Heart REset on living + SEVEN WEEKS

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

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

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

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

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

Priority 1:

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

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

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

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

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

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

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

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

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

Heart x

 

I’m baaaaaack!!

No really, I keep saying that but I really am back this time 🙂 !

Time and ‘spoons’ have been in short supply as there is such a lot going on in my life just now – all connected to the ‘big plan’.

I’m behind with my reading and commenting on other’s blogs and also on replying to comments on mine too. Forgive me, I’ll catch up soon.

I’m going to write a series of posts over the next few days. My intention is that they will be bite-sized updates and musings.

In the words of Miranda’s ‘Tilly’ bear with, more is a-coming …

 

 

 

 

Quick check in: I’m still alive!

Just to say that I’m still alive and I’m OK, I’ve a lot on my plate but I’m doing well. I just haven’t had the spoons to blog. I have tried and there are a couple of drafts in progress.

All being well, I will return over the weekend with lots of news.

Happy Friday folks.

Heart x

Treadmill Tales: Day 15

Well, I am pleased to have that under my belt!

12 minutes
3.4mph
61.4 calories
I jogged for the first three minutes and the last minute and I walked the remaining time.

I said that my plan would be subject to revision as I reflected on my progress and here are my thoughts so far.

• I’m delighted to be jogging AT ALL, I didn’t think that would be possible as I had become so deconditioned due to illness and gained so much weight.
• Now that I’ve introduced a little jogging, the walking is feeling a bit boring in comparison so I’ve decided to maintain the 3.4mph pace for the jogged minutes for now, but up the pace for my walked minutes in that hope that that will increase my engagement. I will also try to dig out my old MP3 player and set up some podcasts on that that I’m longing to hear.
• If I can manage a session tomorrow on top of going out then I plan to do 13 minutes and then 14 minutes on Saturday.
• I’ll do 15 minutes on Monday and then I plan to stay at 15 minutes for the rest of that week. My pace will probably stay at the same rate but I plan to jog for a total of five minutes – three at the start and two at the end.

 

Treadmill Tales #5 and #6

I completed my treadmill ‘5’ at 11 this morning, clocking up the same stats as on the previous five days – 0.25 miles at a pace of 3.1mph. Slow, slow, slow but I know it’s the way I must go! Again, I enjoyed being on the treadmill on Saturday and this morning. I felt it in my knees, the left of which took a huge whack in a fall last November, today. Falls are part and parcel of my ‘spooniness’, and I’m most prone to them when stressed, rundown or insufficiently pacing. The knee issue this morning may be down to the timing of the ‘tread sesh’, those last week occurred in this afternoon or early evening, it may have been due to the pain and stiffness that are felt especially on waking and for some time afterwards, due to Fibromyalgia.

I made myself laugh while ‘treading’ on Saturday, just after writing this post, as I suddenly remembered a host of other achievements I could have listed. It cheered me anyway to remind myself of what I’m clocking up.

Sunday is a rest day – no treadmill on the plan – which was just as well as it became an ‘enforced rest’ day as it turned out. My mood was somewhat impacted, which is always a worry, and my mind was bothered at turns by grief, memories and new understanding. The latter is welcome but can be painful, often very, and is difficult without ready support.

Enforced rest vs chill out time

I’ll make this quick for reasons that will become apparent. I wrote yesterday about putting myself into ‘Standby’ mode.I realised that I could’ve done a better job of explaining that after people told me to enjoy my rest and relaxing time, and that I’ve earned it. 

I’m not managing to do a great deal this weekend and I’m mostly lying about in bed. If you have a busy life working or parenting or whatever, then that might sound like an attractive proposition. However, I’m not happily ‘chilling out’. I’m stuck in bed because my body isn’t capable of doing much else at the moment. It’s frustrating, dull and impractical. Alas, it’s not fun. 

My symptoms are numerous and can vary wildly at any given time. This weekend’s particular version of ‘standby’ mode essentially involves feeling really ‘shite’, due to nausea, pain, palpitations and breathlessness, and with fatigue, some unsteadiness and blurred vision –  all part and parcel of my ‘spoonie-ness’ – and having to lie still to keep some horrible symptoms under some control. 

Screen/online time offers good distraction and company but can also exacerbate symptoms so I have to try to find some sort of balance. Lying down in a darkened room with no distractions or contact would help my body but would drive my mind insane. My mental health thrives on action and productivity. I have to somehow come up with a kind of happy medium. 

I’ve still got to do some things like eat and wotnot but that’s anxiety provoking because I don’t know how much attempting to do those things will exacerbate my symptoms. Sometimes I’ll be afraid to try, sometimes I’ll plough on regardless – sometimes I’ll get away with that, sometimes I’ll pay a heavy price. 

That all sounds so negative which makes it very difficult for me to say, but if I try to hide from or ‘sugar-coat’ the realities of chronic illness then how are people going to gain a better understanding? 

I am still … mostly … smiling :). My mood hasn’t plummeted as can happen when the body is struggling so much. I have hope that a better day is around the corner. To be honest, although I know it’s a possibility, I don’t think about the prospect that one is not as that would sure as heck make it more difficult to cope. 

Back into standby mode for me then and managing to do what I can in this ‘spoon drought’. 

Thanks for reading. Comments welcome as ever. 

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.

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.

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.

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

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

Well … what a difference a day makes!

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

You might think me weak.

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

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

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

Yep, she did.

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

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

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

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

***

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

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

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

“Let’s have a cuppa”, she said.

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

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

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

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

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

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

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

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

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

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

Heart x

 

 

 

 

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Successes, Safety and a Salient Staircase

Sleep was brief, around four hours, but surprisingly restorative. I didn’t have the ‘spoons’ for this morning’s planned soak in the bath but was able to shower thanks to my bath board. It’s a disability aid that I was reluctant to take possession of last year but which is actually worth its weight in gold.

I spent some time menu planning – breakfasts, lunches and dinners – yesterday evening. Having a plan is beneficial on many levels not least in beginning to tackle my eating disorder, promoting self care and maximising my tight budget. Variety, satisfaction and healthy options are key to the former. As I said here, when ‘spoons’ run low cooking so often falls off my to do list. I’m making it a priority as one of my first steps out of this current crisis. Some old favourites will feature on the plan together with some new recipes. Here’s a selection:

• Baked eggs with mushrooms and spinach 
• Courgette and potato soup
• Courgette muffins
• Chocolate orange porridge 
• Three bean pate
• Porridge Berry Bakes
• Sweet potato wedges with homemade houmous 
• Mushroom and herb pearl barley risotto 
• Quesadillas – most likely cheese and bean 
• Lemon and dill courgette with broccoli rice, houmous & salad

Yes, I did buy a large box of ‘Basics’ mushrooms and large bag of ‘Basics’ courgettes and have been hunting ‘spoonie’ friendly courgette recipes!

Today’s breakfast was an old favourite from the Hairy Dieters – crumpets with warmed berries, fat free Greek yoghurt and a drizzle of honey. 

Lunch was herby mushrooms and tomatoes on toast, followed by a banana.

In case you hadn’t noticed, I don’t eat meat. Dinner was a bowl of the Chilli Non Carne that I made this evening. My recipe varies according to budget and what I’ve got in. This version used the following:

• 1 large red onion 
• 1 small red bell pepper
• 1 small green bell pepper 
• A handful of mushrooms 
• A carton of ‘Basics’ chopped tomatoes 
• A tin of ‘Basics ‘ baked beans 
• A tin of ‘Basics’ red kidney beans 
• Tomato puree
• A cheat’s sachet of chilli seasoning together with my own ‘everyday’ seasoning 
• A packet of Granose dried soya mince.

I bought several packs of the soya mince while it was on offer and much cheaper than Quorn  or generic chilled varieties. You reconstitute it with boiling water then treat as normal. It does not look appetitising when first made up but tastes good in the finished product! 

I’m really shattered and virtually out of ‘spoons’. Emptying the dishwasher of last night’s load and putting in today’s dishes has to wait until tomorrow. The chilli prep and cooking takes a fair amount of ‘spoons’, and by the time I finish I’m very sore, luckily it will make a few meals. My Fibromyalgia had already rendered me very stiff today, so when I stand up I can’t straighten up at first and have to painfully unfurl pace by slow pace. In these moments I laugh at my predicament to help me to deal with it. 

I’ve just enjoyed watching MasterChef. I do admire the cooking adventures of the participants. I smiled tonight at the appearance of ‘whey-glazed carrots’ … they’re waaaay beyond my culinary ambition! But seriously, if posting photos of your daily meals and basic cooking efforts seems dull or even narcissistic, I can say only that it’s integral to my thrust for recovery. I can’t remember the last time I ate three good meals in a day, let alone made three virtually from scratch. Posting in this way, in celebration of my efforts, is motivating and a useful record of my progress. Perhaps, somewhere along the line, my posts might help someone else too. 

9:50pm I’ve been pyjama’d and under the covers since a little after 8 but I’m determined to complete and publish this post tonight. I’ve had to rewrite half of it after WordPress gobbled it and refused to give it back. I suspect I’ll sleep tonight, but it might be an idea to take painkillers to try to limit the risk of #painsomnia. 

I was able to meet with my advocate this afternoon for the first time in over two months. This is a huge deal. I’ve made many attempts to meet with her since mid February but overwhelming trauma symptoms forced me to cancel each time. She visited me at home together with one of her colleagues, both were so lovely. I had written notes ahead of their arrival. We had a productive meeting  It felt safe, and to feel any sense of safety at all, after the devastating events of last year, is progress. I’ve yet to regain real hope for the future – something I thought couldn’t be shattered, after all I’ve survived so much, but last year’s events broke me – however, I’m focusing on an idea that was once very helpful to me … You don’t have to see the top of the staircase to take the first step. 

My advocate and I have made a plan of initial steps. We’ll speak on Monday and arrange a further meeting.