Little by Little .... getting our lives back

There has been a lot of discussion on the media and throughout social media about the anticipation greeting some easing of restrictions which we have all grown used to throughout the last 12 months. Having survived a stroke in September 2020 my life has change more radically than I would have thought possible this time last year. What has remained the same for me is my daily use of the same skills I have been using to live in Recovery from long term mental health issues to recover physically from my stroke and to manage the social restrictions of 'lockdown'. With that in mind I wanted to share some thoughts for managing a period of yet more change which started for us in England yesterday. 1. Take your time. As with much of our experience of developing mental health conditions such as depression and long term anxiety disorders, it has taken us some time to adjust to the radical changes to our behaviour over the past twelve months. Given the alien nature of many of the measures taken to protect not only ourselves, but also others around us, we need to reflect and ask ourselves some questions which I admit to borrowing from the day of Reflection on 23rd March. Firstly, what have we gained that we want to keep? For me, as someone who is happy with my own company I have found the lack of pressure to 'be more sociable' has been liberating whilst growing my circle of friends through meeting up online and then making arrangements as one to one walks became my main physical fitness activities. It has been noticeable over the past month that our parks and common walking spaces are again filling up with a lot of groups of people. This, for me, feels uncomfortable. Mostly I have been going into supermarkets with a confidence which has previously been elusive, both mask wearing and social distancing have made going into shops and other public spaces less daunting for me, so in a sense I have been able to venture more often into places I had avoided in the past. 'Going back to normal' is not without its challenges for me, so I need to take my time and adjust to the influx of people into public spaces.

2. Be prepared to feel exhausted. One of my early bosses, an Australian with a formidable zest for life, used to tell me, the only humans who relish change are babies with dirty nappies! Change happens all the time, but more often than not, it is usually natural, gradual and doesn't make us feel completely out of control. For a year, we have grappled with the reality of a virus which it seemed was entirely out of any human ability to control. Alongside that governmental efforts nationally and internationally have seemed to some over the top and to others (usually those with first hand experience of the effects of the virus) not enough and not for long enough. Due to the emotional impact of living with untold thousands of deaths daily, as well as the emotions involved in hoping for something to happen to stop the deaths and illness, we are emerging from lockdown feeling exhausted. Those of us who have managed mood disorders understand that emotions are exhausting. And that means that rushing headlong towards positive feelings may not be the most helpful idea. Take time to grieve what has been lost. To return to my questions: what have you lost that you would be able or want to get back? Be realistic has the past year forced change which when you reflect on it, whilst difficult to go through has been necessary and brought you to a better place? 3. Keep your Connections. Connecting is one of the #5waysofwellbeing and one of the benefits of a period of national mourning and need is that it has opened up opportunity for deeper relationships, because we have been faced with some realities about our own mortality and the limits of our power to control or influence the world around us, on our own. My recovery journeys, both mental and physical have not been done in isolation, a network of friends and professionals have helped me along my way. In the same way, maintaining our health when the crisis is over will depend on us, corporately and in community, continuing to maintain our connections through which we have managed to support one another over the past twelve months. When you can remember to take time to keep up with new friends and friendships made through this time and be grateful for kind neighbours and supportive friends. 4. Keep your awareness going. For months we have waited and watched. Perhaps, we have noticed more about the pressures and needs of our public servants: Doctors, Nurses, Police, Pharmacists, Teachers. As isolation and lockdown forced us to manage our own health and education needs, perhaps we have a greater awareness of what they face each and every day. I hope that it will make us more tolerant of the burdens many people we complain about not doing their jobs, face yet continue serving us. I recently watched a documentary about the life and death of Caroline Flack, in early 2020 before the Covid pandemic exploded. The hashtage #bekind trended all over the world. HOwever, harshness and intolerance seems to be no less prevalent and the impact of social media continues to fuel a high degree of risk of suicide, especially among certain age groups. Just because you have the ability and forum to speak, doesn't mean that you should - unless you have something that helps, rather than damages other human beings. Acknowledging that my behaviour has a direct impact on others around me, is to begin to create networks which can be safer, not only in preventing infectious diseases, but in helping to tackle the epidemic of despair. Before you post or get caught into criticising someone whose shoes you don't walk in, think, what have I learned this year about how difficult life can be for others who are different from me?

5. Be gentle. With yourself, with your family, neighbours and even with those who have had so much responsibility for having to manage an impossible situation, locally, nationally, globally. 6. Go back to basics. One of the changes I had to manage following my stroke was to think about driving again. The good thing I learned was that, having had a clot rather than a bleed, my stroke did not mean that I had to consider giving up my licence and that after four weeks I would have been free to drive again. However, even though my memory wasn't damaged to any great extent, rememberinng to drive did take some focus and effort. I went back to the fundamentals I remembered from learning to drive. I started slowly, waiting for the 'bite' on the clutch and soon, muscle memory took over. As we aim to get back to where we left off, let's look at the basics. What do you need to live a life you believe is worth living? Firstly, acknowledge what we all need to survive and I'm not talking about toilet roll...food, water, sleep, shelter. Then what gives your life meaning? Family, relationships, a faith in something bigger, being able to help others? In a sense, more than anything else 2020/21 has been an opportunity to push 'stop' on the treadmill and to reset, having reviewed what matters. Just because we might be allowed to go somewhere by a certain date, doesn't mean we should. What will rushing headlong back into holidays abroad add to my life, that time spent away from the four walls around me, doing refreshing activities in my own country wouldn't? As with any setbacks in life, we can decide to run away from it and all the lessons we have learned or, we can choose to embrace what the Pandemic has offered to us in terms of shaking us up and showing us what matters and what gives our life meaning and hope.

Accepting Love - The hardest task of all

I think I've shared before a picture of the traumatised child which explains how hard it is for adoptive and foster parents to successfully give that child an experience of unconditional love. A friend who is an adoptive Mum shared it with me and at the time it resonated powerfully with me. When someone has been shown nothing but proof that they are worthless, when a care-giver seeks to pour love into the cup of that personality finds the love running off without even touching the inside. This is because all that has gone before, the trauma itself, the coping strategies and the fundamental frameworks of belief about themselves as worthwhile human beings serves to form an often invisible film stretching over the whole of the mouth of the cup.


I have spent the past ten years of my life slowly working to remove that film from myself. I know that in reality some who have tried to break through it have encountered, not a feather light, flimsy film, which lets in light, but steel shutters. What I have learned to accept in the past few months is that despite learning a lot about trusting others, the key to opening these shutters lies entirely in my own hands. It is not enough for me to acknowledge that love is being given to me, but for me to accept, without reservation or justification that I am loved. There are many moments on the path to recovery from childhood traumas which are paradoxically painful and healing at the same time. No human love is perfect, nor is it without risk.

Because in reality there is no human being who can love us perfectly. But when we begin to accept that we can love ourselves without feeling like frauds, then we can begin to move towards receiving love as it is intended. For me, I know I have shared before that I have a faith in a God who is bigger than me and all my problems and one of the main things that I have learned to accept is that my belief tells me, I am loved because I exist. Simple as that. One of my favourite thoughts of this year has been: 'The grace of God means something like: Here is your life. You might never have been, but YOU ARE, because the party wouldn't be complete without you.'

With healing I can now see that life is not all bad, but there are also good things in life. Some of those good things exist in me and my personality and/or abilities and gifts. And some people, not all actually think I'm worth loving. Again, this has been a long hard path to accept. As I wrote the word 'loving' I battled myself because my instinct was to find a less powerful word, such as 'like', or 'appreciate'. How many times do we stop ourselves accepting love as it is given, by changing its strength in our minds, minimising what the giver has intended? How many times have friends and loved ones tried to reinforce the positive things they see to love in us, and found themselves frustrated by our reverting to our (comfortable) old patterns, minimising what is good in us. 'Oh anyone could do that', or my favourite one 'You're just flanneling me'.

Funny how easy it is to believe in the absolute truth of critical opinions given to us or in our own minds, but how easy we find it to undermine positive praise for who we are and what we do. It's a natural consequence of not being given validation as children. Self validation because an alien concept and a skill we need to be taught later in life.

I have had to look at the negative thoughts and critical voices from my past which constantly circulated in my mind and decide if they are something that I want to listen to, or if I am willing to listen to the (admittedly) strange and novel, voices that tell there is a balance to things. Sometimes I mess things up, sometimes I do really well.

Over the past few weeks I have been wrestling with positive thoughts, because they feel odd and sometimes accepting them means something painful. I am learning that I can do things I never thought possible, that I can build webs of friends and I can cope when the ups and downs of human relationships happen. I am not shaken to my core because I disagree with someone, because receiving love means that I accept there is core of belonging within the relationships which means we can cope with 'falling out'. This is a new experience. Such little blips in reality, would in the past have meant me walking away for fear of rejection. Now they are the warp and weft of accepting that I am loved, which in turn frees me to feel love for others, without fearing the pain of having that love rejected.

So here I am saying, the steel doors are opening and I choose to receive the love that is offered to me. I know I haven't arrived and my recovery means that I continue to take one step forward when I can. As long as the movement continues forward, then I can say that my heart which has been frozen for fear of the risks involved in connecting with others, is melting. If that's sappy - so be it.

The Waiting Game

I'm not a patient person. As I have learned to manage my emotional storms, I'm realising I am an ultimate optimist. If I believe something needs to be said or done to change a situation I want to immediately act to do that. Since 2010, following my diagnosis and entering the wonderful world of mental health services, so much of my life suddenly spun out of my control. I could try to give my perspective on why so much of my experience of waiting has been linked to going on a list to be assessed for suitability for 'treatment' but I don't think or believe that it helps to identify factors that are beyond my control.

Recently I've experienced the same frustrations while waiting for assessment of a physical problem. It has given me pause to consider the things that I do which make that waiting time either painful or bearable for me. There is something in the power of my thinking to either make time seem like eternity or go quicker than I expected. I've realised that rather than being powerless during these times, I can control those things which I have control of. I've recognised a number of ways that I have been able to manage these times better than in the past.

1. EXPECTATIONS. There is nothing worse than time on my hands to make my mind increase or decrease the importance of small things to the final outcome when whatever I am waiting for arrives. If I have waited for two years for 'treatment' the importance I place on that longed for appointment becomes enormous in comparison to the what the human being behind the date is able to deliver. I think this is the most important element to manage so that long waiting times do not become a matter of gambling with how quickly my initial presentation at assessment may deteriorate. Too often waiting periods end up being shortened due to lapse into crisis. Sometimes my self harming behaviour is a way of short-circuiting the process because I feel that if I go on feeling this way much longer, I will literally die. I need some help to get through the heights of emotional pain, so that each of those moments is not necessarily going to end up with an inpatient admission. I need help to create in my own environment a safe place to wait. I wonder if equipping me again becomes part of the triage and assessment stage? This could mean that I don't have an assessment appointment followed by between six months and two years of nothing. THAT feels like I'm in limbo, abandoned, in no mans' land, helpless and more importantly as waiting magnifies my negative thoughts and feelings: not worthy of help.

I wonder if, while waiting for specialist service appointments, there is scope for equipping people with self management and distress management skills. Mindfulness which was core to my DBT therapy has been so helpful in so many waiting times for me. Could it be useful as a tool, among others, to help people manage the time spent waiting (given that the prevailing economic and political realities prevent these times from shortening in the short term.)?

I have noticed that when I break a leg or an arm, while I am waiting for the orthopaedic specialists the emergency staff have measures to support the broken bones, and alleviate the physical pain. Of course no one can remove from me the emotional pain and distress I am experiencing, even when I end up before the professional I have been referred to. No one can fix me. No one can undo my past traumas. No one can stop me feeling this lousy. BUT I can be helped to learn to manage such pain and distress in less self-destructive ways. Can I be offered some first aid for my emotions which can hold me while I wait?

2. PERSPECTIVES. My feelings and their imbalance within me cause my perspectives on the world around me to become skewed. Given the extent of my distress small things had huge impacts on my mental health. I tried two different interventions and waited 18 months before I started my DBT journey. During the time between diagnosis and about six months in the DBT programme I was still trying to remain in my demanding job. My perspective on waiting for treatment and starting treatment was heavily influenced by the sickness procedures which seemed to place some kind of magical aura on the idea that I had started being 'treated' for my 'condition'. The expectation became that because I had two days off a week to attend my group skills and individual therapy, then there should be no further issues from my mental health that would affect my work. In other words, having supported me during the waiting time, my employers then expected me to be magically 'fixed', ignoring the fact that my long term mental health struggles would require long term management, including re-learning how to adapt myself to any work environments, without ending up emotionally exhausted.

If we see our struggles with mental health as tackling pathogens, then we will end up having major conflicts between the needs of people using services and, particularly the medically trained professionals who determine pathways. I WILL blame you if you do not 'cure' me, you WILL blame me if your medications or treatments are not as effective as you had hoped. So many times during my experiences of different interventions I was told I had not made the most of the help on offer. DBT was the first time I was told that if I was not making progress then we needed to review how suitable the intervention was for me.

Another aspect, particularly when waiting and expecting the magic bullet of 'help' is time itself. I had experienced significant trauma from early childhood right up to leaving home at 18. Then again as an adult I experienced rape and sexual assault on two other occasions (as a woman there were other lesser assaults which were just part and parcel of life in the 80s and 90s), last being when I was 40. I was diagnosed with BPD (Borderline PD) at the age of 42 although I had been through many experiences with Psychiatrists, Psychologists, Counsellors of various shades and theories from the age of 15. It is now ten years since my diagnosis. Only five of those years involved regular contact with Mental Health Practitioners. In pure terms of number of hours spent with those practitioners compared to the number of years of turbulence and unhelpful coping methods, including self harm and self destructive behaviours. Given this, it would truly be miraculous if any Mental Health Practitioner was able to 'fix' the impact of so much trauma in my life. If during the time I have to wait for a first appointment I can be prepared to recognise these realities and to accept that, at best, I will have the support and expertise of someone to walk alongside me for a time as I begin to learn new ways of coping.

3. TIME. There is something in our culture at the moment which seems to encourage us all to wish our lives away. How many of us set our sights on our next break from work, be that the weekend or our next holiday. When I am struggling most, I find it easiest to live one day at a time. I have to. I don't have the emotional capacity to imagine or hope for more than one day at a time. When I have been at that stage, I have taught myself to look at moments as more significant than something to be endured while I wait for something in the distant future. If I can focus on each moment as a span of time which I can experience fully, either to be enjoyed or endured, then I know I can survive. And as things improve, those moments begin to lengthen until I can imagine myself engaging in life more than a day at a time.

4. RUNNING AHEAD OF MYSELF. One of the hardest things I face during recovery is my impatience to get to some goal or other. At the moment I am tired of not being able to negotiate the complexities of returning to paid employment. I am managing my condition, but I don't know yet if I am ready for increased hours and pressure yet. Most of all I find the temporary nature of so much of the voluntary work I'm involved in difficult to manage, apart from the uncertainty thrown in every 18 months of having my benefits reviewed. I find the system itself is a major hurdle to negotiate to try to build up paid work. Most of all I face tremendous stigma based simply on the diagnosis I received, having worked successfully in some challenging areas. I have found with small projects and part time work, once I have reached interview or even people have seen me in action, there is usually no problem with my suitability. Sadly for the first time in my life I find that the thing which gives me added experience and expertise in working with people with complex needs, something I previously had paper qualifications and work experience for, means that my application is likely to end up in the bin, without me even being considered a serious contender. This puts a pressure on to prove myself to people who have a skewed view of Mental illness and PD in particular. So, I find myself wanting to change the universe in order to push deadlines which I know are immovable. I cannot make Christmas Day move forward from 25th December if I simply put my tree and lights up. I cannot make Colleges and Universities or potential employers change their admission/application times or procedures. Ultimately, I cannot know if I am ready for more hours of work, until someone gives me a chance. Until then I need to accept that there is a lot about the world of work and attitudes of employers to mental health that I cannot change.

Ultimately, time spent waiting can either be painful and feel like time wasted, or I can try to redeem the time:

- by not focusing on the event, appointment or occasions I am waiting for.
- It helps to go back to basics and try to live one day at a time.
- To admit when the environment is too difficult for me to change.
- To accept that moaning and allowing myself to stoke feelings of anticipation and anxiety will only make the passage of time feel as if it is slowing.
- To notice the positive things about having this time to work on things I rarely have time to work on...such as my yard, my dog, my fitness.

Revisiting Routine

In the past I have written about routine as an important element of recovery here "https://bpdlifeinthemoment.blogspot.com/2014/10/routine-bars-of-protection-or.html" For many, one of the most important parts of treatment or therapy, particularly when it lasts a lengthy period of time, is that it provides and external routine on my life. As well as the natural sense of loss at the ending of the therapeutic relationship and important structure is removed at the time of discharge.

Early in the recovery journey I found it difficult not to immediately go back to the routines I had before I asked for help and finally had to give up my job. Problem was the life I thought I was living was completely different. It had to be, after all the way I had been living my life before had led to me becoming completely emotionally and mentally exhausted.

It took me a while and several months during which there were moments when emotional exhaustion returned because I tried to do too much too soon. Any new skills, or routines, no matter how good they will be for me, can take additional mental and emotional effort, simply because I am still becoming used to them.

Be kind to yourself, has to be the refrain - my broken leg, may have had the cast removed, but the muscles around the healing bone need regular practise and exercise to be built up around the bone, in order to make the most of recovery.

Looking back I think I focused on mastering new and forgotten skills to help me rebuild, in stages. I would identify these now as follows:

1) Keeping 'Body and Soul' together. There are certain tasks, or routines which literally keep us alive. Eating, drinking, sleeping. When beginning to recover from any illness these are essential to keeping the body going, so the mind and emotions can recover effectively. I remember the time when getting out of bed, making regular time for meals and noticing when I was thirsty, actually used up all the energy I had. I would sleep in the middle of the day, because, emotions are exhausting - what told me that this was necessary was the fact that I could still go to bed at a routine time and sleep despite having had naps.

2) Building Self Management. DBT teaches me skills over a sustained period of time. The challenge without the group skills and one to one therapy is to continue to build habits which help me to maintain management of my condition. Because skills such as Emotional Management, Mindfulness and Relationships have routines built into them, the maintenance of them, helps to create a routine in itself.

3) Finding Joy'Glimpses of Glory' is a way a friend of mine heard about last year, when a group of friends were reflecting on the past year just after the Christmas Holidays. Since 2016 when both Brexit and Trump blew onto the world stage, there has been a tendency when reflecting to focus on the negative in the world around us. Instead, looking for 'Glimpses of Glory' encourages us as we reflect to ask that we see the moments of good, the joy we find in the small things in us. When we are rebuilding after a period of illness, we may struggle to see the positive, it can be a symptom of emotional exhaustion. In spite of the fact that I struggle to socialise, I know that there are nurturing relationships and friendships, which I need to build into the fabric of my life. Again, it begins with a small step in opening myself up to friendship....relationships take time to build, but by making meeting up part of my routine, I can begin to make a path out of isolation. To find people who may be good for me, I need to acknowledge the things in life that I enjoy. Where are my Glimpses of Glory....then the next step, are there others who share my joy in these things? It's hard to walk in somewhere new, but when I have a focus, a class, a hobby, a sport, it can help to distract me. It also helps me to connect with the community around me, if I can help in simple ways by volunteering - there are so many opportunities starting with making brews and washing dishes at your local parent toddler group, for example.

These are just small ways that I have rebuilt a routine, which is a safe structure in which to build a new life, where I can manage my condition effectively. Recovery is not a straight line, there have been hiccups and setbacks along the way. But the trend has been towards a more meaningful life for me. Looking back I wasn't ready to move on stage to stage until, the effort needed to maintain new routines has reduced - moving on overlapped at times - life isn't made with beautifully straight edges, like me, the pieces of my routine jigsaw, can be messy!