To blog or not to blog?
Borderline Personality Disorder
Rosalind, 13th October 2014
To blog or not to blog?..That is the question!
Rosalind here, this is the first ‘post’ to our blog that is going to make it to becoming ‘live’.. I initially had started writing posts back in May 2014 for a blog and it just did not ‘feel’ right, none of them made it to press. The reason, in part, is because I think on one hand I wondered who on earth I would be writing for, I do not have an immediate readership and felt completely un-important, my opinions and thoughts un-interesting and of no help to anyone. The ‘value’ of my opinions is up for debate and the interest-o-meter is awaiting some sort of movement on the dial..
What I concluded after writing around seventeen posts, is that I wanted to help people but was not convinced that my voice or experiences alone would help. Actually that is not entirely on point, I felt that I was not ‘stable’ enough to remain consistent to daily posts.. and the ‘ramblings’, whilst in part cathartic, just was not getting the valuable information I felt I wanted to pull together for our visitors. What I wanted to achieve is a resource that would provide information and support for those either suffering with a BPD diagnosis or someone affected by this disorder. This was the birth of monarchbutterfly.co.uk as you see it presented to you now. It is an information portal as its primary objective and a platform to shared lived experience as a secondary objective, however I do ‘feel’ that both are equally important.
It is our hope that anyone affected with BPD will join with us in sharing our way towards freedom, understanding, acceptance and recovery from this Disorder. Here at Monarch Butterfly we believe that this will come via two methods:
Firstly via our acceptance through understanding, this comes through sharing our experiences and using our commonality that is Personality Disorder to strengthen our purpose.
Secondly via getting interested and involved in research and advancement of research. It is our belief, certainly my own, that Borderline Personality Disorder is an ‘after thought’ of something that was brewing far, far earlier, for some (like myself), that would have been around four or five years of age. Contrary to many schools of thought and opinions out there, BPD is not necessarily a by-product of someone who has been abused in some way.
‘Hyper sensitivity’ is a fertile breeding ground for BPD, Personality Disorders and in fact, many other mental health difficulties. If there are components missing within our developmental stages and these are not identified relatively early on in life that can introduce a culture that brings difficulty associated with self identity and awareness, ability to self sooth when presented with hardship and a host of challenges, effectively qualifying a BPD diagnosis. Read more about the current qualifying criteria for a BPD diagnosis on our BPD page.
Below are the seventeen posts that I wrote and decided not to publish, I have listed them in chronological order. We are now going to run a separate ‘blog’ on the back end of Monarch Butterfly. Any further posts made to our blog may or may not be dated dependant upon the nature of that post.
I sincerely hope that it helps someone in some way, just one person feeling a little more hopeful by visiting the blog or website is well worth it, I hope that is you or someone that you know.
If you read some of the entries please forgive me if there are any errors, spelling or grammatical, in the theme of keeping it ‘authentic’ I decided to post within on an ‘as is’ basis. If you have any comments or opinions as I post away over the coming months please do use the ‘leave a comment’ option below or you can contact us directly by visiting our contact us page.
Post 1 May 6th 2014
Welcome to ‘Monarch Butterfly’, I am Ros, based in London UK, I will be the main contributor to this blog and website alongside some input from the perspective of my beloved husband (and ‘carer’),Carlton. The main agenda and topic for discussion is that of ‘Borderline Personality Disorder’ (BPD). Why? I am diagnosed with BPD and throughout my journey have encountered less than ‘adequate’ service and want to be part of a proactive movement to bridge this ‘shortfall’.
This is my first ‘post’ to the ‘Monarch Butterfly’ blog, if anyone ends up reading this, greetings and thank you for visiting. This post will be rather academic I am afraid because, actually, I am not ‘ready’ to start communicating from ‘the heart’.
Actually that is not entirely true, speaking from the heart is no problem for me, having the confidence and beating that deeply ingrained self sabotaging demon on my back is more of a realistic reason for me not starting much sooner. I am a starter and find it difficult to be the finisher, needless to say this first post is a little ‘hard’.
I have been working on the ‘look’ of the front pages (website) and waiting for the ‘right time’ to start posting. it is becoming increasingly obvious that there probably won’t be a ‘right time’ for a long while yet. I have a ‘Borderline Personality Disorder’ diagnosis amongst the commonly co-morbid issues associated with BPD, depression, anxiety, agoraphobia that so often will plague ‘the Borderline’.
I am sitting in Costa Coffee writing this, it was my intention to spend a couple of hours working on the back end of the website but events from this morning have kicked my arse into gear. I am sick to the back teeth of ‘mental healthcare services’ not being structured in a way that supports the service user and in some instances not even structured well enough to meet the needs of the healthcare professionals.
In my future posts and on my website ‘about us’ pages I will give a little background about my experiences and observations but to focus on this morning alone. I was on my way to a CPA meeting with the doctor (resident Psychiatrist) I see all but once every three months. Ten minutes prior to the appointment I received a telephone call to say that the meeting needed to be cancelled as the doctor has phoned in sick! CPA (Care Programme Approach) for any of you that are not familiar with this term it is a particular way of assessing, planning and reviewing someone’s mental health care needs. Being physically sick happens to the best of us, I know all too well. The issue is not that the Doctor is sick, it too is not even because the appointment has been cancelled. TEN MINUTES PRIOR IS THE ISSUE!
Upon me discussing this with one of the team within the services the ‘defences’ were up immediately.. You know, the usual.. ‘people get sick’, ‘we called as soon as we knew’… I reiterated that there needed to be a ‘proactive approach’, if something does not work too well, address it and improve it for goodness sake, we are on the same team, aren’t we? There clearly needs to be a far better method of communication between the healthcare team that would have enabled them to inform their ‘patients’ PRIOR to leaving out this morning!? The comedic element to this too is that we received alongside one phone call, five texts confirming and reminding me about the appointment! That’s a comedy sketch right there.
Let me put this into perspective, I have previously made an official ‘complaint’ to the healthcare trust at local level and also directed this to the Chief Executive, the complaint has been investigated and is still being given some ‘consideration’, further to me sending it back for re-address. Part of the ‘complaint’ includes concerns about appointments that have been cancelled last minute, more importantly, the way in which the cancellation has been handled and communicated. The essence of the ‘complaint’ is that the healthcare services are simply not well equipped to support those with a BPD diagnosis! Healthcare professionals are not only falling short in their ability to help the ‘borderline’ they are becoming what I refer to as, ‘burnt out’.
So, this brings me to the end of this first post. I make the decision to care. I feel for the diagnosed and undiagnosed (the husbands, wives, parents, siblings, friends and healthcare professionals) and will be making efforts to be part of the solution. My hope is that more healthcare staff throw their hands in the air and say ‘help’ and say it to the right people, I hope that they begin to listen more to what is being said by the diagnosed and NOT to what they ‘think’ they are saying.
NB to the professionals: It is all too easy to ‘hide’ behind a patients diagnosis, listen to what they are saying and do not assume it is their diagnosis speaking! Let us improve services hand in hand.
Thank you for reading!
Post 2 May 7th 2014
Welcome, if you have happened across this page.
This whole ‘blogging thing’ is completely new to me, it goes against everything that I have ingrained in me.. I do not ‘own’ a phone (by choice), I no longer use any of the social networks out there (not that I was ‘that into them’ anyway)… Hiding away, that is me..
This is my second post, my first post yesterday was ‘prompted’ by yet another experience and example of how not to do things within a mental healthcare environment.. I had previously been working on the ‘back end’ of the monarch butterfly website, waiting for things to be more complete prior to any posts. I have been awoken to the realisation that this will ‘never’ be completely ‘ready’, it will be a project in development, changing with the advancement of healthcare and my own experiences.
If even one person has read the first post then I need to follow up by saying that I contacted the CEO and Clinical Director of services via email and was pleasantly surprised to receive an acknowledgment from the Clinical Director within ten minutes of sending the email. I am not sure if me mentioning I was close to contacting the media prompted a response or not, my previous efforts of communication via email had not been responded to. I have a ‘bundle’ of Hansel and Gretel like paper trails evidencing many ‘little’ failings that when looked at collectively shout ‘things need sorting’, our mental healthcare system needs attention and more and more involvement and consultation with service users in order to make the changes that service users will find helpful..
After all, if you are a service provider, it is common sense that consideration needs to be given to the service user experience. Improving services should not be limited to the quality provided to the end user, in order to effectively implement positive advancement, care and attention needs to be extended to healthcare professionals. If their hands are tied, if they are not considered, the delivery of service will remain poor.
If anyone is experiencing any discouragement with regard to their healthcare I want to tell you that I feel for you, there are many of us in this same boat. Do not give up, please hold on. What I advise you to do is keep a diary of thoughts and events. If you feel disappointed with something, write it down and discuss it with the person/s responsible. Writing down dates and a brief note of what may (or may not) have happened will empower you, you will not be relying upon memory to recall events. It is also helpful if you need to make a formal complaint, noting dates and times alongside a summary will support your case for consideration.
These next few days and weeks I suspect will be more of a catalogue of struggles as I claw my way through, attempting to get this blog and website live and worth a visit! I pledge to myself that I will continue working on this project, no matter how slow. Why? Because this blog is intended to be part of a proactive movement, a movement that advocates a better life for those diagnosed with BPD and those who in some way are affected by the BPD diagnosis.
This is difficult for me, I have spent hundreds of hours on another project in the past that really could have been so special, got so far and then- The block!- The freeze! It is like this pair of hands is pushing down on my very being, paralyzing me, just the thought of ‘success’ or ‘completion’ is nauseating for me. This is debilitating and whilst I have many years of management experience under my belt I put a ceiling on my own achievement. I get so hyped up and zealous, put in lot’s of effort then… what feels like a ‘curse’ inhabits my being, I loose strength and ability. Worse than that, it feels as though I am sitting amidst a dense fog – I am incapacitated.
I remember back to my first sports day, I was around four or five, it was a warm day and many parents had shown up to watch us little ones compete in what anyone might have thought was an Olympian event. A significant memory I have surmises my life very well… winning but not winning! Starting with a wicked zeal and vigour and then, slumping miserably.
I ran in a what seemed to be a 100 metre race, just a straight up race, nothing complicated, just run damn it and get to the finish line, what’s so complicated about that? I remember looking to my left and right, assessing the competition. I recall looking wider to see the parents on either side of the ropes, smiles on their faces, anticipation of who will be crowned with the glory… Then I looked in front to assess the distance that I needed to run in order to get to the end.. Where was the finish line? WHERE’S THE FINISH LINE? I remember being sent into a state of panic, I looked to my left and right to confer with my fellow sportsmen… and nothing, no confusion noted, just little faces awaiting the start alarm.
I had every intention of running like there were ravenous beasts chasing me, I had every intention of going for it, this finish line business had really ‘cramped my style’… The alarm sounded and off we ran, I was a clear ‘winner’, at least I was way ahead of the others…and then.. I stopped, I just could not ‘get’ where the end of the race was, where was the finish point? I needed at least one person to pass me so I could ‘follow their lead’, the confusion because I could not ‘see’ the finish line stopped me from being a clear winner, I froze. Upon my class mates passing me off I continued, this time just behind their heels.. I think I came third? I certainly did not win.
This is not about winning or losing, this is about the ‘self sabotage’ that accompanied that whole experience, so I couldn’t see a finish line, who gives a shit, the others didn’t, they still competed to win.. I remember one of my teachers approaching me with confusion in her face, she questioned me on ‘what happened’ and presented me with a balloon, I will refer to that as my losers trophy. A bloody balloon.
I feel marginally liberated that I have completed my second post to my beautiful monarch butterfly, I thank you for reading this, and I congratulate you if you managed it without falling asleep!
Until the next post… Take Care.
Post 3 May 8th 2014
Just an update really on what I have been ‘up to’ with the ‘back end’ ‘stuff’ for the website. I have been researching over some weeks the content I would like to use for Monarch Butterfly. Part of this process of developing what one would hope will eventually be a helpful and pleasant website to visit has involved me contacting both larger organisations and independent artists for ‘permissions of use’ of material.
I have already had some approval of use that I am very grateful for, some of which include an artist who exhibits his work on both national and international level and.. today, I received a message from one of my ‘musical hero’s’ from the 80’s.. WOW! I had contacted- (we will refer to them at this point as) Nik and asked if I could have permission to use one of their musical tracks on a video I will be making- he said YES! How special is that?
I am cataloguing this today, trying to keep up the ‘momentum’ of posting daily and also because it is exciting, to me at least.
I still am ‘blocked’, completely paralysed with regard to being able to actually physically get anything done. I say ‘still’, why break the habit of a lifetime, huh? I know this ‘change’ will come over time and I am hoping that me making these smaller decisions to ‘fight’ my very being and get ‘consistent’ with the ‘little details’ will help over time.
The ‘debilitating’ ‘freeze’ and inability to keep up momentum comes about when there is something that could be particularly spectacular on the horizon, I begin with a rocket up my arse flowing with ideas and ready to conquer the universe then crash into what feels like a pathetic heap of nothingness. No inspiration, no strength, no vigour, no belief, nothing.. It’s all ‘gone’!
That is me, no middle ground, I am an extremist. When Mr Miyogi (Karate Kid) said “stay left side- fine”, “stay right side- fine”- “stay in middle get squished like grape”, what about ‘us lot’ that find it close to impossible to harness the skills to ‘choose’ to be consistent.. I know that is not quite what he was referring too. I wish I could ‘walk down the middle’- tap into that ability to walk amidst the grey. Slowly slowly catchy monkey, is that a saying? Well, I’ve said it now.. I will keep trying to push through and see where this goes.
All the very best!
Post 4 May 9th 2014
This entry is a ‘late in the day’ one, I don’t want the day to be completely over without checking in so to speak.
This day has been much the same as any over the past few years, a struggle. To be specific, I have so much to ‘get done’ and so much that I ‘could be doing’ and yet.. nothing.. In the past few months following things through has been particularly difficult, just the basic life tasks are ‘Everest’ like, mammoth events.
Just to show you how polarised things are in my life and how ‘confused’ things are at the moment, you’ve got me completely ‘frozen’ and stuck in the ‘just do not have the strength and motivation’ to drink a glass of water, have a wash, do some house work, get some work done.. and yet an email comes through to me offering up some free drumming classes and I am in there, on the telephone booking my place and imagining myself finding something that might actually start to help me piece myself together.. Notice I didn’t put the word ‘back’ in there, I have never really been a ‘whole’ person, not someone who knows themselves and identifies with themselves well.
Anyway, within half an hour and after all of the thoughts that spun around my head I convinced myself that it was not such a good idea.. We’ll see.
Borderline Personality Disorder is a relatively new diagnosis for me, I have no ‘issues’ with the diagnosis, I knew something was not ‘right’ having spent a lifetime accompanied by moods that have swung with no compassion between an abnormal ‘high’ to an equally abnormal low. The mood swings are relentless, cruel, they do not give consideration and certainly do not give a shit about your needs or the needs of anyone around..
I do have a problem with the ‘BPD’ name though, I think most people might do, I don’t give a hoot about the ‘borderline’ bit, ‘in between/on the border between Psychosis and Neurosis’.. I get that, it makes sense to me (although it is not quite as clear cut as that). It is the ‘personality disorder’ bit I have the problem with, who wants to be labelled with that bummer? I was known as ‘the one and only’, ‘the original’, I loved that originality, that was one of the few good appraisals that I received from teenage friends.. Having this diagnosis sort of crushed that fantasy, was I funny or just insecure.. was I caring or just people pleasing.. actually I know I was not people pleasing, that much I do know.
I consider this condition to be one that is ‘present’ from birth, when I say ‘condition’ I refer to BPD as an ‘over sensitivity’ or ‘hyper sensitivity’ that assists in the development of ones ‘traits’, views, beliefs and so on throughout the journey of infancy, childhood, adolescence and adulthood. A ‘robust’ character might be in a more advantageous position to ‘filter’ out any crap that could potentially ‘hinder development’, someone like myself who has always been sensitive may find life that little harder, it may be that bit more difficult to let go of things and move on..
..For me ‘BPD’ is the ‘vehicle’ that eventually causes the issues in ones ‘personality’ that manifest, it is not just a diagnosis given to a set of debilitating and reoccurring, life altering personality issues. The ‘borderline’ bit (on the borderline between…) is not a complete and holistic overview of this diagnosis (in my lived experience) in that, yes, there are the relentless ‘swings’ in mood, so for myself that is experienced in major lows and highs.. and there is too ‘truth and reality’ versus ‘untruth or ‘imagined truth’ but there is too what I will refer to as a ‘grey’ area (for me anyway) and whilst dormant amongst ‘the grey’ I can only liken the emotion to feeling ‘dead’- not ‘numb’ because feeling numb is feeling something or an awareness of feeling nothing at the very least.. the feeling ‘in the grey’ is-‘dead’.
I will add though that everyone’s life experiences are very different and no two people are the same. I think this ‘grey’ area being filled with ‘death’ is my own personal response to very sad experiences that have happened over the years. ‘Post Traumatic Stress Disorder’ (PTSD) is not a diagnosis I have been labelled with yet but I am confident once my Psychotherapy begins that will be another one added to the list.
BPD is ever present in my world, I write that whilst on my journey toward acceptance, self acceptance and will keep posting as part of my promise to myself to keep making the little steps that count.
Post 5 May 10th 2014
Not such a late entry today, I have got my post in a little before sunset here in London.
I have spent some time today doing some further research on issues related to Borderline Personality Disorder and have looked around some more at other blogs out there about the topic of BPD. I have found over the past year or so that there are many blogs and videos, some are very good. What I mean is that, some blogs do deliver not just daily ‘diary style’ entries but also have a wealth of information on the topic. What I have found is that the more informative blogs and websites tend to be created by individuals, ‘fellow borderline’s’ that have managed to create a good distance between themselves and the diagnosis.
There are many great examples out there of people that just simply were not getting the support they needed or indeed the ‘understanding’ and have opted to be proactive and invest their time into making change. Many of the more established and informative websites are delivered by those who are no longer fitting the criterion for a BPD diagnosis.
I very much fit the criterion, I am still at the very beginning stages of recovery. I have been ‘frozen’ and not moving forwards despite my own ‘efforts’ to build a life up, I have been waiting for access to Psychotherapy for over sixteen months. Recovery, for me, is still very much a long road that I am walking, I felt the need to give some attention to the fact that I am a ‘Borderline’ who has many years of lived experience behind me but probably a good year or so ahead of me of building up the skills required to be ‘free’ from the entrapment that is BPD.
Regardless of my ‘placement’ on the road that is BPD, with its various signs that read this way ‘recovery’- that way ‘crisis’, I am determined to do my bit, to share what I can and be involved in the movement towards positive change and awareness.
If anyone is reading this post and is feeling alone or confused I want to say that I feel for you, these feelings that you are experiencing are real and oh so difficult. The truth is that you are not alone (I apologise as that may sound or feel like a cliché), there are hundreds of fellow ‘Borderlines’ that are sharing their experiences online, and have felt exactly what you are feeling right now, at some point they may likely feel that isolation and loneliness again.
I have been in a room of family and friends, sitting with my husband or daughter and yet still felt completely ‘alone’, I have ‘punished’ and ‘guilted’ myself out for feeling lonely when in my heart I knew that what I ‘should’ be feeling is… ‘grateful’. It is difficult, I know to be in a ‘loop’ of behaviours, thoughts and feelings and yet so desperately want to break free from the cycle. I know that is where DBT and other forms of behavioural therapy come in…
…On that note I am going to share an article about the renowned Dr Marsha Linehan. I have grown to very much love listening to her speak, any lectures that she is delivering that are available online /video I am there. I can watch her speak for hours.
For anyone that is not yet familiar with Dr Marsha Linehan she is an American psychologist and author. She is the creator of Dialectical Behaviour Therapy (DBT), a type of psychotherapy that combines behavioural science with Buddhism concepts like acceptance and mindfulness.
Marsha shares her own struggles with mental illness within this heart felt article in the New York Times and explains how her own experiences motivated the development of the DBT. Please follow the link within and note that there are three pages to read so you will need to click on the little tabs at the bottom of the article to read further.
Post 6 May 11th 2014
If you are reading this post, hello! This is the sixth post I have ever made in a blog so this is all new to me, completely new.
There are just literally minutes left before the clock strikes midnight, so I am ‘in there’, I have not missed a day of posting yet.. I do not intend to be a ‘serial’ poster but certainly do want to keep up the daily momentum whilst I am dragging my heels with the ‘back end stuff’ to do with the website.. I will be making ‘diary style’ entries whilst I pick up some momentum. Also, I am using this opportunity to rebuild my confidence with regard to my ‘ability’ to be consistent. I say that but you will know if you have read my previous posts that I am a ‘starter’ and not necessarily a finisher. I work quickly and need to see quick results, if that does not happen then the odds are that I will move on to the next thing. I get bored for a start, but the biggest thing is my insane need to self sabotage.
Today I have decided that the final file I have had sent to me of my logo is just going to have to be good enough, I have had such a headache trying to get the logo revisions done as requested and sent in files that I can actually do something with, that has not helped at all. The logo and of course the monarch butterfly concept has a story behind it. I will be dedicating a page to an ‘about MB’ so I can explain the concept and experience that led me to want to name my blog that, after all ‘what does a butterfly have to do with BPD’ I hear you say..
I today ‘played around’ with a short video clip I want to put together.. I already mentioned in a previous post that I had received permission to use a piece of music/ a track from one of my favourite 80’s artists. What a love. He responded and gave me a little ‘message’ that I can use too.. What a wonderful person, he is not exactly sitting on his laurels either, he is a busy man indeed. Oops, I have mentioned this is a man haven’t I? Well, never mind, I just hope I get the video done one day so I can actually upload it and you can see who he is!
That’s me for this post. I wish you well.
Post 7 May 12th 2014
This is going to be a flying visit from me. I am exhausted, today is the first day in several months that I have had the ‘strength’ to engage in real housework. Aside having a ‘Borderline’ diagnosis I have severe Depression, Agoraphobia and Anxiety… I was very much ‘anti’ meds all of my life simply because I had the mind set that I would be ‘cheating’ my way through and would not know what was ‘me’ and what was the meds.. I am still more inclined to want to navigate toward ‘alternative’ medicine and lifestyle options but the facts are that if you need them, you need them, simples!
I had taken over the past three years various meds, not throughout the entire three years, on and off. The last tablets I took for around four to five months and they completely changed the ‘mood’ cycles I had been experiencing for many years. I say ‘mood’ but for those of you who can relate you will know what I mean when I say this is more akin to the debilitating feeling of swinging between paralysis and having a rocket up your arse. My ‘low periods’ would last around three weeks or so and the ‘manic’ days would last anything upwards of two days but no longer than one week. I was so very low when I was low and very little got done. In the week of ‘mania’ I would literally get three weeks work done and be so knackered at the end of it all, the cycle would repeat.
I worked in management for a decade or so with this cruel dictator that would run my life, literally..
Anyway, to get to the point, I have ‘come off’ the last meds but whilst taking them the cycles began to ‘change’, leaving me cycling rapidly through highs and lows. After a few months these cycles have stabilised and I have since been low nearly all of the time with very little high. That is a bummer, nothing gets done, not without a massive struggle and for the most part I have not had the strength to struggle.
So, today was a good day. I spent a good three hours getting loads done around the home. I am ‘juicing’ at the moment, this is my third day of juicing only, no solids. I am unsure whether or not the juicing alongside not eating unhelpful options has helped but I have been down this road before.. No amount of juicing or healthy eating will stop me from going ‘off of the rails’ if I am ‘de-railed’, that has been ‘me’ for the past, well, nearly four years. I have mentioned in previous posts that I have had BPD all of my life but my ‘decline’ has come about due to PTSD, I have ‘self diagnosed’ , I know.. I shouldn’t… but I know my life story and whilst awaiting to be seen by a therapist I have done a lot of self exploration.
I am not new to juicing I had been a fanatic over the past eleven or so years (on and off).. I say ‘had’ because when I am really low the last thing I want to do is look after myself. Jason Vale, otherwise known as the juice master is an inspiration. I am not endorsing Jason in any way and do not receive any commissions, I just thought if you have not heard of him and are interested in juicing, his website is a great place to start.
I know only too well that ‘juicing’, ‘blending’, ‘exercising’ and most other ‘ings’ are of no interest to you when you are very down, one day at a time is how I am trying to live. I say that but that does not stop me beating myself up about almost everything almost all of the time.. Recovery is a long road and I am just starting out..
All the best,
Post 8 May 13th 2014
Today has been a relatively good day, I say that, it could have been quite different. In my previous posts I have noted that my husband and I have forwarded a bundle with ‘concerns’ to the CEO of our local health trust. This, of course, was not our first point of contact. We had presented multiple concerns over the year and a half or so (post hospital admission) to the relevant services and there had been little improvement, if any at all.
Today we had a meeting with a more local ‘regional manager’. Without going in to too much detail, I am grateful certainly for his time, the ‘essence’ was that the ‘mental health’ services are considered to be a ‘mutual’ ‘playing ground’ of service providers and service users just ‘trying to get it right’… I expressed that the mental health industry was not to be likened to any other corporate business, this was peoples ‘minds’ that were subject. Whilst there are possibly individuals within the system that are disingenuous, for the most part they are there because they ‘need help’ and a personalised ‘help’ that is well suited to their own needs. I say ‘they’, today we were talking about ‘me’ and my own views.We have booked a further meeting within the coming weeks to discuss options moving forwards.
Further to yesterdays ‘breakthrough’ into the house keeper of the year territory I packed a bag ready for the GYM after my meeting today. I wanted to break the ‘usual’ cycle, of meeting with services and spending the following three days in bed knackered and even more depressed. I had every ‘intention’ of going, as expected, I was exhausted post meeting so did go straight home but have tried to keep my focus away from ‘what has not been going right’.
Anyways, I suppose we all have some sort of ‘issues’, whether a healthcare professional, unemployed, banker, waitress, lawyer.. We all have issues and it is likely that at some point most people will have to call upon some sort of support and caring hand, It is important to be kind wherever at all possible, it is particularly important when you have been called into the ‘line of duty’ of mental health!
That’s me for today…
All the best!
Post 9 May 14th 2014
Here I am again, keeping up with my intentions.. I have ‘promised’ myself that I would keep making daily entries, at least until the ‘front end’ of the website is ready to go live. So, to date it has been nine days in a row, not bad. ‘What’s the big deal’, you may say? It is a big deal to me because there is not much of anything ‘exciting’ that has been seen to completion, not in the last four years or so anyway.
Posting is not a big deal right now because these posts are not ‘going live’, not at the moment anyway.. I mentioned in an earlier post that these are my ‘practice runs’! I am getting used to the old ‘blogging’ thing… Just making diary style entries for now..
.. Today, a good day! I went out ‘alone’, travelled about twenty five minutes to meet my mum for lunch. I say lunch, she enjoyed a Nando’s and I sat watching her chomp down her food like she had not eaten for one week. I had a smoothie I had made at home.. My ‘packed lunch’. I won’t lie, I am salivating even writing about it now. I am on a ‘juice only’ ‘diet’, not for diet purposes (although I do have three stone to lose), more so in my desperate attempt to ‘get well’.. stronger. I am seriously considering not eating meat or fish when I move back to solids.. I am in the process of being ‘educated’ or rather I should say ‘motivated’ by my husband who is now eating a Vegan diet. Digesting meat takes up a hell of a lot of energy, I need every bit I can salvage right now. I have also been in the process of reconsidering my views on meat eating in general, I have wanted to come away from it for years now.
Having BPD or any mental health disorder is not easy, I know.. I am clawing at anything that may help me on my way to a happier and safer life. It is not like I am new to this stuff, not to be a pessimist but I had gone down a similar road all but three months ago, lasted three weeks and was back on a varied junk food diet shortly afterward. The difference this time around is that the hubby has changed his eating habits, that does help.
That’s me for this evening.
All the best.. Take care!
Post 10 May 15th 2014
This has certainly not been the ‘best day ever’, but equally not ‘the worst’.. I found by around 3pm I was very much back in the ‘dark zone’ tottering around the tipping point of moving into real depression. I finally, tipped at around 5pm’ ish, really miserable and what had been ‘manageable’ just hours earlier was now ‘unmanageable’.. For those of you with the diagnosis of BPD or indeed living or working with someone with ‘Borderline’, you will know all too well the aggressive swings in mood, I say ‘aggressive’, not literally, I say that to paint the picture of how relentless the swings are.
For some depression may be misunderstood, the term is over used in society and can often be used in jest, ‘oh, I am well depressed’… Depression is debilitating, punishing and dark. There is nothing light amongst depression. Imagine swinging between that and elation, one moment everything is love and light, the next doom and gloom. Now, I know most people can relate to varying moods, feelings and emotions. The problem begins when you have absolutely no control over these ‘swings’, I say ‘no’ control, of course with the skills learnt through DBT and other therapies it becomes possible to better manage these swings. To some degree it is possible to actually pre-empt mood changes as we become familiar with things that may ‘trigger’ a radical mood change, a dip.
For me (someone with BPD), it becomes easier to stay feeling ‘unhappy’ because the ‘come down’ having an opening of positivity is bloody hard. When you are high, the fall is long and hard, staying ‘low’ is probably a self protective, survival response I have learned over the years..
I am not speaking to a particular audience here, if anyone is actually reading this then you may find looking around the site helpful, my posts over the last ten days have just been me ‘spilling’, learning how to write for a blog and most importantly building my confidence. I have not been consistent with anything for a very long time, so this is my attempt to get one under my hat so to speak.
So, today has been a bit of a shitty day. Tomorrow is a new dawn, a new day…
Post 11 May 17th 2014
I know, I know… I failed miserably…Only day eleven and I missed my posting opportunity..
This is by no means a justification [but] yesterday was an awful day, really, horrible.
I ventured out to the gym, alone, for the first time in over two years. I had been, but not alone, with hubby and even so that was five or so weeks ago. So, I hit the gym. The journey there was not too bad although I do not like going out alone at all. I won’t go into that too much now. After my session was over, showered, then had a meltdown. I had managed to put my bag in a locker separately to that of my clothing…don’t ask, there was an explanation for that but never the less it is representative of the difficulties I have with ‘basic’ tasks at times. Yes, I know, ‘anyone’ could make that mistake… it is the ‘experience’ of being brain dead, slow, confused that (in my case) was the problem…
Anyway, I panicked upon going to open my locker as ‘it was already open’, I looked to the left, to the right and did not see the bloody obvious clue that I had done what I had done, because my lock was on the locker to the left.. I just panicked.. ‘Oh my God’, ‘my bag has gone, it’s gone’…
Just prior to this ‘event’ what had happened was that a lady was hovering behind me as she needed to get to her locker. She began explaining she had forgotten her water in her car and music in her locker.. I was a little unnerved and ‘jittery’, it is upon this brief distraction that I must have ‘forgotten my way’…
I completely embarrassed myself running out of the changing area in all but a towel, vest and flip flops, what a sight.. I nervously explained my predicament, phoned the hubby, effectively ‘reacted’ way too quickly to something that could have been resolved almost immediately.. Post event, after I realised what had happened I apologised to everyone and felt as silly as could be..
These events are horrible because I begin to ‘panic’ and think that I am really losing the plot and any ‘improvement’ is neutered, worse than that, it feels as if I take several steps backward..
I later that evening had a disagreement with the hubby, very unhelpful things were said on both sides and found myself going down ‘that road’, the one that leads to nowhere good, despair… I kept repeating to myself, ‘I am not going there, I am not going there’, whilst I managed to stop myself from self destructing completely, I admittedly began down the road of Psychosis.. I begun thinking and believing very unhelpful things all of which were lifted by midday today upon talking things through with my best friend, my husband.
I apologise to myself for not posting yesterday, I suspect that this post will not be read by anyone other than myself as I have not made the website and blog live yet. I also want to acknowledge that whilst keeping at something 100% of the time is good if that was the intention, picking up where I left off is probably better than beating myself with a stick and not carrying on. So here is to acceptance and keeping at it even when you think you have let the side down..
That’s me for now.. Take care!
Post 12 May 18th 2014
It has been a beautiful day here in the West of London, sunny and warm. I generally have a disliking for Sundays…don’t ask, I am not entirely sure why myself. In the grand scheme of ‘Sundays’, it has been a good day.
I am apprehensive about the week ahead of me, there is a lot going on… two particularly stressful events or ‘meetings’, one of which is with the lead psychiatrist at my local health Trust to ‘discuss’ ‘moving forwards’ with therapy.. I have been waiting ‘officially’ for over sixteen months to see a talking therapist.. One was ‘appointed’ all but last month but that therapist had absolutely no experience of working with persons diagnosed with BPD, Borderline Personality Disorder.
It is common place to be ‘grateful for what (or who) you get’ that is not the issue, I am grateful to be in line for support, the issue is that I have had a very bad experience over the past year and a half or so, surrounded by healthcare professionals that have not been in a position to ‘understand’ the condition. For those of you (and of course I am assuming someone other than myself is reading this post) who have a BPD ‘diagnosis’, who live with this somewhat debilitating condition you will know all too well that it would be better not to have ‘professionals’ around you at all if they were not ‘equipped’ to understand you and your thinking styles. It can effectively make you more unwell.
Anyway, that is me for now.. The week ahead is going to be challenging and will certainly be giving me something to write about come Friday..
Post 13 May 19th 2014
Today has been another very sunny day. As my visit to the Gym last week was ‘eventful’ and left me feeling a little ‘scarred’ I decided to go back to the drawing board.. Rather than stop going altogether I set out at the crack of dawn this morning..
An altogether far better experience, I will do my best to keep us the early morning visits and see how I go..
I have mentioned in previous posts that these entries are in a ‘diary style’ simply whilst I get used to writing for the blog.. At the moment not a great deal of work has gone into the ‘front end’ of the website as I am adjusting quite a lot in my day to day activities, my energy is literally consumed by engaging in what most might consider to be ‘normal’ activities..
Borderline Personality Disorder (BPD) has been part of ‘me’ all of my life, the level in which I have been ‘affected’ has varied dependent upon where I have been in my life. What I mean is that it has become less ‘possible’ for me to function effectively over the past few years, very sad circumstances and ‘life challenges’ had weakened me considerably.. Not just one ‘issue’, multiple issues.. I think that it is probably ‘normal’ for ones ‘weaknesses’ to become heightened and possibly ‘debilitating’ after enough of life’s ‘knocks’..
I do not know why I have written about this today, this is actually a brief post, keeping up the momentum!
So, that is me for another day..
Post 14 May 21st 2014
Another day closes, a good day. I mentioned that this week was going to be a particularly ‘difficult’ week, so far It has been relatively kind, considering…
Let me write about today, because whilst ‘difficult’ in some ways it was (as expected), very positive. I might have mentioned in previous posts that I am a ‘proactive’ type of character (by nature)(obviously that goes out of the window when I am particularly ‘unwell’). I did a ten week MBT class (Metallisation Based Therapy), well I attended nine out of ten classes.. I am sitting here saying to my husband ‘I can not believe I did not attend my final class’… I had ‘dipped’ into a very dark period and regretfully missed the final class.
Anyway, I met a wonderful woman, one of the course facilitators who introduced me to ‘KUF’ (Knowledge and Understanding Framework) training.. I am honoured because these courses have been developed to engage healthcare professionals, providing learning that teaches not just through reference to academic papers but through self exploration, information rich content and audio and video case examples. The course is challenging as it explores ‘Personality Disorder’ and the stigma that attaches itself to this diagnosis and in turn laches onto the diagnosed. We all have ‘personalities’ so the topic of their being a ‘disorder’ with ones personality can be confusing, as a service user I myself have found this engagement very helpful.
I am ‘drained’ and have an early start tomorrow so I will close by saying that I promise to get great information loaded into this website and I will signpost our UK visitors to ‘KUF’ information for anyone who is interested..
There are some fantastic shining examples of caring and conscientious individuals who are working within the mental health industry that are sitting on the course. I am talking ‘old school’, ‘real’, genuine individuals, I am grateful to have met them as it is a reminder that there is hope.
Post 15 May 24th 2014
Wow, I have missed two days of posts! I am disappointed about that, definitely… Daily posts, that is my goal whilst I am getting used to the whole ‘blogging’ thing.. I mentioned in previous posts that this week was going to be a difficult one, I think I quoted ‘a shitty’ one was ahead, that it certainly was. Have you ever been told something or given some news that ‘should’ be great, but you feel confused and the ‘deal’ seems tainted in some way? That was my appointment with the Psychotherapy department this week.. I have been in waiting ‘officially’ for around sixteen months for talking therapy, a discussion I had this week with the doctor resulted in him giving me two ‘options’ both of which came with ‘limitations’. My ‘choice’ would be non changeable and if proving unhelpful would be the ‘only option’ accessible to me!? Where did that leave me? I chose the more ‘intensive’ option that came with a further wait attached to it, but that was my choice.. Now I will be writing to the doctor to outline the meeting discussion so that I have those details on file, I have learnt that with having this diagnosis of BPD it is important to avoid any ‘misunderstandings’ by writing things down (documenting things), this also will give the doctor the opportunity to correct me if I have ‘misunderstood’ anything. I now always take along an ‘advocate’ of some kind to my appointments, usually the hubby if he can negotiate the time off..
The week has been difficult, but I ‘survived’ it, I will not lie, I have been repeatedly going over things in my head, a totally pointless exercise I know.. I have just been ‘bothered’ by what feels like confusion that is still looming.. That is part of the reason why I will be writing to the doctor, just to ensure that we are both ‘on the same page’..?
Anyway, for now I am closing off this post.. I really just wanted to log on and get a brief post written so that I can keep the momentum going, after all that is my goal..
Post 16 May 26th 2014
I thought I would get posting earlier in the day today.. At the moment I need to ‘get to it’ whenever I get an opening, or else it is clear that a post may not happen at all…
So.. this is the sixteenth post, I have not kept a ‘theme’ running through, I have just literally been posting a little of what has been on my mind.. If anyone is reading this I apologise for the repetition but I need to reiterate that these posts have been me ‘getting used to’ ‘posting’ on a blog, keeping up momentum is important because I often loose interest and this is far too important for that to happen.
This website and blog is all about Borderline Personality Disorder, BPD. I have chosen to have some stagnant pages that will serve as information pages and a blog on the ‘back end’ so I can add content and thoughts in a more chronological format..
The back end of the website has been on hold for the time being, there has been too much going on for me to get past the ‘block’ that I get.. There is a paralysing ‘block’ that surfaces when there has been an initial ‘exert’ of energy, particularly when I think it may be very successful.. I put that down to self sabotage, an awful ‘in built’ skill I have had from primary school age.. If it looks like I may do well at something, I shit things up..
I am pushing through, God am I trying.
I am pleading with the universe, ‘just direct me to therapy’, ‘give me that hope’.. I am making small day by day decisions to try to ‘claw’ at building a life that is ‘lived in the moment’ as I have never acquired that skill. I have always lived almost in the third person, as if I have been watching someone else live ‘my’ life.. I have been working hard to access ‘support’ that is ‘relevant’, it is troubling how ill equipped our services are with regard to dealing with the difficulties associated with personality disorder.. Rehabilitation can only come about via awareness, if the patient is not ‘aware’, they are reliant on the healthcare professionals to be aware and competent.. I know that probably reads very harsh..
I hope that if anyone is reading this, that you are here because we have ‘gone live’ and the content has drawn you in. I hope that you find some of the front end pages helpful, particularly if you are UK based. May you have strength whether diagnosed or undiagnosed, I wish you strength and much happiness.
Post 17 May 28th 2014
Another day (or two) have past and here I am, making a ‘new’ post. I am not ‘feeling’ like ‘talking’ or posting at this minute, well all day in actual fact.
I have ‘worn’ myself down by the smallest of ‘thinking’ tasks.. I was contacted by one of the facilitators of an MBT course that I attended, it was a ten week course and was good. The facilitators were very likeable, that helps of course. There were about fourteen of us on the course, a couple dropped out unfortunately, but for the most part the group stayed together.
At times, in fact from week three onward, the course was very challenging.
I was asked if I would write up a testimonial about the course, I was delighted and of course agreed.. So, that is what I have done to ‘tire’ me out! It s so discouraging to do so very little and yet feel exhausted afterward.
The back end of the website is still very much in progress, although very slow I will admit. I have this ‘block’ going on, I have mentioned it in previous posts that I get to a certain point and ‘freeze’, any further ‘effort’ becomes close to impossible.. I am not giving up though. That in of itself is a real feat simply because I had spent hundreds of hours on a different project and just ‘stopped’ due to the ‘block’, the inability to be consistent and keep up momentum. I often have thoughts that ‘the same will happen’, the difference this time around is that I am acknowledging my difficulties and accepting that this may take some time. I put a lot of pressure upon myself and this is a huge part of the problem alongside the ‘self sabotaging’ factor…
This is part of the reason that I am posting as close to daily as possible, even though I do not ‘feel’ like doing it. These posts are not live currently, so this is just ‘me’ getting used to being consistent!
That is me for now…