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 

Treadmill Tales: Days 18, 19, 20, 21 and 22

Day 22 (that’s today) stats:

15 minutes in total
Three minutes jogged at 3.4mph
then nine minutes walked at 3.7mph
and finally three minutes jogged at 3.7mph

Total distance – 0.89miles and total calories – 80.1. 

I haven’t been slacking, I promise, I wasn’t able to use the treadmill on Monday to Thursday this week due to fatigue … and just to clarify as some people do get confused, fatigue isn’t the same as normal tiredness, it’s extreme tiredness, like someone just plugged the plug cutting off the energy supply, you cease to function. My fatigue is related to my Fibromyalgia. I have been active this week – busy days out of the flat on Monday, Tuesday and Thursday, so I have had some exercise. I am still getting over last week’s virus and I’ve had a LOT of stress to deal with this week in the form of assessment appointments for NHS trauma therapy, which gobbled spoons. I’ll explain why that came to be so difficult in a separate post. Some days I have crawled into bed before 8pm, once at 6:30pm!

I’d planned to make this a 15 minute week on the treadmill, repeating my stats from Day 17 each day. As I had missed four days, today I decided to push a little past those stats and jogged for a total of SIX instead of four minutes. It was hard work ūüėÄ but satisfying … and I learned that I need to remember to remove my wig, if I’m wearing one (I have alopecia (female pattern balding), in case you’re wondering) before getting onto the treadmill because otherwise I really melt!

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: #12, #13 and #14

Another week of being hijacked by symptoms necessitates a slightly more creative treadmill routine.

I planned to do my session on Monday (Day 12) evening but in the end it just wasn’t possible to work it into my routine after a heavy day. My appointment at the GP surgery and a few errands had involved a good bit of exercise.

On Tuesday (Day 13) I spent 11 minutes on the treadmill and upped my pace to 3.4mph, I jogged for the first three minutes AND for the last minute. I covered 0.6miles and apparently burned around 56 calories – that’s a dark chocolate coated rice thin ūüôā ! I was very pleased with all of that.

Late on Tuesday night, I brushed my teeth and almost immediately afterwards found that I had a very sore throat and neck. I then really struggled to get to sleep and was awake until around 5am. The postie, buzzing to get in, woke me just after 11am. I was too sore and out of it to make it to the door in time. He left a card advising me of two parcels too big to go through my letterbox. I’m not expecting anything so I’m very intrigued. I’ve scheduled them for redelivery tomorrow.

I was able to get it together – just about – for my therapy session at midday. On days like that therapy delivered via the telephone is a boon. I wrote some notes after what was an intense session, then showered and dressed. I walked up to the top of my road (uphill) to the postbox, to deposit a wedding card for my ex-husband and his fiancee who are getting married this month, and I picked up a few items from the nearby shop. I found the whole endeavour a bit of a struggle and then knew I was either coming down with something or having a further¬†spoonie flare up. I was SO delighted to see¬†Pharmacy Bob¬†at the top of his usual hour slot, avoiding the need for me to fight crushing fatigue any longer. I could barely keep my eyes open. I collapsed into bed at 4.30 and was soon asleep. I slept for around three hours then I watched some telly, had something to eat, and managed the odd message on social media. I felt rough, ached all over, my throat still hurt and I was coughing. I took paracetamol and when the achy turned to more intense pain, half wished I’d taken something stronger. I fell asleep around 1.30am and woke just after 9.30. I felt better than I had but had to take my time getting going. By lunchtime I’d completed my medication routine (one pill then wait an hour, then take my bile acid binding agent mixed up in fruit juice and wait a further 20 minutes before eating anything), showered, dressed and had something to eat.

I’m tired, sore and feeling slowed down and somewhat frustrated by that. Sitting at my desk is uncomfortable, but I really want/need to write today. I also feel rather ‘foggy’ which doesn’t help the writing. I’m behind with approving and replying to comments on here, I’m sorry about that folks, I’ll catch up as soon as I can, possibly not until I have a few more spoons at my disposal.

I hope to be able to get on the treadmill in a couple of hours time (mid afternoon) and clock up my 12 minutes. I really need to go out tomorrow if at all possible, so I’ll be concentrating on looking after myself as much as possible today to give me the best chance of doing that. At this stage, I think this is a virus. It can be difficult to tell as flu-like symptoms can come as part and parcel of my chronic illness. I really don’t like using the phrase, and prefer the euphemism¬†spoonieness! That struck me there because generally I prefer direct phrasing over euphemism. A virus on top of¬†spoonieness (!) can be a real pest.

 

Treadmill Tales: #7 and #8

Yesterday was a miss. I was due to increase from five to six minutes yesterday, but jumped instead to seven minutes today.

Stats: 0.35miles at 3.1mph – it felt slow today and I was itching to increase my pace, again I reined in¬†Tigger and stuck to my plan! I’ll continue to increase my time by one minute from now on, on up to 20 minutes where I’ll reassess, then hopefully move on up to 30 minutes. From 10 minutes I can start to increase my pace … yay!

 

‘Painsomnia’ and a painful mind

Yesterday was, to be frank, a bit rubbish. Pain disturbed my sleep on Monday and kept me awake for the greater part of the night. Lack of sleep caused other physical symptoms to flare; this ‘symptom siege’ coupled with fatigue, felled my body but allowed my mind the freedom to perform a fandango!

Fandango
noun
  1.  a lively Spanish dance for two people, typically accompanied by castanets or tambourine.
  2. an elaborate or complicated process or activity.

There were no castanets or tambourines. This was more lively storm, than jamboree. Grief was first to step onto the floor and whirled around with emotional pain, anger and depression in the ‘fandango’ that was my mind trying to process recent events and their relationship to the abuse and trauma I experienced in the past. This is, as I’ve said previously, a welcome process but it is painful. This is especially true when it occurs unbidden AND when support – which is twofold (someone/some people with the experience, professional or otherwise, to help you with the process and someone/some people who can listen, be kind and offer a hug – essentially comfort you) – isn’t readily available.

My interim therapist is on leave this week – 12-12:50pm on Wednesdays is my usual session time. I say interim because it’s not ideal. I’m accessing therapy via weekly telephone sessions via a mental health charity, while I’m continuing the, to date, 17 month wait for trauma therapy on the NHS. I’m due to be assessed on 10th July so that the NHS may decide what, if anything, will be offered to me.

I actually don’t have clear recall of all of the ‘processing’ that my mind got up to yesterday. ¬†A lot can happen in a short space of time – it can be a violent but relatively short-lived ‘storm’. My lack of recall could be because …

  • There was a lot going on – too much to fully take in
  • My memory was impacted by the low mood that came with the storm
  • In the absence of ready support, my mind ‘shut down’ or has ‘dissociated’ from the thoughts and feelings involved because of their traumatic/distressing nature

I know that suicidal thoughts occurred.¬†Please know that on this occasion no action is required in response to those; I am safe.¬†These were passive thoughts. There was no active planning, there wasn’t even a desire to die, this was a sense that perhaps suicide¬†might¬†ultimately be my only option because of the pain and the difficulties I face. The feelings passed and I don’t have any suicidal thoughts or feelings at the moment.

I know that I was at times distressed because of new understanding regarding my abuse. I know that I cried, which is still something I can’t do easily.

I know that at least one point I felt real anger about what was done to me. I very rarely feel anger. In fact, last year a psychotherapist suggested that I might translate anger into guilt and so feel that instead. This makes some sense to me but is something that I’ve yet to explore.

I managed to sleep better last night. I don’t know what caused Monday night’s severe pain. I don’t think I had done too much. The only ‘new’ activity was the wee stroll that I took up to the shop and the postbox at the top of my road. It won’t stop me trying again, but I have to be mindful that, at the moment, this may be a pain trigger.

I was able to get up within an hour or so of waking, and shower and dress. I was about to type that I was looking forward to a visit from a friend this afternoon … when she arrived an hour early … so here I am again, post-visit. We had a lovely afternoon, a really good natter and catch up. She brought fancy biscuits that went down well with our cuppas ūüôā and some lovely flowers. I really love flowers and was just thrilled.

We haven’t known each other very long, but I think this has the makings of a good friendship. I think of her as a ‘breath of fresh air’. It’s taken me a long time to understand that I have a tendency to attract people who are drawn to my energy and enthusiasm … but who want to ride on the back of it, weighing me down. This friend has energy and enthusiasm and a ‘grab life by the horns’ attitude to match mine. She’s keen to introduce me to some of her friends – one, a former GP, who writes and the other a fellow trauma survivor who loves arts and crafts as much as I do. I look forward to meeting them both.

I had thought of taking another wee stroll today, but decided against it, my friend was here for three hours. I’ve been doing laundry and chores, and writing, and I’ve still to do my treadmill time and prep a stuffed pepper to throw into the oven for dinner. I’m having it with some microwaveable broccoli ‘rice’… it’s good, honestly! Hopefully, I’ve just enough ‘spoons’ left to accomplish that.

I had some news earlier from the social worker that wasn’t great, but not terrible, we’ll cover that in another post.

Thanks for reading.

TTFN,

Heart x

 

 

A look at the BIG plan …

With me, there’s ALWAYS a plan. I discovered Bullet Journalling last year … and was as happy as the proverbial pig in muck/mud/sh*t – however you choose to term it, having discovered a cool system to both simplify and maximise my planning activities!

I was in some pretty deep doo doo at the time and struggling to keep afloat, 2016 being my annus horribilis,¬†but at least I had a ‘customizable and forgiving organization system’ to help me… And one, according to the creators of the system, that will ‘teach you to do more with less,’ surely that’s got to be a goodie for a¬†spoonie?¬†

Tea is oft purported to be the cure for everything. Personally, although I like tea, I think stationery is the answer to everything. A nice new notebook, PENS, lots of lovely PENS, and paper, and labels and stickers too … oh the joy! Give me those and I’ll scribble and doodle my way to a master plan. If you’re a stationery/planner geek, you probably already know the joy of just doing a Google image search for ‘bullet journal’ …

A Bullet Journal is essentially – diary/planner, journal, to do lists, notebook, budget tracker … and anything else you need … in one. For me, a bullet journal keeps me on track but does away with the need for a multitude of ‘systems’, and it’s simplified approach does allow you to ‘do more with less’. Click here for a quick lesson if you want to learn more or start your own.

wp-1498496147605.jpg
Journal Geek-ery right there: Just looking at them makes me smile, I am THAT bad

I hadn’t named this latest plan until it just struck me that I usually do – others have been Operation Self Care and Operation Fight Back –¬†and then I knew that I wanted this one to be called Operation Thrive. I feel a bit emotional having just written that, because thriving means so very much to me. I had a taste of it earlier last year – when I had some support for a time. I survived but I plan to thrive is this blog’s tagline. Thriving is my recovery goal. Abuse recovery to me = thriving. I can’t wave a magic wand and cure my chronic health issues but when I’m living my life to the fullest alongside them, that’ll do me! When I’m thriving I’ll know that I’ve won, that despite all the pain, and grief, and terrible terrible loss, and so much time spent just existing let alone living, I’ll know that I’ve made it. I know that I’m already a winner in that I’m not bitter, and because I’m a good person and I am, by choice. very different to the people who abused me. BUT thriving, that’s the ultimate WIN.

Operation Thrive Рplan initiated 10th June, 2017

PRIORITY 1: 

  • WRITING – finally this is coming top of the list and it’s staying there.
  • Ending isolation and reducing loneliness by increasing connection
  • Reinstating routine and regaining function
  • SELF CARE!
  • Being able to get out of my flat – and then get out and about locally
  • Getting my flat ‘immaculate’ ready for a routine inspection by the landlord’s agent
  • Re-engaging with GP and getting vital health checks done
  • Taking steps to begin to tackle disordered eating
  • Psychotherapy/Trauma therapy – it’s difficult to know where to place this because of difficulties/delays with the provision of it

PRIORITY 2:

  • Starting to rebuild fitness – and taking steps to resume physiotherapy treatment
  • Visiting dentist both to resume my treatment programme to restore my smile devastated by a dental phobia caused by abuse, and also to assess damage caused by latest crisis and create further treatment plan. (Delayed by illness and financial difficulty)
  • Optician – ¬†have overdue eye test and purchase new specs. – also delayed by illness and financial difficulty.
  • P.I.P – make a new application for Personal Independence Payments

PRIORITY 3: – can only be undertaken once a support worker/P.A. is in place (assuming the local authority awards funding)

  • Back onto a calorie counted diet
  • Increased exercise – talking walks and going swimming – and once physiotherapy is complete joining an 10 week exercise management programme for people with disabilities/chronic illness – assuming I can get onto it, if not I’ve got a Plan B ūüôā !
  • Getting out and about beyond my immediate area and support groups
  • Restarting hobbies, building new ones and making new connections – join a choir (September) and an art group

There are sub-categories to some of the above – but you get the gist as it stands! Priority 1 is all now either underway or complete.

Getting back to work is a HUGE goal, but as I am not to try to run before I can walk, for a change, I’ve not yet included it on this plan. Once I’m settled into Priority 3s, I’ll add more!

The bulk of my Bullet Journalling is at the moment centred on ‘Daily Logs’ – a list of what’s happening and what’s to be done on any given day, and daily recovery focused journal entries that I’ve called ‘Recoverlogs’¬†– a term shamelessly snaffled from mental health campaigner and vlogger, Jonny Benjamin. You may have seen the brilliant Channel 4 film¬†Stranger on the Bridge about his own mental health story.

To do lists keep me on track but are also a great motivator. It feels SO good to tick … ‘done’ ! Budgeting goes in there too, shopping lists, ideas, thoughts and plans for blog posts, notes for and on therapy sessions, and so on. This plan is no small undertaking. There is no one working on it with me, no one to oversee it. My social worker is classed as my ‘key worker’ but is only involved with me as far as carrying out a social care assessment and managing the application for funding to pay for some support. My GP doesn’t know the half of it, as there is never enough time to fill him in on all that’s going on for me. I hope there’ll be an opportunity to share the plan with him at our next appointment on 3rd July.

 

 

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 

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