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.
I write this blog after being well for nearly 7 months. This is the longest period of wellness that I have had for years (maybe even since my diagnosis) and gives me real hope for the future. Just 9 months ago I was nearing the end of an awful year as far as my bipolar goes and I was not sure how much more I could take. I had lost hope.
Over the last 7 months I have thankfully found that hope again, it hasn’t been easy and I have had to make some difficult decisions, changed things in my life, have had hard conversations with myself but the hope has returned and that is just the best feeling!
Life isn’t really easy and carefree but it is good, fulfilling and I am very happy. I do have to give myself a reality check often (sometimes daily) to monitor how tired I am, how much sleep I am getting, whether something I want to do might not be the best idea. I have to avoid things because they might lead to increased anxiety which in turn might trigger an episode and some days I am definitely still walking on egg shells. But having said all that, the hope I longed for at the end of last year has returned with the help of my family, friends and for the first time some superb mental health care.
After a turbulent few days as a citizen of this country I wish the hope that I have found for myself could somehow be transferred into the lives of everyone in the UK. Let us celebrate the fact we are so fortunate to live in a democracy and remember those with no hope and no chance of ever having a vote or having their voice heard. Let us unite in hope and try and bring some peace, compassion and love into the most difficult of situations. Let us celebrate our differences and not let politics divide us.
None of us know what the future holds in this great country just like I don’t know what the future holds for me and bipolar. What I do know is that hope can return and change situations for the better and for the moment that is what I am holding on to.
This week the BBC are screening quite a few programs as part of their ‘In the Mind’ series.
I will be tuning in to see the programs, and this weeks programs have also coincided with a ‘Taskforce’ report into the lack of good mental health care available and references to the ‘Cinderella’ service are widespread.
As a NHS trust Governor I am all too aware of the pressures within mental health care and only in the last year have I personally received good crisis care after being under mental health services for years. NHS Trusts are having to drastically change the way they offer services to save money and not only does this mean there is a postcode lottery about who is able to accessgood care but the system is so stretched that if too many people are accessing the service at a particular time then people living in the same area can have hugely different experiences.
On recent visits as a governor I have been encouraged by what I have seen which have also backed up my own experiences in the past year, but I realise that this is sadly not the case for the majority of people I meet and speak to. I am hearing everyday how in every part of the country people are waiting months for mental health care, receiving inadequate crisis support and inpatient care that is far from therapeutic.
So television series and media reactions to reports are all very well and certainly put mental health care at the top of the agenda, but how long for? How long will it be before this weeks television is a distant memory and the people that feature in documentaries are long forgotten about? Will the taskforce reports bring better care for those who need it most? So many questions that I have asked so many times.
Like many people I have been campaigning for improved mental health care for years and have sadly been on the receiving end of mental health care for 20 years. I have seen the increase in awareness raising of both mental illness and the lack of care avaliable but I have yet to see much change. Will this week be the start of something different and more positive?
20 days ago I blogged about how January had started very well. The depression had lifted quickly and although I was walking on eggshells I was coping very well. Recently I had thought that my bipolar episodes were becoming much more seasonal but being this well in January has made me realise that doing all I can all year to stay well is vital as the bipolar doesn’t necessarily have a pattern to it. January continued in this positive way!
Today as January became February I saw my GP and we reviewed my care and crisis plan as I always do after a bad episode. For me it is important to look at what helps me, what doesn’t help, what can exacerbate my anxiety and after this episode it was important to document the support I had received from mental health services. This time the treatment was excellent and in case I am unable to communicate this in the future it is vital that this is documented somewhere. For me having a long term mental illness is just like a physical illness and the monitoring of my condition is so important.
Even though I am not scheduled to see my GP until after Easter I know exactly what I need to do if things become difficult in anyway.
So January was great! On Saturday night I went out in London and travelled on half a dozen tubes, plus a London bus and it was such a good night. My anxiety was minimal and I enjoyed the whole evening. There wasn’t one point that I felt I wasn’t up to it or that the bipolar was preventing me from enjoying myself to the full. January ended with a birthday party to celebrate my niece’s 1st Birthday which is this week and it was a perfect end to a great month.
I am so thankful for this period of wellness and I am committed to do everything I can to stay as well as I can but always remembering as with many illnesses that it isn’t often in my control and bipolar can affect me when I least expect it and sometimes with no trigger. Remembering this is not my fault is something I will try and remember as even being as well as I do today that isn’t always an easy concept for me.
Let’s hope that February is just as good!
January has historically been a very difficult month for me. I know that I am not the only person who finds January hard – the dark mornings and evenings, the cold weather, the quiet after the Christmas rush and often having less money can be just a few factors that can contribute to increased anxiety, negative thinking and episodes of depression and other mental illness.
January became all the more difficult for me when my Grandfather passed away five years ago on the 14th January. He had a huge positive influence in my life, he acted as a father figure, guide, confidant and friend and I still miss him terribly.
This year for the first time in what seems like years I feel pretty together and relatively well in January. After what seemed like an impossible 2 months the depression has lifted quite quickly and I feel stable and the anxiety that had seemed like it would never go has improved also.
I am doing everything I can to stay as well as I can, I am probably being over cautious and it does feel at times like I am walking on eggshells. I am avoiding triggers wherever possible – just last week I decided not to attend a funeral in case it acted as a trigger. I am working very hard at work but having a proper break every day and eating well. I am enforcing some rest into everyday – today this is having a bath whilst listening to the radio. All this positivity isn’t always easy but I am doing my best and hoping that it is enough to keep another episode at bay.
I am enjoying things again, singing, meeting friends, planning travels, these are just some examples and yes being back in a routine helps with all these things. I am so grateful for the support I have had whilst unwell but also for the support I have now, at this moment, when I need reminding that having the odd wobble doesn’t mean the start of a downhill spiral and I need a gentle nudge in the right direction to take some time out!
I am also eternally grateful for the support of my Grandpa, who helped me enormously during some of the most difficult times of my life. Rest in Peace, love always.
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!
So today was a huge first in I don’t know how many years. Yesterday afternoon I received a call from the community mental health team. The call was an acknowledgment of the referral by my GP only 36 hours before, so to say I was stunned and impressed was an understatement.
The call yesterday was fairly brief but had a few simple aims, firstly to establish my safety, secondly to ensure I had contact numbers of support if I needed them and lastly to arrange a time to call me today for a telephone assessment.
Today the same person (note the consistency) called to assess me. This followed a fairly typical mental health assessment format but was so different to ones I have experienced before. It was carried out with understanding, empathy, support and also helped on a practical level as well. I have to admit I was very sceptical but then who would blame me after the last few years of one bad experience followed by yet more bad experiences. I was able to be completely honest with the person on the phone, I was able to tell them my deepest fears and even though they felt they hadn’t done much at all I was eternally grateful for this support at what seems an impossible time.
The other thing that made such a difference was the honesty of the person I was speaking to. Never has a mental health professional said to me: ‘I will try and call you back today after I speak to the doctor, but if I don’t it may be due to an emergency or not being able to speak to the doctor but I will call on Monday’. A typical scenario is that they say they will call back and don’t and then deny ever saying that!
Well he did call back (yes the same person)! He checked again I had all the numbers I needed and understood my fear of going to accident and emergency and seemed to join me in a determination to try and stop this from happening. He had spoken to the doctor and has some ideas and for the first time in years I am even willing to discuss a possible new medication.
He is calling me on Monday and we are reassessing the situation then. In the meantime I am so grateful for what he has done over the last couple of days to help shine a bit of light and hope in a rather bleak situation. It is very rare for the professionals to be the bearers of light and hope – this is often only generated by my amazing family and friends!
Not only is this a first in so many years during a crisis situation but also I was properly listened to by a professional. I wasn’t judged because I work or because I could articulate what was happening to me. My distressing symptoms were acknowledged and not once was any aspect of my illness belittled. It will obviously take a while to gain my full trust, after so many years I have learnt to protect myself and to be cautious but feeling like I do, this support is hugely significant.
So yes the small things do matter, I ensured that I told the mental health worker exactly that today. Sometimes things can get over complicated and the wrong help given as a result but today I received what some would consider a small amount of support but it made the world of difference.
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.
Healthcare is full of them! However the more I chat with people who experience mental illness the more I see a disparity between giving a mental health diagnosis and a physical health one.
Whilst I appreciate that mental health is often difficult to diagnose and I recognise all the challenges that could come up I still think that some professionals are not taking the diagnosis of a patient seriously enough.
This seems to be a particular issue with people who have been diagnosed with bipolar but then because they don’t respond in the way that professionals expect or have strong opinions regarding their care they are then seen as difficult and sometimes without consultation their diagnosis is changed. What makes this worse is that whilst it would be rare for a physical diagnosis not to be discussed with the patient or next of kin, I have lost count how many people I know have found out about a new diagnosis by letter or by seeing it on a computer screen at the GP surgery!
It is so sad how some professionals can’t accept that a mental health diagnosis does not mean that people can’t be or aren’t capable of being fully involved in their care plan.
The anxiety of this kind of surprise misdiagnosis stays with people long after the situation is rectified (which can take months or even years). I still cautiously scan the GP screen to ensure the correct diagnosis is showing and every appointment with each professional adds to my anxiety because of past experience.
I am well aware that this is not a practice that all mental professionals follow however I hope that those that do this realise the implications of their actions and those that sensitively discuss diagnosis after a full assessment encourage good practice with their colleagues.
This is an important step in ensuring parity of esteem between physical and mental health and one which could benefit the mental health of so many people.
As you maybe aware I am a governor for the local NHS Trust which provides the mental health services over 3 local boroughs. It is the NHS Trust for mental health services that I have received although at present I am not under them. I asked to visit all 3 of the trusts inpatient acute mental health units both for working age adults and for older people. This was actually quite a challenge considering that I have myself received treatment at one if them many times before.
I am pleased to say that I was on the whole very impressed and actually think that there have been great improvements since I was last an inpatient especially around care and compassion, ward rounds, communication and activities on the ward. There are obviously many challenges regarding bed management, shortage of beds, staffing, consistency of staff, bank staff, agency staff etc …but I was struck by the dedication of the staff that I met.
It seems to me that once someone gets into hospital things are in general improving but the biggest challenges and areas of concern locally to me lie within crisis care, accessing services for the first time or after a break, liaison in accident and emergency departments and gp’s, support on discharge etc… Whilst it is positive that patients spend less time in hospital I am concerned that they are discharged too quickly because of a lack of beds and that community services are not meeting their needs effectively.
I am therefore committed to keep crisis care at the top of my agenda as a governor and especially the liaison service in accident and emergency as I have experienced such poor examples of care here within the last year and it desperately needs a rethink.
I feel privileged to be a governor and to be able to visit the wards and talk with staff and patients about this very challenging and important area of care.