It’s the little things

I started drafting this when I felt pretty good. Since then I’ve caught a cold and been set back again. So I’m scheduling the post to go out at a time when I expect to feel better again. Confused? Me too. I’m documenting this stuff for myself, so I apologise if you find it boring.

I now semi-officially have a diagnosis of “Probably-Post-Viral-Indeterminate-Crap”. Which to be honest is exactly what I thought back in last summer. Meh. But along the way I picked up a clean bill of health for my heart, which “PPVIC” had been messing with big time, and there is a lot to be said for passing all the cardiac tests with flying colours when your GP thought there was going to be something wrong there. Also I met lots of lovely medical people, including the cardiologist whose letter to my GP begins “Thank you for referring this pleasant 33 year old lady whom I reviewed in clinic this morning.” How nice is that?! And I made a deaf old lady’s day in a waiting room – she had the air of a woman who had no idea she was talking to her husband so loudly everyone could hear her admiring my crocheting as we waited. Apparently she hadn’t seen anyone crochet for so long and was just delighted to see it being carried on for the next generation. Anyway, enough digression.

Here’s a list of a few of the things I can do again now which are wonderful:

  • Enjoy a shower rather than enduring it and needing a lie down afterwards
  • Wash my hair without needing days to recover
  • Brush my hair multiple times a day, because my arms are so light and obedient
  • Enjoy a reasonably hot bath without feeling sick or dizzy
  • Lift D’s saddle wherever I want to
  • Clean his saddle (still a challenge but I can do it)
  • Rug D in his heaviest turnout
  • Trot and canter D and get out of breath in a normal (albeit very unfit) sort of way
  • Give D a thorough groom and ride on the same day
  • Move between a hot room and the cold or via versa without shutting down
  • Go to the toilet without begrudging the steps it takes to walk there
  • Certain yoga poses
  • Be a useful member of the team at work
  • Hang washing up to dry
  • Have a conversation while standing up
  • Read actual print books (they were too heavy for me to hold before)

On the other hand, while a positive sign, it’s rather irritating that suddenly my fingernails and body hair grow so fast. How’s that for a first world problem?! While I was ill, in the unlikely event that I decided to spend some energy trimming unwanted keratin from my person, at least the effect lasted for ages. Now I feel like I must have hallucinated cutting my nails last week because they’re so long again this week. I really hadn’t noticed that nothing was growing at its usual rates, which is good in that if I’d noticed I’d have worried about it, but bad in that I didn’t appreciate the convenience of it!

On being clever

I am clever.

What a socially unacceptable thing to say.

And how can I be clever if it took me 33 years to actually work out that I’m clever?

How come I didn’t notice sooner? Well I think every child assumes the inside of everyone else’s head is the same as the inside of theirs. If they consider it at all. It certainly never occurred to me that some people were clever than others until I was in my 20s. (I just thought some people didn’t apply themselves.) And while I’m pretty sure both parents mentioned my cleverness to me, once you start to grow up even a little bit you realise that the one thing your parents aren’t is impartial about their children’s abilities, so you have to take it with a pinch of salt. Also, adults can easily outsmart children, so again I assumed it didn’t mean much because I demonstrably wasn’t as clever as an adult.

I was also held back from believing that I was clever by really struggling with numbers. I can deal with them if I can pin them down on a piece of paper – hold them in place with their tricky columns of hundreds, tens and units. Unless we get into tens or hundreds of thousands in which case all the paper in the word will not save me from bewilderment. But try to get me to hold and manipulate even small numbers in my head? FAIL. This is what goes on inside my head:

11 plus 88. On paper I can look at the numbers and tell you the answer in a fairly normal timeframe. But ask me verbally to do that very uncomplicated sum and you’ll hit a serious time lag while I try to work out what the sounds mean I have to do. I’ll get to the right answer, but there’ll be a delay that most people can’t understand before I get there.

OK, so what about something a little harder?

23 plus 49. I know that I’ve been given a number with a 9 in it so I can treat it like a round number and then do something to compensate for that adjustment. But what was the first digit of the number with the 9? And where do I give back the imaginary 1 to round it up. By now I’ve completely forgotten the first number and have to abandon it as impossible. Or I could try it another way and add 20 plus 40 plus 3 plus 9, but that would mean holding more numbers in my head so of course I can’t remember any of them and can’t come to the right conclusion.

Tell me to read out 24370 and I’ll have to put my fingers over digits to work out whether it’s 24 thousand or 240 thousand.

I didn’t find out about the existence of dyscalculia until a few years ago, when a book aimed at diagnosing it in 7 year olds passed through my hands; that was a real light bulb moment. I came from a family who could make numbers behave and I, shamefully, couldn’t. I was drilled on my times tables in many child-friendly ways before I even started school, but the main thing I remember from it was the smiley face stickers from the times tables book. My mother uses numbers as tools to make things – accurate carpentry, tiling or dress making for example. My brother certainly gives the impression of one who could dance with numbers should he so desire and my father always appeared to delight in making them jump through hoops. Certainly he enthusiastically tried to teach me a love of numbers, of which the only thing that stuck really was a theoretical fondness for binary because I approved of any way that meant numbers could exist without the evilness of 7 and 8.

One thing you might find interesting is that I still got an A in GCSE maths. How? Because calculators (and lots of paper) were allowed in the exams and because very little of it actually relies on numbers. If you work the algebra correctly, which I’m fine with, and don’t add any confusing numbers until the last possible minute, checking everything three times with a calculator when you do, you can fake it ’til you make it. Most of GCSE maths was a case of 1) remember a process and understand when to apply it 2) follow logic, be diligent and check repeatedly for mistakes. That was fine. And I LOVE the concept of algebra because you get to substitute friendly letters for evil numbers. Were the exams broken or was I just very good at working around my issues? Discuss.

It wasn’t until a few years ago when I realised struggling with numbers didn’t make me stupid any more than dyslexia makes a person stupid when they struggle with words. Also I took great comfort from a few sentences from Margaret Atwood’s Crake and Oryx: “It was because they were numbers people, not word people … Jimmy already knew that he himself was not a numbers person.” Like Jimmy I was not a numbers person, but seeing this made me see that like Jimmy (and Margaret Atwood) I am a word person. I can’t make numbers dance and jump through hoops and do tricks, but I can do all that with words, when the mood takes me. And I’m married to a numbers person. I can’t follow him when he talks his numbers, but that’s OK; I can edit the hell out of anything he writes, and he can help when I’m in a mathematical tangle.

So I established that I wasn’t stupid, which was rather nice. But I still hadn’t realised I was actually clever. Mr S helped with that a bit, as did a friend who (incorrectly) assumed I’d got a first for my degree based of her assessment of my academic intellect. There was probably a steady drip of things.

But it wasn’t until the last few years when I got to enjoy being clever. Various things at work meant that I got public opportunity to be slightly brilliant. I was in the right place at the right time to show off my strengths and I glowed and shone in the spotlight. I came to realise that yes, I am clever, and that I enjoy being clever and being seen to be clever. I realised that I actually was often several steps ahead of the game which is invaluable in project work where time is always against everyone and there’s no time to head off down blind alleys. I made things better by being me. Instead of keeping my mouth shut because it wasn’t my place, I used my words to make people see what I saw as being important. If you’re clever and you know it clap your hands! And everyone else was clapping too. It was heady stuff.

And then my health started to falter. When I have a cold I can’t think. I can’t evaluate and make decisions. So when the series of colds that heralded the beginning of this recent period of ill-health came along I was so frustrated. I can’t be the clever me when my brain has a lurgy lurking. At the time I expected to be back to normal in a week or so, but things only got worse. One of the most frightening things while I was ill was losing my cleverness. I enjoy the words “cog fog” and I think they can probably be correctly applied to what I was feeling, albeit mostly in a very mild way.

I didn’t get bored. I wasn’t well enough to be bored. I could probably have spent the day staring at a blank wall without it bothering me. There wasn’t enough processing power running in my head to feel like it needed to do anything. In doctor’s waiting rooms I took a book with me from habit, but it never came out of my bag because there was no need to distract myself. My brain was blank. Instead of the chattering stream of consciousness, the nag of things to plan, analysis of surroundings, etc., it was empty. I watched television and did things when I had energy to do them because I felt I ought to. In a way it was a blessing that while my body was incapacitated my brain wasn’t screaming to be busy. I was aware it was wrong and weird, but I didn’t have the brain power to worry.

The worst mental symptom was much worse, but still I didn’t really have the brain power to worry about it. In fact, once the direct moment had passed I found it funny. It was a time when I hadn’t worked out how ill I was, and that I needed to approach life differently, so I reasoned that not feeling well enough to drive to the doctors I could walk there. As long as I took it slowly that would be fine, right? Wrong. Although it all turned out fine in the end.

I was fine walking slowly … except where the path inclined slightly upwards. I won’t call them hills because in normal health you wouldn’t even notice the road rising. The first time I had to walk ever so slightly uphill was on a long straight road. So when I forgot where I was going and why, it was easy just to keep going in the same direction and the road levelled out and I then I knew where I was going again and it was fine and didn’t even register. I had a sit down on the bench at the end of the road and carried on. It happened again slightly a bit further on, but again resolved itself before I needed to make any turnings so I didn’t really think anything of it. But when it happened in the town centre I was in trouble. I could remember that I was trying to walk to the doctors, and what the doctors looked like, and I knew where I was, but as far as my brain was concerned the roads and footpaths between the two did not exist. There was only a blank when I needed to decide which way to turn. For want of a better plan I turned left. Was this my subconscious remembering that in computer game dungeons I always take the left turn ahead of other choices? Who knows. It was wrong. I carried on, assuming that at some point something right would happen. And at some point it did. I’d been heading in the wrong direction for some time, but by luck the path was going ever so slightly downhill, which took enough strain off the system for my brain to work out where I should be and get me back on track. Because I’d left ages to get to the appointment I still managed to get there just in time.

So that was the lowest point, but everything did get better. One day I realised I was bored. I hadn’t been bored for so many months. It was the most fabulous feeling, to have the capacity for boredom. Unfortunately hot on its heels came anxiety, which I also hadn’t felt for months, but then I remembered some coping mechanisms and put anxiety back in its place. When I first tried going back to work the mental disparity between what I had been and what I had become was massive. I couldn’t take things in, couldn’t make connections, couldn’t do my job. Each thing I achieved was massive and exhausting … and then I’d realise I was supposed to do it again and again, and faster. Despite that, slowly but surely I think I have come back to being clever again. I’m still finding some things more taxing than others. I find it very hard to remember what happened when – was that last week or this week? Today or yesterday? But somehow, in between the last of the fog and interrogating people about which day it is, I am occasionally brilliant at work again. So that has to be a good thing.

Spoons

As I get better, a lot of the posts I would have posted had I had the energy are going to come out. A lot of them were drafted weeks before they will be polished and published. This one I probably should have just published when I wrote it, but here it is.

l recommend reading the Spoon Theory in the words of its creator, here, but for those who like a blog post to be more self contained I’ll summarise it. Healthy people have energy in large quantities to get them through the day, so they don’t need to be aware of how much they spend. People with limiting health conditions have to budget and ration and be aware of every energy expenditure. Spoons are a metaphor for units of energy. Once you’ve spent all your spoons for the day you’d better lie down until tomorrow because you just can’t achieve any more.

Did you brush your hair today? You spent 1 spoon on that. Had a shower? That was another spoon gone. Unless you shaved your legs and / or washed your hair which each cost at least 1 more spoon. Just getting through a normal morning routine consumes whole handfuls of spoons. If you’re healthy enough that spoons are easy come, easy go, then that’s a small drop in your shiny spoon ocean. But what if you only had 16 spoons to last the day? You know you’ll need to spend spoons on feeding yourself later. On fetching drinks and going to the toilet. Those are pretty essential. Some people wake up with even fewer spoons than 16 (a number l picked at random). Sometimes things you can’t control will demand your spoons. Things like bad news, a spilt glass of water that must be mopped before it gets to the electrical socket or interpersonal conflict steal the spoons right out of your hands.

I wish I’d been aware of spoon theory a few months ago. I was living with so few spoons then. Now I have more. Still few enough that I can’t spend prolifigately but enough to have had reasonably clean, brushed hair everyday for weeks now. Enough to get through most days without reaching for a spoon that I don’t have. Maybe one day I’ll be a spoon millionaire again but right now it feels great to realise how much richer in spoons I have become. I can look at today and marvel at how many spoons l spent without running out. As I get fitter I have stopped worrying about the energy spend for every little routine thing I do but as a side effect I’ve stopped noticing how much I’m achieving each day. Being mindful of my spoons will help me see I am making progress and make me grateful for all the things I can do.

Yoga. Part 2, The unexpected journey to enlightened(-ish) practice

Part 1 available here.

My yoga journey continued sporadically. If the opportunity arose to attend a free session arose, I went to a class. Other times I tried one of the various televised yoga routines. Long periods would pass between these times and that kept it interesting when I did do some. That continued until this year when my health curtailed all physical activity. As I started back to work I wondered if I should try one of the very gentle short yoga programmes I’d recorded off the television. I’d do one I’d done before that I knew was aimed at beginners and so easy that I’d felt it a waste of my time last time I did it.

I couldn’t do it. It starts with cat pose, which I’d never felt any benefit from before, but this time was challenging and full of interest. Then it goes to downward dog, and I couldn’t stay in the position for more than a second or two without feeling dreadful and stopping. I didn’t just need to stop doing the posture, but had to stop the whole session. A few weeks later I tried again. This time downward dog was possible, although I didn’t hold the position for more than a breath or two but came out of it and rested until the instructor moved onto the next thing. I managed the next few postures fine until the inhale up to warrior 2. I smiled in anticipation of my old favourite but my face fell when I realised I couldn’t do it. Damn it!

After each session, even those that I had to quit on, my muscles felt awakened, and I think yoga is going to be a wonderful tool to use on my journey back to health. But like everything it’s very hard for me not to do too much because there’s one massive discrepancy between what I think I can do and what I can actually do, and another between what I can actually do and what I can actually do and still be fairly functional the next day.

To feel well tomorrow I need to do almost nothing today. But to feel well next week and next month surely I need to get my body doing things again. While I was at home I sat and lay and barely used my arms. On my first weeks back at work in the library handling books, even singly, was challenging. I had no grip strength. Circling one wrist with the other hand I can feel the change of shape where the muscles atrophied. With the return to commuting I thought the clutch in my car might be faulty because it was so heavy, likewise the power steering, but I came to realise I just don’t have the muscle strength I never even realised I was using when I drove my car.

It’s true that getting back to the daily grind will rebuild the muscle I need to get through the day, but I feel like I have a blank, if feeble, slate to rebuild my muscles evenly and in balance with yoga. But I think it will be a very slow process.

I have been surprised to find how riding is easier for me than handling books or beginner level yoga. The only things I can think to make this make sense are as follows:

  • I have an obliging and forward going horse. That takes a world of effort off the rider
  • I’m using very light aids which don’t take strength I don’t have and because they’re consistently light he’s got nothing to lean on or fight against
  • I’ve not been taking him into challenging situations on purpose. I know I can’t win a fight so I’ve avoided situations that might cause one.
  • We’re not trying to do anything he can’t do, or to do anything for long enough that he gets properly tired, so he’s very willing
  • Because my ability waxes and wanes from one ride to the next we don’t have much routine in our rides. This keeps things interesting for him, which again helps with the willingness. Also it stops him anticipating what’s coming next and so keeps him tuned in to listening to my light aids.
  • Gravity helps a rider. With a good position a rider fights gravity less than a pedestrian. The only exception is in the arms and I’m cheating there by using a much lower hand position than I think is ideal because it’s much easier for me at the moment.
  • The world thinks riders just sit there while the horse does all the work. Maybe in this case they’re right 😛

Getting back to my yoga theme: coming from this position of humble feebleness, for the first time I have finally understood the importance of correct form and the unimportance of range. I am more in tune with my body, having been forced to learn to listen to it. Because everything is weak, I don’t find strong muscles trying to cover up for weaker ones, and I feel that what is working or stretching matches what the instructor says I should feel.

I have to say this is aided by good instructors. I accept that I was not the most receptive student in those early classes at the gym, but I’m astounded at how good a televised instructor is at preventing errors of form compared to one who could see me, and let me believe I was doing postures correctly when I now see I was often letting limbs or joints point in incorrect positions which diluted the benefits of the positions. I would have thought a television or DVD instructor could never compare to having an instructor who could see you, but I was so wrong, as I was about so many things about yoga.

Now for the first time I come to my yoga practice with respect for yoga and for my body. Now I struggle with the easiest postures but I am more of a yogi than I ever was when it seemed easier.

Namaste.

 

031

Not depressed

I’m pretty sure I’m not depressed.

But…

The fatigue, which comes and goes, at times inexplicably, is confusing me.

In the past, through depression I have experienced fatigue so great I could not speak. This fatigue does not do that. But it is fickle. What I did happily one week is unthinkable the next. I have no idea what the day will bring until I’m a few hours into it. Recently for the first time I was so fatigued that I caught myself thinking how nice it would be if all my blood ran out of me and I died and I wouldn’t have to bother to breathe any more. But it wasn’t a suicide daydream,  just a mental plea to be allowed to lie down and stop doing anything tiring like breathing. I might mention that I was stuck in a traffic jam on the motorway on the way home after a long day at work the time and being dead is the only socially acceptable excuse for just ceasing to continue creeping forwards in that context.

It was so strange to have that thought, that used to be an old companion, but from an entirely different angle. I know the fatigue that comes from depression. I know it intimately and familiarly and I have some coping skills. I don’t know mood-depressed-by-physical-fatigue. But it’s moved in and I’m having to get to know it and it’s weird. I don’t have the relevant coping skills. Yet.

It’s really strange to me that the moment my mood is best first thing in the morning. That’s never happened to me before! I wake up like a smart-phone with a freshly charged battery, bright and shiny and ready for anything … but overuse me and I’m worthless by lunchtime; dim, lacklustre, expending the final dregs of the battery just trying to stay awake. In the evening after a day when I had a meeting, or an unavoidable social event, I am so low in mood and all I want to do is sleep. Yet when I awaken the next day I am inexplicably happy. Unless I have a few “busy” days in a row. After 3 weeks back full-time at work the morning magic stopped working. At work I was getting confused and struggling to balance priorities and clashing with colleges. Outside of work I wasn’t able to ride at all. While riding had been very tiring on the days when I managed it, I felt more energised on the days following a ride. I felt like riding was the one step I could actively take towards getting better and I’d lost that again.

I was owed some hours, which I built up back in the early summer, so I spent my hoarded hours to take a day off and filled it with self-care; meditation and aromatherapy; gentle yoga and relaxation. I even banned myself from crochet for the day to avoid anything goal-oriented. But it still didn’t fix me. So when l saw the nurse at occupational health later that week we agreed I should return to slightly reduced hours again for a few weeks.

It was a weight off my shoulders and the right decision. I’m grateful for the supportive workplace that can accommodate it, but I’m disappointed that once again getting back to normal is further away than I thought. Part of me thinks I could have pushed on with it, kept going, one day at a time, but it’s not a sensible part of me. lt tells me I’m weak-willed, that anyone can handle a measly 36 hr contract, that I need to suck it up and buckle down. The rest of me knows that listening to that voice is a good way to ensure a public meltdown, a return to being too ill to work at all and general misery until I reach that stage.

Hopefully the reduced hours will be what I need to get my sleep-magic working again. Hopefully I’ll be able to start exercising again. Hopefully, once these few weeks of reduced hours are over, I should be able to try full-time work again and this time, hopefully, I’ll be able to make it stick.

What if I can’t…

I’m feeling a lot better now but there was a point a few weeks ago where I was thinking, ‘What if this is my permanent level of health? What do I do about my horse?’ Now I’m seeing significant improvements in my health l think the reflections below are hopefully not likely to be relevant to me but I thought I’d share them anyway.

With the clarity that comes from being mostly alone with one’s own thoughts for long hours, I knew I wasn’t ready to give up my horse. I am lucky that he’s on full livery and this year, weather permitting, they have some turnout every day so if I can’t get there I know he’ll be ok.

But what about riding? What if I can never expect to trot or canter regularly? Surely it would be unreasonable to keep him? But I want to keep him… Could I keep a horse that I only rode in walk?

Well why not? Since getting to know Lee Pearson a bit I’m a lot more aware of para-riders. It occurred to me that in a world with walk-only dressage tests there might be plenty of precedent for horse owners who were confined to walk.

Assuming I was careful with myself I could still lunge him in trot and canter, and I know on his reduced work regime he’s trotting and cantering more in the fields when he’s out. If he didn’t seem happy with that pattern of exercise l might have to consider finding someone to make a regular arrangement with for them to ride him – l couldn’t afford to pay for him to be ridden regularly long term.

l decided I could give him a good life still even if it wasn’t exactly what I’d chose in an ideal world. And I felt this sensible and respectful horse would look after me and keep me sane and safe.

But what would we do together in walk?

l googled for schooling exercises that can be done in walk and didn’t find much of any use. I think there must be loads that could be done in a walk-only work-out. To quote Lee Pearson, “Walk is a working gait; it’s not a coffee break!” So my next post will be about my ideas for schooling in walk, because I bet someone else will find it useful sometime. I can’t be the only one wondering what they can do to put variety into an all walk schooling session.

On convalescence

This is not good writing. It set out with good intentions but then I got tired. Also because I can’t sustain energy it’s been written in instalments at times when I had different things to say. Read it or don’t read it, but please don’t judge.

I rather hope that what I’m doing now can more correctly be called convalescing than anything else, although that’s based on my feelings rather than any medical opinion (medical opinion being mostly unsure as to what’s going on with me).

I apologise for being less than present in terms of commenting and responding to comments. It doesn’t mean I don’t appreciate your well wishes, because I really do, and it doesn’t mean I’m not reading your posts, because I am. But everything is exhausting and that certainly includes navigating the quirks of a mobile interface and strong-arming a touch-screen into publishing the words I want, not the ones it thinks I might mean. (This post is bought to you by Mr S’s tablet (which is bigger than mine) and his lovely solid keyboard and case combining the two into a pseudo-laptop.)

Asides aside, to return to my point…

Society doesn’t seem to get convalescing these days. Classic novels are full of rest cures by the sea, nourishing broths and jellies and tisanes. But these days? One is expected to be either all out sick or back in the thick of things. Or possibly both.

I suppose to a certain extent there’s a socio-economic factor here; a Jane Austen heroine has no pressure to go back to work after all, and the grooms were already exercising her horses, so no pressure there either.

I suppose the niggling disquiet that’s prompting this post contains the following features

  • I have no time scale for when I will be well enough to return to my usual energetic and tiring life
  • Until someone can tell me what’s wrong I harbour the fear that someone somewhere thinks I’m a) faking it b) imagining it
  • None of my limbs are dropping off, I am not passing out and not infected or puking, so by my usual yardsticks I am not physically ill … but there is something physically wrong preventing me from being well. So there’s a hole in my logic, which always upsets me
  • Because I don’t have a diagnosis I don’t know what I should be doing. Should I try to go for a walk or is that detrimental? So I’m learning by doing and it feels like any exercise no matter how gentle is detrimental to my well being. But then I feel like I’m not trying to get well.

But on a more positive note I’m so grateful for my tablet and smartphone. Having a tiny lightweight portal to the outside world is invaluable. I have the whole of the internet at my fingertips without even having to sit up. I can draw on it without needing to locate drawing materials. I can read without having to hold up a book and keep the page open. I can while away the hours with casual gaming, such as aquarium simulators that make no demands on me, and I’ve begun to keep a health diary in it so that next time a doctor asks how long I’ve been having symptom X I’ll have some reference points.

I cannot imagine convalescing without television and portable internet access. Honestly it’s no wonder our predecessors went to the sea for a rest cure – they must have been so sick of the confines of their homes, without the view onto the outside world that our screens offer. But were I an upper class literary heroine I’d ask for blankets and a supportive chair to be taken out to the front of the house where I could watch my horses be trotted up in hand for my entertainment by my grooms. Perhaps the next day I’d have the head boy ride them in front of me to show me their paces. But you know what? I’ll settle for watching another dressage video on YouTube.