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

 

A new group … or Day 5 of The Rest of My Life

Today has been particularly challenging. I’ve been reeling from big news that I received yesterday. It’s triggered the pain of loss and exacerbated intense feelings of loneliness.

I woke very early this morning – sometime around six o’clock. Realising that I wasn’t about to get back to sleep easily, I set about being productive and wrote a blog post. Still the difficult feelings persisted although I continued to be productive but carefully pace myself, and also took time to relax. Around lunchtime, feeling worse, I took myself off to bed, in the hope that a nap might help. Sometimes it’s the only option to try to halt a complete mood crash and descent into crisis, when no support is available. I slept peaceable enough and woke around 3:30pm, at first slightly disorientated. My mood was still flat.

I knew what I must do and that is be productive again. I set the dishwasher going, refilled my water jug, took some painkillers, tweeted the link to my earlier blog post, brushed and straightened my hair and put on some make up before sitting down at my desk to write this post and send a couple of important emails.

I’m due to go out in a little over an hour. I plan to try out a local craft group. It’s held a short walk from my place, lasts just 90mins and there’s free tea and cake! I am so isolated and the more I can engage, #spoons permitting, the better. I am anxious about going along. My comfort zone is to be on top form in the company of others, which, in my situation, is quite frankly exhausting. The aim this evening is just to get there and try not to put myself under pressure to perform. The aim is to make that effort but not strain myself. After all, this is supposed to be about getting fun and engagement into my life!

Wish me luck!

 

Day 1 of the Rest of My Life 

I have an appointment at the local dental hospital at 9:15 this morning to have a wisdom tooth extracted.

This is cause for great celebration as reclaiming my smile after a lengthy battle with self neglect due to depression and a dental phobia ignited by the childhood abuse that I experienced. This appointment is not without its challenges not least the difficulties of such an early start when you’re a #spoonie and a potentially more challenging recovery for the same reasons, still I plan to celebrate being rid of this smelly, infected, horribly positioned beast at long last! 

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.