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 

‘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

 

 

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

 

Word of the Day

I think I’m about to … go kerflooey.

As a writer, I L*O*V*E words and kerflooey is my new favourite. I noticed yesterday that it was the Word of the Day on dictionary.com. I immediately thought it a fantastic word for spoonies like me.

Living with chronic illness is a challenge. If you’re anything like me then you get your giggles where you can, in spite of it all. Fatigue is a component of many #spoonie lives. It’s much more than tiredness. The best way that I can describe it is that it’s as though someone has flicked my power switch to off, prompting a sudden and complete shut down in terms of energy.

off-switch

As I adjusted to life with chronic illness, I came to describe these instances as ‘hitting my wall’. eg.¬†That’s me done, I’ve hit my wall. ¬†It can be frustrating and debilitating to experience, but that’s not to say that we can’t use a fun word to represent it. From now on at these times I will be ‘going kerflooey’.

Kerflooey: adverb, go kerflooey

Informal. to cease functioning, especially suddenly and completely.

How about it #spoonies? Shall we start a #kerflooey hashtag?!