Archives: Friends

Another good day today, and another day of what economists term “positive growth” – although I have to say I wish that referred to my personal economics rather than the state of my chest.

Actually, I take that back – I’d take empty bank over knackered blowers any day of the week.  Still, it’s got to show how much things have improved over the last week or so that I can actually write half a paragraph complaining about lack of funds as opposed to anything health-related.  What a relief.  I think.

Having spent a week away from K, it’s been absolutely lovely to finally spend some time together yesterday and today.  She’s been so amazingly supportive and has been there for me all the way through and has also dealt superbly well with not being there when I needed it, which I know from personal experience isn’t an easy thing to do. 

While I’m on the subject of support, though, I’ve been blown away by all the messages of support I’ve had from people reading this blog – it really is something else. 

It’s a remarkable feeling to know that you’re loved and thought of by people all over the world (and it really has been from all over) and I want to say that every single one of your messages have made a huge difference in encouraging me and keeping me going when the times have got really tough recently.

As a side note, those of you who’ve been emailing me at my onetel account, I have to apologise for lack of responses, because I can’t access my emails from Mum and Dad’s.  I went back to the flat for the first time in a couple of weeks today and was there long enough to check my mail and discover a whole raft of messages to which I want to reply but didn’t have the time.  So please excuse my rubbishness, but I will get back to you, I promise!

As far as today goes, I’ve had a lovely day of chilling out and relaxing.  This morning, after sleeping in nicely till 11ish (caused mostly by poor sleep and drug-related tiredness), K and I were visited by S&S, no longer the newest double-team on the block, but happily still going strong. 

It’s been a while since I caught up with them, so it was good to have tea and chats and to humiliate myself with my awful knowledge of music while we channel-surfed through MTV, VH1, TMF, Q and other letters.

When they’d gone and we’d had a nice big bacon sarnie lunch with Mum and Dad, with super-fresh bakery bread, I did my drugs and caught a cat-nap before K and I ventured out in the car for a bit of a spin and stopped over at the flat, where I checked my mail and gathered a few bits and pieces to keep me occupied at home for tonight and the week ahead.

It was good to get out of the house properly for a bit and I was impressed at my discipline in again not pushing myself too far in trying to do too much. 

Our friends at The Lodge, including the aforementioned S&S, D and PS are throwing a Dirty C Word Hawaiin Luau at their place tonight, which I really wanted to pop my head into, not least because it was at least partly motivated as an opporunity for K to get out to.  But it would have been doing too much and I doubt I’d have managed to stay for just the quick “hi” and “bye” that I’d wanted to because I’d have had so much catching up and gossiping to do. 

Mum’s got all of her book group over for the night tonight, but I’m shutting myself away upstairs and being anti-social.  Although I get on well with Mum’s friends, I’m just not sure I’m up to maintaining conversation with big groups of people at the moment, so I thought it best to opt myself out of it and sequester myself in my room with Dad’s laptop on wi-fi and today’s papers to keep me occupied.

I’m sure I’ll soon have my Social Strength back up to full-speed, but like everything I’m working with at the moment, I’m trying not to take too big steps too quickly.  Slow and steady wins the race, as someone once said about something to someone. 

Profound, that.

The hardest thing to come out of my recent downturn in form – as it were – is the adaptation I’m having to make to the way I do things and the things I do.

Yesterday, my big bro took me out in the afternoon to catch the new Bond movie (which is fab, incidentally, if somewhat dumbed-down Hollywood in parts) in the Xscape Cineworld in town. The trouble is it’s about a 200-300 yard walk from car to screen, including going up a floor, which took me a long time to negotiate and a lot more energy than I was used to.

I’ve recently become accustomed to walking a lot slower than I used to, although I did go through a patch of setting off at marching pace for 10-15 yards before being pulled up by unhappy lungs protesting at the work rate. I’ve now learned to start out slowly and continue in the same vein, but this latest infection has left me with a real need for permanent oxygen supply – something my pride has not quite caught up with.

Last night, K had some old work colleagues over for a girlie night in, which I couldn’t avoid and actually really enjoyed (she’s really quite girlified me). But even though it was in our place, and spent entirely sat on the sofas in he lounge, I couldn’t bring myself to wear my O2 in front of the group.

Silly, I know, but a good example of the adaptations I’m having to make to carry on as normal. I’ve got to get used to the idea that I’m going to have to have my nasal specs on when people are here and, more troubling for the moment, I’m going to have to get used to taking a portable cylinder out with me when I leave the flat.

It’s hard to describe the battle of heart and mind that’s going on at the moment – my head knowing that things are not only easier but also much better with the O2 on, my heart not wanting to be seen as a “sick person” by all and sundry who see me in the street.

One of the few blessings of CF is that to the untrained eye (and often to the trained, if you ask medical students patrolling the wards in hospital), the average person with CF doesn’t look any different to the average person without CF. Slightly skinny, maybe, but skinniness is somewhat in vogue at the moment anyway (for the girls, at least) so it’s not a big thing.

Going out with nasal specs and an O2 cylinder is another matter altogether. No one else does that. “Normal” people don’t travel adorned with extra air. Which means admitting to the world that you’re not the He-Man you wanted them to think you were. Or, at the very least, admitting that you’re “different”.

It’s one of life’s little ironies that I’ve spent such a lot of my life championing individuality to my friends, family and, more than anyone, the kids in my workshops, and now here I find myself aching to conform, to fit in, to blend.

But needs must, and I know I’ll come around to it. I just need to be more forceful with myself and understand that if I’m wearing the O2, I’ll be able to do more than I can at the moment, and hopefully “freedom” will be the spur that allows me to come to terms with it.

Failing that, anyone with any other ideas, please let me know!