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

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

Entering the ogre’s lair …

Don’t get me wrong, I’m not calling my GP an ogre, he’s surely a nice enough chap, but after the events of last year, going to see him again was about as scary as standing before a ravenous ogre with a particular taste for ‘Hearts’ about my size and shape.

The only available appointment was at 10am. Any appointment before 11 always presents additional challenges because my morning routine is lengthy due to the requirements of my Bile Acid Malabsorption and also issues around sedation, pain and mobility that are particularly problematic when I wake. I made it past those, and past anxiety around getting out for the first time in four months – too complex to detail.

‘Debriefing’ afterwards, my advocacy worker, who accompanied me, commented that there was marked difference in my GP’s response to my discussion of my mental health and of my physical health. He said nothing in response to the former. She said his expression could’ve said … well, what do you want me to do about it? By contrast, presented with physical symptoms he leapt into action, examined my abdomen, listened to my chest and took my blood pressure … twice. He ordered tests, including an E.C.G. and prescribed several medications, and appeared thorough.

Discussing a gastric issue, I described my symptoms and said that I’m aware that my weight gain may have caused them or at least be a contributing factor. He agreed, said that I was right and that it would help if I could do something about that. I didn’t pick him up on it, and perhaps I should have done. I did feel disappointed, if not a little angry, given that I have an eating disorder and that I asked for help – clearly and directly – so many times last year and yet I received none. I understand that he cannot ‘magic resources out of thin air’ where services have been reduced or cut, but I really would appreciate an acknowledgement both of much I am trying to help myself, and that I haven’t been offered any help or support. My weight and related issues will be being discussed when we next meet and I hope then to have the confidence to say that.

I’ve blogged and tweeted recently about my ‘flaring’ skin. A first episode occurred around five or six weeks ago when I woke to find my eyes puffy and my skin reddened and itchy. I suspected eczema but noted that the usual emollients gave me a burning sensation. It was annoying and didn’t look great but it wasn’t horrendous and it cleared up after a few days. A couple of weeks later I had another episode but this time the skin around my eyes was more swollen than puffy and I suspected an allergic reaction, but I couldn’t pinpoint what might have caused one. On Wednesday last week I woke again to a red face and swollen skin around my eyes. Like me, my GP suspected eczema or an allergy and he prescribed hydrocortisone cream.

In the hours after my appointment, my face became increasingly red and a little more swollen, by the evening it was burning which felt very unpleasant and was difficult to manage. The following day I awoke and gasped in shock when I looked in the mirror and saw that my whole face was swollen. I could barely open my right eye and the left was also affected. The areas where I’d felt the intense burning sensation – mostly around my mouth and under my eyes – now felt very tight and had become extremely dry. I was able to speak to my GP on the phone later that morning and he opted to additionally prescribe an anti-histamine and a specialist moisturising lotion. All of the new medications were delivered on Friday evening by the delightful ‘Pharmacy Bob’, who was concerned about me, with my bright red, ballooned visage. The swelling slowly reduced over the weekend and the redness decreased somewhat, then my face began to peel, everywhere but for the top half of my forehead and the sides of my face, and continues to do so. I have been liberally applying moisturiser and, thankfully, today when I had to go out to an appointment with one of the practice nurses, it looks better than it did.

I have some concerns about the cause of this skin issue related to my other diagnoses, but I’ll blog about that once I have the results of the tests that the GP has ordered.

I asked my GP if I might return to using my treadmill as I want to do, promising that I would not try to run before I could walk. I am MUCH heavier than I was when I took up running in 2014. I have no idea what I will be able to achieve this time around. Building up to being able to do a brisk walk will at least help me to lose weight, it may be that I will not be able to run until I’ve done so. I wondered if I might be advisable to wait until the tests have been carried out, but the GP said that he’s happy for me to start before that, so long as I’m careful.

 

Heart set on dying?

I want to die. I really want to die. I just want this to end.

Those thoughts have been uppermost after months of waxing and waning. I’ve continued to fight but my ongoing deterioration is undeniable.

I long for someone to tell me to sit down, to say ‘let me do it’, to take the strain if only for a few moments, and for them to bring me a cup of tea and a sandwich. I long for someone to let me curl up under some ‘comforter’ and pour it all out. I LONG to feel connection to someone. I long to be heard. I long for kindness and support. I long not to have to do everything by myself, to be able to stop having to continually fight horrors alone. I long not to feel that on occasion I have to inappropriately ask support of people who should not be giving it, because I am desperate. Like the person you know only to nod hello to at work only to then find yourself suddenly having to ask them to wash your smalls or some other indignity – and no, I haven’t actually done that one. I long to be asked: What do you need? What would help right now? and to feel that the person asking was willing to try, amid their own limitations be they geographical, health or time or otherwise related, to try to work with me to make some progress.

At some point during the night, a friend on hearing of my suicidal despair told me to ‘stay with him’ and that we’d ‘try to find a way through’. Such powerful words when you’ve lost hope and need something to which to CLING. Those are just the words you need from friends at the worst of times. Certainly I was glad to hear them, only I couldn’t take comfort in them.

We have never met. We live many miles apart. We are online friends, although we have come to chat on the phone in recent months. I haven’t had the gut feeling that there is something to fear from the friendship and that it would be dangerous for me to proceed, as I’ve had many times in the last 15 years. I trust my ‘gut’ but have forced myself to ignore it since loss and illness narrowed my world to such an extent that I came to feel that this ‘beggar’ couldn’t afford to be choosy. Every time my gut instinct proved right but not before I’d paid the price for ignoring it. This friend, of last night’s words, and I have some shared experience and this friend undeniably has empathy. Although it’s a relatively new friendship, this person appears to have a good grasp of what I’m about and a reasonable grasp of my complex circumstances. Finally, after the last year, too many damaging encounters and friends who have betrayed my trust have left me unable to trust and connect. I can now only see that this friend, and any others, will come to stop caring.

One thing I know about you is that this isn’t your fault, more that it’s an unholy concoction of circumstances … You’re my friend and I’m very proud to know you. How can this friend – an ordinary bloke, said with no disrespect but a worry that perhaps I am under-estimating – say that where other friends can not? If older friends* – those in whom I can still feel something, could say words like this, the power would be extraordinary and could catapult me into new connections with some confidence. Does anyone understand what I mean? If people who have known me for years, who were once very close to me can’t say/act like that I matter, on top of the betrayals of family, can I ever really matter to anyone else? *They are now so very few, admittedly this is a very small sample.

It seems ‘crazy’ to think that when my abuse was first revealed more than 15 years ago and I became so very ill, I consoled myself with the thought that friends would rally …
I didn’t expect that I would lose so many of them because they couldn’t or wouldn’t understand and so rejected me, or found my situation too uncomfortable and so distanced themselves. I pushed away the stragglers who remained on the periphery, too terrified to confide for fear of more of the same. A few years ago I reconnected with one such friend lost in that way, someone I valued very much and trusted, but ultimately there is now only more distance. This is alienation in the truest sense, my situation and suffering (I hate to apply that word to me; it feels to reek of self pity) too alien to comprehend, and waaaaay too alien to ever want to embrace. I long for that ’embrace’, some connection. I belong nowhere …
It seems crazy because in spite of all that, deep down inside somewhere the desire for friends to rally still lives on.

Picture me, if you will, clinging to a perilously lofty cliff face with no safety lines and ever-crumbling hand and footholds, frequently flailing, slipping and falling, before grasping and clinging on again by the merest margin.

I want to let go. I want nothingness to engulf me.

Count your ‘pegs’, or whatever climbers call those things that they tap into rock, your ‘ harness’ and other ‘safety lines’, for me now, will you, please? Perhaps there’s a spouse or partner, a pet, a home of your own, children, a job, sufficient income, food in your fridge, connections and pleasures, colleagues, friends, wider family, history and memories, a safe place, a trusted professional. Things that amid stress, and even at the worst of times, to which you can cling and feel grounded, tethered, held in place – pinned to that cliff face even though you are terrified, even though your predicament is hellish, you are held in place. I ask this because in all these years I have never yet encountered any other ‘struggler’ without tethers. Plenty who can feel that they are without them, who can struggle to see them, yes, but no one without any in actuality. A GP once told me that those people never make it. I like to defy odds but in the last year I have feared I’ve been stupid in my dogged belief that I could.

Fantasies and fear are my only ‘tethers’. I want to write more on this but I’m flagging. I’ll try to do it in another post, except to say that in the absence of psychosis and with depression only rarely removing my rationale, I fear a suicide attempt failing and landing me in a worse situation. I’m not living, I’m existing, but I’m failing to die.

I live with the knowledge that if I were to go missing there is no one to notice or to raise an alarm, and that if I were to die it could be weeks before I would be found. I don’t dream up these thoughts to dwell or wallow or feel sorry for myself. They are facts I’ve been forced to face in the last couple of years. Realisation slow in the making but helped along by having to beg a near stranger to help me to get to A&E in December and the days that I’ve gone without food since 2015, either through lack of funds or lack of capacity due to illness to prepare something, because there was no one willing to help – for eight days at worst. It’s immensely difficult to lay bare these examples as the circumstances surrounding them are complex and there is much left unsaid. I fear misunderstanding and negative judgement.

I’d never heard those words before last night, not in all those years or the preceding years of abuse and trauma. Not one of the people I loved and cared about ever said those words or any remotely like them. I’ve said those words VERY many times. I’ve actually lost count of the number of times I dealt with someone else’s suicidal crisis between 2011 and 2016 alone. I have quite a record and, given that I’m not a Samaritans volunteer or mental health professional, it’s probably a fairly unusual one. I jump in, a LOT, always hoping to make a positive difference but sometimes for misguided, even unhealthy, reasons, mostly a desperate need to try to prevent others feeling what I feel.

I have had not a single regret that I cut myself off from what remained of my family as it was only, and could only ever be, abusive. Likewise I have never regretted leaving my marriage a little over three years ago. It was dysfunctional, deeply unhealthy for the most part and has been described by others as sometimes being abusive; I find it difficult to claim that. The hugs were wonderful, as sometimes was the kindness and the connection, but the damage it was doing, ultimately to both of us, was too great. I am sad that illness and my circumstances have isolated me. I am angry that chronic under-funding of health and social care has killed many and severely worsened my own health and circumstances leaving me to suffer acutely, unnecessarily, and unable to ‘grab life by the horns’ and thrive. Again, that’s so difficult to say. Ultimately, I’ve been rendered housebound for the past four months – no longer able to leave my flat either psychologically or physically due to Post Traumatic Stress Disorder and issues of pain, fatigue and mobility.

Inside my mind I am as proactive as ever, as hard working, as determined, as enthusiastic, as ‘can do’, as ‘grab life by the horns’ but now mostly only when I unconsciously dissociate from reality. Reality that includes a sick body; a mind tormented by loss, grief , loneliness and desperate desire to thrive; hunger; and isolation so complete that I don’t know when I’ll next see or speak to another human, and I’m struggling to remember when I last saw someone. I am permanently online, often now too lost to connect to anyone but still ‘seeing’ the world, if only virtually, remains a sort of tether but one without comfort. Without it these past few months, I think I would already be dead. It’s kept me from completely losing my mind.

I hoped that writing this would provide some sort of catharsis. I have written it to try to let it out of my head. I have written it while trying not to try to hard, trying not to think of the audience or worry who might judge, feel offended or otherwise react negatively. Part of me doesn’t want to receive comments on this post but another part cannot allow me to enter my WordPress ‘dashboard’ and turn off that function on this post. I fear judgement and disdain. I fear troubling anyone. Another part wants people who know me to read this post, and wants to find ways to encourage that. I know I welcome questions and would welcome the attempts of others, especially my friends, to learn and understand. I am thoughtful and reflective and my depth of insight is frequently noted but I think I may currently lack the wherewithal to isolate my motivations, comprehend and marshal them in my best interests. Perhaps I am setting myself up for more hurt? Part of me feels that I should let people grow ever distant, set them free.

I have continued to engage with my online friend since we connected late last night. I am in the sitting room at my desk writing this post. I emailed my recently allocated social worker, ostensibly my key worker, around 8 this morning to let her know that I am in dire straits. I have been told there is nothing that can be offered right now, but I forced myself to ask her directly if there is anything at all  that she could do to help me at this time. Occasionally, pushing hard reveals that actually something is possible, but my experience is that pushing alone, however skillfully, is rarely enough. You’re easily dismissed when alone and without others to back you. I had to do something having failed to find the courage to attempt to kill myself. I’ve not yet received a reply but continue to compulsively check my email. She might even be on leave. The working day is all but over as I write this sentence, at any rate.

I could say more; I still feel compulsive urges to do so, particularly around the suicidal ideation, and also expanding on reasons for the dearth of support, in a desperate attempt to make readers understand. I shall refrain from doing so, and deploy my inner ‘Tigger‘ to publish and be damned.

Final note: I have just received a reply from the social worker. It is kind enough but offers no support, just tells me to keep keeping on by myself and reminds me of the usual crisis lines. I will try to write specifically about the health and social care support situation soon.

Thank you for reading.