem.  I worry that people will think I am mucking people about or being a bit difficult when I don’t know what might help or what someone could do for me. 

In fact at this precise moment I am actually unsure what I really need or what could help as I am either still in a bit of denial that I feel unwell or just fighting all the thoughts going round my head so much that nothing makes much sense.

So to all those amazing people that try daily to help me and countless others with a mental illness – thank you. Please stick with us and apologies that sometimes I might appear vague about what would help the most, I am hugely grateful and just by being there you are helping so much.

Where have I been?…

So after a long break from Twitter and from my blog I am back! 

There are lots of reasons why I decided to have a break but I think I made the right decision and I am proud of myself for making a few changes (both on and off line) that I hope will keep me well for longer and also help me to see the positives that I am experiencing as well.

Twitter is an amazing source of support, however I got a bit worried a month or so ago that it might of been fuelling my paranoia.  I don’t for one minute think that it was the sole cause but it was something that I was aware of and therefore that I could quite easily do something about. Other aspects of my paranoia aren’t always so easy to sort.

I also found myself getting quite upset about stigma on Twitter.  I started to take personally stigmatising comments and at times became anxious when I read certain tweets.  This wasn’t healthy and so therefore a break enabled me to realise that I couldn’t solve the problem myself and eradicate mental health stigma.  It also helped me to realise that I can do just as much in my life at Church, at work and within my own circle of friends and family to start changing the way people view mental health without challenging every reference on Twitter.  

I have also been incredibly busy (with very positive things) and I am slowly getting used to the fact that I am not 100% well but that is ok (ish). I have started swimming and eating much more healthily which is also having a positive impact on my life. I am still having the occasional day when I resent being ‘not quite well’ – where the anxiety prevents me from doing what I really want to do or the sleepness nights trigger a negative spiral of thoughts and I feel that I am going to become very unwell and therefore walk on eggshells for the next few days.

I am pretty realistic about the fact that I will be unwell again in the future but the period since my last serious depressive episode has been different. I am acknowledging my vulnerability but staying more positive than before. I am coping and whilst some days are better than others I am moving in the right direction.

Thanks for sticking with me! 

Online Counselling – My story

Nearly two months ago I was pretty desperate and had been waiting 3 weeks for an appointment with the community mental health team (CMHT) after my GP had urgently referred me but I had heard nothing. I was very unwell and felt that my thoughts and feelings were building up like a pressure cooker waiting to explode. I really didn’t know where or who to turn to.  I am lucky as I have very supportive family and friends but it isn’t always easy to tell them my darkest thoughts and when I am in the depths of depression feeling a burden to them is always uppermost in my mind.

I was getting to the point where I knew I needed to get some professional help myself as not only did I need an outlet for my thoughts whilst in this crisis I also wanted to build on my ‘Wellness Toolbook’ for the future. I am lucky that through Twitter and my blog I have met some amazing people who not only offer empathy and support but also have a vast amount of knowledge at their disposal. One such person asked if I had heard of Online Counselling and recommended an organisation to me.  I was immediately interested and went about finding out more information.

The first thing that sprung to mind was the accreditation it had and whether the site was reputable and so I was pleased to see that it carried the logo for the British Association of Counselling and Psychotherapy. I spoke with my family and friends who were sceptical at first but after I spoke to my GP who was very positive I decided to give it a go.  I was impressed by the website, security features and also the options available for counselling which include Skype and Instant Messaging. 

I went about carefully choosing a counsellor and then had an introductory session which was very useful.  I opted for Instant Messaging mainly because the anonymity that it provided at a time when I was hugely anxious was reassuring. I was also very frightened of seeing someone face to face as was feeling completely let down by mental health services and worried that the anxiety caused by meeting a new professional for the first time might be too much for me so this sounded a good option. 

I didn’t want this to replace the CMHT appointment that I think I need and am entitled to ( I am still waiting nearly 3 months on) but I also couldn’t sit back and do nothing when I am so determined to help myself where I can. I wonder whether for some people ( and I realise this wouldn’t be a viable option for everyone) this could be offered on the NHS? I don’t for one moment suggest that it should replace services already on offer but with waiting lists so long this could be a huge lifeline to some people experiencing mental health problems. 

I would also add that I am paying for this treatment myself and well aware that I am in a fortunate position to be able to do so.  Many others I’m sure, would like to pay for treatment themselves due to the lack of NHS services and the long waiting lists but obviously could not afford to. 

This is my first blog on the subject and I hope to be able to help raise the profile of online counselling and the huge benefits for people like myself. 

So I went to A&E & saw the most amazing nurse … a fairly positive visit…

As during previous mental health crisis’ I made the difficult decision to go to the local Accident and Emergency department yesterday. It seems pretty ridiculous that this is the only way for me to access crisis support when experiencing a bipolar episode but sometimes I can’t see any other way. I had also waited nearly 2 months after my GP refered me urgently in early February and I had experienced the toughest weekend.

We decided that yesterday morning might be a sensible time to go but it doesn’t take away the huge anxiety that is associated with that place and also reminds me every time of the most horrendous recent experiences that I have had there.

On arrival there is now a process of ‘streaming’ to ensure that people are directed to the relevant department. One thing that I immediately noticed here was that the ‘streaming’ nurse didn’t say hello or introduce herself.  It is a shame that one of the large London hospital trusts (not the mental health trust) haven’t signed up to ‘hello my name is….’ or if they have that staff aren’t using it which is a shame especially for those facing patients walking through the door.

She spent less than a minute with me, just writing down my surname, date of birth and handing me a piece of paper to take to the main desk. After checking in we waited in a slowly filling up waiting area which I would find anxiety provoking at the best of times for about an hour before seeing the accident and emergency triage. The nurse here was actually supportive and explained that the mental health nurses would be contacted from the other trust to come and see me. She was slightly more friendly than the ‘streaming’ nurse but did have that ‘lets get you out quick’ approach! 

We then waited for what normally is an eternity to see the mental health team. After only half an hour we were pleasantly surprised when a nurse appeared and as we were walking to a consultation room she greeted us warmly, introduced herself and another nurse and was just amazing from the moment we met her.  As usual though she had been given a totally inappropriate room to conduct her assessment in – it had a bed and 1 chair. My friend and I decided to help them out and sit on the bed and they managed to beg a chair from the hospital staff (another problem of having to go to another trust to see mental health staff). 

Once sorted in this rather strange room I was immediately reassured by the mental health nurse and given my currently state that is some achievement. Instead of going through a laborious checklist assessment she talked freely with me and completed different parts of the assessment as she went.  This approach immediately puts me at ease and staff concerned get a much better overview of where I am at the moment instead of just concentrating on receiving one or two word answers to sometimes irrelevant questions.  The other member of staff made notes and asked a few questions which weren’t at all helpful but probably she felt she had to ask something! The senior staff nurse not only grasped quickly the severity of my crisis but also grasped the type of support I so desperately need. She didn’t appear shocked and at every opportunity reassured me and treated me like a fellow human being.  

After about 40 mins she left to speak to a doctor and when she returned she explained that unfortunately the crisis team or home treatment team that it is sometimes called had no capacity.  She had though noticed that I had a Liason Intake Assessment (LIT) on Friday and was pretty sure that they would refer me to the Short Term Intervention team (SIT) so she was able to do that for me there and then and therefore I wouldn’t need to go to the probably rather pointless LIT appointment on Friday. 

I am now waiting for the SIT team to contact me and hoping they do very soon as it is a little frustrating to go through the accident and emergency process only to be still without the support I so desperately need. I am hugely grateful to the nurse who saw me yesterday and proud to be a governor for the trust where she works and impressed that they and obviously she are using ‘Hello my name is ….’. I just hope this isn’t a one off and that the system is slowly improving and that the people I will see during the next few days and weeks will be as equally supportive and professional. 

Received a letter confirming CMHT Appointment – wished I’d never opened it!

As promised I received a letter from the CMHT today confirming my appointment that had been given to me over the phone for 27th March.  This is nearly 2 months after my GP referred me urgently as part of the crisis plan I currently have.

The first thing that I read is that I have an appointment to see the ‘Liason Intake Team (LIT) Duty Worker’.  I have never received a letter with an appointment that doesn’t name the professional I am seeing.  I find this hugely anxiety provoking and in the many years I have received mental health services they know I need to have appointments with females but yet on many occasions I will be given an appointment with a male either in writing or with the crisis team which always delays treatment further.  Not knowing the gender or name just adds to my distress. 

Action number 1 tomorrow is to clarify who I will be seeing and ensure that they recognise I need to see a female duty worker.

The second issue is the location of the appointment. Under the trust’s policy I know that patients can request to be seen at the nearest mental health centre to them.  This is because the trust made a decision to move services around and therefore the staff have to travel. When I was first refered I made it clear that the appointment needed to be at my nearest centre as I am unable to travel by public transport and there is no parking at the other centre.  Yet again I have been ignored and the appointment is not in the correct place.

Action number 2 tomorrow is to ask again for the appointment to be held at my local centre as requested.

The letter itself comes with a leaflet outlining the services that the LIT team offer. The leaflet makes it clear that this is an assessment. As I have said previously I really don’t feel that an assessment is the most suitable solution for me or in fact anyone with a long term mental health condition who requires ongoing support.

Action number 3 tomorrow is to explain again that I know what support I need and what would be helpful to me. 

The leaflet also talks about ‘developing an initial care plan’. I already have a very comprehensive care and crisis plan which I work hard to follow.  Part of the care plan was to contact services via my GP if I felt I needed them – the delay in getting the required help has had a huge impact but doesn’t mean my care plan needs re-writing.  

Action number 4 is to ask them to read my care & crisis plan which is on my notes before I attend any appointment.

The whole process is completely unsatisfactory and has made me so anxious at what is already a very difficult time. The LIT team should not be used for people with long term mental health needs that need some extra support in addition to the GP support every once in a while. I was promised when discharged from services that if I needed support in the future that it would be quick to access and relevant to my needs.  I am struggling to see this promise in action. 

I am seeing my GP tomorrow morning and hoping she can advise me what to do and help restore a little faith in the health service I am faced with.

Another assessment is not what I need …

Nearly a month ago my GP re-referred me to the Liason Intake Team part of the Community Mental Health Team (CMHT) in my local trust. Even though I am bipolar and have been receiving mental health treatment for 17 years I was discharged a couple of years or so ago and therefore my GP coordinates my care. As I have mentioned before she is excellent but felt last month that I needed further support.  

I was promised previously that if I needed CMHT intervention that it would be easy to access, that I wouldn’t need to wait for ages or explain to loads of people a summary of the past 17 years. Each time I need a referral back to CMHT I come up against similar challenges so this referral is sadly not a great surprise.  

A month on in this referral I am no nearer any support and in fact a conversation I had with the CMHT yesterday just left me exasperated and added to the mental distress that I am currently experiencing.  

What is incredible is that when I called yesterday to chase the referral I was given no update, no apology or understanding regarding the wait and worst of all no one asked if I was ok or how I was getting along.  They couldn’t get me off the phone quick enough – this is far from quick easy access to the CMHT.    

In addition to that, I know I will have to go through an assessment before any further support is offered and the likelihood is that there could be another huge gap between assessment and any support being implemented.  Even worse is that after assessment and all of this uncertainty I could be referred straight back to the GP without any on-going support.

I am no better than a month ago and the poor mental health care does have a huge negative impact and certainly increases my distress.  As I get slowly worse I find it harder to speak to people I don’t know and so the well organised approach from my doctor of referring when I reached the point I did will slowly become useless.  It also means that I am more likely going to end up accessing crisis care services in unequipped Accident and Emergency departments possibly in acute mental distress. 

I have done what I can to help myself, especially over the last few weeks including paying for some online counselling to try and get some consistant care.  I hope that when well this will become another useful tool in my Wellness Recovery Action Plan (WRAP) toolkit but at the moment I am just grateful for the support even though I am paying for something the NHS should be providing.

If any healthcare providers read this can I ask you to ask the question “does someone with a history similar to mine really need another assessment and surely some support could and should be implemented quickly?”