Archives: weight

I figured I’ve taken enough time off fitness and exercise since my admission with CMV, so I’m back on the treadmill and all the other torture devices at the gym in a bid to make sure that all the weight I’m currently putting on goes on in the right ways, not just around my stomach and face as seems to be the case at the moment.

I surprised myself at how little of my aerobic capacity I had actually lost, I did a lot better on the bike and rower than I thought I was going to and then fitted in a really good upper-body resistance workout, which I’ll be aiming to do twice a week and also a twice-weekly lower-body work out on the day after the uppers. That’ll be Monday, Tuesday, Thursday and Friday so I have 2 days rest between weights sessions for specific areas and then the weekend off.

I actually really enjoyed the session today and I hope that I’ll quickly pick up the gym-addiction that I had started to develop before my incarceration.

I also did a second Untouched photo-shoot with a friend from the Theatre today, which went really well – he’s very photogenic and we came away with some good shots and some fun ones, too. I’m really liking the look of the natural light and the challenge of getting the shot I need right there and then. I’m also getting more and more used to the intricate settings of my camera – learning how to use things I’ve always had on automatic before, but which now enable me to better control the image, which is vital when I can’t play with it after the fact.

Also chatted to J, the model, about setting up some Theatre/Film projects in the not-too-distant future: he’s like me, looking to occupy himself and to experiment with things in a small environment, but he’s on the acting side and I’m on the behind-the-camera side, which is quite a useful combination. I also think he may be as driven as I am, which will definitely help us spur ourselves along.

This afternoon I met with two of the old MK Youth Theatre who have set up their own project called In Vitro for their own production company, Thrust Theatre Company, which I’m incredibly impressed with. They’re very on-the-ball when it comes to the money side of things, having worked out a completely balanced budget and ways to raise the money quickly and easily. Budgeting is one of the hardest things to learn and get right when you don’t know a lot about production in theatre, so I’m really pleased that they’ve paid it so much attention and not just gone in blind with the hope they can put on a play somewhere.

The play itself, written by one of them and to be directed by the other, is also very good. It’s very “issue based”, but that’s no bad thing for a young people’s theatre group aiming at a certain market, and they have things to say on the issues which need to be listened to by some of the adult population in this country.

They’ve asked me to be involved, which I’d very much like to be – I’ll be going along to most of the rehearsals and being a sounding-board for their ideas and helping them through the process in any way they need, sort of like a mentor, I guess, which is a little scary as I’m sure I’m not old enough to be a mentor to anyone.

Still, it’s another project, another little bit of variety in my life and it’s something else to be interested in and excited about. Can’t wait.

Up far too early this morning to get off to Harefield for my first trip there in a month. Slipped into clinic still dripping from the torrent of water being unleashed from the heavens in the short walk between the car park and the main building, to be greeted by a very quiet scene after an apparently large number of cancellations. All the better for me, though, because the fewer people in clinic the earlier I get away.

Went through all the usual rigmarole and emerged the other side pretty much unscathed – weight’s up a kilo, SATs looking pretty stable, temperature good, lung function moving up smoothly.

K had the day off work, so took it upon herself to take us both shopping in Watford thanks to our 3-hour hiatus afford by the usual clinic practices of waiting for results before seeing the docs. Somehow, we managed to walk the entire length and breadth of the Harlequin Centre in the middle of Watford (albeit mostly looking for food) and come away without spending any money whatsoever and a brand new Blackberry Curve for me. I was impressed.

Proceeded to return to H-base and got into see the great MC pretty snappily. He was perfectly happy with my progress, which was something of a relief as last time I’d seen him he was mildly concerned about my slight plateau in lung-function and indicated that if it didn’t improve I’d have to go back in for another Bronch et al. My issue was I didn’t know how much he wanted it to have improved by in order to skip that part of the plan. Turns out, it just needed to be going steadily the right way, which indeed it was. More than that, some of the more obscure numbers (rather than the simple FEV1/FVC numbers we are given) had apprently jumped further than he’d have looked for. So win-win really.

Also managed to catch up with Emily briefly after we missed each other in the morning thanks to her having a bit of an “off” moment. Really weirdly, having not seen each other for months and months and months (since I was in hospital after my initial op), we’re now down to see each other twice in a week as we have a Trustees meeting for Live Life Then Give Life on Friday. Funny how the world works.

Managed to escape Harefield by just after 3, which had us home and dry by 5 after a brief Tesco-and-petrol detour on the way back. After half-an-hour or so of sitting doing nothing, itchy feet took over and we settled on a night out at the flicks to catch The Other Boleyn Girl.

Although on the surface – and in large parts – it’s a very ordinary (if star-studded) costume-drama/book adaptation covering the lives and loves (well, love – Henry VIII) of both Anne and the lesser-known Mary Boleyn, there are moments of brilliance smattered throughout.

It’s testament to the two leading ladies, Natalie Portman as the Queen-to-be-beheaded and Scarlett Johansson as her younger, less fortunate(!) sister, that one still feels fairly hefty pangs of emotion at the denoument that you’re well aware of before the film even starts.

In the hands of a lesser pairing, Anne’s betrayal of her sister and her semi-sadistic schemeing to win the heart of the King and the throne she believes to be her right would be too much for an audience to forgive. And while I can’t say I went the whole hog to total forgiveness, to imbue such an innately unsympathetic character with enough humanity to carry such weight on her death is remarkable. But it’s not solely down to Portman’s work – without Johansson’s pain, anguish and subsequent forgiveness and the enormous risks taken at the end being wrote so large and ingrained so deeply within her performance, the audience wouldn’t be allowed the access to the emotions we’re lead to feel.

It’s not a flawless film, by any means – there’s a few stilted performances and even some of the big guns involved take a while to hit their stride, but it deals deftly with the passage of time and there are some emotional beats within the story that the film nails as perfectly as any movie I’ve seen this year. Worth a look if historical and/or costume dramas are your kind of thing – not one to be immediately dismissed if they’re not.

Back in the olden days of years ago, I distinctly remember plaguing my parents with moans about being made to walk far too far and the whole lark giving me sore feet.  Today, after over an hour wandering the shopping centre in Uxbridge (more on which later), I turned to Mum with an enormous smile on my face to declare, “My feet hurt.”

I’ve not done enough walking to make my feet hurt for pretty much as long as I remember.  There must be a time, three or four years ago, when I’ve been on shopping sprees with K in the days of our simple friendship, which ended with me having sore feet, but it really must be that long ago.

In the four-hour wait between tests and seeing the doc at clinic today, Mum and I decided to head off and explore Uxbridge, which is only a few miles down the road from Harefield. We found our way – surprisingly easily – to the main shopping centre and spent a good two hours browsing around and taking things in.  Unfortunately for my bank account, “taking things in” also included “putting things in bags” and since most shops are reluctant to let you bag things up without paying, my wallet came away a fair bit lighter.  That said, my wardrobe is now a fair bit fatter.  Or will be when I make room amongst K’s stuff for my new additions.

Clinic went really well, with my lung function up, weight up, X-ray clearing up nicely, all other obs stable and doing well.  My CRP was up ever-so-slightly, but we think that may be due to the semi-cold I have been suffering this week; it never fully developed but I’ve had the snuffles on and off since Monday.  The doc gave me 2 weeks of oral Zithro to ward off any nasties that may be lurking, but I think it’s unlikely that anything’s going to come of it – it’s more a protection measure than anything else.

The last few days have been such a joy – doing all sorts of things that I haven’t done for ages and just starting to feel normal again.  Today we finally managed to catch up on Christmas with K’s brother, which has been delayed and delayed after my stays in hospital and a combination of them and us not being well enough for us to meet up (bearing in mind I still have to do my best to avoid anyone with colds or bugs).

It was great to see not only them, but their new house too – a 3-storey affair which I’ve now got the lungs and the legs to enjoy a proper tour of.  Not only that, but discovered my fitness levels are also now up to the Nintendo Wii.  Dangerously addictive, that machine.

I think the most amazing thing about the last few days is being able to do things without thinking.  There’s no moment’s pause between the impulse, need or desire to do things and actually getting up to do them.  For so long I’ve been used to working out all the ramifications of what I’m about to do and how much it’ll tire me out, how much O2 I’ll need to take with me, what I need to save my energy for later in the day and everything else.  Now, if I want to do it all I have to think about is whether I have time to. (And possibly whether I can afford to….).

I honestly can’t believe how much my life has totally turned around and the fact that this is only the beginning fills me with the kind of excitement I haven’t known since I was a child.  It feels like the whole world is opening up to me and all I’ve got to do is reach out and grab it.

I am very much asleep when the alarm goes off this morning and I prize myself out of bed in a slow and careful manner. Drugs duely flowing, I try my hardest to stay awake while they run through, watching some Making of Toy Story DVD as I do.

Once the drugs are done I’m about focused enough to run K into work, but when I get home I take myself straight back to bed for another hour’s kip, which is rudely interrupted 45 mins in (just when it’s about perfect snoozing) by the postman, who can’t let himself in again (to the building, that is – he doesn’t try to break into our flat of a morning).

I decide it’s pointless trying to re-claim my 15 minutes and so head for a bath instead, then check my email quickly before Mum arrives to whisk me over to Oxford for my physio appointment.

My CF team in Oxford have recently reached a deal with the physio department whereby they can cross-pollinate departments – whereas I used to only be able to see chest-specialist physios (who are paid for under the CF-care banner) if I wanted to see any other type of physio, it would have to be a paid-for referral either from my GP (who’s in the wrong PCT) or the chest team (who can’t afford the extra fees). Charging issues ironed out, however, I am free to go and see a muscular-skeletal physio who is part of the Churchill team up the corridor from my usual clinic.

What a difference a specialist makes. My two regular physios sat in on the session too, eager to learn the basics of what they could do to help me (and others) out with my neck/back problems, all of which stem from the extra work my respiratory muscles are having to do to make up for the cruddy condition of my lungs. After half and hour’s poking, prodding and manipulation, I can already feel a difference, and the physio promises if I can get up there every week she’ll find 10 minutes to have another go and keep the main parts mobilized, with the eventual aim that I’ll be able to strengthen the muscles back up to pull more weight without so much strain.

After my neck session, I head down to the treatment centre with my regular physio for a regular chest physio session, at which we also do my L-F, which stands back up at a healthy (relatively) 0.8/1.5, which is good to see. Even more astonishingly, my weight has now hit 56kg on the clinic scales, and that’s without a thick jumper on. I’ve NEVER been this heavy before, and it feels like a real achievement.

Back home I feel terrible because K’s had a bad day at work and only been home half an hour but all I can do when I walk in the door is fold myself into bed and fall asleep. Rested an recovered after an hour or so, I try to make it up with Tea (which is usually a good place to start) and she appears not to harbour any of the kind of grudge I think I would given reversed circumstances. It’s times like these that my “frailties” really bug me – it seems such a small thing to ask to be able just to chill and have a cuddle after a bad day, but when I’m tired, especially from travel, I’m really not in a state to do anything. What makes K so wonderful is the fact that no matter what the situation, she never complains at all.

In the evening, an old school friend who’s recently moved back over from France pops round and we have a giggle-some night of pizza and board games. We discover, much to our disppointment, that Operation really isn’t that difficult if you’re any older than about 10. None of us had played it for years, but he’d had it at home and thought it was in marvelously bad taste to bring it round (which we both readily agreed). Naturally, they let me win, since otherwise it would just have been rude.

Another couple of games of Scene It (of which I won neither, let the record show – for those of you who think I must just walk it every time), and B headed off home. My drugs were due later than normal because of bad planning on my part so K headed to bed while I did my last dose, watching some Sky+’d Simpsons and the start of The American President, which I’d recorded a while ago before surfing the ‘net for a while during my evening nebs.

I eventually make it to bed about 1.30am, where I read Kevin Smith just long enough to make my eyelids heavy then settle down for the night.

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.

I feel like I should be doing a great, big week-long catch up on here, but I don’t seem to have the impetus to go back over the whole of last week and work out what happened or didn’t.  I seem to remember largely feeling pretty knackered, thanks, no doubt, to the IV’s.

The good news is that they really did the trick and we got on top of the infection before it could develop properly.  My CRP at the start of the course was at 89, which had reduced to just 33 after 7 days, which is good going.  The extreme fighting going on is probably the major cause of the tiredness, too, alongside the drug doses.

I also feel like I should be entertaining you all with a blow-by-blow account of my troubles with Sky, but I think I’m so tired of all this malfunctioning technology and maladjusted people on the end of helplines that I can’t even bring myself to muster up a random thread of expletives to describe the situation.

The IV’s finished on Tuesday and I was up at Oxford yesterday for a quick post-IV once-over.  The best news of the 2 weeks (and recent past) is that my weight is now up to a rather impressive 54.4kg – the heaviest I’ve ever been.  I’m hoping that I can keep it on and keep adding to it even as I slowly start to reduce my steroids.   My lung function had improved greatly, too, back up to 0.8/1.3 after dipping down to 0.6/1.1.  It may not sound like much, but when you consider that’s a  25% drop in lung-function,  it goes to show why I may not have been feeling my best.

I have continued, on-and-off, to look at and sporadically work on new projects and a couple of old ones, although clearly a lack of internet access is a bit of a hindrance to most productivity.  Of course, being offline and having nothing else to use my computer for, you’d have expected, I guess, that I would make some significant progress on the screenplay.  Rather impressively, however, that’s not the case at all, and it’s sitting just as untouched today as it was when I lost the internet connection 10 days ago.

Only I could manage to ignore a chance to turn a technological disadvantage into an advantage – looking the mis-guided gift horse in the mouth, as it were.

There’s not much else to add, really – I suppose it’s been a bit of a boring week or so, or certainly that anything interesting that has happened seems far too long-winded for me to dredge back up right now.  I’m still tired.

Ho hum, let’s keep rolling along and see what tomorrow brings.  Sorry for being boring today.

After waking completely breathless, despite still being on my NIV (which is quite hard to be breathless on) and finding myself standing in the bathroom fighting for air and trying to cough and clear my chest at the same time, it became apparent that my sleep/breathing/NIV difficulties were, quite simply, down to a big ol’ infection which I’ve obviously been brewing for a good few days now.

Horrible as it is and horrible as I feel, it’s good to know the causes of all the disruption in my patterns. I went to Oxford yesterday not looking for answers, but knowing that “all” I needed was a swift course of anti-biotics (hopefully the same ones as last time, otherwise things get complicated with sensitivities and allergies) and some extra physio.

Monday night was the worst night I’ve had in quite a while – waking at 1.30am with breathlessness and a large mucus plug on my right side and the complimentary headache which comes with it all, I then spent the rest of the night trying to find a comfortable and non-distressing way to sleep, which I managed for short, 20-minute spells on-and-off for the next 5 or 6 hours. Needless to say by the time I got up I was more exhausted than when I went to bed.

In Oxford I was pretty spectacularly monosyllabic with my team – which curiously meant I think they knew exactly what was going on; they know me pretty much inside out now. I felt really sorry for them, though, because I was so exhausted and feeling so sorry for myself that I really wasn’t much cop as a human being yesterday – offering hardly anything beyond the necessary replies to medical enquiries.

Still, I escaped the dreaded thought of ending up on the ward (which would just about have finished me off, I think) and came home with my first few doses of IV’s to draw up and the promise of my full delivery arriving some time later today.

The only minor hitch of non-planned IV starting is that I didn’t have time to get a preparation dose of steroids down me, which means I’m in for a couple of days of joint and muscle pain as my body reacts to the IV Meropenem before the oral pred [prednisolone, steroid] kicks in properly. I’ve also now got a nice collection of ulcers on my tongue in protest at the toxins being shoved into my blood stream. Can’t blame my body really, can you? I think I’d protest, too.

Reacting to IV’s is pretty much a common-or-garden response for me and is weirdly reassuring, because if my body is feeling it then you can bet that the bugs are, too. It may take a little longer to kill them off, but I know things will turn around soon. It means having to put up with a few days of tiredness (which was there anyway) and soreness, but at least now there’s the knowledge that things will start to improve by the weekend, rather than merely a looming sense of something not being right.

I’m off to do today’s first session of physio, then to take myself back to bed to sleep off my morning dose, in time to get up and repeat the dose and do another physio session. I do love being on IV’s…

NOTE: For the stats-lovers amongst you, my Lung Function yesterday was 0.6/1.1 (that’s roughly 15/20% according to this site), my Sats were 90% – not very impressive. My weight, however, was a massive 53kgs (fully clothed), so I guess that’s my silver lining.