My sadness over the system

~ katcopley ~ Leave a comment

Just enjoying a therapeutic chat with a good friend and talking about my sadness that society and the health system we have today cannot accept that some people will never recover from long term mental illness.

Why do we have such a problem with this?

It basically means that the most vulnerable in society who need constant care for their mental health illnesses don’t get this due to a recovery model which seems most worried about patients developing any sort of therapeutic relationship with mental health staff than actually providing a safe space and the consistent care people need.

We can all find examples of physical health conditions which rightly require care for the entirety of someone’s life and this is often provided with the care and compassion that they deserve. It is also fair to say that some people do fully recover from some mental illnesses and that is great and this is not a criticism of them but just as with physical illness, everyone is different.

What I struggle to understand is why the way that physical illnesses are viewed is so different to mental illness?

This whole conversation with my lovely friend was sparked when we came across a lady in her 60’s who was obviously extremely mentally unwell. It was very upsetting to see and it was obvious that this lady needed full time mental health care. I don’t think there is anything wrong with saying that but I am absolutely certain that she wouldn’t have fitted in to a mental health shaped care box that was probably made available to her.

After nearly 30 years of mental health treatment I now do not tolerate any care professional or acquaintance trying to suggest ways that I might fully recover. I often say do you think I deserve treatment for a finite amount of time? Have I used up all my care tokens or will you not want anything to do with me if I don’t get fully better? For me that is how it seems and I make it clear to those that are involved in my care that after all these years I haven’t got the headspace to deal with the criticism and discrimination and shouldn’t have to.

I am one of the fortunate ones who have a support network around me who accept my illness for what it is. When chatting with my friend earlier she said that people often say to her when hearing I am having an episode, ‘what brought that on’ or ‘did something trigger this’. She always responds – that is what her head does, that is the illness. I am so grateful for this and just wish it was the norm and especially for those without the support that I have.

Recently, whilst having a telephone consultation with a community mental health nurse being assessed back in the system after 5 years I made this very clear. I know what I need, I know what helps me, what I won’t put up with and what are serious red flags. If I decline certain support (the most recent being group therapy to manage emotions!) then this doesn’t mean I am refusing help but that I know this wouldn’t work for me and that when you fight on your own without proper mental health support it would be silly to accept help that could exacerbate symptoms. I am now less than a month away from my first psychiatrist appointment in 6 years which seems bonkers for someone on the severe mental health register and also with a diagnosis of bipolar but I do feel this time that I am in control and unlike that lady I saw today able to advocate for what works for me.

Oh and finally, this opinion does not mean I wouldn’t love to be fully better. Of course I would but I am a realist and I am not going to add to my distress by guilt tripping myself over being unwell for longer than a set amount of time that society deems is acceptable!

So please think about how you respond to people who have a long term mental health illness. It can happen to anyone and we are a group of people where the care available is totally unfit for purpose at the moment.

‘Happy’ New Year ……

~ katcopley ~ Leave a comment

I haven’t blogged for ages so thank you to those of you reading this! I think we can all probably say ‘what a year’ and it has been tough for most people and for some people just horrific.

My mental health has certainly taken even more of a battering and I am growing increasingly nervous about January, never a good month for me but not being able to do the things that normally get me through this month is going to make it even harder.

I decided to write a blog post with a difference – one where I look at all the positives of this past year so that I have something to carry me through January and beyond.

January last year started as normal for us, a very busy end of the previous term meant a quiet start to January but not being at work during the Christmas break gives me an opportunity to organise myself, little did we know that these quiet cosy evenings, just the two of us which we always enjoy at this time of the year were to become the norm in 2020.

The first two months of any year sees a huge number of birthdays in our family. By the time of lockdown we had celebrated my lovely mother in laws 70th, all 3 nephew and nieces turning 5, 3 and 1 and a few other family birthdays and therefore lots of gatherings, cake and of course Prosecco! The sudden halt to this was therefore an even bigger shock to the system!

My first positive of the pandemic has to be the increased time spent with Alan. He has been incredible, a huge support, great company and we have probably laughed more this year amongst all the trauma than ever before. We have journeyed together and our relationship is even stronger than it was before. I was so lucky to marry my best friend and there are things we will never stop doing even after covid. We have listened more, talked more and watched far too much television but we did it together!

Not only am I blessed to have Alan I am also blessed to have a wonderful wider family. Many families have probably been grateful to technology this year and ours is certainly no exception. Being able to read bedtime stories to our niece and nephew via Zoom was a huge privilege and joy. Being able to FaceTime our other much younger nephew and see him grow from a baby to a little boy was amazing. There were lots of doorsteps chats and deliveries and we all helped each other. As we were able to form ‘bubbles’ this was a real support especially with Mum and the good weather meant for lots of garden fun! In the summer I was also able to visit France to see Dad and Flo after Dad had been quite unwell in early July. Another opportunity to thank God for the amazing healthcare which we are so lucky to have.

This year did see breaks in restrictions and never had a break in the New Forest or a weekend in Butlins been so welcomed! Not only did they provide a change of scenery but also some normality in between the chaos. We certainly continued to make memories in 2020 – they were just different and in some ways even more special!

In January I started a new role as Church Secretary. It was a rather daunting prospect, not only was I taking over from someone who was a brilliant Church Secretary I also was under no illusion of the huge honour it was to serve God and a very special Church family in this way. For 40 years I had been cared for, loved by and most importantly prayed for by this fantastic community and to be part of the leadership team in this way was at times overwhelming to think about.

Reaching out in faith to all people in our community has always been a priority for the Church and this year has helped us to do this even more than we could of ever imagined. We have come together in the most incredible way, to pray, to worship, to chat, to laugh, to cry and to love like never before. I along with many others have embraced YouTube, Zoom and discovered a love of video editing and got excited with purchases such as ring lights and recording microphones!

I am so proud to be part of Christ Church Petts Wood under the leadership of such an inspirational minister Nadene who has encouraged and loved us so much. Big love also to those within our congregation that have discovered and learnt new tech skills in order to stay connected – you are all amazing!

I count myself very lucky to be employed as we come to the end of 2020. So many people have lost their jobs this year and added financial struggle to the challenges faced this year. We are both fortunate to work for a college but also one that has supported its staff and students very well under enormous pressure and uncertainty. Never before have I been so proud of where I work and especially of my team who have juggled childcare, caring responsibilities, poor health, new university degrees and many other things so admirably! The Teams calls with children lightened often difficult moments!

Zoom and Teams not only helped work and Church stay connected but also provided a link and opportunity to carry on with another of my great loves! Brownies was such a wonderful respite to any week. Even at my lowest ebb in April and May the weekly Zooms with our excited and determined Brownies kept me going! I have admired all young people this year, from the youngest to those at university, they have been through so much but often through the simple things they have said or done have reminded us about what is truly important. It was a joy to see them each week. Apologies to any brownie parents reading this whose houses were turned upside down by Tawny Owl deciding to do a scavenger hunt on a Friday evening via Zoom!

Finally and by no means least I have continued to be blessed by my friends this year. From the weekly zooms and garden meet ups with the ‘Skiv’s’ to being able to attend the wedding of dear friends, to a outdoor meet up with a special couple as they welcomed their baby son. This year has also been the year when many of our WhatsApp groups have doubled! For me this has been a lifeline and also the time to make longer phone calls has been another positive for sure.

As 2020 comes to a close it has certainly shown me so much love and given me some amazing opportunities. Yes it has been extraordinarily difficult at times and we are going to continue to need to hold on to the hope, love and joy from 2020 to get us through the next few months at least.

A bolt out of the blue or brewing for a while?….

~ katcopley ~ Leave a comment

I haven’t blogged for absolutely ages and hope this will be cathartic to me and maybe useful to someone else who might be reading this who is hoping the pain will improve. I am slowly seeing some glimpses of light in what has been a very difficult few weeks so feel able to write about parts of this episode.

For the last eight weeks or so I have experienced horrendous anxiety and a heightened emotional state which I probably firstly correctly linked with the 1st anniversary of the death of my Nanna. In the weeks leading up to this anniversary I was really struggling but as I often tell myself it is perfectly ok to feel emotions surrounding the loss of loved ones and that I mustn’t panic about these feelings. Many other people who are grieving, I am sure feel similarly and sometimes I need to acknowledge and take time to remember this.

However nearly 4 weeks ago I woke one morning with a very heavy black cloud of depression. I cried silently as I tried to muster enough energy to get out of bed to work and fight through the pain that this depression had so hastily engulfed me. For a few days I did my absolute best to hide this. I am always firstly overcome with a huge sense of guilt and often spend ages racking my brains for something I might of done to contribute to an episode.

At the back of my mind was a GP appointment that I had with my regular GP on the following Monday so therefore I had less than a week to get through before I could form a plan with her but sadly not even that could reassure me and it was becoming harder and harder to hide how I was feeling and the desperation just kept building. When the Monday morning came so did a phone call from the doctors surgery cancelling the appointment. I was absolutely terrified as even though I was booked in for the Thursday I wasn’t sure how to get through until then. I did though have a lifesaver in the form of a week of Accompanied Prayer which I had signed up to for that week which proved an enormous comfort and a positive focus and guide during an absolutely awful time.

By the Wednesday of that week I went from needing a doctors appointment to dreading it as my thoughts were becoming more and more horrendous, I was experiencing mild psychosis and I just wanted to run from the feelings but sadly my head always came with me!

I did make my doctors appointment the following day with the support of a friend and she signed me off work for the following week and also prescribed extra medication to help with some of my symptoms. She also urgently referred me to the community mental health team. I am always very reluctant for this as since discharge from the team have always struggled with the uncertainty of having to get back into a health system again and also after many very difficult and unsuitable experiences in accident and emergency this was also not an option.

People often ask me why this is but when you are asked to stand fairly alone without the medical support that might help someone with a long term mental health problem, it would be a risk to put myself in a situation where based on previous experiences could actually make me worse. At that point I thought I had hit rock bottom so therefore turning up at the hospital (which I am sure many people would agree isn’t the right place for a mental health crisis) I would be putting myself at risk. I often wrestle with this as professionals get exasperated with me regarding it but in my view they can’t have it both ways – they can’t want me to take more responsibility for my care but then criticise my decision to keep myself safe.

Since the doctors appointment it hasn’t been a straight road to feeling better. At times I have been even worse and during my time off work we remembered my Nanna a year on which was hugely painful but something I needed to do in my own way and not try and forget it happened. Yesterday I also received a telephone appointment with the mental health team which whilst supportive was sadly two weeks too late and therefore existing more as an additional anxiety rather than something which could contribute towards me feeling better.

So as this blog title suggests I often am asked whether there was a trigger to this episode and yes the anniversary of my Nanna certainly contributed to this, as did the mounting anxiety but the depression was a bolt out of the blue and I suppose this is part of the illness which might be hard for people to understand but as people often say to me, it is harder for me living with it! The other difficult part of this episode is that whilst there was no other obvious triggers it has been like every difficult, challenging and upsetting part of my life’s events has come back to haunt me during this time and manifest itself in flashbacks, bad dreams and anxiety amongst other things which has also been exceptionally difficult especially when you think you have laid that particular ghost to rest.

So now 4 weeks on from the initial depression I am starting to see glimmers of light and I am beginning to hope that things are improving. I am always hugely grateful to those that stand by me, support me, love me and do those small simple things which may seem that way to them but are massive for me. Depression for me in a bipolar episode is a very lonely place and these small but important contacts literally save me. Thank you all.

‘Yes it really did take me this long to get ready’….

~ katcopley ~ 2 Comments

Those people who don’t acknowledge the desperate symptoms of depression, or in fact struggle to acknowledge the pain of mental illness full stop please read on! 

I am known for being pretty quick at doing things, not least getting ready, either to go to work or out for the evening. I often surprise myself how quickly I can get to work if I oversleep! 

For the last week I have experienced deep depression and over the last 3 days this has been very intense. I haven’t been able to function anywhere near what might be considered ‘normal’ for me.  Today I have spent the majority of the day in bed and put all my energy into getting ready to go out tonight. I can already hear people say ‘you can’t be that ill if able to go out’. I am not going to a nightclub or even to a restaurant but instead going to a low key dinner organised by some friends of my Mums. Cancelling plans is obviously an option but often the guilt involved with doing so can be even more difficult than the effort taken to go out.

This morning after another difficult night I woke about 8am but was still feeling  drugged from the night before and managed to rest again for a few hours until 11am. Even then getting up seemed completely impossible. My head felt like lead and the physical pain in my body and head was really intense and then as I started to feel more human the thoughts and flashbacks that have haunted me through most of my waking hours over the past few days hit me again. I don’t seem to feel anything in particular when I am this depressed but instead am all consumed by a horrid numbness that is so debilitating. 

When I finally managed to surface it took a long while before I could manage a conversation. This is such a hard thing for me as I am a normally a sociable person, I love a good chat and even more importantly when I am depressed I need to talk so badly as my thoughts can be even more destructive if I don’t talk them through with someone. When the depression affects my ability to communicate it can mean that the depression is fuelled further by the negative thoughts.

After only being up for a couple of hours I went back to bed. My head hurt from the effort I had made to get up and my body ached so much. We were being collected at 7pm and so I needed to have a shower which I am ashamed to say hasn’t happened in the past 3 days. I thought if I showered at 5pm that would give me plenty of time but when 5pm came I just couldn’t get out of bed and it was another half an hour at least before I managed to get up.

I sat on the bed whilst drying my hair instead of standing up looking in the mirror. Looking in a mirror when I feel as wretched as I do about myself certainly never helps the depression and just adds to my anxiety. I grab a pair of jeans and crave finding a comfortable hoody to feel safe in but instead try and make an effort with a nice top and jacket. I can’t believe that just showering, drying my hair and getting dressed had taken over an hour as each step involved having another lie down to find enough energy to carry on. 

Yes I can do putting on a front, smiling and pushing myself to engage in conversation but only those closest to me know the impact that has, the recovery time that I will need afterwards and only a few can see the pain in my eyes from having to push myself to do anything. 

Depression for me is more than intense sadness. It is the most awful pain that seems to follow me everywhere. If I manage a distraction it only lasts a short time before being brought back down to earth with such a bump. Be gentle with those people you know who are depressed. Try not to judge those who seem to be doing ‘normal’ activities – you don’t know how long it took them to get there.

Let’s keep the #mentalhealth conversation going everyday

~ katcopley ~ 2 Comments

So tomorrow is #timetotalk day which as with all these initiatives is a fantastic opportunity to raise the profile of Mental Illness and especially the issue of stigma which sadly is all too real for many people today. Whilst it is vital for charities to set aside days to focus on and generate much needed publicity it is also important that those of us who are able to keep that conversation going everyday of the year where possible. 

#timetotalk day should not be the only day of the year to talk about mental health but just another opportunity from a possible 365 days each year. I for one will try to remember that every conversation that I have has the potential to change lives. 

Firstly talking about mental health in the same way we do with other illnesses and conditions helps to lessen the stigma that  there still seems to be. Many people have been surprised when I have mentioned depression in the same way that I might talk about asthma and I know that this can make a difference overtime. 

Talking about our own stories and journeys of mental illness can also have a huge impact on those we meet whether at work or even at the local gym or coffee shop. We should never underestimate how hearing someone talk about their experiences could encourage someone else to seek help for someone they know or even for themselves. It is important not to forget what an impact a personal testimony has the potential to have. 

At the Church where I am a member I have just written an article for our monthly magazine to raise the profile of mental health within the Church. I have researched websites that can signpost people to information and support and even if just one person is helped by this then it is definitely worth doing. 

I hope events for #timetotalk go well tomorrow and that it opens up the opportunity for many more conversations during the year ahead. 

My recent bipolar journey

~ katcopley ~ 1 Comment

Thanks to my followers for sticking by me even though I haven’t blogged for ages.

During November last year I very quickly became depressed and also experienced horrendous anxiety. During the last few depressive bipolar episodes I have been frightened by the pace that I have become unwell. This episode was no different and I very quickly developed awful paranoia, debilitating suicidal thoughts and the black cloud was heavier than ever. 

Although the symptoms seem to come on more quickly than they did a few years ago, I am grateful to my GP for also acting just as quickly. She upped my PRN medication, referred me back to the community mental health team (CMHT) and helped to facilitate reduced working hours as part of a reasonable adjustment. My employers were amazing and acted quickly on my doctors recommendation, ensured I had enough support and probably most importantly for me allowed me to carry on with my job which is hugely important during an episode if at all possible. 

It quickly became apparent that the referral to the community mental health team wasn’t going to be as quick as it had been in the previous year. I was hearing from other contacts and healthcare professionals that patients were waiting weeks in all areas to be contacted even when the referral was marked as urgent. I was surprised that the number of referrals had increased so much that the waiting time for someone who was actively suicidal had increased from 1 day in late 2015 to at least 7 days in late 2016. 

One of the consequences of this delay is that the local accident and emergency department takes the brunt of the loophole. Those people who are not quite in crisis when referred by their GP end up crossing that line into crisis and often end up in accident and emergency before they are seen by the community team.

I am hugely grateful to my family and friends who supported me whilst waiting for the CMHT to respond and even though I reached crisis point during that wait I wasn’t a statisitic in Accident and Emergency because of the network I am so lucky to have around me. 

In a weeks time I am meeting with the trust to look at this serious loophole, discuss possible solutions and most importantly see if the issue regarding Accident and Emergency not being a suitable place for people in a mental health crisis can be addressed more successfully than it is at present. 

I want to know why prevention doesn’t seem to be at the forefront of professional’s thinking in so many mental health areas and why there seems to be a reluctance to provide any consistency in care for many experiencing mental illness. I am also interested in the role of the crisis team as I am hearing more and more how the support from some crisis teams is not what it should be. 

By Christmas I had thankfully turned the corner and the care that I received from the CMHT once I was contacted was helpful. As always I dreaded January but it has been a really positive month and the hope that I found at Christmas through my faith and the love and support of those around me has strengthened me even further than I dared hope for 2 months ago.

300 days without depression…

~ katcopley ~ 3 Comments

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. 

Hope ….

~ katcopley ~ 2 Comments

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.

When life throws a few curveballs ….

~ katcopley ~ Leave a comment

I am well! A great place to be and what is even more wonderful is that I have been very well since Christmas. I have coped amazingly well during the early winter months of this year and seem to really feel in tune with myself.

I have had wonderful support and when I have experienced mild anxiety I have been able to use strategies well and not been as phased by set backs as sometimes in the past. Earlier this month I saw my GP and for the first time in years she didn’t make me a follow up appointment but instead let me decide when to make another one. 

This past week or so has though been a reminder of how fragile I am and how difficult it can be to cope with things out of the ordinary. Over the last week an inquest has taken place of a dear friend who took her own life nearly 4 years ago. After such a long time it has been very difficult and a poignant reminder of how serious mental illness is, how unsatisfactory some of our mental health services are and most importantly how wonderful my friends and family are in helping to care for me when I am unwell. It has also reminded me of how instrumental unpaid carers are in the lives of those with mental health illnesses and of course it has brought back to me the lowest times of my life and the times when life was certainly not worth living.

As you can imagine this has left me feeling somewhat fragile and so when I received an email 3 days ago informing me that I needed to reapply for my job I was thrown into a deeper state of anxiety and had to throw every ounce of strength I had into staying positive, supporting my team and ensuring I followed whatever process necessary to apply for the right job in the new structure. This I know is common place in many jobs nowadays but difficult all the same and when restructures happen on a large scale it is difficult to have a personal approach so it often seems very corporate and scary.  I think I am ok and have a job to apply for and hope that the opportunity to outline my skills and experience will prove positive and add to raising my self esteem. 

Although not always easy this last 2 weeks has shown me how far I have come, the importance of my life and even though I had a complete wobble this evening and couldn’t be bothered with trying to be sensible as was just totally exhausted I can still see the light that has been present for the last few months. 

Thanks to all those people who stand with me through the struggles and to all those who support the many others in their struggles. 

Mental Health Care needs a Miracle #inthemind

~ katcopley ~ Leave a comment

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?