Category Archives: Chronic Fatigue

The week so far…

DSC_0010.JPGI’ve been without the Internet.  Apparently there was water in the works!  I suppose its one of the perils of country living.

I am now officially a churchwarden. I’ve been sworn in and have met the Archdeacon. I’m not sure I’m of a suitably serious disposition because on glancing through the order of service I noted ‘the Archdeacon’s charge.’  In my mind I imagined a sober cleric of indeterminate years (but preferably with a fine set of mutton chop whiskers) astride a hobby horse in full ecclesiastical regalia galloping down the aisle followed by a company of choristers – possibly accompanied by bugle and drums.  I clearly need to get a grip.  It turned out that charge is another word for sermon or set of instructions for what churchwardens might like to do – and I can tell you this, I shall not be inspecting the lead on the roof or dealing with the gutters no matter what the archdeacon might have to say on the subject!

And then I went off and attended a meeting.  Clearly I can’t divulge what went on in the meeting as that would be breaking confidentiality but let’s just say that I’ve probably joined the vicar on his mental list of ‘b****y difficult women,’ – but that’s his own fault for volunteering me for the role.

Whilst I was doing that, contemplating the scrapes I manage to get myself into, HWIOO was stripping the cloakroom of its carpet, wash basin and toilet.  I have a very fetching new planter and we have set five days aside where once two would have done for the tiling, flooring and refit of slim line wash basin with waterfall tap (will we ever get the Littlest Madam out of there?)  and low flush toilet.  We have also identified the fact that even with regular breaks and the occasional nap the following two or three days are going to be low key ones.

So all in all today has been a fairly busy one and that’s without celebrating the fact that I managed to install a Paypal button on my main website; send advertising leaflets for the WI to go into the school book bags at our local primary school and sort out my paperwork during the two days where all it did was rain and ruin the flowers.

Village life

scone and creamHaving complained that I didn’t seem to be part of the community I can now officially inform you that I appear to be blending in a bit better.  How do I know?  I’m being informed when people die, that’s how!  As various members of the community people are now telling HWIOO and I about their sad demises.  This is unexpected as we know none of the deceased but we do now.  I wonder if I should attend their funerals to make their acquaintance or at least the acquaintance of their nearest and dearest? There’s certainly always a large turn out for funerals.

Aside from that after a rather prolonged silence on the domestic goddess front I have partaken in the gentle art of serving afternoon cream teas on a bank holiday Saturday.  I have discovered that its an excellent way of bonding as a group.  I’ve no idea why people spend a fortune on team building exercises.  They don’t need to go paint balling or build giant, not to mention useless, structures out of paper and straws, nor do they need to go off on some “jolly” together – what they need to do is organise scones and then spend the day in a confined space preparing and serving cream teas to locals and holiday makers.  This also has the bonus of helping a worthy cause.

HWIOO is still pottering along.  As ever, we’re working at the pacing but we’re trying to cut out the afternoon nap very gradually as I mentioned in January.  HWIOO can now do two afternoons without a snooze so long as they aren’t in succession.  We have learned that if the Little Madams come that for two days after they go he has to revert to doing something for an hour and then changing activity entirely but that he can be more himself during their visit – so in other words to quote the Right Little Madam, he isn’t as broken as he once was.

Meanwhile we still haven’t done something nice beginning with I, although I have found out about the Information Commission Office (ICO) and its requirements.  I have also parted with my cash to register.  I don’t think this of itself is particularly nice but it is exciting that I am becoming more self-employed.  Now all I have to do is find a few more venues, complete the WI speaker course (don’t ask) and write a history book.  I may not move fast but I will get there in the end!

There’re scales for sleep!

DSCF2106Yesterday I stacked logs in the newly built log store, didn’t get rejected by any literary agents and discovered that I have finished by Christmas shopping – which definitely fits me into the domestic goddess category albeit on a temporary basis.  Then I remembered that I hadn’t handed over the hula hoop that the Littlest Madam has specifically asked for on her Christmas list to the Pottermeister and I’m not sure when we’re seeing them again, so immediately fell off my perch of serenity.

Given that the goal is to ensure HWIOO doesn’t require afternoon naps I have been nominated to do some wider reading.  HWIOO couldn’t use a computer for a long time and he still finds that the words do dances and shimmies all of their own devising if he spends too long looking at the screen.

Turns out there’re such things as sleeping scales. Who would have known?  There’s the Chalder Fatigue Scale (CFQ) and the Epworth Sleepiness Scale (ESS).  Don’t you just love all those acronyms.  Basically the Chalder Fatigue Scale is the questionnaire that newly diagnosed CFS patients are asked to fill in assessing their levels of tiredness in order to work out how day-to-day life is going.  Apparently the questions are benign and non threatening…you should try telling that to a man with brain fog like the fog you get when you’re actually inside a cloud. One of the questions actually is “Do you have difficulty concentrating?” There are four columns and you simply select the most appropriate from ‘Better than usual’, ‘No worse than usual’, ‘Worse than usual’ and ‘Much worse than usual’ – which is fine if you can remember what usual actually might be.  The ticks are then scored from 0-3 and mathematical alchemy is applied to determine how fatigued the respondent is.

The Epworth Sleepiness Scale is also based on a questionnaire and just like the CFQ it comes in the pack of papers that voyagers along the treacle path covered, fog filled road of CFS are required to fill in – just at the point where answering daft questions is the last thing they want to do.  So, where are we now…other than knowing what all that paperwork was for?

Well, HWIOO isn’t sleepy, he’s fatigued.  They’re not the same thing. The afternoon nap is a way of controlling feelings of exhaustion which in turn means that HWIOO is able to get on with doing every day things. It follows that if HWIOO doesn’t have an afternoon nap he will continue to feel exhausted and won’t be able to function much beyond three thirty and if he continues not napping he’ll have a relapse – we’re definitely getting better at not reaching those points.

And that’s as far as I’ve got in my reading.  The next step is to dig out the notes that HWIOO was given by his consultant and check that we’re still doing all the things we’re supposed to be doing.

Oh yes – and H is going to be holly.  It’s the right time of the year after all.

Post-exertional malaise or walking through treacle.

treacleG turned out to be for garden centre as we hunted for outdoor Christmas lights – very festive and apparently expected by half the population of the village.  You’d be surprised at the number of people who have told me over the last fortnight about how lovely the previous owners’ made their spruce tree at this time of the year.  And there is g  of our alphabet of fun things to do in one sentence.

It’s been a bit of a busy week, one way or another pacing has not occurred as it should, or rather I didn’t nag enough. And that’s a bit of a funny thing as well. The pacing is definitely a two person enterprise as I work in the role of time monitor but who want’s their partner in life constantly telling them to go and lie down or to stop doing something?   Consequentially HWIOO has a bit of delayed fatigue at the moment or as it’s called in all those professional documents “post exertional malaise” – which sounds a real barrel of laughs.

Essentially we’re at the stage in proceedings where he’s fine for longer and because he’s not getting as tired he’s overdoing it because although he knows he has to pace in order to manage the condition, the boundaries of his tiredness have shifted in a good way – just we haven’t worked out where they’re at yet.  At the start of all this any kind of exertion left HWIOO feeling like some sort of wrung out dishcloth without the next hour of so.  Now the delay has moved to forty-eight hours later and only if he hasn’t been pacing effectively.

I can pinpoint exactly where the pacing failed this week.  It was the brand new log shed. Hand built and stained to match the fence by HWIOO.  He put two coats of stain on the shed whilst pottering around in the garden in between times on Saturday and he was feeling so good he didn’t have some quiet time or go for a walk.  This was bad.  Very, very bad. He overdid it.  However, at the time he felt fine.  By Monday afternoon less so. Tuesday was a walking through treacle kind of day and generally not to be recommended. Bizarrely we should have seen it coming because there were other indicators, poor sleep being one of them swiftly followed by the inability to cope in noisy situations because of the number of distractions. Odd as it may seem when HWIOO has exerted himself beyond what he should have done he doesn’t always head into the stage where the Tiller Girls could be doing the cancan at the bottom of the bed and he’d not notice because he’s so soundly asleep.  Sometimes he goes the other way… i.e. sleeplessness. That and the sensation of being on the edge of a cold and a feeling of anxiety.  Sounds wonderful.

Also with the weather being colder and less good for cycling we’ve not done any aerobic exercise which is bad.

The switch has flipped and we thought we were doing so well and the fact is we were.  It’s all a bit trial and error.  Every time HWIOO takes a step forward it sometimes feels as if we fall backwards on the pacing . The aim is that by the end of next year HWIOO will not require regular afternoon naps – now that really would be progress.

In other news the Little Madam is going to have a Charlie and the Chocolate Factory Birthday party in January- and no I won’t be turning orange and dying my hair green for the occasion although the Wonka chocolate bar production line is being instigated in between the Christmas preparations.

Talking of which tomorrow I’m getting the recipe books out.

 

And e is for – bicycle

DSCF2179That’s right folks e is for cycle or in HWIOO’s case electric bike.  Someone we know with cfs has an electric bike and uses it on a regular basis.  The idea is that you cycle as normal as part of the pacing programme and then the battery takes over before you feel exhausted. HWIOO’s battery charges whilst he cycles and the bicycle frame isn’t much heavier than an ordinary bike.

HWIOO who has dizzy episodes if overtired thanks to his cfs went off to a cycle trail to check that he could in fact ride a bike without ending up in the ditch before we made our purchase.  He could and he was very pleased. Obviously he will not be attempting to do any cycling if he is at the bottom of a trough of cfs but the plan is that the waves of peaks and troughs should be kept as even as possible with pacing.

 

I confidently just assumed that I could ride a bike…which may have been an error. My bike is an ordinary ‘set up and beg’  with a proper wicker basket on the front…think back to the start of the Wizard of Oz.

Today we set off for our first adventure along a cycle trail kitted out with cycle helmets (we never had those when we last owned a bike).  Nor for that matter did I have seven gears when I last owned a bike.  It may have had three but being left handed it wasn’t something that I focused on a great deal.  So not only do I have to stay upright, I also have to change gear, stay on the path and not run out of puff and remember which handle controls the rear brake and which controls the front – as I have no desire to sail over the handle bars.  I can see why the Right Little Madam when she was learning to ride a bike last year  had a moment at one point when it all looked very complicated and gave her bike a good kicking to teach it who was boss before bursting into tears and having a five minute melt down.  She then picked the bike up, got on to it and rode off as though she’d been doing it for years.

 

I on the other hand was relieved to discover that what they say about muscle memory is true and that once you’ve learned you don’t forget.  Just, you know more terror at all the possible mishaps awaiting you than you did as a child which may explain why my arms and hands are more sore than my legs at the moment; I was hanging on to the bike for dear life.  It’ll be easier next time I expect. And hopefully passing strangers won’t tell HWIOO that I look petrified – I don’t think cycling around on a cycle trail is supposed to be a white knuckle adventure.

HWIOO on the other hand has been doing all his pacing exercises and peddled off with ease and delight rather like the Right Little Madam after she’d given her bike a jolly good kicking – something that isn’t going to happen to ours I hasten to add though I do wonder how long it will be before the Pottermeister and the Little Madam ‘borrow’ them.

 

Holiday planning with CFS in mind.

img003Sometimes with CFS its hard to see progress.  One of the reasons for this is the series of peaks and troughs that remind me of something I studied in the dim and distant past for O level physics.  There are so many ups and downs and the occasional ping of the elastic sending the peaks and troughs wild.  You learn to live day by day week by week. One of the problems is that looking forward to a holiday involves keeping your fingers crossed that HWIOO is on a peak rather than in a trough.  It’s one of the reasons he hasn’t booked a photography or painting course.  He’s never quite sure how he’s going to feel until he wakes in the morning. There’s been a couple of holidays that have coincided with a trough and they haven’t been great.  Therefore it’s important to plan carefully so that HWIOO can slumber if he wishes whilst I can still have a nice time.

Today we visited Hexham so a compare and contrast was possible from the start of the CFS journey.  Last time we went there HWIOO had just been diagnosed and it wasn’t the happiest holiday we’ve ever had one way and another not least because I was doing all the driving and HWIOO was so tired that his mental comments on what he would have done were neither complimentary nor internal. He didn’t want to photograph the inside of the abbey, didn’t want to browse the shops and quite frankly would rather have just stayed in the cottage sleeping – whilst I tiptoed around and developed cabin fever having read several books by midweek.

Today it is a much different story.  For a start the afternoon nap is an understood.  There are some days when HWIOO feels up to a gentle potter the whole day, others a quiet sit in the cottage with a book and on others a nap is required.  I have a whole bag of books, crafting essentials and my writing to keep me out of mischief.  I also no longer book cottages in the middle of nowhere.  I now book them so that I can either visit a site of interest or a nearby cafe should cabin fever strike.  It does require some research before booking but it makes sense as does ensuring the bedroom isn’t below the living space!

The other thing we’ve discovered is that if we know that we’re going to come back to an area it removes my overwhelming need to see everything – I am a woman who used to arrive with an itinerary of places to see and plan the holiday for optimum number of visits.  These days I have learned to relax somewhat. Someone I know who has CFS also says that holidaying in the same place more than once makes for a better holiday for similar reasons because obviously no one wants to sleep through their holiday.  Going to new places, whilst exciting, can be stressful which is not good for CFS and is another reason why research is essential.

So back to Hexham.  We arrived mid morning (another change), parked close to where we wanted to visit (using energy walking long distances on a bad day before arriving at the start of the activity is not clever), had a cup of tea in a nearby cafe (I have learned that it is not essential for me to eat cake at every stopping point and HWIOO shouldn’t have too much refined sugar in any event – better something that releases energy slowly) and then off we toddled.  We’ve learned not to over do things – even if HWIOO seems fine its best to only do things for an hour and then move on to something else. We’ve learned to come back another day if need be. It’s part of the pacing.  It took us a while to realise that even if he seems okay not to overdo it and that photographing two different places does not count as two different activities. I should also add that it’s our second outing to Hexham this week.  We came earlier in the week to the market.  It’s not that I don’t still consult leaflets and websites – now I just have to make sure there’s space rather than cramming everything in.

We’re learning.  Slowly.  But we are learning. HWIOO is making progress.  What HWIOO thinks of my driving I couldn’t say because he’s now sufficiently awake not to voice his thoughts out loud! He is also interested in stuff again – at the onset one of the hardest things to cope with was his depression and general uninterestedness – which I do sort of understand.  If I felt like I hadn’t slept forever I’m fairly sure I wouldn’t be interested in much either. So one way and another its a bit of a red letter day – HWIOO is interested in things again.  He’s started doing some sketching and is making suggestions of places he’d like to go. Oh yes – the sun’s shining as well.

Five minutes rest…

DSC_0001One of the joys of cfs is the desire to sleep for twenty-fours hours at a stretch but on occasion to have only a couple of hours kip even though you might be absolutely exhausted.  It doesn’t make much odds because HWIOO always feels as though he’s only had only a couple of hours sleep.  It’s on account of the non-restorative nature of the sleep patterns that go with cfs.

 

On this particular occasion HWIOO knew part of the cause of his sleeplessness and stress. His Mam was admitted to hospital just after I’d killed off, or rather someone on Edward IV’s orders, killed off Henry VI on Wednesday afternoon. It turned out that she’d got a pulmonary embolism. It didn’t make for a restful weekend for anyone. By the time we arrived at the hospital having haired up the M6 rather than taking a gentle day of scenic dawdling she’d been diagnosed and treatment was well under way much to our relief and to hers.

“I haven’t had a wink of sleep,” she announced the following morning when we arrived. Then looking at HWIOO, “And never tell me you haven’t combed your hair?”

By yesterday evening more tests had been done, x-rays taken, district nurses arranged, daft questions about how old she was answered (“I’m not silly you know!” and “I’m more than capable of getting dressed. What do you take me for?”) and she’d been discharged. We finally got her home, made a hot water bottle up to go in her bed and a cup of tea – to drink rather than warm her bed. “EE,” she said to me, “You do look tired.”

 

She said the same again today after we’d filled her fridge, purchased a new bedside light and I’d done the laundry. A district nurse had also paid a visit and we’d had a discussion about meals on wheels in the short term. Now, let me assure you that I had a good night’s sleep and by the time she effectively told me that I wasn’t looking my best HWIOO was pale and wan …so what that makes me I don’t know.

What I do know is that at the end of every hour HWIOO should have five to ten minutes quiet time in order to avoid boom and bust levels of tiredness.  It’s not that easy when you’re driving up the M6 to pull over for forty winks, nor is it entirely possible in a busy town environment even if you do stop for a nice cup of tea and slice of cake  – I know we should be watching the carbs and refined sugars.   So pacing hasn’t gone too well this weekend but on the plus side Mam is already feeling a bit better and HWIOO’s apparently looking better than me.