A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 28 July 2010

I spy with my little eye

It's a week since I had my first cataract op and I'm doing okay :o) I had to be at the hospital for 8.30am and was told that I was near the beginning of the list, and then they suddenly realised that I'm MRSA positive (it's been in my notes all along so I don't know why they only just realised) so they moved me to the next door ward, put me in a cubicle, and moved me to the end of the surgery list :o( Consequently I didn't go into theatre until 11.50am. I was in for about half an hour, was taken back down to the ward, told I'd be able to go after 1 to 2 hours so long as my prescription was up. My prescription got lost and I didn't leave the hospital until gone 4.30pm. It was a loooooong day.

So how was it? Um ... okay I guess. It started with some kind of test done on the ward where the nurse numbed my eyes and then put a sensor wotnotthingumyjig (that's technical terminology) onto my eye ball that supposedly detects the strength of implant lens that the surgeon should put in once he's removed the lens with the cataract. It was odd being poked in the eye and not feeling anything, though I have no complaints that I couldn't feel anything! Then the nurse took my glasses away for another check on the implant lens that would be needed (I don't know why they needed to this and the 'poking me in the eye with a sensor wotnotthingumyjig' test), and while they were having whatever check was being done she brought a sample implant lens for me to see. The slight problem was that without my glasses, and with my pupil dilated, I couldn't see a sodding thing. Add to this the fact that the lens was supposedly tiny, transparent and floating somewhere in some clear liquid, the chances of me seeing it were slim to start with. After several times of the nurse trying to point it out to me, and my explaining that I couldn't see it without my glasses, I gave up, lied, and said, 'Oh yes, there it is. It is tiny, isn't it? Amazing.' The nurse seemed satisfied, and she went and got my glasses.

The op itself was weird. By the time I'd done all the waiting around to go up to theatre I thought I was more bored than nervous, but the surgeon had to remind me to breathe at one point. LOL I guess I'm so used to not breathing so well that when I get nervous and hold my breath I don't notice, but once the surgeon asked me to 'take some deep breaths and then just breathe normally,' I heard the beep of the oxygen saturation sensor was down in the lower range of things, but gradually rising as I took some breaths. I don't know what my sats went down to, but they had a little way to come up. I was fine though, and it wasn't anything to do with my asthma; just nerves.

So anyway, the op. It started with a sticky thing being put on my eye to keep my lashes out of the way and a brace being put in it to keep it open. Then a variety of drops were put into my eye, which made me jump every time they went in, although aside from a slight sting from one of them they didn't hurt. At first I could see all the things coming at me, despite the almost blinding theatre lights, but as more of the drops and then I think an injection were put in everything went misty, and then completely white. I thought about what my dad would say and knew he'd say it was interesting, so I concentrated on that thought, took it as my mantra for the whole op, and was thankful that my total blindness was only temporary. Apart from the white I could see the odd shapes that the theatre lights were now making - something akin to butterfly shapes, but with kind of holes in them - and vague, shadowy shapes of things near/in my eye. I could feel pressure at times, but there wasn't any pain, for which I am immensly thankful! And then the surgeon got the hoover out. That's not actually what it's called, but it's basically what it is. There was a lot of swirling in my eye, which I could see and that was very odd, and a weird 'sort of sensation' that I can't really describe, a lot of water dribbling down the side of my face, and a slightly disconcerting sucking sound. After the eye hoovering the synthetic lens was implanted, which I'm told is slipped in folded up and unfolded once it's inside the eye. How amazing is that?! It was another of those 'sort of sensation' moments, but fine. All done, patched up, and doing a fine impersonation of a pirate I was then ready to be taken back to the ward, where I had a lot of frustrated attempts at using my Nintendo DS, but without actually being able to see what I was doing. I had my glasses, but I couldn't get them on with the big patch and eye guard on my right eye bo) As the anaesthetic wore off my eye got very stingy, but I wasn't offered any pain killers so I waited until I got home. The patch had to stay on for the rest of the day and that night, but I could take it off the next day, and I now only have to wear the guard at night for the next week (having already worn it at night for a week), just to make sure that I don't rub it in the night. Mornings seem to be worse for swelling and bruising, but there hasn't been toooooo much of either. At first there was a lot of black and white flickering and it kind of looked like water was boiling in my eye, but that was just everything settling down. I'm still getting some flickering in the mornings, but mostly it's settling well bo)

I have to wait until I've had the left eye done before I can get a new prescription for my glasses - should be about 6 weeks till the second op, but no date yet - so it'll be a while till I get the full benefit of all this, but already I can tell a difference. For starters, I have the central vision back in my right eye! That's amazing! Everything's brighter. Colours are so vivid and vibrant! I hadn't notice how dulled colours had become, probably because the colour was leeched out of my world slowly as the cataracts developed, but now half the world is alive in a romp of colour again bo) And even though I'm yet to have my glasses prescription sorted, things already have more defined edges. The world is made of crystal, not frosted glass! Mind you, now that my right eye is done (the worst of the two) I see how bad the left eye is and I can hardly wait until both eyes are cataract-free and my glasses sorted. At the moment the world's a bit lopsided, but it's already a lot better than it was.

One of the temporary downsides is that I'm not allowed to drive for three weeks from the op - so I have another two weeks to go - and I'm feeling rather cooped up. Until both eyes are done then it seems that I won't be able to read or do any close work bo( I'm getting bored. I want to be doing cross-stitch and reading the novel I started shortly before the op, and I also have some reading to do in preparation for my next OU course. I've ordered some magnifying sheets from an online company but they haven't arrived yet. I'm okay using the computer as I can enlarge the text on the screen, but doing anything else much is proving very difficult and frustrating. The other thing is that I'm not allowed to get water in my eye for two weeks after the op, which isn't generally a problem except for when it comes to washing my hair. I don't have a shower, just a shower hose that attaches to the bath taps, but I can't easily use that backwards. My mum and step-dad stayed with me and looked after me from the day before the op until Sunday (and a marvellous job they did too!), so Mum helped me to wash my hair (leaning backwards over the side of the bath. That is, I was leaning backwards over the side of the bath, not Mum!) while she was here. Since Sunday though I've been to the hair dressers for a wash and blow dry, and have booked in for three more between now and next Wednesday, when I should be okay to do my hair myself again. I have to say that I was surprised at how expensive it is just to have a wash and blow dry (£13), so I'm just thinking of it as post-operative pampering ... or at least trying to.

All in all, it went okay. I was nervous, and it's not an experience I'd suggest putting on your 'Things To Do When Bored' list, but it's going to be fab when I've had both eyes done ... and when I don't have to put eye drops in four times a day ... or take other anitbiotics three times a day for the chest infection that I've managed to pick up along the way. Yes, another one! Still, on the bright side (that'll be the right side, now that the cataract from that eye is gone ;oP ), the driving restriction from the eye op is making me rest up, sofa surf and generally take things easy so my lungs might have more chance of clearing the infection.

Monday, 19 July 2010

In the news

Last Thursday Asthma UK published a new report on severe asthma, and more specifically about the discrimination faced by many with severe asthma and their specific needs. The report is called Fighting for Breath and you can read it here. It's an important document because so little is understood by the general population about severe asthma, so anything that highlights the condition is a good thing. With this need for publicity in mind, Asthma UK put out a call for people with severe asthma to contact them if they'd be willing to help the cause. I responded to this call, was then asked to tell them a little more about my 'story', and consequently they phoned me, and asked if I'd be willing to speak to the media. They'd sent out a press release to various places around the country and in the north east they'd had responses of interested from BBC Look North (local TV news programme), BBC Radio Newcastle, and BBC Radio Teeside. At first I wasn't all that keen about doing TV as I'm so self-conscious about my weight, but I had to remind myself that the cause is the important thing, so I put my insecurities aside and agreed to do both the TV and radio programmes. Radio Teeside never got back to me, but I was on the 'Alfie and Charlie at Breakfast' show on BBC Radio Newcastle at 8.25am on Thursday, and on BBC Look North on the 6.30pm programme. I have to say that the Alfie and Charlie at Breakfast programme was rather early for me, so unbeknown to the listeners I did the phone interview lying in bed in my pyjamas. Tee hee hee. I think it went okay for the most part, although I kept losing my train of thought and at the end I kind of petered out, but I think I got over what I wanted to say ... mostly. Mind you, it would've been helpful if they'd kept to the questions they'd said they were going to ask me and had sent me on Wednesday. It was, however, helpful to think through all they asked in these questions, and I was able to incorporate some of my thoughts on these into answers to the questions they ended up asking me.

At 10.30am on Thursday the reporter/interviewer from BBC Look North came round. Joanne was lovely and helped me to relax and lose some of my nervousness. We started off with a chat about my asthma, how it effects me, experiences in hospital, how my daily life is effected, my need for carers, the rubbishness of the benefits system and their lack of understanding of severe asthma and my experience of that (I had an horrendous experience with the benefits system a few years ago). She then set up the camera, sat behind it and asked me some of the same questions again while the film was rolling. That was a bit weird, because my response then wasn't spontaneous so oddly wasn't as coherent as first time round. Overall it went okay though, and in the final cut they had some of what I said as voice over as they showed me around the house, because after we'd done the interview bit Joanne spent a while getting visual shots without sound. We went into my bedroom first and she filmed me opening my drawer of medicines by my bed, taking out the box of prednisolone and popping three of the tablets onto the bedside cabinet. Then she wanted a shot of me using my nebuliser, but as I'd already had my morning dose she was afraid that if I put any medication into it then I'd overdose (I thought this was quite amusing given how much salbutamol I have when I'm ill, and I was aptly having a fairly rubbish morning with my lungs too) so we didn't actually run the nebuliser - I just put the mask on and sat there looking at the machine ;o) After that, Joanne wanted some film of me using my wheelchair so I spent a while going in and out of the flat as she filmed from different angles. When she was behind me she saw the stickers I've put on the back of Taz (electric wheelchair), one of which says, 'Chaos. Panic. Disorder. My work here is done.' The other says, '0-60 in 15 minutes.' She liked them a lot, filmed them and they ended up on the telly, as did Zach (the cat) because she took a liking to him >^..^< Tee hee. When I was outside she wanted me to run my fingers through the fresh herbs and then pick some of the basil. She took a while filming this and I was a little anxious that I was going to end up with no basil plant left ;o) Thankfully there was plenty left, but I also had plenty to go with my tomatoes and mozzarella for lunch :o) So that was pretty much it, and an hour after Joanne had arrived she went as she had to have a snippet back for the lunchtime programme at 1.30pm, with the longer version ready for 6.30pm. It was awful seeing myself on telly, and watching it I couldn't really concentrate on what was being said, but I think it was okay...

While my carers were here on Thursday and I was in the bath I missed a call from a guy in the Look North news room, but he left a message and I got back to him this morning. He'd had a call from a company in Harrogate - EnviroVent - who'd seen me on the telly. They make air filter machines that are supposed to combat humidity, condensation, dampness, and ultimately dust mites, and they think that their products might help me, so they're offering to install one of their machines into my flat for free! Apparently it usually costs around £800!! This is an amazingly generous offer of them, and anything that has potential to help has to be tried, so I've jumped at the chance. Of course, EnviroVent want some publicity, which is likely foremost in their mind when offering this to me, but that's fine by me. So John from the BBC Look North news room got back in touch with EnviroVent after he'd spoken to me, and within half an hour I had a call from them to talk through it. As I live in a property owned by the council then we may have to get permission to have the machine installed, but since I don't know who to get in touch with then EnviroVent are contacting them on my behalf, and I'll get in touch with the council then if I need to, guided by EnviroVent on who I need to speak to. Apparently EnviroVent have put one of their machines to one side for me, and can fit it almost immediately when they get the go-ahead. The only delaying factor, after the engineer has been to see where would be best to have it, and any other products that might be helpful, is that Look North want to come and film the machine being installed so that they can do a follow-up item. I guess this is dependent upon it being helpful to me, but it could mean that I end up on the telly again, which isn't good for my insecurities, but is brilliant for publicity about severe asthma. Both EnviroVent and John from the news room have told me that the machines are endorsed by Asthma UK and have also had recommendation by some hospitals/NHS Trusts, so this definitely isn't a gimmick or untested. How exciting! Okay, it may not help me, but there's a chance that it might, and it's a very long time since there's been any suggestion of anything that might help.

I'll let you know what happens.

Sunday, 11 July 2010


It's only ten days until my first cataract removal operation. I'm a little nervous, but I'm also excited at the prospect of being able to see properly again. I was at the garden centre with my mum earlier today (she came down from Edinburgh for the weekend) and I found it very difficult indeed to read the labels on the plants I was looking at. It's all slightly complicated by the Holmes-Adies Pupil in my left eye, because the bright sunlight was blinding me in that eye as it doesn't accommodate, but when I closed that eye to stop the pain, the dazzle, and to protect it I was left with pretty much only peripheral vision in my right eye due to the cataract. Reading doesn't happen very well with no/very little central vision.

When I went for the assessment for surgery with the ophthalmologist they (there were two of them) were very keen that I know that there's a one in two hundred chance of my vision being worse after the cataract removal op, and a one in one thousand chance of losing my vision in that eye all together. Obviously this is a consideration, a slight concern - particularly the possibility of losing vision entirely - but without the op there is absolute certainty that I will go blind, so the decision was a no-brainer. You may remember that originally the ophthalmologist had said that they'd never operate on my cataracts because of my lungs and the risk of anaesthetic complications, even with a local anaaesthetic. I know there are risks, but I had discussed the ophthalmologist's concerns with Dr H (asthma consultant) and he'd reassured me that I ought to be fine with a local anaesthetic, so I was able to pass this on to the ophthalmologists when I saw them for surgery assessment, and was also able to say that Dr H would be happy to discuss things lung-related with them if they wanted. The possibility of this, and the conversation I'd had with Dr H that I was able to tell them about seemed to be enough to reassure them at this time, and they agreed to do the surgery. Well, they agreed that the surgery can happen, but they've made sure that the consultant is going to do it in case of any complications with my asthma. I'm sure there won't be. I'm sure I'll be fine. In fact, that side of things isn't really concerning me at all ... it's the prospect of someone stabbing me in the eye with a sharp knife while I'm awake that's making me apprehensive. I just have to keep focussing on the end result - central vision returned, and most likely better sight in general :o)

I wish I knew how long I'm going to have to wait between the op a week on Wednesday and the same op on my left eye. I'm told that they're usually done in fairly quick succession - two or three weeks - but I don't know for sure. There's going to be an odd time between the ops when my sight it different from how it is now and my glasses prescription is different from what it's going to need to be. There's no point in getting new glasses in that interim period (aside from it being stupidly expensive as well as pointless for such a short time) so I'm not expecting to be able appreciate the full benefits of having the cataracts removed until after both ops have been done and I get new glasses. The other thing is that I wear varifocals and these usually take about a week to get from the opticians, so even after both ops have been done, the second eye has settled after the op, and I've been to the optician to see what my new glasses prescription will be, I've still got a bit of a wait until I can see better. I also doubt that I should drive during this time, which is going to be very restrictive. Still, I will hold on to the longer-term positives.

It all starts ten days from now. The countdown to better vision has begun :o)