Archives: Exercise

I haven’t been this excited about random developments for ages. I don’t think I’ve actually EVER been this excited about developments relating to fitness-type stuff. But I’ve just climbed off the shiny new exercise bike sat not 3 feet from this screen and I feel fantastic – this biking lark seems like it might just be the key to breaking the back of this fitness-malarky.

It’s such a bizarre feeling to sit on the bike and be doing real, proper exercise but not to feel completely breathless and deflated by the whole thing – to find a type of fitness which is enjoyable and beneficial without being a real battle of will power to push through the pain/breathlessness barrier.

It appears that the slower slope of desaturisation that I was talking about yesterday is much more significant than I’d first thought and that I can actually go a lot longer on the bike than I’d hoped without gasping for air or feeling like I’m going to keel off it. Rather, I can actually get to a stage where I can really feel the muscles in my legs being worked hard and doing some stretching and improving of their own.

It’s indescribable to feel that I’ve found something which can make the “working” parts of my body feel included in the day-to-day running of life – like their being paid at least a cursory bit of attention rather than being glossed over in the fight to keep the lungs ticking over.

I keep having all sorts of qualifiers about the relation of current treatment/steroids etc to the improvement in my chest and exercise tolerance and everything else swirling around my head at the moment, but right now I feel so good, so happy, that I don’t want to sit here and qualify things.

It’s not often these days that I get a chance to just sit and be excited about something going well. And I know that “not-so-good” may be just around the corner – as it is for all of us – so I’m blowed if I’m going to sit here and not let myself enjoy this feeling for tonight.

I’ve found something I can do physically that doesn’t make me 2nd best to a 3-year-old child and much as you may laugh, that’s a really, really big thing for me. Tonight, even if it’s “for one night only”, I’m enjoying it.

Big smiles and hugs to all!

Up to Oxford today for my mid-IV once-over, during which all signs were pointing to “pretty good”.  “Good” is obviously a relative term, but compared to last week, where I was perched on the verge of a bit of a down-turn, things are doing pretty well.

Lung function is up to 0.75/1.5 from 0.7/1.2, which is a goodly leap (18%/30% from 17%/24%) in the space of a week, my sats are holding steady around the 90% mark on 2l O2 per minute and my exercise tolerance is improving.

Yesterday we took delivery of a brand new exercise bike from the lovely Fitness for Hire, a company who loan out exercise equipment so you can see whether or not you’re likely to get into the habit of using it without throwing away a whole heap of dough on something that’s just going to sit and gather dust.  We’ve loaned it for 4 weeks for starters and if it doesn’t get used, it’ll just go back, no hassle.

The theory is, according to the Physios-Who-Know, that working on a bike is easier on the chest/lungs than step-ups with Goliath as the tendency is not to desaturate so quickly.  I don’t know why that is, or exactly how the process works, but what it basically means is that by using the bike I will be able to do more exercise without getting so out of breath.  This, in turn, should mean that I can make my muscles do more work, rather than my lungs stopping me before my muscles really get a work out, and the muscular improvment will serve to improve the flow and use of oxygen around the body, meaning that I require less oxygen to do everyday tasks, which means I get less breathless while doing them.

Theory is all well and good, but we know how my body likes to throw googlies (or curveballs, if you’re more comfortable with the American vernacular), so having the option to bail out on the purchase of a hefty piece of equipment is a good option for right now.

I have to say, having had a wee spin on a bike at Oxford today, it certainly looks promising as a less intense form of exercise.  Obviously, there are different levels of resistance and speed settings and a whole host of other options, but the great thing about it is that the very basic starting point is easily managable, giving a lot more leeway in terms of turning things up or down as my chest may dictate from day-to-day.  The trouble with step-ups is that they are very set-in-stone – it’s a set distance, with a set weight (my body-weight), over a set time.  The bike, on the other hand, has myriad ways of making things easier or harder as my body goes through it’s yo-yo routine.

Once again – and as usual – we’ll wait and see what comes of it.  I don’t want to get too over-excited at something that’s just going to fall by the wayside again, but the promise is there for something with potential.

Sadly no progress on the script today, because the trip to Oxford has pretty much sucked the energy out of me, so it’s probably a night in front of the TV tonight, maybe catching a flick or something.  But it’s been a positive day, so I’m not going to moan about a little bit of tiredness at the end of it.

Like all good sequels, Headaches have come back with a vengeance, making sure to be bigger and better than before.

Having thought myself a chronic hypochondriac before the weekend, three straight mornings of horrible, horrible headaches have convinced me that it’s not just a little something to make me paranoid, but that there’s definitely something up.

Unfortunately, I have no idea what it is.

The headaches would appear to be CO2 related (as with last time), which would suggest that Neve isn’t doing enough work, or isn’t working efficiently enough to clear it off while I sleep. However, the headaches are also coinciding with an uncomfortable amount of neck and back pain, too, which may mean that it’s not anything to do with my O2/CO2/Neve settings at all.

I spoke to my physio at Oxford today, who suggested adjusting my NIV settings for the night and seeing if it made a difference (it didn’t last night, but she recommended trying it again tonight) and then said she’d arrange for the docs to see me tomorrow. I was supposed to be joining her for an exercise sesh tomorrow, but that feels a little way off at the moment, so we figured we should use the appointment to get myself checked over by the team rather than wait for my clinic appointment on Thursday – if I am coming down with something, we need to make sure we nip it in the bud ASAP.

It’s a little demoralising looking at the prospect of another 2 weeks of IV’s less than 3 weeks after I finished the last course, but I’ve got so little room to play with now that it’s no longer an option to just “wait and see how things pan out”.

The worst part of it at the moment, really, is not knowing what they are or what’s causing them. If I was sure of their origin, it’d be easier to gear myself up for a fight to get rid of them, but until I know where they come from, it’s just a case of sticking them out. They are usually gone by the early afternoon and then I don’t feel too bad.

Whatever is causing them, it’s a pretty safe bet that it’s all been kicked off by the seeds of an infection knocking around down there, so antibiotics would appear inevitable.  We can only hope that something obvious presents itself in the next 24 hours or that once the antibiotics take care of the bugs, everything settles back down to normal.  Fingers crossed, anyway.

The good news is my tiredness seems to have lifted, mostly. The bad news is that I woke up this morning with a roaring headache and couldn’t shake it for most of the day.

I’ve noticed that being chronically ill gives you a bizarre form of semi-hypochondria: every little tweak of a muscle, snuffle or sneeze suddenly seems laden with horrible possibilities.

This morning’s headache, for example. More likely than not, it was a simple, common or garden headache of the type we all wake up with from time to time. To my slightly addled brain, however, it could be a recurrence of the old CO2 headaches I used to get before I started on my NIV overnight. The issue there being that since I’m not actually using overnight NIV, it would imply that my lungs have deteriorated further and the NIV isn’t working hard enough to clear the CO2 from my lungs while I sleep.

The chances of this being the case – considering there are no obvious other signs of major chest complaint (no significant drop in lung-function, no increase in volume of sputum etc) – are pretty low, but it doesn’t stop my brain working the scenarios over in my head almost constantly.

Most importantly, I guess, is the fact that I can see my slightly skewed look at things and take a bit of a step back from it. I’m not fretting my head off about it, but it is still playing on my mind a little. I’m sure I’ll sleep soundly tonight and wake up tomorrow with no problems at all, and I’ll feel foolish for even letting the thought cross my mind. But when you’re sitting on such unstable ground, you get a little hyper-sensitive.

I shall be trying to get back into my exercise regime again tomorrow, having missed almost a week now through tiredness. I shall also be attempting to get back into the screenplay again, having failed to match yesterday’s 10 pages with any pages at all today. I’m a bit hit-and-miss, me.

On the plus side for today, K’s little 2 year-old niece and 15-month old nephew (I’m sure I’ll have got that wrong now, I bet I get shot for it, too) came over for a visit today, which was just gorgeous as they were both in such fantastic moods. Even though I was feel really rough with my head banging and pretty short of breath, I managed to have a lot of fun. Luckily, I could play mostly sat down on the sofa or the floor and not move around much (I left policing duties to K and their Mum, who would race after the little one as he crawled off at top speed to reek havoc in other rooms).

I spent most of the time being either a fairy or a ballerina. I’m not quite sure what that suggests our niece thinks about me, but I’d like to think it means she understands that I’ve got a wonderful imagination, just like her.

Even when you’re feeling tired and rough, there’s something truly infectious about children’s laughter – it reminded me what I used to love about working with the Youth Theatre. Having a child’s simple outlook on life is so rare and so delightful, to focus 100% on what’s going on right now with no thought for the history or what comes next.

With two children as gorgeous and laughter as infectious as theirs, it’s impossible to say I’ve had a bad day.

“We do not inherit the earth from our parents, we borrow it from our children.”
Native American Proverb

Sunday may have been a great day, but I’m certainly paying for it now.  Three days on and I’m still shattered and my chest is tremendously upset about something, though quite what it’s problem is I don’t know.

I feel tight, I feel tired and I feel pretty unhappily breathless, too – a great combination for poor K as she has to put up with a very grumpy Oli (for a third day in a row, too!).

I don’t know if it’s all Sunday-related or if part of it is the curse of the project-mention in the blog, but something is conspiring to give me a really rough ride this week and I don’t like it.

I was supposed to go to Oxford today for an exercise sesh with the physio, but there is no way my body is going to put up with 2 1/2 hours in a car and half-an-hour’s worth of treadmills and step-ups.

As if to rub the proverbial salt in, I’ve also not been sleeping at night now, either, which just makes the day-times seem worse.   It’s all one-thing-on-top-of-another and I know it’ll sort itself out soon enough if I just keep resting up and keep my calorie count high, but it’s a real b*stard to go through right now.

I suppose the lows are always harder to deal with off the back of big highs, too, since you’ve had that much further to fall, but I’m doing my damnedest not to let it get me down.  The trouble is, I just don’t have the energy to be up.

It’s a funny thing, that.  Being “down” takes no energy at all – it’s almost like a default position, whereas being “up” requires an investment of energy, even if it’s just a small amount.  I think that’s skewed, someone should write and complain.

Still, there’s nothing better than writing a post on SmileThroughIt to remind me that I’m supposed to be SmilingThroughIt, so I’m off to search YouTube for videos of stupid people falling off logs and bumping their face.

WAY too hot for training today, so why on earth did it turn out to be the first session I’ve done since… Tuesday, I think? Maybe it’s guilt.

Anyway, got through 8 mins of steps and then did half my strengthening – 3×8 curls and 3×8 shoulder raises. I think doing all of the strengthening in one go with the step-ups is too much – I noticed a distinct lack of energy the next day, which I’m taking to be residual tiredness – so I’ve decided to separate them into upper- and lower-body exercises and do them on alternate days.

SIDE NOTE: Weight is now up to 52.4kg – I think this is the heaviest I’ve ever been, or at least close to it.  Hope it keeps going on.

Strangely for someone with the aerobic capacity of a small field mouse, I find reading sports books particularly fascinating and inspiring.

I don’t know if it’s the thought of hopefully one day being able to push myself physically in the ways I read of others doing, or if it’s precisely because I have no idea what it feels like to push you body to its limits in those ways.

One of my favourite books is Matthew Pinsent’s Lifetime in a Race, which is not only really well written and engaging but also brilliantly descriptive of the punishment Olympic sportsmen and women put their bodies through.  Similarly, I enjoyed Paula Radcliffe’s book and others too.

Recently, as you may have read here, I picked up Lance Armstrong’s book It’s Not About the Bike, the story of his struggle with cancer and eventual comeback and first ever Tour de France victory, a feat he would go on to repeat a further, record-breaking 6 times.  It’s a fabulous book, just as fascinating and inspiring as I’d heard it was.

What intrigued me about it was how interesting it was from the perspective of someone who knows nothing about and has no interest in cycling as a sport.  Despite numerous recommendations I had always sort of ignored the book before on the basis that, not being a follower of the sport, the book wouldn’t interest me.  It turns out to be much more than a cycling book, though, and it tells stories with a rare perspective and wonderful fighting spirit that I think many people with critical illnesses often share.

More than that, though, it actually got me interested in cycling.  So much so that in the spirit of trying to find more books to inspire me on my mini-quest for mini-fitness I picked up a copy of a book called Inside the Postal Bus by a guy called Michael Barry.

There were a few reasons I chose this out of all the books lining the sports section of Borders when I was browsing.  The main one, though, was the promise from the blurb of the book to get an insight into how a cycling team operates within the Tour de France itself – how the other riders in a team work to support the lead rider in his bid to victory.

The book covers the 2004 racing season from Barry’s perspective as a rider on the same team as Lance Armstrong – the US Postal Racing Team, named for their sponsors, the US Postal Service – riding in the races with him and on their “tour bus” between events and stages, the titular Postal Bus.

The blurb itself proclaims: “Journey across Europe with US Postal – from the first workouts in the winter to the intense intra-squad competition to make the Tour de France team selection.”  It tells us Barry had “The hardest job in sports: riding for Lance Armstrong in pursuit of a Tour de France victory.”

What a brilliant idea for a book I thought – cycling from the perspective of a regular athlete, rather than from the point of view of something of a super-human success story.  I was really interested to find out what it was like for a semi-mortal – and the rest of a winning team – to go through the rigours of such a massive event.

There is, however, one big flaw in the book, which I’ve just uncovered.

Ignoring the fact that the “intense intra-squad competition” promised in the blurb actually amounts to about 3 paragraphs telling us that since there are 20 riders in the squad, not all of them will make the 9-man Tour team – a pretty big fact to ignore, I know, but wait for it – and getting past the fact that it is actually quite sketchily written, with paragraphs that jump all over the place and often fail to hold a cohesive thread of thought (not something I can really complain about given the nature of my ramblings on here), there is one pretty major, single issue that stands out above all the rest.

Michael Barry didn’t ride in the 2004 Tour de France.

He wasn’t injured, he didn’t crash, he wasn’t taken ill.  He didn’t make the team.

The publishers – in their infinite wisdom – commissioned a book (in 2005, no less), one third of which concerns the 2004 Tour de France and Lance Armstrong’s record-breaking 6th victory, from a rider who spent the 3 weeks of the Tour watching it from his home in Spain in his boxer shorts.

He even say it himself – he watched in his underwear, on the telly.

Just how much insight did they expect him to be able to give to the goings on in the tour party?  Honestly, it’s not hard.  I know nothing about cycling save for what I’ve read in Lance’s two books and the first third of this one, but I could tell you just as much about the 2004 Tour if you gave me the broadcast tapes and let me catch up.

His analysis of the race as it unfolds amounts to, “They looked really tired after that stage, which was really long.  I think that the long stage made them really tired.  Actually, I spoke to one of them and they said they were all really tired because the stage had been really long.”

The mind boggles.

So, if you want to read an interesting book about cycling, buy It’s Not About the Bike or Every Second Counts – not only inspirational, but interesting too.  If you want to stop in your tracks halfway through a book and stare at the wall thinking, “What the….?”, go for Inside the Postal Bus, by Michael Barry.  Who wasn’t.

Another 8 mins of step-ups (on 4l/min o2) , plus my [almost] full strengthening program (on regular 2l/min o2). To witt:

3x 8 quad lifts
3x 8 bicep curls
3x 8 wrist flexes
3x 8 shoulder shrugs
3x 8 front hip lifts
2x 8 side hips raises (should have been 3)
2x 8 rear hip lifts (ditto)
3x 8 arm raises
3x 8 sit-to-stand

Much easier than yesterday, which I think may be in large part due to doing them in the afternoon after my DNase neb and physio session, which is always a better physio session than the morning one – probably largely due to the DNase beforehand.

Feel tired out but good, not exhausted.  Yet.

Just as a keep-you-updated, keep-myself-in-check type thing, I figured I’d start charting my daily progress (if it’s going to be daily…).

Today’s “workout” was really hard, much harder than it has been previously.  Don’t know if it was time of day (late morning) or not as good a physio session before hand or what, but it was a lot more of a struggle.

Still, I did 8 minutes of step-ups on 4l/min of O2, in reps of 1 minute steps with 30 secs rest in between.  I completed 4 reps (4 mins stepping with 3 30sec breaks) and had to make the 4th break 1 min rather than 30 secs, followed by another 4 reps with regular breaks.

I had Rocky on in the background, but it didn’t help.

For future reference: Step-ups: 1 rep (or 1 min) = 1 min steps + 30 secs rest.

After almost a full 24 hours tucked away in bed sleeping off the after-effects of our 3am bedtime from Tuesday, I was back up to Oxford today to finish off my IV’s and see how the exercise program appears to be working.

First of all, though, I had the morning to spend with one of my best friends who I’ve not seen for an age, who came around with her shears to attack my unruly barnet, which she did with considerable gusto, even tipping a small vat of bleach onto my head for 45 minutes.

To be honest I’m not entirely sure I like the result, but the thing with Lea’s haircuts is that in all the time she’s been doing my hair (which is about 6 years and counting now), I’ve never actually liked the cut or colour for the first 24 hours. I think it’s because it’s nearly always pretty drastic, so I’m not used to the sight that greets me in the mirror. But without fail a couple of days after I’ve had it done, I always LOVE it. I’m odd like that, but there you go.

We’ve kind of got used to each other now – she’ll finish and stand back excited and happy, cooing and purring over her handiwork and I’ll stare at myself in the mirror and um and aahhh over it for a while and generally be unenthusiastic. Then in a couple of days’ time I’ll do my hair in the morning and be straight on the phone to her to tell her how much I love it. Legend, she is.

What’s more, she’s one of those fantastic friends who you can go for months without seeing but pick up from exactly where you left off as soon as you’re back together again. We had such a great time this morning, it really helped lift any of the remaining fug from Tuesday night.

Oxford was good again. With the steroids being tailed off – reduced by a third in the last week, and with a noticeable energy reduction – I was expecting to see a pretty big difference in the workout session with Lou the physio today. So I was pleasantly surprised again (and pleasantly surprised to be pleasantly surprised again) to get through an 8-minute step-up workout with her and see my sats stay in the optimal/safe 90% range during exercise and rising back to 93/94% at rest afterwards.

The next couple of weeks is going to be the real test of the plan’s long-term prospects as I drop the IV’s and begin to slowly ween myself off of the steroids. If I can keep my appetite up and give myself enough fuel to run through the programs I’ve got, then potentially I can keep my chest feeling stronger and clearer for longer and avoid the usual post-IV dip.

The motivation is still there, even if the energy levels are more variable. It’s just a case of trying to find the right moment in each day to get the most out of my chest without leaving me exhausted for the rest of the day. It’s another of those slow learning processes, but at least it’s got very positive benefits to aim for and a real sense of achievement to top it off if it works.

The end-of-IV checks included looking at my lung function which has stayed at a fairly stable 0.8/1.4, which is good if unremarkable. Mind you, I’ve not been over 0.8 for more than a year now, I think, so it’s probably safe to say that’s pretty much my ceiling now, so as long as I’m staying there and not dropping, we know things are going OK.

Although the exercise program is unlikely to improve my base lung function, the hope is that it will help out with the oxygen flow round my body and help reduce the breathlessness. We’ll have to wait and see if the theory holds true, but for now, it’s time to plough onwards.

PS – thank you all for your wonderful comments and messages of support over the last couple of days, they really do make a massive difference in picking myself up and keeping on. And K wanted me to add big thanks to everyone for her birthday wishes to! So you all rock, muchly! xx