Adventures in Admin.

I wish Admin. were an exciting place where I was having the time of my life.

Rebuilding my life after months in the depths of crisis is exciting. It feels really good to be making progress but, I’ll admit, the administration side of the process can be more wearying than any other – emails, calls, forms, research … chasing this person … approaching that organisation … researching grants … and trying to make head or tail of the personal budgets/direct payments system in the ongoing quest for social care support.

In the last couple of days alone I’ve …

  • sent three emails to my social worker
  • spent considerable time and ‘spoons’ researching support and treatment options outside of the NHS for my eating disorder. and drawn a blank beyond the one option I already knew about which may not be suitable.
  • sent two emails regarding a local women’s support group – one a brief testimonial to support the application for funds to keep it going – another to update on my circumstances and inform the facilitator when I hope to be well enough to return.
  • researched organisations offering grants for a convalescence/respite break, sought advice about my eligibility, printed application forms, and contacted health professionals to try to find one who could spare the time to make an application on behalf, as that’s how the system works.
  • undertaken an online ‘test’ for Personal Independence Payments and carried out various tasks in preparation for making a new application, having been turned down last year. For those to whom it’s relevant, the test is here.
  • spent time making notes and trying to prioritise the many current ‘hot potatoes’ and decide what to take to my therapy session earlier today, in order to make the best use of the 50 minute slot.
  • emailed regarding restarting vital dental treatment stalled by serious illness.
  • made numerous checklists to keep track of it all.

This week I still …

  • need to contact several organisations and another person with disabilities who lives locally to try to get some clarity over the best option for me with the (haha) administration of the personal budget/direct payments – and all this before it’s even been confirmed that my application for funding – made by the social worker after several hours of assessment – has been approved. This is because the process is lengthy, and I’m told it will be further slowed if I’m not ready to go if/when approval is granted.
  • need to keep in touch with friends – replying to emails, messages, tweets and so forth. This isn’t a chore. I want to be in touch, I appreciate their contact and it’s vital to my health and wellbeing, particularly as isolation and loneliness are a prominent factor in my life and have had a detrimental impact on my health. That said these tasks still take time and ‘spoons’.
  • need to contact the charitable body which, last year, granted me funding for physiotherapy – it wasn’t available on the NHS. I had an assessment in February and was set to have a further 11 sessions when crisis hit and it had to be put on hold. I can’t even begin to explain the admin. now involved in trying to sort out a restart – both you and I would lose the will to live.
  • there’s further admin. relating to budgeting and welfare payments
  • there’s a mix up with my energy supplier – which owes me money – need to try to resolve that
  • there’s an energy ‘switch’ to organise in order to avoid a price hike
  • there are trips to the GP and hospital which currently necessitate various emails and texts to organise advocacy support where appropriate, or someone to ‘chum me’ there if that’s necessary,
  • tomorrow there’s a visit from my landlord’s agent for a routine inspection.

Blimey, I feel weary just telling you about it, and that’s not all of it but you get the idea 😀 !

My limited ‘spoons’ have to go a long way. I wish the blessed admin would do itself and I could focus on everything else that needs my attention like therapy, exercise, my eating disorder and other aspects of recovery and self management, getting out and about, dental treatment, writing, etc, not to mention the mere basics of daily living.

I think I needed to get that off my chest. Thanks for bearing with me!

Spoonie love,

Heart. x

Once upon a time … a tale of doctors, dastardly doings and mountains scaled.

This story begins at a little after 3am this morning. I’m going to use my tweets to tell the first part of it, covering the period up until around 7:50am.

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It took a few minutes and several callbacks to get through and then I spent a little more time in a queue, with nervousness building. The surgery receptionists are generally fierce on the phone, less so in person, but I was delighted to be answered by one who is pleasant on the phone. I’d been advised to call today at 8 to try to obtain an ‘on the day appointment’ with my GP.

This GP is new to me, I have seen him just twice to date – in December ’16 and January this year. My previous GP, also male, replaced my great GP of a couple of years in April 2016 when she moved to another city. He is, as she was, the only one of this large practice’s many GPs to work full time, readily accessible pretty much at the drop of a hat. Appointments with the rest are like gold dust, as I’m sure is the case elsewhere.

I was really keen to remain with my great GP’s replacement primarily because of the accessibility issue but it wasn’t to be. Great GP was renown for her lovely manner, efficiency and proactive approach, which very much suited me, myself Mrs Proactive. Her replacement is probably in his early thirties. He’s mild mannered and has a lovely soothing voice with an Irish lilt and was always willing to make himself available to me – with the exception of a home visit in an emergency last year. However, he is far from proactive, is reactive only after a fashion, and is prone to moaning about the hardships of his lot as a GP. Don’t get me wrong, I utterly sympathise. I know that the NHS is terribly s-t-r-e-t-c-h-e-d and I’m certain that the majority of GPs are greatly stressed and more than earn their salaries. I hope that many are wholly patient-centred. With appointments scarce and often limited to eight or 10 minutes, I think that time is for the patient not the doctor’s own grumbles.

A good relationship with a GP is vital if you’re ill, of course. This goes double when you’re chronically ill – when your illness is enduring and you often have complex needs. Health impacts beyond the mind and body, lives can be disrupted even devastated by health problems. In the UK, GPs are the gateway to all other services within the NHS and are also generally necessary to the process of obtaining things such as welfare payments and social care – both of which have also been subject to budget cuts and as a result are increasingly difficult to obtain. There are no guarantees of need being met. A good GP in your corner is a wondrous thing.

I’ll write in another post about how I’ve been unable in the last year or so, to obtain NHS support and treatment in the form of physiotherapy, trauma therapy, treatment for an eating disorder and support to deal with the onset and acute impact of Post Traumatic Stress Disorder (PTSD). I’ll keep this post to the difficulties I’ve experienced in accessing a GP.

In September 2016, I was referred, for the first time in my life, to what is known as an Intensive Home Treatment Team (IHTT), they used to be known as ‘crisis teams’. Essentially, it’s the community version of in patient psychiatric care, designed to keep you out of hospital.  The reasons for that referral, the process leading up to it and my general experience of the IHTT warrants a separate post. I’ll confine myself here to detailing my final experience of the team because of the profound impact it had on me, my health and my ability to access my GP and other services.

I was due to be discharged in early November. The service is a short term one, designed to deal with the most severe crises, those which put someone at risk. However, discharge is known to sometimes be unduly hastened due to the paucity of available resources as a result of under-funding. This particular team came in for criticism recently when a young patient died by suicide immediately after being discharged without further support in place. I already struggle with concerns about being a burden but further felt pressured to be OK when I really was not. The day before my planned discharge I considered. I knew that I was still at risk because further appropriate support had not been put in place. I was fighting to keep myself safe. I felt that it would better to speak up ahead of discharge, rather than afterwards when I would then likely have to go through the whole referral and assessment process again – no doubt generating bundles of paperwork – if I were to access the team again.

A Community Psychiatric Nurse (CPN) visited me on the day of discharge. She had visited once before and unlike with the rest of the team I’d found myself feeling wary of her. I pushed myself to plough on. I calmly explained, although not without cost, how I was feeling and the difficulties I was experiencing then. I revealed great detail about the horrible depths of my eating disorder, she is still the only person to whom I’ve revealed those details. She seemed quite nice about it, promised much action to get further support in place and said that my discharge was now on hold. She told me she’d call me the following morning with updates. It was early evening the next day before I heard anything when I received a curt call from the team secretary telling me that two team members were on their way to see me. They arrived moments later. I knew as soon as I opened the door to them that something was very wrong. There were no pleasantries and the pair, the same CPN together with a male support worker I’d seen a few times, were openly hostile. The support worker was openly aggressive. I was utterly bewildered. It transpired that they didn’t believe what I had told the CPN the previous day. They called me a fraud and implied that I was a liar and the support worker told lies about previous statements that he had made to me, about something the team psychiatrist had said to me about a referral to the eating disorders service, and about further support. I was appalled and visibly very distressed, almost unheard of for a woman with a compulsive ‘brave front’ who finds crying difficult, something that they knew.

I need to see my GP as soon as possible for a number of reasons, not least because my physical health has very much deteriorated because of the other issues I’ve been facing. The experience with the crisis team left me terrified that GPs, none of which now really know me, would also disbelieve and dismiss me. I became terrified at the thought of further mistreatment when I was already on my knees and fighting for my life. I know that those of my ‘mental health friends’ who’ve had similar experiences will relate to that last sentence. I’m never entirely comfortable saying that I’m ‘fighting for my life’. That’s not because I don’t believe the statement to be true but I know that while society accepts cancer, as an example, as a life threatening illness, very many are unwilling to accept that mental illness is often life threatening. Many still see suicide as a choice. I am pretty ‘gung-ho’ but no matter what I could not push through this fear. I didn’t give up and it’s taken a lot of work, various actions, to get to this point. Of course, had I not been handed hope this weekend I couldn’t have achieved this today regardless.

That whole experience with the IHTT was somehow surreal, in that I could not believe that health professionals, particularly ones working with people at risk, could behave so unprofessionally and without regard to their duty of care. This is the first time I’ve written about this experience, it was six weeks after it happened before I could speak about it. It’s only now that I am beginning to be able to discuss what happened in any detail. I won’t discuss here how I felt in reaction to it, except to say that I felt dirty among other things and I hadn’t felt that way since being abused as a young person. I told only my ex-husband who I rang after asking the IHTT workers to leave. I was very polite but firm, they were doing a lot of damage and were clearly unable to either recognise that or care about it. I was distraught and I knew I needed to do that to protect myself.

I rang my ex in utter despair, not knowing where else to turn, speaking to him helped a little, and at least I began to manage to step back from immediate thoughts of suicide and start to continue on.

When my call to the GP surgery was answered this morning all appointments with my GP today had been booked. The next bookable appointment was on Monday 26th. I also had the option to phone again tomorrow at 8am and try for an on the day appointment. Until two days ago, I hadn’t been able to leave my flat for four months due to a combination of PTSD and Complex Trauma symptoms and issues including pain and fatigue affecting my mobility. Ideally, at this time, I need someone to accompany me to the surgery and back home again to ensure I’m safe from falls and such. This is not impossible to arrange but is proving very difficult. A friend has generously agreed to help but, through no fault on her part, has limited availability.

With notes to read otherwise my nerves would have made me incoherent, I rang the surgery again in ‘speaking time’ later this morning – a daily slot when patients can call in and speak to their own GP, if available, or to the duty doctor of the day. Mercifully, I was able to be put straight through to my GP. He received a letter in early May expressing acute concern about my mental health from my newly allocated social worker. He wrote me a letter a week later telling me to make an appointment with him if I needed one. I started by saying that the social worker had been right to be concerned and that my health has been generally poor since February. I explained that I’ve had difficulty in getting to see him for a number of reasons, most recently because of the scarcity of appointments (I did say I wasn’t complaining about that) and because of the issue of needing to be accompanied. I asked politely, clearly and directly if it would be possible to make time for a 10 minute catch up over the phone. He didn’t answer, or offer a home visit as I know Great GP would have done, but said that he’d book me an appointment on Thursday at 10, that I could tell my friend and that he’d hope to see me then, that was it.

My friend is not able to accompany me on Thursday as she will be at a conference out of the area. I’ve decided that it would be a good idea to ask my advocacy worker to sit in on the appointment with me. She is not able to do the escorting to and from bit, but I’m wondering if I can get myself to the surgery in a taxi, which I was planning to do anyway as a one off, whether if I was to become too unwell afterwards she’d be allowed to make an exception and see me home. If not, my friend has offered to ask a friend of hers to accompany me if possible. So, a couple of options there, we’ll see what transpires.

With regards to the rest of the day, I need to do a laundry load – I  have an underwear crisis, I need to run the dishwasher, place an online grocery order and compose a couple of vital emails including a reply to my social worker’s message of Friday. I would like to take some time to reacquaint myself with my art journal. ‘Spoons’, as ever, will dictate for the most part. I know, especially given my disrupted night, that I’ve already scaled mountains today and I’m very pleased about that.

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Thanks for reading. See you anon.

Heart x

N.B. I have taken steps to begin the process of making a complaint about the actions of the IHTT. That’s what lead me to an advocacy worker.

I am awake and content to be so. 

I’ve woken this morning, for the first time in many days, without the feeling that I can’t bear to be awake.

This morning I did not so desperately clamour to again escape into sleep that I forced myself away from wakefulness and into a half sleep, punctuated by nightmares of the darkest variety. 

This is progress.

***** N.B. Hello again dear readers. It’s been a while since I posted, and there is quite a story a tell. It would be too large a task to try to bring you up to date all at once, and it would certainly overwhelm me, and perhaps you too. With that in mind, I’m going to do as a middle-aged American woman, with a passion for fly-fishing and a plethora of strategies for overcoming the overwhelming, once told me … don’t try to catch up, just jump in where you are. I trust that in doing  this the fuller story will, in time, unfold. This is likely to be one of many ‘bite-sized dispatches’. In the meantime, I’ll just say that it feels good to be back and that I hope you’ll encourage me in my quest to post regularly. *****

Trauma Therapy or Day 2 of The Rest of My Life.

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I have a trauma counselling session at 1 o’clock this afternoon.

This is the first time that trauma-specific counselling has been available to me and it will be my first session after an initial assessment session with my counsellor two weeks ago.

Between 2002 and 2011, I had some four years of general psychotherapy/counselling. This took the form of a one year period with the same therapist, a two year period with another therapist and otherwise dribs and drabs of therapy with variously a CBT therapist, a psychologist, a Victim Support worker and a trainee therapist.

This trauma counselling is provided weekly via 50 minute telephone sessions by a voluntary sector organisation. Twelve sessions are offered, with the option to extend that period for up to 12 months if both parties are in agreement. After referring myself to the service, I waited a little over two months to be allocated a counsellor. I have been waiting since February of this year to be assessed for trauma therapy on the NHS, despite my then GP denoting my need URGENT.

 

EULOGY: A POEM

TW: This post features themes of abuse, trauma and suicide. It may make difficult reading, however it is, ultimately, hopeful. 

Support is vital in all our lives. Appropriate support is paramount to survivors of abuse and trauma, and people living with mental illness.

I’m both, and know many others in the same boat. It is notoriously difficult to obtain – for reasons including, but not limited to, funding cuts; policy; limited awareness; and the constraints of symptoms and circumstances.

Last year I gained appropriate professional support for the first time, the resulting impact was life-changing.

Finally, I could do more than survive, more than fight, more than exist, more than toil, more than tolerate, more even than live. I could begin to thrive. I could, for the very first time be entirely myself … more than four decades into my life. I am rarely lost for words but there are none to describe how that felt. There was intense, profound, unadulterated JOY, but so much more.

In early April my trusted GP, the first to have seen and heard ME, relocated to a new city. A week later my housing support officer was withdrawn overnight, with only 24 hours notice.

At the beginning of that month I’d come to understand that now that I finally knew a sense of safety and some peace of mind, my mind was beginning to unlock trauma, pain, grief, anger, all yet to be processed. Also, thriving at last, I came to realise the extent of what had been stolen from and kept from me, for so very many years, and the impact of opportunities, such as motherhood, forever lost.

I must grieve. These are necessary steps on the road to healing. It was a process I welcomed and was at ease with, as far as one can be with these things. It began happening at a gentle pace, but a deluge was be triggered. On top of the loss of  support and the ‘unlocking process’, unexpected and significant stressful incidences occurred – not least the sudden re-emergence of a figure from my childhood, who then turned out to be a wolf in sheep’s clothing. The combined impact was devastating.

My housing support had been approaching its natural end, with my housing crisis over, and related financial issues close to resolution. However, I was not in a position where it was safe for me to be left without any support. A phased ending to housing support and a supported transition to new support were required, to safeguard my well being and my safety. Instead, the ending of my housing support was extremely poorly handled and these measures, although agreed, were not implemented. A number of other vital assurances were broken and my trust betrayed.

Betrayal sounds dramatic. To have the trust of a survivor of abuse is a privilege, to willingly compromise it is to betray it and the person who gave it. For me, it triggered latent symptoms of Post Traumatic Stress Disorder (PTSD) and resulted in an incidence of self harm. Such harm was never common for me, and had not occurred in many years. The betrayal of trust has also had a negative impact on my friendships.

I have now been without any professional support for more than nine weeks. I am presently unable to access any because I am terrified to trust again. I know I must, somehow. I’m working on it. I’m working very hard.

A survivor of abuse is vulnerable in the extreme. Like abusers, there are many who will exploit that vulnerability to some extent, sometimes maliciously, often not, but instead as a result of carelessness. It’s likely, as in my case, that an abuser(s) will not be the last to betray a survivor’s trust. After damaging experiences of professional ‘support’, it took huge nerve and a gargantuan leap of faith to try again last year, ten years on from my last encounters with support professionals.

I was experiencing my worst depressive episode for a decade and increasingly suicidal. I don’t lack courage and I’m commonly quite gung ho. Regardless, I had to reach rock bottom before I dared allow a support worker into my life. I was blown away by the quality of the service, and it was good. It’s perhaps worth noting that I have a tendency to focus too much on the positive and be too grateful, so may not fully appreciate negatives.

As the impact of appropriate support was profound, so was that of the betrayal.

Eulogy is inspired by these recent events and my experience of them. It’s told from the perspective of a support professional. It describes how it was for me – only the death (by suicide) and the worker’s thoughts are imagined. It could have been my reality in its entirety.

I live to fight on …

I welcome comments and discussion. I’d love to hear from health professionals and professionals working in the field of support and encountering clients who are survivors of abuse and/or experiencing mental illness. This post is NOT intended to berate or malign those professionals in any way. I write it seeking only to be seen and heard.

EULOGY

To the funeral he came
Head bowed
Inside it a bell tolled

He felt guilt, yet he bore none
He cared
She knew and was grateful

Her suffering appalled him
He ached
Now she was at peace they said

She found peace with me, he thought
She thrived
She was happy then and safe …

Long buried pains sought freedom
Safe now
Let them come and be processed

And so the key was turned
Box unlocked
Fear not, now the time is right

She could not cry, could not feel
Pain unleashed
She longed to move through it

Freedom she knew lay that way
True healing
The hose not blocked, free-flowing

It came, drip by drip at first
She welcomed
Meaning was not always clear

Not all dots could be joined
Confusion hampered
Slowly her vision cleared

Sudden withdrawal, word broken
Triggers impacted
She braced and held tight

She alone would be enough
She doubted
Her tenuous grip weakened

Without safety net, she hung
Dam breached
Tears flowed, fears grew, hope died

Reinstate support, she said
He ignored
Amid increasing swell she clung on

Trusted support is vital
She pleaded
I’m at risk, no longer safe

You must understand they said
Protocol matters
We can no longer support you

He didn’t reassure her
Stayed silent
Had he cared? Did he still?

She longed to know safety
She tried
They misunderstood her now

They judged, her trust collapsed
Not seen
She couldn’t make herself heard

When it came she was ready
She accepted
The torrent swept her away

No lifeboat or rescue came
She drowned
Few knew it to be a loss

He came to show respect once more
She mattered
He remembered her light

For once he couldn’t cry
He swallowed
He endured, just as she had

He hoped she had known he
Liked her
Might even have been her friend

He wished she could have lived
Known it
Believed, enjoyed and thrived

She knew that, he told himself
Had to
Could not dwell, he must go on

He left, head bowed once more
Something stirred
Inside she smiled, he cried

Copyright ‘heartsetonliving’ May 2016

 

 

 

 

 

 

 

 

Asking for help in a crisis … or not!

I spent the majority of 2015 ‘in crisis’. Between May and December I experienced my most severe depressive episode in a decade. It took me right off my feet, for the most part left me entirely incapacitated, and ultimately at risk of dying. CRISISI only began to recover in the days leading up to Christmas. January saw steady improvement in my mood. I was thrilled to find myself alive, having been convinced that I wouldn’t see Christmas because I had to die. I had hope again and, for the first time in my life, reliable, consistent support – which was to prove life-changing and to allow the final pieces of my life and self recovery puzzle to begin to fall into place.

February was rather more of a roller coaster of mood. I panicked as I first felt my mood decline, terrified of the depression taking hold and fearing I would be trapped in it again for months, or even years as I once had been. Depression can be paralysing.

Late last year, on a day when I was able to harness some capacity, I arranged to visit the local crisis centre – a voluntary sector project – to obtain support to build a crisis plan. It was a helpful appointment – my plan involved strengthening my fledgling support network and reaching out to speak to a worker at the crisis centre. The latter can be contacted by text, email or call … 24/7. A follow up appointment may then also be made for the client to visit the centre over the course of the next two days or a follow up call may be made to the client the next day, if more support is needed. It’s a good service. There is only limited provision of a similar type throughout the UK, certainly nowhere near enough to meet demand. Commonly, someone experiencing a mental health crisis, certainly outside of ‘office hours’, is likely to find attending A&E, where resources are stretched and often not geared to mental health, is their only option.

I feel enormously grateful that I now have access to appropriate crisis support. I experienced a four year period of serious mental illness some years ago. There was no specialist crisis support where I lived at that time, only an out of hours GP service that was stretched and, I’m afraid, in no way sympathetic to mental health difficulties. Telephone helplines, such as those offered by the Samaritans, SANE, Breathing Space (Scotland) and Supportline, although helpful, were no substitute for the services that are now available to me in a new area. I believe everyone experiencing mental health crisis has a right to the best, free care – 24/7. We are some way from making that a reality.

So, what is a mental health crisis? If you’ve had one you’ll certainly know about it; they are far from fun. Like those who experience them, they are varied and individual. A crisis might involve psychosis. For the uninitiated, that’s not where one wields an axe and becomes a killer as media depictions might suggest, but rather where a person’s perception of reality becomes mildly, moderately or severely distorted. Read more here. I thank my lucky stars that I haven’t had to experience it and have much respect for those who do. They’re not ‘loony’, ‘psycho’ or ‘sick’, but experiencing the symptoms of illness. They are as deserving of respect and care as anyone experiencing serious illness. A crisis might involve suicidal feelings, ideation and plans. Equally a crisis might involve loneliness, despair, fear or anxiety, impeding a person’s ability to cope or function.

For me, crisis is feeling suicidal, whether those feelings progress to planning to end my life or not, I don’t want to feel suicidal. As far as humanly possible, I want to avoid slipping that far.

Crisis prevention care is as vital as in-crisis care.

The increasingly stretched NHS is, in mental health terms, generally reactive rather than preventative, as limited funds mean limited resources and so limited capacity. In-crisis care is often woefully inadequate, crisis prevention nigh on non-existent. I was only able to access the support I needed when I was deeply in crisis, even after months of crying out to my GP for help with my rapidly worsening depression and suicidal ideation. The attitude was very much one of not to worry, you’ll be fine. When I described finding myself assessing elements of my home as means to end my life, my GP said that was OK, so long as I didn’t act on those thoughts.

No support was put in place to ensure that I didn’t act on them or to help manage and indeed, reduce those thoughts. Only when a friend, sensing that a suicide attempt may well be imminent, telephoned my GP surgery insisting they take action, did appropriate mental health support begin to materialise. My friend (at the time working away from home and 500 miles from the city where we both live) was correct in her assumption and may well have saved my life by at first listening, by continuing to listen until she was able to understand, and, once she did, by taking prompt and appropriate action.

Aside from a lack of appropriate sources of support, the symptoms of mental illness may themselves impede access to support. In recent months, despite having confidence in my local crisis centre (at least my ‘logical brain’ does) and having received much encouragement to seek support from it and other sources, such as my GP and my housing support officer, I have been unable to do so while in crisis or once I begin the slide towards crisis. This is because my depression rather has its own mind and it’s not supportive of my well-being, darn thing that it is! Depression makes me believe that I’m a burden and that no one can or will help me. That’s not what you need to be thinking when you need to reach out for support to manage your illness. You see my dilemma. I don’t feel that way unless I’m in the grip of depressive illness. That at least allows me to continue to devise and revise techniques to circumvent the obstacles to support.

I have made progress.

In February, with encouragement from my housing support officer, I was able to contact the crisis centre as my mood began to rise after a frightening few days of persistent low mood – although not so low as to ignite suicidal ideation. The contact helped strengthen my capacity to recover and continue to move forward. I was able to arrange to visit the centre two days later, in order to discuss my difficulty in reaching out as a mood slide or other crisis trigger occurs. This proved to be enormously helpful. I found my own answers, but having the time and space to discuss my feelings and thoughts around the problem with a crisis worker, is what enabled me to do so.

I realised that I had not been able to engage with either my crisis plan or my crisis/comfort box, despite working so hard to establish them to support me. In conversation with the crisis centre worker, I realised that I had been treating both plan and box as pariahs.

They reminded me of being in severe crisis – a terrible place to which I never again wanted to return – and so I shunned them.

I resolved to rename my crisis plan a rather more cosy support plan and to drop the word crisis from the comfort box. I also made a new, larger box and reworked the contents – a few of which are shown below. It includes, but is not limited to, the following.

  • Items for relaxation – such as a stress toy, herbal tea bags, a relaxation audio, a book and postcards to colour.
  • Photo frames to fill with images of the few who stood by me last year and remind me of the hope and support they offer me.
  • A soapstone heart and fluffy bunny – both tactile – to aid  grounding techniques.
  • Assorted toys and other items from my free and brilliant  Little Box of Distractions to occupy and distract a stressed mind are also in there.

Someofthecontentsofmycomfort box

For the first time I feel confident about accessing appropriate support when I need it – in the form of contacting a supportive friend, the crisis centre or a specialist helpline, whichever is most appropriate in the circumstances. I am somewhat less confident about accessing crisis prevention or in-crisis support from the NHS because of it’s failure to support me in the past and because of the limitations I know have been forced upon it.

Last week a mood slide was triggered by the unexpected discovery of a psychiatrist’s report from more than a decade ago. It details my poor mental state in the immediate aftermath of my disclosure of the physical and psychological abuse I’d experienced in childhood and beyond. I had some horrendous experiences within the NHS in those days, the worst when I was verbally abused by a GP, who went on to admit his wrongdoing but which was subsequently covered up and I was hounded from the practice. A mental health charity backed me but said that without family, a supportive partner or friends to stand and fight with me, I had zero chance of redress.

I still fear being that vulnerable again and know I have still work to do to recover from it. My current GP who, since my friend acted, has improved her support and so has been slowly gaining my trust – the first to do so since that event 11 years ago – is leaving the practice next month. Starting anew with another GP will challenge me, but must be done.

Faced with this triggered mood slide and associated flashbacks and anxieties, I did not panic and so trigger a further slide (well, OK, I did a teensy bit). I calmly and mindfully worked to ground myself, helping to stabilise me, and reached out to friends, Twitter friends and the crisis centre to obtain the support I needed to begin to recover my mood and confidence.

HappyThoughtsJar

How I felt when I achieved this (delighted) is described on a sticky note held within the jar pictured above. It was made for me last month by that super friend. Her intention is that the happy thoughts collected within it can also help to comfort me at more difficult times.

Feeling normal, embracing normal …

I doubt I’m alone among survivors of abuse and people who’ve experienced mental illness in having wondered whether I’d ever feel normal again.

I think the word normal is actually of limited relevance when considering ourselves and each other. After all, what is normal? Here’s one definition:

Normal (adjective) conforming to a standard; usual, typical, or expected.

We do tend to prefer normal, particularly when it comes to people. Dealing with those whose behaviour is usual, typical or as we expect – that’s our comfort zone. The unusual, the atypical, the unexpected, can be unwelcome, even alarming.

AreYouNormalSpeechBubble

Many of us do celebrate difference and embrace diversity. At the same time, prejudice and intolerance not only exist but are rife in some situations, invariably born out of a mixture of ignorance and fear. Ignorance here not rudeness, but a lack of knowledge. The fear born out of a lack of understanding leading to a unwillingness to tolerate or accept.

Having a mental illness or other disability can see you popped straight into the box marked ‘not normal’.

TheNotNormalBox

Some of us really love putting others into boxes and have trouble thinking ‘outside the box’. If you yourself think that way, it can get a bit lonely!

The ability to pass as ‘normal’ can help you to be accepted or at least tolerated. I’m quite good at pulling off the appearance of a functioning human while actually finding life quite difficult. I’d never have guessed you were .. a depressive/anxious/sometimes struggle with social confidence/have been abused – is a familiar refrain. I’ve chosen not to wear a label around my neck declaring my impairments for all to see. I tend not to define myself in terms of them. I am not ‘a depressive’; I do have a history of living with the illness Depression. I do not want to live in the box marked depression, or any other box for that matter. I have a toe, a finger, a memory, a passion, in very many diverse boxes.

I’m tidy and organised. I love theatre, books, coffee shops and tea rooms, charity shops and second hand sales. I’m positive and enthusiastic. I was abused in childhood and beyond and the effects of that on me and my life have been profound and far-reaching. I lost a parent to suicide and I’ve survived an attempt to take my own life. I live with a number of health conditions – they are mostly invisible but have a not inconsiderable effect on my life. I don’t have children. I don’t have contact with my family. I have some issues with eating, I continue to work to overcome them. I like scarves and earrings. I love recycling and reusing. I adore words and writing! I like public speaking. I love arts and crafts. I’m driven and ambitious. I’m compassionate and sensitive. I can be very chatty.

All that, and more, is my normal. It may not be yours, but it is mine, and proudly so.

One day recently, I found myself feeling of normal mood. That’s what prompted me to write this post. You see I haven’t felt terribly happy about being in a ‘normal mood’.

I’d like to feel happy, hopeful and free to such an extent that I catch myself smiling often, even laughing, at the sheer joy of it. I felt like that for more than three days in a row last week! This was a new feeling for me. I sensed that, in the midst of my fifth decade, I am at last learning what is to feel free, even safe. I realised that I am finally beginning to thrive.

I wanted to always feel so bright and such delight, but my mood began to slide after an unexpected confrontation with a terribly traumatic period of my life. It came in the form of a psychiatrist’s report on my mental state in the period immediately following my disclosure of childhood abuse, found while organising paperwork.

I encouraged myself not to panic about the decline in mood and confidence I was experiencing; I’ve learned that doesn’t help and that, in fact, it’s likely to make things worse. I calmly and mindfully took care of myself and took steps to reach out for some additional support… slowly my mood and confidence levels rose. They didn’t again reach the heights, but settled somewhere around OK, I suppose. I was not thrilled about that.

After years of work to recover myself and my life, learning to love and accept myself and processing the trauma I experienced, I can now celebrate my own brand of normal – with all of the quirks and imperfections that entails. I can learn to live with normal, rather more mundane, mood states. I may even learn to celebrate those too. Sheer joy and jubilation is wonderful to experience, but who gets to feel like that all the time? It seems impossible that I could ever tire of such joy and freedom, having finally found it, but if I had it for always perhaps I would.

Embracing the mundane mood may seem dull but it is normal. Everyone has ups and downs in life and of mood. It isn’t normal to be so depressed that you feel you have to die, as I felt when so very ill for many months last year. Today I’m not depressed, neither I am a fountain of joy, but I am OK, and I’m coming to realise that that’s actually a pretty good state of being.

Sound Asleep Secrets

Latest newswire: Mangled earphones are a thing of the past!

I heard mention of a ‘sound pillow’ on last week’s episode of the BBC2 TV series Trust Me I’m a Doctor. Instead of looking puzzled, as is often the way, I thought to myself … ooh, I’ve got one of those! I recovered it from the bottom of my wardrobe where I’d put it for safe keeping until I had time to try it out. I’d received it as a gift more than a year ago, but at the time my head was too full and life too frantic for me to have given it more than a cursory glance. Within five minutes yesterday I had it up, running and tested. I hadn’t realised it would be so easy.

If you follow me on Twitter (@heartsetonlivin) you might have seen me bemoaning the fact that I’d mangled not one but two pairs of earphones by listening to audio books in bed. I find it so soothing that I’m lulled to sleep. I then crush an earphone by accidentally sleeping on it! In a matter of weeks I’ve managed to ruin one set in its entirety and had been limping on in mono with Exhibit A …

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Exhibit A: One mangled earphone

My woes prompted sympathy … and some good-natured teasing … from Twitter pals.

LongJohnHill mangled earphones graphic

So, what is a sound pillow and would I buy one?
It’s a pillow with a speaker inside it, and a cable on the side to be plugged into a smartphone, tablet or mp3 player. I have this one. I think it was purchased using an Internet deal and so may be available elsewhere for less than the advertised price.

Set up is a doddle, just plug and go. I use mine with my Samsung Galaxy Tab 2 tablet, because that’s what I happen to have. I have audio books and my favourite sleep meditation loaded on to it, and I’m also able to listen to the radio or music via wifi.

Sleep can be a challenge if you’re a #spoonie. Pain, anxiety, depression can all take their toll, and that’s just for starters. My recent episode of serious illness brought with it catastrophic sleep disruption. As my mood began to recover, I decided to revisit some favourite audio books, in the hope they’d help me to relax and also distract my mind from anxious rumination.

It works*, I’m pleased to say, and so does the sound pillow!  I used it last night and happily fell asleep while listening. I found I had to play the tracks more loudly than I would if using earphones, but that’s no hardship. I’m lucky enough to now have a king-size bed to myself. Largely sleeping on one side, I tuck the tablet under the pillow on the other.

Using the sound pillow felt a little odd at first, but only because I’d become used to ‘in ear sound’ that, for the most part, moved with me when I moved. I soon adjusted, and found the best pillow spots for optimum listening. Once settled, I didn’t have to faff about with earphones or worry that my remaining one would be crushed. I have both a padded pillow protector and a normal pillowcase over my sound pillow. I didn’t find the sound to be obstructed in any way. I did have to adjust to being able to hear some ambient noise, previously blocked out by earphones, but this wasn’t a great problem.

If I had the cash and hadn’t received one as a gift, I think I would be tempted to buy a sound pillow. I am a new user, so I can’t yet report on its longevity potential.

*If I’m in need of additional distraction, I will play ‘Snake’ (remember that?!) on my mobile phone. I had to abandon my smart phone last year because I was skint and I’m using a basic old phone on loan from my friend. Anxiety is no match for Harry Potter audio books, read rather marvellously by Stephen Fry, combined with a few rounds of ‘fruit gobbling Snake game play’, I can tell you!

Alas, I haven’t yet found a way to combat sudden, unplanned waking, due to medication side effects, pain, nightmares or other irritation, but I live in hope … 🙂 .

N.B I have NOT been paid for this review.
This not a sponsored blog, nor do I want it to be. There are probably similar products on the market. I have chosen to review this product because I was given one as a gift by a friend, and because I think it may appeal to readers of this blog.

 

 

The third floor …

The third floor is out of reach

Beyond a wall I cannot breach

Only if escorted may I proceed

Life beyond my front door to lead

 

Anxiety has imposed these limits

To beat it will take more than minutes

For now I must accept my life curtailed

and that in doing so I have not failed

 

I’ve watched scaffolding contractors outside the windows of my second floor flat, working today to reach the floor above, and beyond. I realise that despite the safety harnesses, teamwork and effort involved to scale this extensive Victorian building, they are able to reach the third floor far more easily than I can at this time.

As the summer of 2015 arrived and illness took hold of me I found it increasingly difficult to get out and about. At first I chose to retreat as a form of self protection. Severe depression led to self neglect which led to feelings of shame and a fear of exposing myself. I didn’t feel like me and didn’t feel able to face much of the world, once more so vulnerable and reduced. Broke and with my home at risk, I struggled too to confront reminders of the life I’d been so assiduously working to build. Later, anxiety, rather than I, chose to restrict my boundaries still further.

My world shrank, as my illness grew. I stopped travelling the mile or so into the city centre. I stopped making the 15 minute walk to my GP’s surgery. I went no further than the pharmacy at the end of the street where I live. I only got as far as the bins right outside this building, to put out my rubbish. I stopped being able to go outside. I found myself trapped behind my own front door.

I didn’t go out at all for five weeks. I’ve ventured out three times in the last three, each time escorted by my friend, but no further than a shop in the area immediately surrounding my flat. I’ve put goals in place to stretch my boundaries and to make at least one solo journey to the pharmacy by the end of this month. Next month I’ll push the boundaries further still. I can’t Tigger my way of out of this, at least not to the extent of pushing myself too hard too fast, as I am oft’ liable to do. Slow and steady wins the race. Pacing? Yeah, I think I’ve heard that word … a few gazillion times. Crash and burn? Not this time!

Something over a decade ago I experienced life living with Generalised Anxiety Disorder (G.A.D.), Social Anxiety and Agoraphobia, alongside my severe depression and physical health problems. Life was such fun back then 😉 .

I have discussed the question of which is worse, depression or anxiety, with others who have experienced these illnesses. It’s like asking how long is a piece of string. They are both difficult to endure. However, some have told me they feel, as I do, that if they were forced to choose to live with one; they would choose depression. My reasoning for this is that with depression at its worse I feel I have to die. With anxiety at its worse I feel that I am dying, horribly and perpetually.

I highly commend No Panic for its support in the face of anxiety. The charity has expanded in the years since I used its services and appears to have even more to offer. Clinical anxiety is much more than worry or concern. It is a pervasive, debilitating and life-diminishing condition.

After discovering water dripping through the ceiling in my bathroom this week. I knew that I had to visit my neighbours living in the flat directly above, in order to try to discover the source of the problem. I don’t actually know who lives there and, as the configuration of that floor is slightly different to this, I am uncertain even which door belongs to which flat. Anxiety doesn’t appreciate uncertainty or unfamiliarity!

I had a very productive day yesterday, in spite of limited #spoons after little sleep. I tackled some stressful tasks with aplomb, but I could not open my front door, let alone venture upstairs. I tried repeatedly, deploying various strategies, but my feet might as well have been set in concrete. Shame and a sense of failure crept over me and, try as I might, I could not shake it. I tried to compose a blog post but found I couldn’t write, so consuming was the anxiety. I went to bed at 9, feeling gloomy and weary. I slept fitfully.

Today, I have once more been productive. I succeeded in opening the door to the postman and a further delivery. I haven’t tried to venture out.

I consider myself lucky that this time around I am not experiencing panic attacks frequent or otherwise. This time I think of my anxiety as ‘the wall’ – a sturdy but temporary fixture – that is blocking access to certain aspects of life. I learned a great deal as I sought to conquer the anxieties of old. I’ll use that knowledge to take down this wall, brick by brick.

That anxiety has sneaked back into my life is a bind. It is no more than that. I will get past it as I did before.

Coming next: Poor Self Care 

 

 

 

 

 

Medication … miracle?!

TW: This post contains discussion of suicidal intent and a suicide attempt.

So, after stepping back from the brink, how are things now?

Well, by goodness, there is a LOT going on in my life, a great deal to manage and to process but I have some support and may yet have more to come. For the first time in my life that support is appropriate and reliable and it’s paying dividends. There remains a long and challenging road ahead, more of that in later posts, but the outlook is positive.

I have a long history of depression, I’ve lived with episodes of it for more than 25 years, since I was around 18 years old. Mine is always reactive and triggered by major stress. Alas, when you are survivor of abuse and trauma, life does rather tend to have more than its fair share of that!

I wrote about the attempt I made many years ago to end my life by suicide, here. It happened in the years immediately following my disclosure, to a GP and subsequently a counsellor, of my experiences of trauma, physical and psychological abuse within my family over many years. I was not well supported then and was lucky to survive the attempt. I was discharged from hospital with no follow up support. I tried to be proactive and so sought it out but soon realised there was nothing doing. I feel great dismay when I read accounts by others who are still having this experience in the 2010s.

Finding myself at risk of homelessness was at the root of the prolonged episode of depression in the year from December 2014, but there were other contributing factors. I had been pushing myself much too hard, for one. The prospect of losing the roof over one’s head would be stressful for anyone. As a result of my experiences of abuse, loss has loomed large in my life. I lost all my family, many friends and with those losses connections to my history. I’ve lost some memory. I’ve lost some hair (!) as a result of alopecia. I’ve lost my beloved career. I’ve lost my marriage and I’ve lost the chance to have a family of my own. I’ve lost health and fitness and I’ve lost a great amount of time to illness and recovery. A few things can be recovered, others are gone for ever, others can be replaced with a great deal of flexibility and endeavour. Throughout it all I have hung on to a home – there have been many of varying types scattered around the UK – this one is mine and mine alone and with that has come a fledging sense of safety. The threat of its loss became unbearable.

Depression threatened me again and as its impact intensified, I was disturbed to find that it was once again very difficult to access support, despite effort and honesty on my part. [I’d like to discuss this issue in more detail but will do so in a later post focusing on issues around suicide prevention.]

Medication was mentioned but I was very reluctant to go down that road. Having previously been prescribed various anti-depressant and anti-anxiety medications over a period of four years. I never felt they had any benefit or served to ease my psychiatric symptoms in any way. The doses were regularly increased to no effect, in my view, except to ensure that I had a veritable pharmacy on hand at home. It was while on the highest doses that I made the attempt on my life all those years ago, by swallowing a massive overdose of more than 100 tablets.

I came off all medication in the year following my suicide attempt but continued to pursue counselling and other forms of psychological support that I found in the voluntary sector  and which were hugely beneficial to me.

When my friend made the call to my GP that brought me back from the brink, a few short weeks ago. medication remained the only treatment option on the table. I was told I would not be allowed to access further psychological support – such as specialised trauma therapy – on the NHS, without having first tried medication. My GP, whom I have known for 18 months, remained convinced that it could help me. Knowing that something had to change if I was to continue to stay alive and after lengthy discussion with my GP during an hour long home visit, I made the decision to try medication again.

I didn’t want to be able to accumulate medication at home, knowing myself to be at risk of suicide, so we agreed that I would receive my medication weekly and that since I am having difficulty getting out and about it would be delivered to my home each week.

After just two weeks on a relatively lose dose of anti-depressant medication, I realised that my mood had been steadily improving during the preceding seven days. Side effects were unpleasant at first but manageable with the help of my GP and they have subsided. We increased the dose after those two weeks and I’m due a final increase next week. My mood has remained stable and this is despite receiving some devastating news four days prior to Christmas and, additionally, having an encounter that forced me to relive episodes of terrifying violence in my childhood.

When considering whether to try medication again it didn’t occur to me that something is different this time around. Although I’ve been experiencing the most severe depression again, I have come a very long way in the intervening years and I’m in a very different ‘place’. It certainly seems as though the medication is doing its job this time – ironically, I am taking Sertraline which is the very first of the medications I was prescribed all those years ago. (That news very nearly had me running for the hills, I can tell you!) Perhaps the fact that I have moved on so very much, has made the difference.

A Twitter pal has been expressly wishing me miracles in recent months and continues to do so. It looks like that wishing worked 🙂 …. I needed a miracle and I think I got one … thanks LongJohn 😉 !