Heart REset on living + SEVEN WEEKS

I think it feels as though more time has passed since that wondrous day following that fateful post. Certainly a LOT has happened.

I have always prided myself on capitalising on both hope and opportunity and I hope that this is evident.

I posted an update 14 days after my friend’s visit and I went on to post, on the 26th June, about the BIG PLAN that I was formulating and putting into action. I called it Operation Thrive. Here it is as it stood then, at that point all Priority 1 tasks were already complete or underway:

As at today, all Priority 2 tasks are now either complete or underway … yay! I have also taken a couple of tentative steps towards actioning some Priority 3 tasks.

I have had no further support since my friend’s unexpected intervention on the 10th June, except for the monthly visit of the woman I pay to help with cleaning tasks. I had three relatively good weeks then had three very challenging weeks due to a number of stressful events and by the end of the week before last was again struggling with suicidal feelings partly because I was overloaded and lacking support, but also because of the apparent impact of perimenopausal issues on my mood (I’ll cover this in a separate post). However, I managed to hold on and pulled through. Last week was altogether better and had a moment of real high! I’ll cover that in a separate post.

Priority 1:

  • I am writing most days – if not here, then in my journal. I haven’t done any work on my novel project recently but still without support my capacity is much reduced and there’s only so much that I can do. I am doing as much as I possibly can.
  • I have felt much less lonely overall, although I am aware that I am still largely isolated. In the seven weeks since my friend’s intervention, I’ve had one other visit from a friend and maybe five phone chats. I have taken the initiative and I am connecting much more with friends (almost all of whom live at a distance) via social networks. I post daily updates. I reach out when I need support and usually receive comments with virtual (((hugs))). Sometimes someone will chat via a messaging app. I am keeping in touch and not allowing myself to withdraw. One friend hopes to visit in September/October which would be lovely. Today has been difficult. I reached out specifically asking for contact yesterday and today, but there hasn’t been anyone around for anything more than a virtual (((hug))) or wave. When loneliness creeps in it does make things harder, but I keep busy and distracted as much as my ‘spoonieness’ will allow. At the worst moments I hunker down for a while. My calendar is as full as I can sensibly make it for the coming month. Perhaps by the end of the month or the start of the next, we can hope, social care support will finally be in place to pick up the slack, allowing me more freedom to get and out and build more of a life, and giving me regular twice weekly contact at home.
  • Rarely are two days the same so daily routines do vary but are generally good now. I’ve only failed to shower on a handful of very difficult days. I am mostly on top of chores – but need help to catch up with the mountain of laundry and some cleaning tasks. Luckily, I am very tidy and organised and that helps a lot.
  • Self care has improved steadily in the last seven weeks and exponentially so in the last week following a couple of significant appointments (more in a separate post)
  • My ability to get out and about has also approved steadily and continues to do so. I am  happy with my progress.
  • The routine inspection by my landlord’s agent was successfully carried out some weeks ago. My landlord himself, who lives overseas, will make an annual visit at the end of next month. If support isn’t in place in time, I will no doubt stress and overstretch myself ensuring that the flat is in entirely immaculate order.
  • I’ve been to the GP a couple of times and had the necessary tests. There are ongoing issues, I’ll cover that in a separate post at some point.
  • I am still without support for my eating disorder. However, I have made progress by myself. Progress has been steadyish and, more recently, certainly significant. I hope to join a local branch of OverEaters Anonymous but at the moment I don’t have the ‘spoons’ to attend its evening meetings. Evening outings are only possible if I rest for most of that day and each Tuesday I’ve had other commitments. I’ve recently discovered that Beat, the eating disorder charity, runs an weekly support group online. I’ve registered and I’m waiting for my registration to be processed. I will write a separate post about my weight and eating issues; they warrant it.
  • Psychotherapy/Trauma Therapy – there is a lot to say about that! Suffice to say for now that some significant progress has been made both in terms of provision and with my interim therapist.

I have resumed physiotherapy treatment – again a separate post is warranted. My treadmill routine got derailed by a lack of ‘spoons’ and being so busy elsewhere with appointments but I am determined to restart it on Monday.

I saw my dentist last week, had a fabulous appointment, I will blog about it soon and its relation to my recovery from abuse. I have a further appointment next month.

I’m due to have my eyes tested and get much-needed new specs next week.

I should be making a renewed application for Personal Independence Payments (P.I.P) in the next two weeks.

I have tried to return to a weekly support group for women who’ve experienced mental illness/trauma in the last couple of weeks but was thwarted by my ‘spoon’ count. Third time lucky this week, I hope.

Still without support, it is very difficult to keep all the necessary balls in the air. Some things are working well, while others are not. Some things work well for a time then fall by the wayside because something else has to take priority. The advent of support should see the emergence of some consistency and sustainability … both of which currently feel akin to the fabled gold at the end of the rainbow!

Thank you for reading. I’m sorry that this turned out to be more than a bite-sized post. Either I am just a waffler or there really is masses going on! I actually feel like I’ve written a lot but failed to convey all that is going on. Perhaps because I am tired.

Comments as ever are very welcome and appreciated. Do let me know that you are reading and that I’m not just talking to myself 😀 .

Heart x

 

Boarding the Social Care Merry-go-round

Hello again 🙂 !

Please note that I wrote this post several weeks ago following a social care assessment by a social worker that had taken more than a year to come about following an urgent referral. Lots has happened, and changed, since then as more recent posts evidence, but I wanted to post this to update this part of the story and so that I can next post a more brief update on the social care front.

This is an intense post … very raw

*** TRIGGER WARNING – this post contains mention of suicidal ideation and brief description of planned method – but with an optimistic outcome, I promise. It also contains a sweary moment.***

I’m afraid to get too excited. I’m scared to hope until it’s all been verified and approved. And yet somewhere inside me it’s bubbling away, small but unbridled, fizzy excitement.

It’s keeping me on top of a precipice, by keeping hope alive.

Since my collapse in mid February, it’s been quite the job to stay alive … too many times I’ve almost tumbled over the edge.

****

Having experienced significant trauma and having been abused for many years, I’ve experienced suicidal feelings on and off since my late teens – that’s almost three decades – due in part to mental illness caused by the trauma and abuse. They call that being ‘passively suicidal’, which sounds rather like there’s some relaxed, chilled vibes going on. In actual fact, feeling suicidal, regardless of whether you’ve reached the ‘actively suicidal’ stage of making and seeking to execute suicide plans, can be HORRIFIC.

Sometimes suicidal despair is less about mental illness and more a human, albeit extreme, reaction to devastating circumstances. It’s often a desire to end the most terrible pain, and to end life appears the only way to do that.

I’ve been actively suicidal around four times in all those years. I’ve made only one actual attempt to end my life (a survived attempt is known as a parasuicide) and that was a little over a decade ago. At that time I was very mentally unwell and poorly supported as I tried to come to terms with the recent realisation that the family members to whom I was devoted, hadn’t loved me at all and had sought only to harm me. Furthermore, that estrangement from them – what remained of my family – was the only way forward.

Since then I’ve become far less mentally unwell on account of a lot of psychotherapy and a lot of hard work. I’m lucky that’s worked for me, it’s not the same for everyone. Mental illness can be as individual and as complex as those who experience it. I’ve also become extremely well practised at keeping myself safe even in extreme circumstances. I know that if I can’t keep myself safe, that that’s an emergency situation. The difficulty comes when the system does not have the resources to provide appropriate support.

In July last year I set up a noose in my flat, carefully balanced I tested it to ensure that it was fit for purpose. As, during this test, I settled it around my neck, the phone rang suddenly – loud and shrill. I started and almost fell off the object on which I stood, and which ultimately I was planning to kick away … It’s not funny, it’s really not, but still I find myself laughing now. You could not make it up.

I could just have gone with it but instead I fought to right myself and hurried to the phone. My phone rarely rings. I answered to hear the voice of someone who has rarely called and never without being asked to do so. I do not believe in divine intervention but the interruption gave me sufficient pause. The ‘spark’, as I think of it, inside me that’s kept me alive through everything yelled … Do not fucking extinguish me. I am not done yet. It’s pretty difficult to ignore ol’ ‘Sparky’.

That said, in spite of the urge to fight on, I knew that I was under a great deal of pressure in very difficult circumstances. I knew that I was losing the capacity to keep fighting by myself. I knew to ask for help and I did, but it didn’t come. I had my first ever direct experience then of a mental health assessment – carried out in the large and somewhat forbidding psychiatric hospital in the city where I live. I was found to be ‘too well’ for inpatient care (much to my relief, I admit) but also for the support of the community based Intensive Home Treatment Team or ‘crisis team’. I was told that there was nothing else. The assessing doctor did suggest that I try volunteering as a means to ‘occupy myself’. The irony that I’d spent the previous four years volunteering, first for two years in that very hospital, setting up and running a not inconsiderable project by myself supporting ex and current patients, and a further two years working with a mental health charity, was not lost on me. I didn’t need to be occupied, I was more than capable of doing that for myself, sometimes to excess in a bid to keep myself going. I needed some practical and emotional support, for I had none.

***

In recent years, a complex set of circumstances including marriage breakdown and later divorce, two major bereavements, unexpected severe financial difficulty leaving me unable to afford to heat my home and dependent on food bank for three months and in fear of losing the roof over my head, had threatened my mental health again.

Added to that, was the fact that I was driving myself into the ground by working my socks off to get myself through all of this and onto a better future. I drove myself to breaking point. Support did materialise for six months, in the shape of my GP, a housing support officer and a friend. I made huge strides and began to thrive. Then my GP relocated, in the same month my housing support worker was withdraw overnight … the service is limited due to budget constraints.

By this time, a little over a year ago, I’d begun experiencing flashbacks to abuse of which I’d previously had no memory. I experienced intense anxiety that I hadn’t felt in years, and I also began to realise that dissociation had likely long been some part of my experience. The friend who been supportive, began to back off at this point, seemingly unwillingly to believe in flashbacks and dissociation, because they were outwith her own experience.

It seems as though having finally got out of my marriage, which wasn’t healthy, having some support in place and space to be myself, something unlocked in my mind. I already knew there were some things that I still needed to process in therapy, but I came to realise that there was more than I knew. In addition to the flashbacks and anxiety, it was as though I could suddenly feel the impact of all of the loss that I have experienced, and the attendant grief. That’s everything from the loss of my whole family, through losing my career, close friends and my marriage – all as a result of abuse/trauma, through the loss of the opportunity to have children, and right down to the permanent loss of a significant amount of my hair due to alopecia.

The pain was off the scale and unable to obtain any support despite, even if I do say so myself, valiant efforts, my mental and physical health deteriorated rapidly, until one day in February this year I could do no more and was left with the barest of function.

***

When I moved into my second floor flat a little over two years ago, I could run from the street below up the numerous stairs to my front door, in a one-er. I was EC-STAT-TIC the first time I managed it. I might as well have run the London Marathon … in record time … such was the size of this achievement.

I’ve never been what you’d call ‘sporty’ and, although I love to walk, I couldn’t ever imagine having any desire to run. It took among other things a broken back; the loss of my family, close friends, my career and my hair; a suicide attempt that left me in cardiac arrest, and finally a broken marriage to send me in search of my very own running machine.

My health is a bit wonky these days. I say these days. The wonkiness set in before I was 30 and I’m now approaching 50.

Aside from the umbrella of ‘Complex Trauma’ – which for me includes Post Traumatic Stress Disorder, Depression, an eating disorder and compulsive skin picking known as Dermatillomania; I have several physical conditions for which there is currently no cure. The former is a direct result of my experiences of abuse and trauma.

Lots of bits hurt; bits squirt, leak and splutter. Bits fall out and bits malfunction in such a way as to leave me feeling as though I’ve gone 10 rounds in a centrifuge. Among other things, I can be incontinent, my mobility can be impaired, I experience memory loss, pain disrupts normal function and, when this lot really means business, I cease to function.

I’m great at faking wellness and pretty bad at showing sickness. It kills me to tell you – unless you’re in the same ‘club’ – how bad I’m really feeling. I’ll really try but I’ll skirt, feint and increasingly hesitate. It’ll be like pulling teeth and you’ll probably end up none the wiser.

Right now, I haven’t been able to leave my flat for almost four months and an attempt to run up those stairs would foolhardy to say the least. The treadmill is gathering dust but I still yearn to run.

I’m always going to be limited in some ways by health issues, but careful self management – to be fair, a rigorous regime of physiotherapy, graded exercise, medication, diet, meditation and more – has in the past meant I could make more of my ‘spoons‘. That’s what got me in a position to be able to run a mile several days per week. I don’t mind putting the work in, far from it, but support is necessary to sustain it.

The responsibility of care/support falls first to families, no matter their age, then friends … neighbours … the world and his dog. Social care is not readily provided by the state. Hoops must be conjured, immolated and resurrected before then being jumped through so accurately as to achieve a perfect score.

At the time of writing – popping between this and Twitter as all good writers do (!) – two tweets appeared on my timeline both, although carrying dispiriting messages, suitably illustrate this post. Cue a further frisson of excitement, stirring music, and … and … the … the …THE STARS ARE ALIGNING!

I have to shake myself back to reality. After suicidal depths and isolation, so perpetual as to rival purgatory without the promise of heaven, real hope can send one a tad giddy …

This tweet pictured below is from a psychiatrist working in an NHS Accident and Emergency Department. Whether a real or an ironic example, the message is the same. Resources are very limited, ever more strict criteria is applied to determine who may receive them. People in need can and do slip through the widening cracks in the system. The second tweet contained a link to this article in the Guardian.
Tweet 24 May 2017 to use to illustrate a HSOL blog post

This is not a great time to be vulnerable or disabled. 

After completing the lengthy assessment – in two visits of around 80 minutes each – my newly allocated social worker tells me that she thinks her request for support for me – four hours per week delivered in two hourly sessions – will be approved.

To have real possibility of a support worker or personal assistant (PA) – appropriate, flexible support — dangled, like a diamond encrusted carrot, right before my very eyes, feels like the winning the lotto, the big money, life-changing bucks. But forget that, who needs it?!

I will feel like a millionaire for having won the social care lottery because it will afford me the luxury of being able to do more than survive … and instead to thrive.

 

Finding family

I could have applied to be on Long Lost Family with Nicky Campbell and Davina McCall. Instead, after my own extensive search proved fruitless, I turned to the Salvation Army.

The organisation runs a Family Tracing Service and will undertake, what are expensive searches, for a modest fee. From memory, I think I paid £25. I was looking for any surviving siblings of my father. To be frank, I’d have been happy to make contact with ANY relative on my father’s side, as I’d had no contact or knowledge of the paternal side of my family, since my father’s death when I was a child.

My surviving parent forbade me from going to his funeral and told me that from now on his family wanted nothing more to do with me. I was too young to really take it in, but I was devastated all the same. I thought I was at fault.

It was many years before I came to realise that I may have been lied to, as I had been about so very much else. Likewise, after my abuse was finally uncovered, I came to realise that I owed my surviving parent no loyalty.

I was nervous about finding my long lost family. I did fear rejection. I had no idea what they might make of contact from me, after more than three decades. I knew that one sibling had died for certain – the one with whom I had had the most contact. The Salvation Army were able to locate my father’s eldest sibling, who furthermore was happy for me to make contact. So I did, and I found my relative living in an area I’d known well as a young adult. We don’t have much in company, save for our ancestry, but I was able to learn some family history – I knew next to nothing – and I was loaned a HUGE box of family photographs and documents. Eventually, this relative put me onto my father’s other surviving sibling – an uncle – living on the other side of the world. I had been unable to find any record of him myself because I had incorrectly remembered his name, confusing it with that of my Godfather. Finding his contact details was not easy, but eventually by means of a daughter-in-law’s entry on the LinkedIn web site I was able to obtain an email address and I wrote to him. I received a warm and welcoming reply!

For the first time I felt a family connection. This sibling was closest in age to my father and they look similar. They also seemed to share a sense of humour. Looking at photographs gave me an idea of what my father might have looked like had he lived beyond early middle age. From my uncle I learned more about my father’s interests – most of which I happen to share – and he came alive again for me. I warmed to my uncle and liked him very much in his own right. I learned about his emigration journey, his new life and his second wife, my auntie. I so enjoyed our correspondence. This felt like relationship to cherish.

He rang me one Sunday and I chatted both to him and to my aunt for some time, sharing news and history and finding common interests. My aunt loves arts and crafts, as I do, and my uncle was learning to play the ukelele, as I was trying to learn to play the guitar. My aunt told me how delighted her husband had been when I had made contact. There were no recriminations, no hint of rejection, there was just joy.

They came to say that they loved me. I felt uncomfortable, finding myself thinking but you don’t know me and pondering whether this was heartfelt or just something that was said. The reason for this is that I don’t know what it is to be loved by family. I haven’t had that experience. My father may have loved me but our relationship had many complicating factors. My surviving parent was incapable of loving me, perhaps of loving anyone.

It’s not that I don’t welcome being loved by my long lost family. Family love is supposed to be unconditional and a founding fundamental that can be counted on as we grow. I didn’t have that experience and so this is all new to me. I am learning how to be with it.

The trauma and abuse that I experienced, and my continuing recovery from it, has impacted on our developing relationship. The email I had to write describing my father’s violence and the horrors I witnessed as a child was the most difficult. Nor was it easy either trying to explain how his suicide affected me, or how my surviving parent and a sibling had abused me, why it gone on for so long, and the resulting devastation to my life.

Describing my resulting experiences of mental illness, was hard. As I’ve previously written here, I fear being seen as weak. I fear people won’t see the real me. The last three years have been especially difficult, following the breakdown of my marriage, bereavements and further illness. I have not been in touch with my relatives nearly as much as I would’ve liked to have been, either because I haven’t had the capacity or because I haven’t known how to explain. Terminal illness, food banks, the threat of homelessness, bereavement, flashbacks and suicidal ideation have all touched my life in that time. These are not the easiest of topics of discussion.

Despite my nerves, I was determined to complete my search. My often ‘gung ho’ approach served me well here, as I forged ahead. Even if I had been rejected, I knew for certain that I would rather have tried. I didn’t want to be left wondering what if ..? 

I am genuinely thrilled to have found my uncle and aunt. Through them I also have contact details for some cousins in the UK. I had nothing before that in terms of family, everything I have now is huge bonus and I am so grateful for it. I didn’t know if any of my father’s siblings would still be alive. My uncle is, shall we say, a gentleman of advancing years. I’ve felt that time isn’t on our side and I’ve felt guilty about not doing more.

I wrote to my uncle for the first time in a few months just the other day. My aunt swiftly sent a lovely reply, but letting me know that my uncle was in hospital having had to be rushed in for heart surgery. I sensed her obvious worry and wanted him to be at home and well again for her. I felt worried for him and wanted him to be feeling much better soon and be back at home living life with his loved ones.

Inevitably, I also found myself worrying for us.

I don’t pray, I’m a Humanist, but I found myself wishing for more time. Please let us have at least a couple more years, I said aloud, please let us have that. Please let us have more time. It feels like we are just beginning. I am only just finding myself again and still have significant obstacles to overcome on this journey to recovery.

My uncle and I have met just once. I was just a few months old. He sent me a picture of himself holding me in his arms. Our conversation wasn’t up to much that day 😀  . I would love to visit them. I’ve even wildly thought of crowd-funding my airfare. Realistically, health-wise, it would be better for me to wait another year before attempting long haul travel. This all feels a bit ‘pie in the sky’, but who knows what’s around the corner.

My focus is of course on the positives but nonetheless, it is difficult and painful to know that someone wilfully robbed me of this relationship and left me without family for three decades. I had already lost my father in devastating circumstances and they ensured that I lost even more. Sometimes, I feel angry. I know that I have yet to fully heal from this because it’s only now in knowing some of my paternal relatives that I can fully begin to appreciate what I have missed out on. Now as well as celebrating and embracing these new relationships, I also need to grieve.

I’ve never had a happy family dinner or celebration. I’ve never been warmly embraced by a family member. I’ve never known what it was to have a family member feel proud of me or be there for me when I needed somewhere to turn.

I hope, as Operation Thrive continues a pace, that these family relationships can thrive too. Some much time has been lost. We can’t get that back. We can only try to make the most of what we’ve got.

Thank you for reading.

Heart x

P.s. How exciting that I’ve just been able to add the category ‘Family’ to my blog, for this post 🙂 .

 

 

Going loopy?

I hope you’ll forgive my play on words. I like a snappy title, and a spoonie’s got to have some fun 😀 . The (excellent) Spoon Theory itself is particularly relevant to this post.

I have an appointment with my (fairly new to me) GP tomorrow afternoon to discuss the results of recent tests – blood, urine and E.C.G. They were ordered because I’ve been experiencing palpitations and episodes of breathlessness, among other new symptoms, and because my GP also found my blood pressure to be high.

In the last week alone, my skin has continued to flare, although much less dramatically thank goodness. I’ve been having joint pains (Fibromyalgia produces widespread pain but it’s felt in the soft tissues of the body), headaches and further episodes of blurry vision. This weekend I have mouth ulcers. This is on top of my usual spoonieness!

I’ve twice been referred to a specialist – rheumatologist – ten years ago and again around five years ago. I was living in different cities and so went to different hospitals. The first specialist was not especially thorough. He said the results were inconclusive but that I probably have Fibromyalgia. He told me to look it up on the Internet and that was that.

Fibromyalgia and Bile Acid Malabsorption – my primary (physical) diagnoses are not progressive conditions and yet my symptoms have progressed. In the last five years alone – I have been diagnosed with Alopecia (hair loss) and Rosacea, both by a dermatologist who considered Lupus, but decided against the diagnosis on balance; Polycystic Ovary Syndrome, test results (bloods and two ultrasounds) were inconclusive but my then GP said … “it probably is that,” and so endeth the investigations; and finally I was diagnosed with Raynaud’s Disease. The (new to me) female GP who diagnosed it printed an information leaflet for me and, as we looked through it, we quickly realised that I met the criteria for secondary Raynaud’s (that’s Raynaud’s secondary to an underlying condition that’s causing the Raynaud’s) rather than primary Raynaud’s (Raynaud’s in isolation). Are you still with me?!

This prompted my second referral, with the GP querying Lupus (there’s that word again) or mixed connective tissue disorder. This experience of the rheumatology specialism was far more thorough. I spent several hours at the hospital undergoing numerous tests. Again the results were deemed inconclusive, and no ‘unifying’ diagnosis was made or follow up required.

I’ve been concerned for some years that a single underlying condition may link my symptoms but have accepted the various findings and got on with things as they stood.

I appear to be in active ‘flare’ at the moment, with some new symptoms, some not, and some apparent worsening (progression) of existing symptoms. A referral to a specialist generally means spending time on a waiting list. Perhaps at previous points of testing I was not ‘actively flaring’ and so the results were inconclusive. I am hoping that this time, if there is something to be found, that it will be found. Am I going ‘loopy’? In other words, do I have Lupus?

I should note that I’m not angling to have Lupus. Who would? It’s an serious auto-immune (where the immune system becomes overactive and attacks healthy tissue) disease. It can be experienced relatively mildly but can affect the major organs of the body – including the skin, and also the heart, lungs and kidneys. Like a lot of the conditions that fall into the spoonie/chronic illness category, it is experienced differently from person to person. Again, like other spoonie conditions, it can be difficult to diagnose. I know that something is going on with my body and I’m concerned that if correct diagnosis hasn’t been made, that irreparable damage may be occurring unchecked.

I eat healthily (outside of the two episodes I’ve had of diagnosed eating disorder), I very rarely drink, I’ve never smoked and (outside of being incapacitated by mental illness) I am as active as possible and enjoy exercise.  My symptoms began occurring in my late twenties. I won’t bore you by listing them all but they and their onset are commensurate with connective tissue disorder BUT could also be otherwise explained; that is the nature of the beast.

My status as a trauma and abuse survivor has impeded diagnosis of my physical health problems. For a decade my symptoms were put down to my then depression and anxiety. It’s true that mental illness can certainly impact on the body, but there was enough to suggest that more was going on for me. It has often been ‘a fight’ to be taken seriously, and that in itself took its toll. I know that this a problem in mental illness care at least here in the UK, and that physical illness is often missed or ignored. It’s reported anecdotally and mental health charities have also taken up the issue.

Increasingly, I’ve noticed that GPs, pushed for time and with limited resources at their disposal, are tending towards doing the minimum and ‘fobbing off patients’ where possible. The service appears to have become more reactive, with preventative measures taking a back seat in our underfunded, over-stretched National Health Service (NHS) in the UK. This is not an attack on GPs or the NHS. I very much value the NHS. I believe that we are incredibly lucky to have such a service and should fight not only to protect it but to ensure that it’s in the best possible health, if you’ll pardon the pun.

As a result of my experiences of abuse, my ability to be assertive and to advocate for myself has been impeded. That is changing, slowly but surely. Christine who devised The Spoon Theory and helped to create an international community of people trying to live well with chronic illness, has Lupus as her primary diagnosis. Spoonies are likely to tell you that it is very important to be your own best advocate. I hope I can be mine. I’ll let you know the outcome of tomorrow’s appointment.

Thank you for reading. Comments, chat and tweets are welcome as ever, particularly in this case from other spoonies who may have some thoughts on this.

Heart x

 

 

 

‘Painsomnia’ and a painful mind

Yesterday was, to be frank, a bit rubbish. Pain disturbed my sleep on Monday and kept me awake for the greater part of the night. Lack of sleep caused other physical symptoms to flare; this ‘symptom siege’ coupled with fatigue, felled my body but allowed my mind the freedom to perform a fandango!

Fandango
noun
  1.  a lively Spanish dance for two people, typically accompanied by castanets or tambourine.
  2. an elaborate or complicated process or activity.

There were no castanets or tambourines. This was more lively storm, than jamboree. Grief was first to step onto the floor and whirled around with emotional pain, anger and depression in the ‘fandango’ that was my mind trying to process recent events and their relationship to the abuse and trauma I experienced in the past. This is, as I’ve said previously, a welcome process but it is painful. This is especially true when it occurs unbidden AND when support – which is twofold (someone/some people with the experience, professional or otherwise, to help you with the process and someone/some people who can listen, be kind and offer a hug – essentially comfort you) – isn’t readily available.

My interim therapist is on leave this week – 12-12:50pm on Wednesdays is my usual session time. I say interim because it’s not ideal. I’m accessing therapy via weekly telephone sessions via a mental health charity, while I’m continuing the, to date, 17 month wait for trauma therapy on the NHS. I’m due to be assessed on 10th July so that the NHS may decide what, if anything, will be offered to me.

I actually don’t have clear recall of all of the ‘processing’ that my mind got up to yesterday.  A lot can happen in a short space of time – it can be a violent but relatively short-lived ‘storm’. My lack of recall could be because …

  • There was a lot going on – too much to fully take in
  • My memory was impacted by the low mood that came with the storm
  • In the absence of ready support, my mind ‘shut down’ or has ‘dissociated’ from the thoughts and feelings involved because of their traumatic/distressing nature

I know that suicidal thoughts occurred. Please know that on this occasion no action is required in response to those; I am safe. These were passive thoughts. There was no active planning, there wasn’t even a desire to die, this was a sense that perhaps suicide might ultimately be my only option because of the pain and the difficulties I face. The feelings passed and I don’t have any suicidal thoughts or feelings at the moment.

I know that I was at times distressed because of new understanding regarding my abuse. I know that I cried, which is still something I can’t do easily.

I know that at least one point I felt real anger about what was done to me. I very rarely feel anger. In fact, last year a psychotherapist suggested that I might translate anger into guilt and so feel that instead. This makes some sense to me but is something that I’ve yet to explore.

I managed to sleep better last night. I don’t know what caused Monday night’s severe pain. I don’t think I had done too much. The only ‘new’ activity was the wee stroll that I took up to the shop and the postbox at the top of my road. It won’t stop me trying again, but I have to be mindful that, at the moment, this may be a pain trigger.

I was able to get up within an hour or so of waking, and shower and dress. I was about to type that I was looking forward to a visit from a friend this afternoon … when she arrived an hour early … so here I am again, post-visit. We had a lovely afternoon, a really good natter and catch up. She brought fancy biscuits that went down well with our cuppas 🙂 and some lovely flowers. I really love flowers and was just thrilled.

We haven’t known each other very long, but I think this has the makings of a good friendship. I think of her as a ‘breath of fresh air’. It’s taken me a long time to understand that I have a tendency to attract people who are drawn to my energy and enthusiasm … but who want to ride on the back of it, weighing me down. This friend has energy and enthusiasm and a ‘grab life by the horns’ attitude to match mine. She’s keen to introduce me to some of her friends – one, a former GP, who writes and the other a fellow trauma survivor who loves arts and crafts as much as I do. I look forward to meeting them both.

I had thought of taking another wee stroll today, but decided against it, my friend was here for three hours. I’ve been doing laundry and chores, and writing, and I’ve still to do my treadmill time and prep a stuffed pepper to throw into the oven for dinner. I’m having it with some microwaveable broccoli ‘rice’… it’s good, honestly! Hopefully, I’ve just enough ‘spoons’ left to accomplish that.

I had some news earlier from the social worker that wasn’t great, but not terrible, we’ll cover that in another post.

Thanks for reading.

TTFN,

Heart x

 

 

A look at the BIG plan …

With me, there’s ALWAYS a plan. I discovered Bullet Journalling last year … and was as happy as the proverbial pig in muck/mud/sh*t – however you choose to term it, having discovered a cool system to both simplify and maximise my planning activities!

I was in some pretty deep doo doo at the time and struggling to keep afloat, 2016 being my annus horribilis, but at least I had a ‘customizable and forgiving organization system’ to help me… And one, according to the creators of the system, that will ‘teach you to do more with less,’ surely that’s got to be a goodie for a spoonie? 

Tea is oft purported to be the cure for everything. Personally, although I like tea, I think stationery is the answer to everything. A nice new notebook, PENS, lots of lovely PENS, and paper, and labels and stickers too … oh the joy! Give me those and I’ll scribble and doodle my way to a master plan. If you’re a stationery/planner geek, you probably already know the joy of just doing a Google image search for ‘bullet journal’ …

A Bullet Journal is essentially – diary/planner, journal, to do lists, notebook, budget tracker … and anything else you need … in one. For me, a bullet journal keeps me on track but does away with the need for a multitude of ‘systems’, and it’s simplified approach does allow you to ‘do more with less’. Click here for a quick lesson if you want to learn more or start your own.

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Journal Geek-ery right there: Just looking at them makes me smile, I am THAT bad

I hadn’t named this latest plan until it just struck me that I usually do – others have been Operation Self Care and Operation Fight Back – and then I knew that I wanted this one to be called Operation Thrive. I feel a bit emotional having just written that, because thriving means so very much to me. I had a taste of it earlier last year – when I had some support for a time. I survived but I plan to thrive is this blog’s tagline. Thriving is my recovery goal. Abuse recovery to me = thriving. I can’t wave a magic wand and cure my chronic health issues but when I’m living my life to the fullest alongside them, that’ll do me! When I’m thriving I’ll know that I’ve won, that despite all the pain, and grief, and terrible terrible loss, and so much time spent just existing let alone living, I’ll know that I’ve made it. I know that I’m already a winner in that I’m not bitter, and because I’m a good person and I am, by choice. very different to the people who abused me. BUT thriving, that’s the ultimate WIN.

Operation Thrive – plan initiated 10th June, 2017

PRIORITY 1: 

  • WRITING – finally this is coming top of the list and it’s staying there.
  • Ending isolation and reducing loneliness by increasing connection
  • Reinstating routine and regaining function
  • SELF CARE!
  • Being able to get out of my flat – and then get out and about locally
  • Getting my flat ‘immaculate’ ready for a routine inspection by the landlord’s agent
  • Re-engaging with GP and getting vital health checks done
  • Taking steps to begin to tackle disordered eating
  • Psychotherapy/Trauma therapy – it’s difficult to know where to place this because of difficulties/delays with the provision of it

PRIORITY 2:

  • Starting to rebuild fitness – and taking steps to resume physiotherapy treatment
  • Visiting dentist both to resume my treatment programme to restore my smile devastated by a dental phobia caused by abuse, and also to assess damage caused by latest crisis and create further treatment plan. (Delayed by illness and financial difficulty)
  • Optician –  have overdue eye test and purchase new specs. – also delayed by illness and financial difficulty.
  • P.I.P – make a new application for Personal Independence Payments

PRIORITY 3: – can only be undertaken once a support worker/P.A. is in place (assuming the local authority awards funding)

  • Back onto a calorie counted diet
  • Increased exercise – talking walks and going swimming – and once physiotherapy is complete joining an 10 week exercise management programme for people with disabilities/chronic illness – assuming I can get onto it, if not I’ve got a Plan B 🙂 !
  • Getting out and about beyond my immediate area and support groups
  • Restarting hobbies, building new ones and making new connections – join a choir (September) and an art group

There are sub-categories to some of the above – but you get the gist as it stands! Priority 1 is all now either underway or complete.

Getting back to work is a HUGE goal, but as I am not to try to run before I can walk, for a change, I’ve not yet included it on this plan. Once I’m settled into Priority 3s, I’ll add more!

The bulk of my Bullet Journalling is at the moment centred on ‘Daily Logs’ – a list of what’s happening and what’s to be done on any given day, and daily recovery focused journal entries that I’ve called ‘Recoverlogs’ – a term shamelessly snaffled from mental health campaigner and vlogger, Jonny Benjamin. You may have seen the brilliant Channel 4 film Stranger on the Bridge about his own mental health story.

To do lists keep me on track but are also a great motivator. It feels SO good to tick … ‘done’ ! Budgeting goes in there too, shopping lists, ideas, thoughts and plans for blog posts, notes for and on therapy sessions, and so on. This plan is no small undertaking. There is no one working on it with me, no one to oversee it. My social worker is classed as my ‘key worker’ but is only involved with me as far as carrying out a social care assessment and managing the application for funding to pay for some support. My GP doesn’t know the half of it, as there is never enough time to fill him in on all that’s going on for me. I hope there’ll be an opportunity to share the plan with him at our next appointment on 3rd July.

 

 

Heart REset on Living + 14 days

Fourteen days on from the day that my high school ‘bestie’s’ unexpected appearance on my doorstep tethered me to life, a lot has happened.

I’ve made a lot of progress away from the suicidal depths and towards my goal of thriving. I’ve already written about my adventures in admin. I *think* I’m winning so far but there’s more to do!

Here’s what I’ve done so far. I’ll give you a bullet list, I’m going to write another post, perhaps tomorrow, about MY BIG PLAN.  With me, there is ALWAYS a plan … even if at the worst of times, it’s only a suicide plan. I thrive on planning, targets and goals, proactivity and productivity. Did I ever mention that I’m a wee bit driven …

Perhaps having to make the best of terrible circumstances when I was younger is what helps me to capitalise on every scrap of hope, opportunity or potential. Regardless of the reason I’m very grateful for that capacity.

  • I’ve showered 13 out of those 14 days.
  • I’ve been out twice to take out my rubbish, twice to visit my GP surgery and once to go to the hospital – having vital physical health checks. Bearing in mind that prior to this I had been completely housebound for four months.
  • I’ve started on the road to rebuilding my fitness and stuck to my plan for that.
  • Progress is ongoing following my assessment for social care (a personal assistant for four hours per week) – I’ll blog separately about that.
  • I’ve set the ball rolling for a return to the physiotherapy treatment I was about to begin when the crisis that left me housebound hit in February. I may not be allowed to resume – a funding issue – but it won’t be for the want of trying.
  • My eating is improving – another more in a separate post for that!
  • I’ve been keeping in touch with friends via email and social media and they are keeping in touch with me. I feel that I’m rebuilding some old friendships and developing new ones – if you fall into either category and agree, do let me know, my friendship confidence is still a little shaky :-).
  • Another dear friend stepped up two weeks ago, asking how she could help, her message moved me to tears. It’s gratitude, she said, for a “normal” life. This is because of the research I did that helped to crack the conundrum of the rare condition that was devastating her life. She said, “I have never nor will I ever forget what you have done for me.” I well remember her illness, and know I did research but much beyond that is lost to me. This was soon after my abuse was uncovered and the rug was pulled out from under me. I was all over the place but I’m so glad I seemed to have pulled it out of the bag then. Her words mean the world to me.
  • I asked a Twitter pal if she’d like to meet up next year – there’s reason for it being next year – and she said yes, which is lovely, and I look forward to our ‘day out’ .
  • I received a ‘care package’ in the post from another online friend, full of thoughtful items – either useful, fun or edible! From comedy dvds to batteries, a massage ball to peppermints.
  • On all the occasions that I left my flat I wasn’t wearing any make up (OK, except lipstick) this is also progress – and yes, more on that in a separate post!

I hyper-focus on ‘the bright side’ – that song could be my anthem, and I’ve recognised that in the last few days I’ve been having thoughts along the lines of … Look at you, you’re doing OK. You’re fine really. You don’t need support. It’s a familiar refrain.

I know a lot about ‘getting on with it’. I know a lot less about thriving within a supportive network. Growing up, trauma was played down and I was schooled to ‘get on with it’, to such an extent that it’s one of the main reasons that I didn’t recognise that I was being deliberately harmed.

Aside from that, having spent four months housebound, showering a couple of times a month, bingeing, starving and stinking, alone, dealing with flashbacks, grief and increasing despair, the last two weeks do look like nirvana in comparison!

I have to remind myself that while it’s great to applaud each step of progress and C-E-L-E-B-R-A-T-E the small things … it feels odd to call them ‘small’ because they are huge achievements when you’ve been struggling so much, but to most people showering, going outside, doing a little shopping, taking care of the basics, are small things … I have to have an eye on the bigger picture. That’s to say that I need to recognise the difficulties I still face, the burdens I carry and the mountains I have to climb, and allow myself to get help where I can AND feel worthy of it.

There’s more on the progress front but I think I’ve given you the highlights! I’m flagging, I’m low on spoons today. I plan to do my treadmill ‘5’ then allow myself to ‘flop’ and indulge in a telly fest of Doctor Who and Pitch Battle!

I don’t know where I would be now if my friend hadn’t made that mercy dash two weeks ago. I am glad that I don’t have to think about that.

Thank you for reading. As ever, I welcome comments, conversation and tweets.

Heart x

A whole lotta grief

GRIEF!! That word should be writ large with exclamation marks permanently attached.

That’s how it feels when it hits you.

Actually, grief is complex. Studies have been made to try to understand it in greater depth. There’s even a model postulating that there are five identifiable stages of grief: denial, anger, bargaining, depression and acceptance. I’m not sure that I can put myself firmly at any of those stages right now, but I suspect that I’m somewhere between depression and acceptance. I’m feeling the pain of grief – and boy, does it take your breath away – but, after last weekend, I’m not feeling so hopeless about it.

Why am I grieving?

I’m tempted to call mine Uber or Ultra-Grief because I’m not grieving for a single loss rather multiple (mostly major) losses and because the process feels akin to attempting a hardcore endurance event, like the Marathon de Sables (If you’ve never heard of it, do read about it and let your mind, like mine, boggle over who would want to attempt such a thing :-D). I think I’ll go with Ultra-Grief, like my Ultra-Jigsaw, it seems a good fit … ha! See what I did there? Jigsaw … pieces … fit … oh, never mind.

How the flip do you even begin to recover and rebuild yourself and your life, when you’ve lost so much, let alone begin to grieve when you’re busy enough trying to survive?

Well … if you’re determined, proactive, resourceful, able to be gutsy and have words that help you to achieve many things … you think yourself damn lucky, for a start. At least, that’s how I look at it.

I lost all my family, all my close friends – they had either upped and left or I’d put huge distance between us, my much beloved and hard won career, my self esteem, confidence, my health and my fitness, my marriage, the chance to have children, my smile and even a lot of my hair (more on the latter two in the post The Creature from the Black Lagoon) and I’d found myself in poverty, having lost any element of financial security. Make no mistake, I was lucky, I didn’t lose the roof over my head as others have, but at worst I couldn’t afford food and had to rely on the charity of strangers, likewise I couldn’t afford to heat my home and wore many multiple layers indoors that winter, including hat, scarf and gloves, and retreated to bed when that wasn’t enough.

Leaving my marriage gave me a certain amount of ‘head space’ – as once things were straightened out I was no longer being impacted by its dysfunction. I felt stirrings of grief when my marriage ended but I had to throw myself into finding somewhere to live and all manner of other vital stuff. Grief hit me like a train when a loved one – not a relative but the closest I had to it – died a few months later after a six week illness. Suddenly, I was alone in the world.

It was early last year on a remote ‘retreat’ for a convalescence break that I started to realise that I couldn’t ‘feel’. I’d found this wonderful wee place run by a psychotherapist for incredibly small prices and managed to save a bit from back-dated benefits and obtain a small grant from a charity, in order to go for five days. I ate simple but delicious home cooked food, slept well, walked in ancient woodland, worked in my art journal and undertook some therapy and related exercises. (As an aside, I am hoping to go again later this year.)

As I’ve often said on here I’m a natural ‘Tigger’. I’ve boundless enthusiasm and I freely enthuse about all manner of things –  nature, architecture, art, theatre, and people, to name but a few. Yet, I began to realise that, for the most part, I couldn’t feel my pain, despite the enormity of it. There had been so much that I’d unconsciously shut it down in order to keep putting one foot in front of the other. I’d begun by discussing with the therapist how I longed to be able to cry. It upset me (not that I could show it) that I couldn’t cry and I felt like a cold fish as a result, something which is very much at odds with my character. I could, at a push, shed a couple of tears. My eyes did ‘fill up’ sometimes, but to sob was pretty much beyond me. I came to realise that through all the therapy I’d undertaken, and which I credit with saving my life after my initial disclosure, and also getting me through my marriage and to such a place that I was able to leave it, despite having no money and nowhere to go; I had never cried. I could discuss the darkest of experiences, detail abuse after abuse, and traumatic events such as my father’s suicide and his violence towards my mother, but I couldn’t ‘feel’ them. I intellectualised my way through therapy and I did learn a great deal and make a lot of progress. But, what I learned late last year is that, in the words of my current therapist: If you can feel, you can heal. 

Two things happened in the weeks immediately after my time at the retreat. My GP of a couple of years, with whom I’d developed a solid relationship, particularly in the preceding six months, relocated to a new area. Two weeks later, the support I’d been receiving for six months from a housing support officer was cut overnight. It’s a short term service and was put in place when I was at risk of losing my home. Having that consistent support for the first time in my life, going on retreat and feeling ‘peace’ for the first time in my life, and having the realisation about ‘needing to feel’, all seemed to instigate an ‘unlocking’ in my mind.

I welcomed this at first, I was ready to take this on, and work through whatever was to come. Until suddenly, I was again without support …

Since then I’ve been increasingly feeling grief, but without support and in very difficult circumstances, I wasn’t able to cope with it. A close friend died just before Christmas. She had been ill but was expected to recover, she was only in her late forties. She was the best friend I’d made since my moving to my adopted home city six years earlier. Other friendships were made, but when I ignored my ‘gut feeling’ again feeling that this ‘beggar’ could not be choosy and should take what was offered. My late friend and I knew each other for a little over two years. The time we could spend together was curtailed by our respective illnesses. In some ways I hardly knew her but we connected and there was great deal of potential in the friendship. I’ll always remember her sitting for me as I was teaching myself to draw (she was a talented and exhibited artist), my first life model. Alas, I was so nervous, it wasn’t my best work! Discovering that she’d remembered me in her will, floored me. I genuinely miss her terribly. I’m not one to bemoan ‘Why me?’ Stuff happens. Still, I found myself asking why, if I had to lose a friend, it had to be her. I don’t feel comfortable admitting that, I wasn’t really wishing someone other dead, was I?

I cried at her memorial service, more freely than before. This was because I know how much of a loss she is and how much she could still have lived. It was also because of my own grief at losing her from my life. What I didn’t expect as I sat in the large city centre church, which was packed, and listened to all the wonderful words and memories that were being said and shared about her, and as I met and spoke with several members of her family afterwards, was the barrage of grief of a different kind that assailed me. My friend had faced many challenges in her life. She was diagnosed with bipolar disorder, which had a huge impact on her life, medication used to treat it ultimately caused kidney failure which contributed to her death.

That day I saw what you can achieve, despite challenges, when you are loved or more specifically when you grow up in and continue to be enveloped by a loving family. It was wonderful to behold … and it was also agony. It took my breath away. After spending around 90 minutes at the small gathering for family and close friends after the service, I realised that I really didn’t feel right. I felt ‘spacey’ and had a nebulous sort of sense that I wasn’t OK, that I was no longer coping. Leaving some time later I set off for home. I intended to pick up a few errands en route before catching a bus the rest of the way. I was aware of the first few minutes of the walk and then arriving at the mini supermarket where I intended to shop, but not the 10 minutes in between. In the shop I wandered and wandered aimlessly, returning again and again to stare at the same things but I couldn’t seem to process or complete the task. I remember seeing a Big Issue seller outside the store and rummaging for change in order to buy one, only for him to have completely disappeared a moment later. I wondered if he’d even been there in the first place. The bus stop was close by but I had to cross two busy roads to reach it. I remember waiting to cross the first and there was a bus about to pass in front of me. I remember seeing it and seeing myself, in my mind’s eye, going under its wheels, although I had no thoughts of suicide at the time. Although in my mind, it was vividly real. I felt shaken, dazed and disorientated. I know I caught a bus and got home, but I don’t know how. It took me four days to re-orientate myself.

Seeing my dear friend on Saturday after so many years and feeling such connection is SUCH a happy thing. I’m loathe to describe it as bittersweet, because it was SWEET. SWEET, SWEET but challenges did arise from it. I feel grief that so many years were wasted when we could have been closer. I feel grief that I wasted time on some other friendships where there was no real connection. I feel grief that the memory of her knowing that I was unhappy as a teenager and was there for me and hurt for me, was somehow lost. I feel grief that I wasn’t able to confide in her – and through her, her lovely Mum – to greater depth. The past is the past and cannot be changed so there is no point in dwelling on it, still the sadness demands to be acknowledged and that perhaps if I had, I might have recognised that I was being abused and found a way out of my family much earlier, instead of in my thirties, by which time much more damage had been done.

Despite the grief, I am not AT ALL sorry that she and I discussed these things, and I hope in time that we’ll discuss more, because it is validating, it is helpful for me, and it is something that has the power to help me to heal.

Before the State of the Heart address (thanks you know who, for that inspired phrasing) that was Heart Set on Dying?, grief, when it hit, was unbearable and I shut down as far as possible in order to cope and keep myself safe. It was unbearable because I was alone with it and had no sense of belonging anywhere or being ‘tethered’ in any way. I’ve felt it in a big way once since Saturday, it was undeniably very hard but I went through it WITHOUT shutting down. I truly hope that those of you who read this who have stepped up for me in recent days can understand just what a difference you make.

I don’t know yet what the future holds in terms of dealing with this grief. I don’t know whether I’ll be doing it with my current therapist (voluntary sector) or whether if NHS trauma therapy is offered, now that I’ve reached the top of the 18 month waiting list and am due to assessed next month, that will be the place to do it, or whether I’ll seek out specialist grief services such as those offered by Cruse. I’m still finding my grieving feet …

Thank you for reading. This is waaaaaaaaaaaaay longer than I had intended.

Heart

x

 

 

 

Heart REset on living (a.k.a the power of hope)

I do love that title but I can’t take the credit for it – thanks my friend for coming up with it, it’s inspired, you know who you are.

Well … what a difference a day makes!

Writing the post Heart set on dying?’ on Friday was excruciating. On Twitter, I likened it to performing open heart surgery on myself. Certainly readers who are familiar with my blog noted it to be my most ‘raw’ post to date. It left me feeling very exposed. I even toyed with the idea of deleting the post an hour or so after publishing it, which is, I think, a first. I’m not afraid to explore difficult stuff, but I’ll do it with a smile, with humour, anything to deflect, otherwise I might be troubling you; you might judge or reject me.

You might think me weak.

I can feel a barrier in my mind when I try to really capture my feelings around that thought but I know this much; it’s a fundamental for me. Being consistently told when I was growing up that I was weak and lesser, in a multitude of ways, had a huge impact. I never wholly believed it, a life-saving grace, but I was deeply affected by my family’s apparent belief in it and it has left me with a deep-seated fear of being deemed weak.

Primarily, I wrote that post first and foremost to try to release the pressure in my head; its volatile contents were fit to explode. I did also hope to connect in some way, otherwise I could’ve just scribbled in a notebook. I didn’t, I chose to write here and publicly post. Secondly, I’m uncomfortable with the idea of dying without having put my ‘story’ out there, by that I mean without someone at least knowing what my life has really involved and who I really am. Third, I’d no expectation of being able to reach someone in a way that resulted in meaningful connection but the spark within that fuels me, held hope of it.

I knew there was every likelihood that my teenage best friend would read that post, as I introduced her to my blog earlier this year in what was a tentative step on my part to try to decrease the distance that I had put between us. I did not expect that she would read it late that very night and turn up on my doorstep the next day!

Yep, she did.

She lives almost 200 miles away – something like a six hour round trip –  and we last saw each other in 2002.

We use a messaging app to chat. When, yesterday, a photo of my friend, who is not given to selfies, popped up, the background of which looked like the distinctive city where I live, I was a little bemused. I assumed I’d got it wrong, or that it was an old photograph. I could see that she was writing a further message and calmly awaited further explanation.

I am on my way to put the kettle on … it began.

I gasped, for a moment I thought she was kidding before swiftly considering that she would not joke having read that post, which I knew for certain she had.

***

So, we hadn’t seen each other for 15 years – we’ve known each other for 33 years.

I don’t think a year has gone by without some sort of contact, even if just a scribbled note in a greetings card. We perhaps connected on social media between three and five years ago, I can’t remember. We’ve certainly chatted frequently online for the last year, if not longer than that. I curse my addled my memory here for not being able to remember.

They say that the best of friends can pick up where they left off, no matter the time that has elapsed, as though it were only yesterday. I’ve heard this, friends have said it of my friendships with them, but I hadn’t seen it until yesterday.

“Let’s have a cuppa”, she said.

“I haven’t got any milk”, I said, genuinely appalled … and fearing that I could never again set foot in our Lancashire homeland having committed the cardinal sin of not being able to offer someone ‘a brew’.

“You have now”, said she, revealing a pint of milk with a familiar flourish, swiftly followed by teabags, coffee, a choice of sandwiches, strawberries, chocolate, fresh juice, and dinners for the following three nights courtesy of M&S. She’d remembered that I’m vegetarian. There was also tissues  – in case we got emotional – and the softest, most ‘snuggle-up-able’ ‘comforter’ in one of my favourite colours. That girl got it covered!

If you read Heart set on dying? you can probably imagine that my socks had been well and truly blown off by this time.

Given the distance that I put between us, given that she was the friend that I seemed to have most feared confiding in as my ‘car crash’ of an adult life unfolded, I was staggered to realise that I felt comfortable, that there was not a moment of awkwardness. We chatted and meandered about my flat, like it was something we do every week.

That fear of confiding seems to have been rooted in shame, a perception that she must surely see me as a ‘failure’, a ‘dropout’ or a ‘loser’. She and I went through our teenage years together, closely entwined, with different dreams and ambitions but with a path mapped out through O level and A level examinations and on to the hallowed territory of university. Amid the abuse, I fell at the first hurdle and I had long been left behind by the time I fought my way back onto the path and ultimately made it to university. Perhaps I feared her reaction most because she mattered most, I don’t know. I am sure that it will be healing to explore those feelings in future therapy. For now, they are difficult to access, I’ve had to ‘shut down’ a great deal over the years in order to continue to put one foot in front of the other. Now I know that I am accepted, not judged but embraced. It’s a new feeling and I sense it will take some time to embed itself and take root.

I was shocked to be reminded that she knew more than I thought, as she recounted, among other things, my often reluctance, and fear of, going home. She knew, back then, that I was unhappy, and that my surviving parent was ‘odd’ to say the least, but nothing of the violence or details of other abuse that was the basis of my daily life. Abusers school in silence. This was the first time I’d discussed my situation, my abuse, in any detail with someone who was in my life at the time. It was emotional, it was powerful, it was tough but I was really glad to do it. It was validating, and it’s also helping me to begin to fit together some of the pieces of that ‘Ultra Jigsaw’. I’d like to write more on that, but I am time pressed today and I have a mountain to climb tomorrow and I need to prepare for it.

I wish I could tell you my friend’s maiden name. I have always known it but only this afternoon did it suddenly loom large in my mind making me gasp and then laugh. I am not superstitious but to think that through those terrible teenage years amid the horrors of my abusive home life, I had a best friend with a name to suggest that I should, that I could hold on to her. We used to read our horoscopes with glee and anticipation back then, and asked burning questions of a sort of a pendulum constructed of a necklace and a ring, you know that thing? You’d think they might have nudged me to note the obvious!

Thank you to those who read ‘Heart set on dying’, and sent messages of comfort and support. Please know that you are valued.

Yesterday’s visit meant more than I say and has given me yet more still. I began to capitalise on it immediately and when I’ve the ‘spoons’ , and the time … there is always so much to do, I will write here, in explanation.

Thank you, as ever, for reading. Comments welcome.

Heart x

 

 

 

 

 

 

 

 

 

 

Getting my s*it together, as I believe is the expression, and publishing a post!

WordPress loves to remind me how many posts I’ve drafted but not published. I know this, dear WordPress, it’s not for the want of trying. Today, I decided that I would prioritise writing a complete post AND publishing it, over just about everything else.

My current situation is so complex and there are so many things happening that it’s impossible to explain it in a few lines, even though writing about it and sharing that writing is very helpful to me. Doing so takes a lot of time and even more energy, and ‘spoons’, that’s chronic illness shorthand for energy and ability to function, click the link for an easy explanation), are currently in very short supply.

Yesterday, I managed to shower and dress in order to be ready to answer the door to receive a delivery from a parcel courier. I have had to force myself to allow ‘Pharmacy Bob’ (who I’m certain is the antithesis of his more famous namesake) to see me in smelly dishevelment but fear negative judgement too much to ever make a habit of it with others. Afterwards I had to get back into bed because I was so physically depleted by chronic fatigue and pain. I longed to be productive, there were things to do, so much I wanted to do; it was a struggle to limit the impact of my lack of capacity on my mood. I managed to get a bowl of cereal and kept hunger at bay for the rest of the day with dry crackers, risking a flare up of a painful stomach issue that occurs if I get too hungry. That seems to have been triggered when struggling so much last year I went, at worst, eight days surviving on only sips of water. (I ended up in A&E some weeks later with urinary retention, a complication thereof, which is, I discovered, a medical emergency.) I didn’t sleep after my return to bed, despite having only managed a little over three hours the previous night, but I rested and by evening, had at least the capacity to watch the BBC Question Time election special and engage in some lively political ‘repartee’ on Twitter, as it aired!

I’m aware that to some people that much of this post could sound like I’m moaning, feeling sorry for myself, demonstrating narcissism, or focusing on the negative. Actually, anyone really getting to know me understands that I am relentlessly positive and also hugely enthusiastic about grabbing life by the horns and making the most of it. Call me a snowflake, but sometimes it hurts to be thought of as otherwise.

We so often shy away from hearing difficult stuff, we hyper-focus on the positive, often because we realise the difficulty or horror of something, and perhaps that a positive outcome may not be possible, and sometimes we don’t know what to do or we can’t deal with that so we shut it down, don’t really listen and we fire out the positive platitudes.

I love blog comments, tweets and interactions in general. I really do. I love hearing from you. Please just don’t tell me to be positive, if you’re tempted, even though I know that you mean well. If you want to be supportive, hear me. Tell me that you understand that I’m facing grim circumstances. Tell me that you appreciate my determination to try to keep going. Offer help if you’re able, and I appreciate capacity for this can be limited in all sorts of ways, anything from a friendly word on a postcard, a poem or a film you think I might love, or a chat to a ‘care package’ or a visit. I’m fighting the urge to delete that last line – and I’m going to leave it there however uncomfortable it makes me feel, the reasons for that are for another post.

I’d woken, yesterday, with a very red, swollen and itchy face. It’s the second time that’s happened in the space of a month, but it hadn’t ever happened prior to that. I’ve had eczema, relatively mildly, since I was child, although as a child my family didn’t recognise it as such. I was screamed at when I scratched, punished if I dared to get blood on my nightclothes or bedding, and asked if I had fleas. It’s only really been in the last few years, since I entered my forties, that I’ve begun to experience severe episodes of eczema, at first on my hands, later on other parts of my body, and then on my face, particularly around my eyes. At first I assumed that this month’s sudden flare up was eczema, only the worst to date. The skin was red, itchy, and a little scaly. The area around my eyes was also puffy and swollen. I used the usual emollient treatment for eczema but it burned and felt sore. It took several days for my skin to begin to settle and clear up. The episode that began yesterday got me thinking. Severe redness and swelling/puffiness were the main issues, the majority of the area was not itchy and it isn’t scaly. I suspect I’ve developed an allergy to a skin product that I’ve happily used for some time, and is in fact the only thing I found that actively helps to reduce the impact of my Acne Rosacea. (Yep, I’ve got that too. Apparently, chronic conditions like to party together.) I’ve only used the product twice recently, the night before the two reactions. Phooey! I would get it checked out by a doctor or a pharmacist – but getting to see either is an issue just now, one that I’m working hard to surmount – more on that, again, in another post.

My fingers are also being attacked by pompholyx, and feel as though they’re getting more raw and painful to use by the second. I also have the more usual eczema on the rest of my hands, although that flare up does, mercifully, seem to be easing. Added to that I’ve had a infected thumb for a few days, and I’ve had an extensive flare up of something – again, I think this is eczema – on my neck and chest for several days. My skin is a rebellious teenager – raging out of control.

My ‘spoon count’ is generally very low just now because a series of challenges including bereavements, divorce, low income, the emergence of Post Traumatic Stress Disorder – involving flashbacks, dissociation, nightmares, depression and suicidal feelings, and the absence of sources of support. These have left me unable to maintain the rigorous regime of self management that keep me ticking over as best as I possibly can while still living with chronic illness – that’s ongoing illness for which there is no cure – it’s not my fault I got it, it’s just something that can happen to people. I’d barely been near a doctor bar the odd routine visit until it happened to me, then suddenly my medical notes looked like War and Peace in triplicate.  Chronic illness can become acute and be life-threatening, often it’s debilitating and life-altering. It may not kill you but it can decimate your life.  My self management regime includes physiotherapy exercises (very many ‘reps’ per day), graded exercise, diet management, medication, meditation, and a lot more. Without that rigorous regime, and with added stress, difficulty, lack of available support etc, the conditions flare up and begin to rage. It’s fair to say that I’m far from at my best just now … she said in the best tradition of understatement :-D!

Today, I’ve managed to shower and dress in order to receive a further package. Beyond that I’m prioritising this blog and keeping in touch with friends online because isolation is a major issue just now that’s jeopardising my safety. More on that too in another post!

Taking a break just now to nip the loo stole another a ‘spoon’ because, as is often the case, I needed to clean it due to the, shall we say, explosive emissions associated with the condition Bile Acid Malabsorption. Sometimes I leave it a while, when just getting to the loo was challenge enough, sitting on the fear that someone somehow will want to use it in the meantime!

I have no compunction about discussing toilet ‘doings,’ pain, ‘oozings’, ‘leakages’, ‘blisterings’ and boils, despair, compulsive binges and skin picking, and urges for self destruction; I make no apology for doing so. That’s not to say that it’s easy to do. It can be really difficult because you’re often met with negative judgement and a lack of empathy. It’s not the most fun when you’re positive, enthusiastic and determined in the face of adversity, hearing that you’re lazy, boring, narcissistic, not trying hard enough or ‘milking’ the system …

I believe that education, communication and understanding of experiences outside of our own are vital to society, and speak and share accordingly.

I need to have something to eat today. I can make a bowl of porridge, but if I want to eat more than that then I will have to cook more extensively. I have the ingredients to make a veggie chilli ‘non carne’, but it will require a lot of ‘spoons’. I hope to have a phone chat with a friend later. I also hope to manage to do a load of laundry and ‘reboot’ (empty and reload) the dishwasher. I’ve yet to have a drink (Edit: I’m drinking a cup of tea as I do a final read through) and, much to my discomfort, I left my bed unmade to save a ‘spoon’, but finally I have something to publish, and another step on the road to telling my story has been made.

This has taken longer to write and waaay more ‘spoons’ than I hoped. Even telling you where I am just now, with little mention of how I got here takes an age. Arrrrgh! Admittedly, fear of people not ‘getting it’ probably does lead me to say more than I need.

Thank you for reading, I really appreciate it. I hope to continue with more frequent, shorter posts. Things are happening. I have a lot to say! x