Applauding myself and keeping going with a smile on my (red) face in spite of it all!

I’m jumping back in where I am, and trying not to get bogged down by trying to fill in the gaps. This post will be part explanation and part celebration.

Why the celebration? Don’t get too excited, this won’t be the average person’s idea of celebration. This is a #spoonie celebration, that’s celebrating every achievement when times are difficult due to chronic illness to remind yourself that you’re a legend … ūüėÄ ! This is particularly important to me because I have so little in the way of support, still waiting on social services – less said about that the better right now, and keeping going on your own in the face of so much can be very very tough. This is like being my own ‘cheerleader’ ūüôā .

I was woken by the phone just before 9am today. I felt dreadful. My night was a bit of blur but I remembered that it had been marked by nightmares and night sweats. I spent a lot of time going to and fro the loo, thanks to a bad bowel flare. I also felt nauseous and clammy, and the fatigue that has particularly plagued me recently was still present. Thankfully it wasn’t so bad as yesterday when I had to go back to bed at lunchtime because I couldn’t stay awake and kept falling over, but this morning five minutes or so of activity warranted rest afterwards.

I’ve just realised that my face is showing signs of that horrible flare up again, the one that happened several times a few weeks ago. At its worst my face ballooned and I could barely open my eyes. Earlier today I thought something didn’t look quite right when I glanced in the mirror but couldn’t pinpoint anything specific. Now it’s looking increasingly red, particularly around my eyes and mouth, as before, and under my chin, and it has begun to itch … *dashes off to take an anti-histamine*.

I do generally feel like a I’m in a ‘flare’ of some sort. I ache, I’m lurching between insomnia and the most crushing fatigue, I have too little energy (hence no treadmill tales¬†of late – I’m desperate to run but at the moment have no capacity to do so) and my digestive disorder (Bile Acid Malabsorption) is seemingly flaring unexpectedly and very badly. There’s also the nausea, hot flushes, clamminess and night sweats, and I’ve been experiencing violent mood swings lately, not at all like me, resulting in sudden and very severe depressions. I lost six days to one last week, things got very desperate and I became actively suicidal at its peak. I’ll cover that a little more in a separate post. I strongly suspect at least some of the symptoms to be due to a hormonal issue, likely a particularly impactful perimenopause, but I don’t know if that’s true of all of them. I would like to know what’s going on and I’d certainly like to feel better. All recent blood tests apparently indicated that all is well …

I’m conscious of not wanting to make this a long post, and of the need to take off my make up and apply some of the dreaded steroid cream since my face has begun to flare again. I have no idea what is behind these flares, but still suspect something systemic. I wasn’t wearing any make up at the time of the original incidences of this, and today I’m wearing minimal make up, nothing new, that I’ve worn a lot recently without incident.

Today’s achievements

  • Shower/Dress
  • Meds
  • Therapy session
  • Too nauseous to eat breakfast but made a lovely post-therapy brunch
  • Answered the phone twice – first a wrong number, a lot of people seem to think that I am a fancy hotel in a neighbouring district (!), second time it was the tradesperson who’d arrived to carry out annual safety checks for my landlord but then couldn’t work out which entry buzzer was the one for my flat, so rang to be allowed in!
  • Created a new label for my buzzer on the door entry panel, to replace the previous one which had worn off, and stuck it firmly in place when I went down to take out my rubbish
  • Started an online art therapy course – completing the first six lectures
  • Did a lot of work in my bullet journal
  • Dealt with my pharmacy delivery – ‘Pharmacy Bob’ was as lovely as ever.
  • Emptied and refilled the dishwasher
  • Put on a load of laundry – phew, looks like I just escaped having to start going commando … !
  • Booked a cab to get me from a physiotherapy to a dental appointment on Friday. The physio is squeezing me in, it’s the only space she had, but it leaves me with just 10mins to get to my appointment at the dentist – hence the cab and a need for me to shout, ‘Step on the gas, my man!’ (not really ūüôā )

Still to do

  • Report leaking dishwasher
  • Hang laundry
  • Make this recipe – hopefully it will be a bit of a treat
  • Evening Routine

 

Monday musings 

Feeling a bit scared tonight because I’m a lot more fatigued and in a lot more pain than I’d expect to be in accordance with my activity. 

I don’t think I’m coming down with anything and I have been pacing myself very carefully for the last couple of months. 

I’ve just got into bed (8:05pm) and I’m tapping this out on my phone. I’ve got a very early start tomorrow because I’m due to attend a free course run by a local organisation for people who have disabilities. Both lunch and transport are provided and I’m due to be collected by taxi at 10am. 

I’m worried that this excessive pain and fatigue is a sign that I’m entering a flare-up – a prolonged period of increased symptoms. A bad flare reduces my capacity to near zero and makes it very difficult to look after myself without support. Such incapacity and not being able to properly look after myself takes a serious toll on my mental health. I have one friend who could drop in with supplies in an emergency but she travels a lot and is often not in town. Otherwise it’s just up to me. 

It may not get so bad again this time. I am well aware of that and I’m certainly not trying to focus on the gloomy side. That is definitely not my way. I guess I’m just aware of how much I’m at risk while I’m still without support. Things are hard as it is day to day but in a flare up they become impossible. I suppose that no matter how positive, how Tigger I am, that reality remains and whether consciously or unconsciously it’s hard not to worry when symptoms worsen. My mood feels wobbly, better than over the weekend, but as though it’s not on solid ground. It feels vulnerable and so do I in turn. 

I knew I faced a huge challenge to carry on without any support at all while waiting for the wheels of the social care system to turn. It’s been almost three months now since I was finally assessed and found to be in urgent need of support at home. I’m hoping so much that support will finally be in place by the end of this month.  I hope that I will be able to take my foot off the pedal just a little and feel like just a little of the burden has been lifted from my shoulders. 

I’ve had a productive day today starting with some physio exercises, then, after showering and something to eat, doing necessary admin, some domestic stuff including two very necessary loads of laundry to provide me with both clean underwear and towels. I posted some cards and letters, picked up a few errands and I met a friend in a nearby cafe for an hour which provided me with some very welcome company and conversation. She has schizo-affective disorder. As I understand it, that means that she sits somewhere on the spectrum between schizophrenia and bipolar disorder. She feels herself to be bipolar with a bit extra thrown in. She has many challenges of her own. We arranged to go to see a local band play late next month. It’s a free gig, just an hour in length, so bite-sized which fits my spoonie requirements, and is during the daytime, which is also a must for me. I’m silently praying (or something, given that I’m an atheist) that I will keep well enough to go. 

It’s high time that I stopped writing and focused instead on trying to relax. I need to be asleep by 10:30pm at the latest. I still need to assess whether I’m going to need painkillers in order to be able to sleep. I will manage without them if at all possible. I also need to clean my teeth and moisturize – the last couple of bits of my before bed routine. 

G’night folks!

Heart x 

Heart REset on living + SEVEN WEEKS

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

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

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

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

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

Priority 1:

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

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

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

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

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

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

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

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

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

Heart x

 

Vague and slow

I’m referring to my experience of the social care system, although I’ve also felt a bit vague and slow myself today … such can be spoonie¬†life!

So, yes, I was referred to the social work service in my area in April 2016. A little over a year later (yes, despite the referral being marked ‘urgent’ it really did take that long – we would all lose the will to live if I were to detail all the intervening shenanigans) I met my newly allocated social worker who was to undertake an assessment to determine my eligibility for social care support. This involved taking a detailed life history (not inconsiderable given that I’m in my late forties) and details of the circumstances surrounding my need for support.

The assessment was undertaken in two appointments at my home of around 80 minutes each, 11 and 10 weeks ago respectively. My social worker also explained that she would be my ‘key-worker’, but despite being asked was unclear about the actual remit of her role. Generally it’s a role of co-ordination, in this case it seems that her responsiblility was to make an application for social care to my local authority on my behalf, which includes her assessment report and recommendations. The latter being that she believed I should be granted funds for a support worker/personal assistant/assisted living worker (they seem to have all manner of titles essentially meaning the same thing) for four hours per week, two hours twice weekly. This time would be utilised in two ways, split roughly 50/50 between domestic help – cleaning, cooking, shopping and other household chores – and social/emotional support – eg. company on a regular walks, support to go swimming or do other forms of exercise, help getting out and about where necessary, someone with whom I can talk.

The social worker went away to prepare and submit her report which she said would take around four weeks. In the meantime I was to decide how I would like my support to be provided, assuming funding were to be approved. I had to decide ahead of approval to make the process go more smoothly. This proved difficult as her explanation of the seemingly multitudinous options was less than comprehensive to say the least and I was left baffled. After some research on my part and a further brief meeting with my social worker, I made what I hoped was the right decision based on the information I had, although there were still gaps in my knowledge that I hadn’t been able to fill.

My social worker hasn’t had any other involvement with me and she left work yesterday to begin a period of maternity leave. She’d said she hoped to get everything wrapped up and my support in place before she left, but that wasn’t to be – an email yesterday evening told me that my third choice of provider could support me BUT has a lengthy waiting list. My second choice provider think that they will be able to support but have been unable to give a definite answer so far. At some point I’d already been told that my first choice had a waiting list of months … and months … and months.

If she could get support in place before she left her role, my social worker had said that I I would not then be allocated a replacement social worker – but that there would be a general social work number that I could call should there be any issues with my support that I couldn’t sort out myself. However, if support could not be put in place in time then, she said, my case would be allocated to another social worker.

Her last update came at 6pm on her last date of work. She had emailed in the morning to say that she’d definitely be in touch before the close of play and promised not to leave me in the lurch. She was unable to tell me who would take over my case, she said she didn’t know. I’m envisaging a department of overworked social workers with vast caseloads and a sense of not knowing where to put me. She did give me her manager’s details, ‘in case I wanted to chase it up.’

In my mind, I’d nicknamed my social worker ‘Stepford Wife’, perhaps unfairly, I do not know her well. She’s always appeared to be very smiley on the surface but it’s like there’s nothing behind the smile, she felt very disconnected. She’s young and had been in this particular role for around a year. Whether the stress of the job led to that ‘disconnection’ or that is just her way, I don’t know, but it meant that I never had full confidence in her nor did I ever feel entirely comfortable dealing with her. Still, I had to trust and hope that she would do the best job that she could for me.

I’m well aware that social care has been subject to significant budget cuts, something which I strongly oppose. There’s no doubt in my mind that people in need of services are suffering as a result. But it can be difficult to tell sometimes whether delays, poor communication and other issues are a result of the impact of budget cuts or down to the shortcomings of staff themselves.

I’m going to give it a week and then all being well will email the manager to try to get a further update.

Following the assessment, I have capitalised on the hope that support would ultimately be forthcoming, together with the hope I took from my friend’s unexpected visit seven weeks ago. I’ve used both to keep myself going. More on that in the next post.

Thanks for reading. Comments, shares, tweets all welcome as ever.

Heart x

 

 

 

 

Boarding the Social Care Merry-go-round

Hello again ūüôā !

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

This is an intense post … very raw

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

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

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

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

****

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

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

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

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

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

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

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

***

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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