Archives: Difficulties

We’re 5 days out from Laughter for Life and things are gathering pace with alarming speed.  It feels constantly like there’s a thousand things to do for us to be ready on time, but actually, when I sit and analyse where we stand, there’s really very little to be done.

It’s reassuring (in a sense) to think that the night could actually go ahead and probably run perfectly smoothly if we all completely stopped working now and did nothing until Sunday.  Of course, that’s not going to happen – we’re all far too commited to making this night the best it can possibly be – but I think it may serve well to remind ourselves as we fret over the final details that actually the leg-work is behind us and we’re now adding the icing/gravy/hair gel/anaolgy of choice to an already fab night.

Today was press release day and with the help of our awesome PR-guru Paula, who’s done a whole heap of work for Live Life Then Give Life in the past, we’ve mailed out press releases to local and national media.  I think the naitonal ones are due out tomorrow morning, but all my local ones have gone today, so I’m hoping that tomorrow and Thursday should be full of phone calls and sparked media interest.  We’ll have to wait and see.

Also today, we’ve made great strides in gathering some great lots for our auction which is taking place in the VIP party afterwards, which include some signed Might Boosh stuff, a raft of Theatre tickets with accompanying bonus features which are still being pulled together through various wheeler-dealings around the place and some great pamper packs and treatment sessions and some awesome original artwork.

Emma is really struggling with a new course of IV’s, which is incredibly rubbish timing for her, but goes to prove that CF pays no heed to any other masters and will wantonly and brazenly do whatever it can to intrude on life.  But, she is showing the classic resiliance of all PWCF and not letting the little bugger get in the way.  “Chest infection? Pah!  I laugh in your face! You shan’t stop me!”

Patrick, from Bill Bailey’s management agency is being a total legend in helping us get things squared away and sorting last minute bits and pieces with us and Steve from Tin Racer, who do all the artwork and design for CF Talk is ploughing through preparing the programme for the evening for us.

It’s amazing how helpful and kind people have been in coming together to make this event happen.  People have given us things, offered extras, consitantly gone the extra mile and done whatever they can to help us along, with goods, services, money or support.

It’s amazing to see just how much goodwill there is in the world and a sobering thought when you consider the cynical times we live in.  People seem to expect so little of other people and often assume the worst.  What I’ve found throughout the last six weeks or so that I’ve been fully involved with this as a project is that people are far more ready to support and help people than I would ever have expected.

I’ve always prided myself on thinking the best of people and often wondered if I’m being just a little naive in my belief in the goodness of the human race.  But this project has taught me to stick to my guns even when the world around me is presenting a universally cynical view of itself through the press and TV – people are fantastic and if you give them a chance, they will bend over backwards to help you out.

There is no way this night would have been possible without the MASSIVE assistance of a huge number of people and each and every one has made contributions that could have stopped the whole show in its tracks.

This is more than just a gig: it’s a chance to tell a whole new crowd of people about the importance of organ donation.  But more than that, it’s reaffirmed my belief in people and it’s also given me the confidence to believe that if I want to do something, I really can do it.

Five sleeps and counting until the night of the year so far!

Today’s been rubbish.

I woke up fine but by midday I was totally out of energy.  I’ve no idea where it all went, because I’m sure I wasn’t using that much – i was only sitting at my desk trying to work.

All afternoon my brain has been mush.  It’s not listening to what I want it to do and as for focusing on anything vaguely work-like for more than 10 minutes at a time, you can forget it.

My chest feels OK – bit full of rubbish but nothing majorly out of the ordinary.  I’m sleeping OK.  I don’t think I’ve been doing too much.

But something is clearly not right.  I just don’t know what it is.

Man, this is frustrating.

It’s funny to read people’s observations on my posts on here, both in the comments on the site and emails I receive.  A lot of people seem to have had the same thought: that I do too much on my Good days, which in turn leads to the Bad days.

I have to admit that this is something I have thought of before, but I just don’t seem to have taken heed of my own warnings.  I think my family probably think the same thing, but then how often does one really listen to one’s own family when they’re telling us something unpalatable which, to an extent, we already know?

I certainly think that the thought must have occured to my Mum and Dad but they’ve refrained from bringing it up with me because they know it’s a lesson I need to learn for myself and won’t accept being told from outside.  It’s the way my family has always worked, and it’s made me all the stronger for it.  It’s a strong parent who can take a step back and let their kids make “avoidable” mistakes in order to help them learn and grow – and it’s something I’ll always be grateful for.

But having had comments on here now confirming my worst – and most hidden – suspicions about my general appraoch to getting on with things, it really seems to have sunk in.  Well, I say that now, but we’ll have to wait and see where it goes from here.

I feel almost like I’m turning over a new leaf – making a pledge to myself to try to regulate the amount of things that I do so that I can either maintain a constant energy level throughout the week, or else build in sufficient rest periods for the times immediately following major (or minor) exertions.

Yet again, I’m reminded of the value of this blog as so much more than merely a record of what I’m doing with myself from day-to-day.  It’s helped me to learn and grow and stay in touch with the essential elements of making sure I live my life to it’s fullest for however long I’m given.

I have to accept that things aren’t going to be a breeeze and I’m not going to be able to do all the things I want to do.  But I can also promise myself that I will do whatever is necessary to get the most out of the experiences and activities that mean the most to me.

So thanks to everyone who’s emailed, commented and talked me through my highs and lows – you make a big difference to the way things go around here.

Keep smiling, because I am.

I’m thoroughly confused.

I should be used to being confused by my body by now, I really should – nothing should really throw me about it’s day-to-day fits and wobbles and ups and downs. But somehow I just haven’t got used to the unpredicability of it all.

Take yesterday, for instance: after a really rather awful, moody, tired Sunday, I slept averagely well and woke up at 8.30am full of energy and enthusiasm and raring to go. I actually wanted to eat breakfast, which is something almost wholly alien to me, since my appetite doesn’t usually kick in until mid-morning at the earliest, so the extra energy boost was great, too.

I spent all morning ploughing through mountains of work and knocking things off my To Do List left, right and centre. I amazed myself at the speed with whihc I rattled through all the things I wanted to get done and I’d almost achieved everything by midday.

I felt entirely un-guilty about taking some time out in the afternoon to pop over to K’s brother’s to play with the little ones – one of whom has just discovered how amazing it is to be able to propel yourself towards whatever it is you want. I wouldn’t so much call it crawling, just yet, it’s more like commando-crawling as he doesn’t appear to have worked out that using your legs can help, but he’s on the cusp of a major revelation, that’s for sure.

Back home after an hour of fun and games (OK, an hour of sitting on the floor playing with Fifi and her Flowertots – don’t ask me who they are, we were just sticking them to the magnetic board….), I settled in to polish off the rest of the pressing bits and bobs which needed dealing with before close of play, then settled on the sofa to watch some TV and hit the sack.

Now, today, after an identical night’s sleep, with perhaps an extra hour in bed, I have managed to achieve almost nothing. Since getting up this morning I have felt entirely drained of evergy, lacking in any kind of resource to keep my eyes open and my brain switched on.

Compared to yesterday, I’ve got next-to-nothing done, although all the important stuff has actually been dealt with, but I had to go back to bed at lunch time and it’s really only since taking K to college this evening and sitting back at my desk around 6pm that I’ve been able to engage myself to do anything at all.

It’s immensely frustrating because I just don’t know where this energy-drain has come from. I seem to be yo-yo-ing up and down from day to day with little or no reason behind the ups and downs.

I remember saying here previously that I’d be OK with it all if it made sense and was plannable, but it’s impossible to know what each day is going to be like at the moment and I can’t work out whether it’s OK to plan things or if I should just wipe my diary and play each day by ear.

I don’t suppose I can really start doing anything differently, other than, I guess, be strict with myself at stopping when I don’t feel I’ve got the energy and making sure I rest myself when my body says no. But when you’re trying to plan for a major event just 10 days away (how exciting!), it’s frustrating not knowing how much you’re going to be able to do all day.

Still, all moaning aside, I can’t really complain about today because I did get to further explore my media-tart side of my personality with a live phone interview with Peter Allen on Five Live Drive for the BBC this evening.

The wonderful Fi Glover, who’s Radio 4 show Saturday Live I did a few weeks back, passed on my details to the editor of Drive and, sure enough, I got a call at 11am this morning to talk about things and asked if I’d come on the show live this evening at 5.25 – pretty much prime time.

It was a bit of a tough interview because, obivously, I was mostly interested in plugging Laughter for Life and transplantation, but it seemed that they were more interested in the CF angle of things. Which was nice but, you know, not really “news”… Still, I managed to get through all the CF awareness stuff, plus a plug for the gig, plus a load of awareness raising for organ donation AND a mention of the Live Life Then Give Live campaign. Not too bad for 3 minutes air time, I thought. Even if it did involve a little bit of talking over Peter Allen as he tried to interrupt…

So the publicity machine ploughs on and the date of the show gets ever closer. Things get more exciting by the day and I’ll be sure to post updates on here as soon as I get them. hopefully, I’ll have more warning of the other interviews and things I’ll be part of, which will mean I can put heads-up posts on here ahead of time.

I’m in a bad mood: a grump, a fog, a depression, a dip, a lull, a negatively-buoyant, anti-happy smudge of a grey-day melancholy.  And I don’t really know why.

It could be the over-exertion of spending a day on my feet shooting the Youth Theatre video yesterday, where I was less than proficient at keeping my energy levels boosted and trying to stay seated as much as possible so as to conserve as much energy as possible.

It could be because this afternoon I went out to the cinema to see Hot Fuzz (which is great) when I should have been lying in bed forcing my body to recover from yesterday’s runabouts rather than forcing more activity on it.

It could be because I missed my dose of steroids at lunch time and didn’t catch up with them until nearly 6pm this evening, so my system is significantly down on it’s currently beefed-up power supply.

It could be that after going to the cinema, which I shouldn’t have done, following a day of shooting which I didn’t manage well, forgetting my steroids and driving over to Mum and Dad’s and back again just for a bite of dinner and not taking oxygen along for the car journey, I’m just a little bit pooped.

It could be that I’m just tired.

Whatever it is, I’m in a really bad mood.

This is supposed to cheer me up – my blog and blogging on it.  It’s supposed to remind me that when the going gets tough, the tough get going – or at least in my case the tough laugh in the face of the other toughness and tell it to be on it’s merry way because tough isn’t welcome in this part of town and if it doesn’t go away swiftly-and-I-mean-right-now then I’m going to do something really drastic like laughing even harder.

It’s not.

I’m still just feeling pretty grumpy.

So I’m clearly beyond help.  Far beyond the outer reaches of the depths of the far side of the distant part of somewhere that’s really not very close to the vicinity of the place where I am and help’s ability to reach me.

So there’s only one thing for it: I’ve just got to go to bed.  And sleep.

Like all big problems in life that at times seem insurmountable,  I’m confident that this will see me through.

Actually, thinking about it, there’s not many insurmountable problems that are cured by sleeping.  Insomnia, maybe.  But not cancer.  Or AIDS.  Or even HIV, for that matter.  War is rarely solved by sleeping, although I suppose if all the people on both sides were sleeping then they couldn’t be shooting each other, so it’s a kind of solution, but not really practical or workable as peace-plans go.

Murders aren’t solved by sleeping, and dogs aren’t walked by sleeping.  Sleeping does nothing to stop the spread of malicious rumours regarding the alleged illegal exploits of footballers or politicians, nor does it make any headway into the resolution of global warming.

It does, however, stop mindless, idle drivel like this, because when I’m asleep I can’t type.

There are many things on this earth and in this life for which we should all be thanking the Good Lord who watches over us.  And me being asleep and not writing any more of this is one of them.

Good night all.

Have I mentioned in the last week or so how much IV’s annoy me? Methinks once or twice…

Yesterday was a really good day – I didn’t sleep very well, but I re-organised my drug schedule to get me out of bed at 8am instead of 6am, which meant I could get up and start my day immediately, rather than going back to bed after an hour when my drugs were done and sleeping till noon.

It also worked well because it let me take my catch-up sleep (that’s just me trying to avoid the wword “nap” really) straight after lunch, before my afternoon dose, rather than having to wait till after it and then sleeping too late into the afternoon, which in turn appeared to be disrupting my night-time sleep pattern.

Not only did it seem to work pretty well, the new schedule, but it also seemed to give me a lot more energy and get-up-and-go and as a result I had an enormously productive day, leathering through work on the new CF Talk, Laughter for Life and the Activ8 Show, all of which had been somewhat neglected over the previous week.

Having gone to bed tired and ready to sleep after my late dose last night, I was eagerly anticipating a good night’s sleep (which I got – YAY!) and another energy-filled, super-productive day. I was even starting to plan my to-do list for the day as I drifted off.

But high doses of wapping strength drugs will go and do odd things to your system. After a great night’s rest, I woke up not full of the bouncing, work-attacking energy with which I’d gone through Thursday, but with the apparent wakefulness of your average 3-toed Sloth, which saw me lumped on the sofa most of the morning working out how much of the to-do’s could be un-done for the day.

After lunch, I slept, again anticipating a post-snooze pick-up to revamp my day, but again seemed only to wake more tired than I had been when I went to sleep. Worse than that, though, was the fact that my brain saw fit to simply shut down and not operate for the rest of the day until about 9pm this evening.

I’ve thus spent almost all of the day/afternoon in a semi-comatose state on the sofa wondering where on earth all the energy and pizazz I discovered yesterday had gone.

It would appear that I’m back in the old give-and-take world of IV’s and energy which had me so frustrated in the run up to Christmas. As much as I want to be pushing myself forward and keeping ploughing on, I keep having to give in to my body and accept defeat on a day’s work.

If there were just some kind of indicator as to whether tomorrow was going to be better or worse, I think I could cope with it easier – it’s the apparent lottery of energy levels that’s really riling me at the moment.

I suppose I just have to look at it from the point of view that it makes each day more interesting and exciting because I never know what’s going to get thrown at me: perhaps there’ll be something new to spur me on tomorrow, or maybe I’ll be finding new depths of reserves to drag myself through the day. Who knows? Isn’t it fun?!

Today has been, frankly, a pretty rubbish day.

Yet again last night my drugs and brain conspired to keep me awake almost the whole way through the night,  letting me finally drift off for more than an hour just before my 6am alarm call for my morning IV’s, followed by my usually solid sleep-time of 7-11am being interrupted by phone calls, deliveries and other distractions.

So a bad start to a long day as it was, which put me in a less than fabulous mood for the rest of it, which in turn annoyed me because my cousin Katie was down from Brum to catch a show at the Theatre and we were planning on having a bit of a day of it.

As it was, I could hardly muster the energy to entertain, although we did have a good chat and a cracking Game of Life with K (which I won, natch…).  But I still had to collapse into bed mid-afternoon to catch up on sleeps.

My body was simply not keen to play ball today though and stubbornly refused to wake itself up from my nap, which dragged me further into struggles for general awake/happiness.

The thought of getting through an hour and a half’s work session was, I have to admit, less than appealing, so it came as some relief when Rheya phoned to pass a message from Suze to say that since most of my group weren’t in for tonight, it made more sense for me to stay at home, so I delivered Katie to the Theatre and sorted her tickets before heading straight back home.

No sooner was I back than my chest started playing silly buggers again and givingg me all sorts of grief – mostly muscle-related pain, I think, from where I’ve been sleeping and holding myself a little strangely due to the IV access in my shoulder.

Being both exhausted and in pain is never a great modd-enhancing combo, so I was getting spectacularly downbeat and po-faced when I discovered perhaps the funniest thing I’ve seen on TV in a long time.

Curled up in bed with K, we flicked onto Never Mind The Buzzcocks and I laughed so hard I’m sure the pain from my chest has migrated to my stomach.

I’ve really no idea who Donny Tourettes is – or even if I’ve got his name right – but he made for some of the most unintentionally hilarious TV viewing since You’ve Been Framed made people laugh.

Watching Bill Bailey and Simon Amstell (both newly minted personal heroes of mine) ripping into Donny’s bizarre attempts at either rebellion or humour, coupled with his own self-image of sex-god punk rockstar out to diss the world had me doubled over in laughter and nearly falling off the bed.

It goes to prove that no matter how lousy things get, I was right all along when I said that the only way to deal with the tough times is to smile through it.

God bless you, Buzzcocks.

IV’s are great because a) they keep you alive longer than you otherwise would manage and b) …… well, I think (a)’s pretty convincing so I guess it’ll have to do.

On the other hand, the list of why IV’s suck is much, much longer.

This time, top of my “Why I loathe IV’s” list is the unfortunate and highly rubbish side-effects that my Meropenem (drug) is having on me.  Now, I have a bit of a history with Mero (as with many of the drugs I take), mostly that it gives me hugely painful joints and muscles, but we have discovered that a short course of steroids to coincide with the Mero seems to do the trick in aleviating the pains.

Not so much this time, though.  Although I am doing better than I have been, it’s still giving me the weirdest and most annoying pain in my right hand.  It’s not even that it’s particularly excruciating, it’s just almost permenantly there and refuses to go away.  But since it’s only in my right hand, it seems a bit silly to moan about it.

I did check in with my friendly family on-call doc (my all-knowing Aunt) who looked it up on the web and assured me that it wasn’t doing me any harm, but probably lots of good and to persevere with it, which I have.

The hand aside, I’m also suffering the simple and commonly-acknowledged IV slowdown – the high doses of super-powerful antibiotics being a good stimulant of sleep and restfulness.  The only issue being my body seems to have set itself on the weirdest clock at the moment, not letting me sleep till the early hours of the morning, then letting me be deceived into thinking I’m wide awake in the middle of the day until it hijacks me and cuts off all brain and motor-function mid-afternoon and forces more sleep on me.

It’s weird this IV lark, and you’d have thought I’d have got used to it by now, after regular courses 5-6 times a year for the past goodness knows how long – but I still seem to be taken by surprise when it knocks me for six the next time I’m on them.

Still, I’m booked in for a week of rest and extra-physio (although I’m not sure the two necessarily go together…) in the Churchill next week, so hopefully I’ll have a storming second week and come out of it in tip-top fighting form for the big Laughter for Life publicity push and the run up to the show.

Not to mention getting the new issue of CF Talk off to the designers and shooting 2 days of video for the Activ8 Youth Theatre show.

IV’s may suck, but in the long run they let you do the things you want.

Today has been a really hard day.  Despite being exhausted by the day’s activities yesterday – heading down to London and back, with an hour and a half’s meeting in the middle – I slept terribly, hardly managing longer than an hour asleep at a time, and waking up this morning feeling totally drained.

I knew that the meeting was likely to take a chunk out of me, and need me with a need to recouperate, but I wasn’t expecting to be bed-bound for three-quarters of the day.

Even now, sitting in the study writing this I know I’m not right – my brain isn’t really turned on and my chest is protesting.  I need to do some physio, which may help the chest, but I don’t know what I’m going to do about my brain.  I’m just waiting for my neb to work before getting some physio done.

I’m supposed to be going in to work tonight and I desperately don’t want to miss another week, not with the show starting to loom and only 2 weeks till half term.  I’m having all sorts of horrible thoughts of missing out on the whole term again and not being able to do anything for the show, not to mention landing Suze in the proverbial by missing sessions at such short notice that she doesn’t have time to geet cover or re-plan.

It’s just not fun – my body is rebelling and my mind wants to go with it and I’m fighting tooth and nail not to let either of them win.  And yet, I’m stuck on that see-saw between doing what I want to do and making my chest worse – there’s no telling whether it will or not.

The smart part of my brain is telling me not to go into work tonight and to stay home, stay in bed and get some rest, but the fragile part of my brain is telling me that I need to get up and out of the house to avoid getting chronically cross with myself and my chest for not supporting me in the things I want to do.

I don’t want to be here now – I don’t like being back in this place where everything I do has to involve a sacrifice somewhere else.  I want to be able to book myself to do something on two consecutive days and not feel like a slave to the whims of my lungs.

I know I have to accept that that’s exactly what I am now, and that I have to learn to work with them as much as I can for the time being until I get a shiny nw set which will let me do what I want when I want.  There’s really no point in me sitting here harping on about how poor old me can’t do what  I want to do and isn’t life unfair, because it’s not like I didn’t know that already.

Pull yourself together, get a grip on the realities of your situation and stop letting little things rock your boat.  Focus on the good things, do what you can manage to do and forget about the rest of it – there’s no point pining for something you can’t do, you might as well make the best of what you can do.

After my somewhat self-pitiful mini-rant last week I seem to have slightly dropped the blogging ball and not had a proper update – the longest I’ve gone without an update since I started this blog I think.

I blame many things – anything really that absolves me from accusations of being too damn lazy/forgetful to write something interesting on here – and deny all such mutterings from the kids in the back.

Still, things have picked up mightily since last Thursday – I knew it would only be a blip, and it was, albeit a two-dayer, but a blip none the less. I struggled for a couple of days to shake of the negative thoughts and not-so-nice images in my head, but I’ve got a pretty good daemon fighter in my head after all these years, so I get back on top of things pretty quickly.

This weekend was a weird one, because I had lots to do but couldn’t escape the fact that during the week I’d actually been far too busy and needed to take a bit of time to myself to make sure that I stopped myself from sliding down hill.

I headed to Oxford on Friday to see my physio and we made plans with my CF nurse to start a course of IV’s at the end of this week. They wanted me to come in, onto the ward, for the first week of the course, but I managed to negotiate a stay of execution until the week after to ensure that I didn’t have to miss another week of work. (I’ll now be in hospital for half-term week, so not nearly as bad as going in next week).

It also means that I can still attend the meeting I’ve been invited to at the Department of Health next Tuesday, the subject of which is sadly under wraps at the moment, but I’m sure I’ll fill you in on at a later date.

Today, however, I was coincidentally down at the DoH as well, meeting with the team who deal with oxygen provision to discuss the problems that I and other PWCF have been having with the home oxygen service, mostly with relation to Allied Respiratory.

It had originally been scheduled as a meeting between all three sides, but in the end the decision was taken by the DoH to have a separate meeting with Allied, which the CF Trust will also do, to air the concerns directly.

The purpose of today’s meeting was to express as clearly as we could the importance of so-called abulatory oxygen to PWCF and their needs for portable O2.

It was actually a really positive meeting, with the two representatives of the DoH really keen to take everything on board and correct things. It’s fair to say that things are a good dal better with Allied than they were even 3 months ago when I first started using them, but it’s important for the issues that did come up to be properly looked at to ensure nothing like that happens again.

I’m confident following the meeting that good things will come from it, including a commitment to looking at lighter, more portable forms of oxygen to make getting out and about easier for people like me who find the cylinders a weight.

I also hope that the feedback with regards to customer service is picked up on and driven home to the company, because their staff training is simply appalling.

The meeting did exhaust me, though, so it’s an early night and restful day tomorrow on the cards.