So Christmas is over for another year!
As I was so unwell during the month or so before Christmas I was very worried about how I would cope and whether I could even enjoy myself and build on my positive Christmas memories that I had been doing so well to create over the last 5 or so years.
As a Christian I also wanted to be able to participate in the Church Christmas programme which included singing and helping to lead the children’s Christmas Eve service which I enjoy so much but that can be so hard when I am unwell.
I also had the added difficulty of experiencing awful anxiety and panic in shops and other crowded places which means shopping and some social occasions also were out of the question.
So with a few very supportive family members and close friends and the trusty internet I prepared for Christmas practically and with the prayers, support and love of those at the Church I managed to participate fully in the Advent and Christmas services and with my amazing family I also enjoyed and have treasured memories of a lovely Christmas Day.
Yet this has also come at some cost. I have written before about an Oscar winning performance and how in some ways it is massively important for me to keep going with things, put on a brave face and to some people pretend all is well but on the other hand I have to get the balance right as the consequences can be hard to cope with if I don’t.
On Christmas Day evening about 10pm I felt this wave of panic and exhaustion. I put it down to overindulging and tiredness and I had such a lovely day that it didn’t spoil it in anyway. It did though mean I was worried and woke up a couple of times that night in a panic and when I woke on Boxing Day I wouldn’t of been able to pretend to anyone. I was depressed and every part of me felt like it weighed 20 stone. I was so relieved that I had made no plans as getting out of bed took hours and leaving the house was a no go area. I couldn’t even get dressed but I battled to do a few jobs, setup my new laptop and did cook a meal but everything took twice as long as normal but I tried to convince myself that exhaustion can have this effect.
Yesterday was not a lot better although I achieved jobs in the house but I couldn’t step outside and realised I had not got dressed since Christmas Day evening. The thought of seeing anyone apart from my husband or my mum was frightening.
This morning I knew I had to break the cycle for my own peace of mind and so I got up and went to Church where once again felt so pleased that I had done this and fought the illness in my own small way. Yes I sometimes smiled when I really wanted to cry but it gave me confidence that I thought I had lost. I even managed a trip to little Waitrose and cups of tea at Mum’s & a close friends.
I some ways the Oscar performance both before Christmas, Christmas Day itself and today meant that I came down with a crash but it also gave me a boost when I really needed it and that will probably help in the long run. I now have a week before I return to work and I hope the small positive steps continue and the depression lifts for longer each day.
bipolar
One of the hardest weeks ……
After one of the hardest weeks I have had this year I thought I should blog as hopefully it might help to get things down and I haven’t blogged for ages! Last weekend I was struggling but trying to stay positive and I had got my sleeping into a sort of routine again. I had a fairly positive weekend – caught up with friends, went to Church – the depression was coming and going and my anxiety was also still causing problems. Whilst in Church I realised that music was slightly distorted and that I occasionally heard sounds that others didn’t.
On Sunday night I hardly slept at all and probably going into work at all on Monday was not a great idea. The depression was so bad it felt physically painful and my head was full of so many negative and painful thoughts that I couldn’t focus on anything.
I was only working till 3pm instead of 5pm as it is one of my reasonable adjustments when I am not well but work is also very stressful at the moment and so I knew I needed to take a break. I felt as though I couldn’t work out what was real and what wasn’t.
I am only under my GP who is brilliant and I knew that I couldn’t face A and E so therefore I put all my strategies into place and had 2 days off work which is very unusual for me. It did though mean that I could take PRN medication at night at slightly higher doses than normal without worrying about being dozy in the daytime. I did worry about being on my own during the day but I saw people and friends and family kept in touch.
I spoke to my doctor who then agreed that getting back into a routine might help so I went back on Thursday slightly more rested but with a fit note to work till 1pm until I finish for Christmas.
It has been a very dark week, one where I have wanted it all to end on many occasions but there is a bit more hope this weekend and I have shown that I am coping better with such severe symptoms and also made the right decisions as far as my care was concerned.
I am massively grateful to those who have sticked by me this week – hoping I can look forward to Christmas and a well needed rest.
Autumn Anxiety
I have not posted or even tweeted much for a while as I have been very busy with work but also dealing with increased anxiety. This is mostly because work is very stressful and I am struggling with the massive increase in pressure and uncertainty which every working day seems to bring.
I am experiencing physical symptoms like a racing heart beat, palpitations and the anxiety comes in great waves which can also catch me off guard. These symptoms along with worry and panic don’t make for very comfortable nights or for that matter days.
I am also anxious because I have been well for so long (since March/April) and this period of ‘wobblyness’ comes at what is always a difficult time of year for me. October and Autumn/Winter in general has many painful memories and often, although not always, the most likely time for a relapse. I think being scared of relapsing is one of the biggest factors in my anxiety and one that is hard to rationalise but talking about it certainly helps.
As ever I have put in place my WRAP and whilst I certainly don’t need to step into full blown crisis mode (far from it) I can be proud that I now have the coping strategies to acknowledge and deal with potential difficulties earlier than ever before.
I also have lots to look forward, starting with a holiday in France in a weeks time, a short break in November and a lovely family Christmas. Small steps are definitely in order!
A very interesting visit in my role as an NHS Trust Governor
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.
My latest campaign – why do Mental Health consultants change diagnosis without telling the patient?
Just to clarify this obviously doesn’t apply to all psychiatrists as I know there are some excellent patient focused professionals out there but this has happened to me twice and I am hearing more and more stories where this is occurring.
In my experience I have only found out about the change in diagnosis by receiving a copy of a letter which was being sent to my GP. Each time I have battled to get the diagnosis reversed and been successful but I shouldn’t have to do this and neither should anyone else.
I realise that sometimes patients may be distressed and therefore in my opinion it is even more important to ensure this sort of subject matter is communicated at the right time and if necessary while the patient has appropriate support.
The most common occurrence of this seems to be in patients who have a bipolar diagnosis and then suddenly with no warning they find themselves with a personality disorder diagnosis. In some cases this might be correct but in quite a few this isn’t and I have felt in the past that I was given a new diagnosis as an excuse for being discharged from the system.
As I said I was able to get my diagnosis changed back but others aren’t so lucky and therefore people can be left without vital treatment and support during really difficult episodes.
The other alarming factor in this is that people who are bipolar and able to argue their case or stand up for themselves are seen to be obstructive and unnecessarily angry and this can be what a new diagnosis is primarily based on. This in my opinion is very short sighted and in some cases dangerous.
I would like to hear from people who have experienced this and also from professionals so that awareness of this can be raised.
Lets fight to ensure high levels of patient communication within mental health.
Loving the sun but not the short sleeves and inevitable questions
So far the summer of 2014 has been kind weather wise. Long hot days and an opportunity to wear some of those clothes that might not venture out of the wardrobe for 48 weeks of the year! I love the sun, it does help my mood and I also love wearing summer clothes but I dread the questions and stares about my self harm scars. I started self harming when I was only 14 & only stopped a year or so ago and I have many scars on my arms, legs and even my stomach. My legs are actually not that noticeable but my arms are and so I often wear long sleeved tops in certain situations when it is really too hot to do so. If I do wear short sleeves I am constantly worrying about answering difficult questions, offending people or triggering others.
I run a Brownie pack and never wear short sleeves and often boil as a consequence but children are inquisitive and I have had enough of difficult questions.
Over the past few years I have become ‘braver’ but at work I always wear a cardigan or a jacket and most of the time this is because I don’t want others to feel uncomfortable but probably I am embarrassed even though I know this is part of who I am. Maybe a question would get a conversation going and help someone else in the future?
I suppose with time the scars will fade more and I will become more comfortable and hopefully there will be summers in the future that won’t be so difficult.
Birthdays – from dreading them to enjoying them! #recovery
On Thursday it was my Birthday, a day that in the past would have maybe been horrendous or I would of gone through the whole day pretending to enjoy whatever I was doing when inside I was willing everything to end.
I sometimes wonder what has changed, a birthday even 5 years ago was not that enjoyable.
I suppose the main thing is that when I was much younger I really had little control over my birthday. Family events were difficult for many reasons and I craved so much the ‘normal family’ celebration that I was always disappointed or in some cases completely traumatised by the days events. My birthday always fell in the school holidays and when I was younger I often wished it didn’t.
Going out for a meal for my birthday was also something I didn’t enjoy, I had (and possibly still do have) an ambivalent relationship with food and because of our family setup I would have more than one intense meal out which I rarely could fully enjoy.
Over the last few years I have been able to look back and recollect some good birthdays from my childhood/teenage years such as a party in my garden for probably my 5th birthday, celebrating turning 10 on Brownie Pack Holiday & turning 17 whilst on holiday with the family during a stable period. All of these have taken time to remember as often the bad times crowd the good ones.
During my adult life illness has often plagued my birthday – if I have been unwell I have just wanted to shut myself away or often made myself 10 times worse by pretending that everything was perfect. If I have been ok I used to spend the lead up to my birthday worrying I would get ill and therefore spoiling it not for me but for those around me who go to so much effort.
So what is different now – if I am unwell I can often eventually say I am and I am under no pressure to do anything I don’t feel up to doing. Yes some people will be disappointed and that does throw up some guilt but on the whole I feel so much more able to be in control of what I want and need. I also feel that in the past I thought I didn’t deserve a birthday, I certainly hated receiving cards or gifts of any kind as felt so unworthy. I still find this difficult but I can enjoy it and this is more evidence of how far I have come.
Birthdays are also only 1 day, a day that could happen on any day and are often a chance to catch up with people. Trying to relax is something I find hard but I am starting to do this and last Thursday was definitely a birthday to cherish!
Dealing with stress at work, my survival guide!
As some of you may know I am dealing with huge increased stress at work at the moment and obviously with a diagnosis of bipolar I am scared I am getting ill or may get ill in the future. I am though lucky that at the moment I am very well and so I have been able to put some strategies in place to safeguard myself and to also go someway to stop being so frightened.
One of the most important things I have done is to recognise the symptoms of stress and deal with these as they occur. I have felt my anxiety rise which is probably the most frightening symptom as I often experience horrendous anxiety when I am ill. I have used the same coping strategies as I do for any anxiety I experience and given myself praise for coping with the anxiety (something I wouldn’t do if I was ill)!
I have recognised that stress is serious and just because it isn’t a bipolar episode I still need to take care of myself and recognise the symptoms. I have kept in constant contact with my doctor and asked friends and family for their reassurance, advice and support.
I have also drawn on support at work. Whilst certain people or situations have caused stress I also know that the organisation have procedures and policies to assist where necessary. I have done everything I can to make the time at work easier and drawn on HR support, team support and support of my close colleagues where I can.
I have used my WRAP which really comes into its own in times like this and it is even more important to take care of oneself and the mundane eating, sleeping etc are vital. Last week I wasn’t sleeping that well because it was hot and so I took something to help me sleep after just a couple of days as I knew and recognised that sleep was even more important during this period of stress.
Last weekend has also given me huge confidence and something to remember during the week that has followed. I took 16 Brownies to the Zoo, helped lead a Church parade and Messy Church and I felt fantastic! If I was ill the whole weekend would of been a massive struggle and at difficult times during this week I have remembered this. I have found that because I have a diagnosis of bipolar certain people have said I must be experiencing a bipolar episode when I have raised concerns over the stress I am under. When this has happened this week I have been able to remember last weekend and even tell people what I did and how I felt which has given me and others the confidence that I am not experiencing bipolar symptoms.
It hasn’t been easy and I am exhausted, emotional and sometimes physically unwell but I am taking a day at a time, doing all I can to take care of myself and can draw strength from the last few weeks.
Would love to meet those who gave me a hard time when I first became ill…
Today I was feeling nostalgic! I went somewhere that I hadn’t been for a good many years and when my life was completely different. This made me feel so many different emotions. Firstly I thought of how far I had come, how lucky I am and that the friends I have now are true friends who support me 100% and I certainly don’t need to worry about any stigma when I am with them. This has come about because of many factors including increased awareness of mental health in the UK as a whole, people often knowing more people who experience mental health problems because of increased disclosure and probably in my own friendship groups people have realised that sticking by me isn’t all bad news!
Today also made me think of the ‘friends’ I lost, the friends that visited me once in hospital and then run away, the friends that didn’t believe I had anything wrong with me and the friends who even said I had lied about my childhood experiences. I am sad as I would of liked to have longer friendships with more of my friends from school, I am sad as I am sure some may have experienced mental health problems themselves or within their families and I would liked to have supported them and I am sad because I can now for the first time in years say I am a good friend to people and I really value my friendships and my friends.
So yes I would love to meet some of my friends from school, not to give anyone a hard time but to continue to make people aware of mental health illnesses and keep the conversation going.
Haven’t blogged for ages … This is why!…..#uberbusy
I haven’t blogged for absolutely ages but I have had the most amazing month! Firstly I am well! Really well – no depression, no hypomania just steady … calm and well! Not only that I have coped with being ridiculously busy, quite a bit of stress (good stress!) and the odd panic attack in a way that I haven’t coped before.
As some of you may know I am a Christian and very involved with my local Church. I first went along when I was not even a year old and 34 years later it still plays a huge and wonderful part in my life. I am now an Elder and run the Messy Church with my sister in law amongst other things. I was married in the Church 5 years ago which was the happiest day of my life and the church has journeyed with me and supported me during every stage of my life and especially through my bipolar diagnosis and traumatic life events. This amazing fellowship and congregation of inspirational, devoted friends has just celebrated its 75th anniversary and boy have we celebrated! It has been wonderful to remember the laughter, some tears and worship that has taken place within the Church and been lovely to celebrate with the local community and members past and present. As the Church looks forward to the next 25 years or even 75 years I am also able to look forward knowing that I have the most amazing support network in place starting with my husband, family and friends and am so lucky to have the Church as a constant support as they also learn more about mental illness and as the stigma and barriers surrounding his sometimes difficult topic are broken down by friendship, fellowship and prayer.
Last weekend after the Church’s celebrations were over I joined with 47 others to celebrate the 50th Wedding Anniversary of a very special couple. Carole and Mike welcomed me into their home, family and friendship groups nearly 15 years ago after Carole was my tutor at college when I returned to re-take my a’levels at the age of 19. This followed my first hospital admission and I was so unwell. After supporting me at college Carole and I became friends and she has been there through so many difficult times and spent many hours in accident and emergency and psychiatric hospitals with me as well as providing me with somewhere to live at times. As I have slowly journeyed through recovery and got better at managing my episodes Carole has been there and helped me learn so much about myself and my illness and had been a major player in helping me get to where I am today. Last weekend 48 of us celebrated at Butlins and I am immensely proud of Carole and Mike, and their love for each other and for their family and friends is an inspiration.
The message from this blog for me is a reminder of the wonderful support I have, the people I have rooting for me and the fact that at the moment I am doing well and that taking a day at a time is the way forward for me. I am well at the moment and yes I am terrified of getting ill but I need to live in the now and I am going to try so hard to do this.
Massive thanks to all my family, friends and Church fellowship – love you all.
My Journey through the world of Mental Health 