me and my pemphie

living naturally with pemphigus

2 July 2007 July 2, 2007

Filed under: Cellcept, books, film, food, garden, job, meds, pemphigus, prednisolone, shopping — blogarian @ 12:48 pm

Over the past few days, everywhere I turn I am faced with examples of really dreadful customer service. From rude shop staff, to customer service staff who refuse to pick up the phone or answer an email. It’s so tiring.

On Friday, I chased up Dobbies and the missing bench. I ordered a companion set for the garden a month ago, with an estimated delivery time of 48 hours … then heard nothing. The website changed to show that the set had an estimated delivery time of 7 days, but still nothing. After a week, Dad sent an email to them asking where the bench was, but had no reply. So, after a month of no contact from Dobbies I used their live online chat facility to find out where the heck the bench was. One chat and one phone call later: it should be with us a week on Wednesday. I have to say, I would be even more annoyed had the weather been nice and had I consequently been missing out on sitting in the sun on my new companion set. So, the heavy rainfall that we’ve had has at least saved me from that.

All of which reminds me, torrential rain and tubs of plants do not mix well. Practically every day I have had to look at our poor pots and see the plants swimming in water. I’ve been pouring the water out of some of the smaller ones, but really the weather is ruining them.

Poems of Thomas Hardy

Ugh, I ordered The Poems of Thomas Hardy (the Claire Tomalin book) for Mum’s birthday because she’d read - and I think enjoyed - Tomalin’s biography of Hardy. Then at the weekend I discovered a copy of The Collected Poems of Thomas Hardy by her bed. I can’t cancel my order because it’s already been posted. Is it superfluous to have two collections of Hardy poems?

I have signed and posted the contract for my new job.

I’m slightly worried about my (physical) ability to do the job. I spent part of Saturday cleaning my bedroom and moving a few pieces of furniture around. Then on yesterday I slept until 3pm and was still tired for the rest of the day. This does not bode well for 12 weeks of 9 to 5 days spent on my feet.

I have pemphie blisters. I am not happy about this. I got some in the usual places on my right forearm and knee. I also have a few ‘erosions’ on my back, neck, torso and left shin (this too seems to be a favourite place for the pemphie to manifest). Needless to say I haven’t reduced my prednisolone (yet).

I feel like I’ve had a productive day today. I have actually done stuff. A lot of it is small stuff, that most people would just do automatically and not think of as a big deal, but for me it’s a bigger deal, just because of the energy and … drive, I guess, that I have to have to do anything these days. It’s a horrible thing to admit, but the combination of prednisolone, Cellcept and pemphigus has left me pretty low and with no energy, so even getting out of bed each day is something of an achievement!

Anyway, today I have attempted to vacuum the upstairs landing and my bedroom - I say ‘attempted’ because despite my best efforts the dog hair on my floor is just not shifting. Le Dog is moulting and there is black fluff everywhere. It is quite disgusting. Dolly isn’t normally bothered by the hoovering, but she got quite distressed today and started panting. I hate when cats pant purely because it suggests there’s something wrong with them.

Ooh, I have also made bread! It looks and smells lovely.

Last week I persuaded Mum that she wanted a breadmaker (yes, I know it’s another kitchen gadget, and I know that breadmaking can be done by hand), so we ordered a cheap Morphy Richards breakmaker. It hasn’t arrived yet, but to get me in the mood for fresh baked bread on demand I made a crusty wholemeal loaf. Ach, I won’t pretend I made it from scratch, I used a packet, but it still counts as making bread doesn’t it?

Over the weekend I watched two films: Hot Fuzz and The Illusionist. I’m sorry to say I wasn’t terribly impressed with either. Both were okay, perfectly alright, watchable films, but both were a let down. I’d been led to believe that Hot Fuzz was even better than Shaun of the Dead and that The Illusionist was almost as good as The Prestige. Wrong!

Hot Fuzz was nothing like as good as Shaun of the Dead. There just weren’t as many laughs and the story wasn’t as tight and, quite frankly, there were some boring bits. At least with Shaun of the Dead the genre (zombie horror) is well defined in people’s minds, and so it was easy to play off that, but with Hot Fuzz I’m not entirely sure what the genre was. It was more like a couple of specific films were being referenced - I’m thinking Straw Dogs (which even referred to in the film) and maybe The Wicker Man. It’s not really enough of a genre though. I think maybe it came closer to a (slightly) comedic version of an episode of Midsomer Murders. It just fell a bit flat for me. Especially after the joy of Shaun of the Dead - I almost wet myself laughing every time I see them beat the old man zombie up while Don’t Stop Me Now is playing.

The Illusionist too had something to live up to, namely obvious comparison to The Prestige. A story of star-crossed lovers and magic, it should have been right up my street, but practically from the moment it started I was disappointed. Where magic of The Prestige was (mostly) real, believable magic, The Illusionist relied on CGI, which just reminded me that I was watching a film and that nothing was real. I love Edward Norton, I think he is a fantastic actor, but I really couldn’t see the appeal of him in this film. His character really didn’t have much charisma. The film lacked substance, there wasn’t a huge amount going on, and there wasn’t much energy and excitement. The ending was okay, and I do like a twist, but enough wasn’t made of it. I really was disappointed, but like I say it was perfectly watchable. I think it would be a wise idea to watch The Illusionist before seeing The Prestige though.

 

8 June 2007 June 8, 2007

Filed under: birds, film, garden, hats, sleep, telogen effluvium, toiletries and beauty — blogarian @ 10:19 pm

I have the house to myself for the weekend - just me and the animals. I like the peace and the stillness.
I woke up extremely late today. I must have been tired because I woke naturally at … wait for it … 12.30pm! I woke feeling refreshed, but all day I’ve have had a niggling feeling of worry or guilt. It’s like I’ve forgotten to do something important.

Because I’ve got the house to myself I’ve been going hatless. This is novel for me. Ever since I left the hospital last September I’ve been wearing hats to cover up my baldy heid. No one seems absolutely certain of the cause of my hair loss. It started when the pemphie started and got worse when I was put on the meds. My previous consultant gave a diagnosis of telogen effluvium. Some women experience it after giving birth, but it can happen after trauma or serious illness, which fits with my experience. The alternative is that it’s a side effect of one of the many drugs I’m on. Whatever the cause I’ve become ‘a hat person’ since my hair loss began. I tried wigs - I bought three - but they all look so ‘wiggy’ and I felt silly wearing what was so obviously a wig. I’ve also tried bandanas, but on the whole I’m not comfortable with them because they make me look like I’ve got a pin-head - my head, however huge it actually is, looks tiny on my massive body. Hats work for me though. It’s been a real revelation. I wish I’d discovered the wonder of hats earlier. They mean you don’t have to wash or comb your hair. It makes being lazy a doddle.

The not-so-good thing about having the house to myself is that I don’t feel self-conscious about itching - and pemphie-itch can be so bad; sometimes I feel like I’m shredding my skin.  I think tonight I’m going to have a full-on pampering session and hope that slathering lotions and potions all over me distracts me from the need to scratch.

I watched DejaVu last night. Ugh, it was dreadful. How on earth does it get 7+ on IMDb?!? I found myself laughing at the ludicrous premise. Also, you’d think that since it had a half decent cast there would be some half decent acting, but they outdid themselves in the cheese and ham stakes. The plot was bad, the acting was bad, the script was bad, the special effects were passable. Avoid. I’ve got Lucky Number Slevin for tomorrow evening, hopefully it’ll be better … couldn’t really be worse.

I received a Dr Hauschka catalogue in the post today. It’s a beautiful, luscious looking and feeling catalogue and it made me want to buy one of everything, but by god it’s expensive stuff! I notice that the range is stocked by my local John Lewis store, so I might go in and have a proper look / feel / sniff and see if it’s worth getting in (further) debt over.

swallowMuch more exciting is the fact that we (probably) have a pair of swallows nesting in our garage. It’s so exciting for me. When I moved back home after being ill and in hospital I had a bit of a new found love of life and nature. Since then I’ve become more and more interested in the wildlife that visits the garden and the plants and trees that grow in it. It sounds so ignorant of me, but I couldn’t have told a swallow from a blackbird this time last year. I’m a late starter, but I’ve started to help Mum with the garden and I’m getting to know what all the plants are. Back in January Dad took part in the Big Garden Birdwatch and I started to learn the names of the birds that visit the garden and the bird feeders that I’ve been filling year after year every winter. Anyway, we’ve had our suspicions about swallows in the garage for a couple of weeks now. Mum and Dad have seen them flying in and out, but until today I hadn’t seen them. I’d seen evidence of them. Up in one corner of our very messy garage there are little blobs of mud hanging on the wall. They look like the very beginning of a swallows nest. I suspect this effort to build a nest was abandoned and that they have in fact set up home either in or above an old wardrobe we have in there (yeah, it’s that messy a garage). Our ‘garage cats’ (now both deceased) used to live in the wardrobe, so it’s nice to know that now the cats are gone that another creature is living there. I disturbed them though when I was going out to water the pots this evening and they flew out of the garage and round and round in swooping circles outside it until I had gone - maybe they were protecting the nest or just collecting insects. I’m so happy we have swallows. This reminds me: there was a terribly sweet story on the news last week about a couple who had blackbirds nesting in their bathroom (link to video).

 

5 June 2007 June 5, 2007

Filed under: aromatherapy, diet, garden — blogarian @ 8:00 pm

I have a horrendous headache. Last night I went to bed, watched a little tv, read a little, then tried in vain to get to sleep,but was prevented by aforementioned horrendous headache and yet more nausea. I eventually passed out at about 4am while listening to some random radio station that was playing lullabies. I tried peppermint and lavender EOs, but I don’t think they did much. I woke up this morning and felt fine for about two seconds until I rolled over. I wonder if the headache is some sort of indication of detoxing, or a lack of caffeine yesterday. I think I only had one cup of coffee yesterday, whereas normally I’d probably drink at least five or six.

I spent a lot of time in the garden today, playing with the dog and helping Mum with the gardening. We’ve still not got the companion set I ordered over a week ago, but have finally finished all the pots and most of the beds. There’s still a lot of tidying to do, but it’s looking really lovely and I’ve been enjoying sitting out.

I did the online shopping today. Once again I have filled the virtual trolley with healthy foods and organic foods … my two small blips were a bottle of almond flavoured diet cola (just because it sounds so nice) and some liquorice. Today while feeling sick I had a craving for liquorice and a sense that it would settle my stomach, so I’m going with my instinct on that … well, information on Wikipedia seems to back up my craving-instinct, apparently liquorice “may soothe an upset stomach”.

 

1 June 2007 June 1, 2007

Filed under: Derren Brown, Shouting At The Television, cheese, film, food, garden — blogarian @ 11:31 pm

<rant> This morning I found myself Shouting At The Television - a former favourite hobby of mine. It’s my habit to start and end the day with BBC News24 (and then to do my utmost to avoid the news in between times). So, late morning I was watching a news conference given by Tony “I’m a smug, arrogant, condescending ass” Blair and Thabo Mbeki. Blair had just finished saying something very important that he had to clear up because we are all idiots and couldn’t possibly understand things ourselves and Mbeki started to speak - no doubt to say something equally important (but probably minus the patronising tone) when Matthew Amroliwala decided that what Mbeki was about to say wasn’t important and reminded us that Blair was going to be asked a question by a “Western reporter” (clearly meaning a “more important reporter”). Grr. </rant>

Morven cheese

 Went to Millers for lunch with Mum. It’s such a strange place. You can buy animal feed, hire a digger, buy a bridle, have your lunch in their cafe, pick up a tin of beans, a newspaper, a jar of fancy home-made-style chutney, some locally grown strawberries, a dvd about tractors and spend a small fortune on a tweedy, conservative outfit all in the same place. It’s eclectic to say the least. I was on the look out for some local Craigmyle cheese, but they only had the Wee Wummle and I’m not all that fond of Camembert-style cheese, so I didn’t get any. Ideally, I’d like to try the Morven, at a push I’d give the Learney a go (partly because it’s named after our hill!) We came home with full bellies, a newspaper and some strawberries (which were very good).

At home I watched Mum plant things while I enjoyed sitting out in the sun. It was such a beautiful day here today.

While I remember: I watched Little Children last night. It was okay, although I probably wouldn’t bother watching it again, but mostly because it’s not my ‘type’ of film - it’s one of those arty, ensemble pieces where not a lot happens and there’s no real resolution at the end. The acting was excellent - I really felt a great deal for Kate Winslet’s character. The story was involving, but unfulfilling (oh, the irony!). I think the 8.0 rating that it currently has on IMDb is a little generous, but not too far off the mark. I have Perfume for Sunday night.

Tomorrow evening I am off into Aberdeen to see Derren Brown.  I’m looking forward to seeing him live, but I have my concerns.  I’m (almost) always impressed by what he does.  I just wonder how edited things are and if the live show will ruin spoil my high opinion of him.

If it weren’t for my plans for tomorrow evening I think I might have tried to persuade Mum and Dad that we should all go to the Taste of Grampian food and drink festival.  It looks like a good day out with lots of food, drink, crafts and entertainment.  As it is, I don’t want to tire myself out before the evening.  If Mum or Dad spontaneously suggested going for a wee while then I might say yes, but I’m not going to bring it up.

 

27 May 2007 May 27, 2007

Filed under: diet, eco-friendly, garden, natural living — blogarian @ 8:13 pm

I ordered the bench pictured in the previous post from Dobbies this morning. It’ll be nice to sit out on it with a cup of coffee and watch the natural world go by. It doesn’t appear to be FSC certified wood which I feel slightly guilty about.

The parentals went into town to buy stuff, so I set them a mission to spend my book token on Imperfectly Natural Woman by Janey Lee Grace. I do like book tokens, but I wish they could be spent online. They failed in their mission. Now the question is do I just cave in and buy it from The Book Depository or do I wait until next weekend and finally get rid of my book token?

The NEEPS forum has some good links. I was astonished to find that there is an organic veggie box supplier called Vital Veg just down the road from where I live (I’m currently trying to persuade Mum to give them a go). I also found a handy website to find veg box schemes near you. I also found a link to a handy list of toxic chemicals that can be found in most everyday toiletries. It’s on a commercial website for natural and organic toiletries so the source isn’t exactly neutral, but then again where is?!

Soap NutsMy spending spree continues (Must. Stop. Spending. Money) and I have bought a sample of Soap Nuts. I have only just convinced to switch from Tesco non-bio tablets to Tesco Naturally non-bio tablets, so I’m not sure how she’s going to respond to sticking berry shells (they aren’t really nuts apparently) in the washing machine. I was looking at Aquaballs and Ecoballs and other similar ‘ball’ things, but I don’t really understand the science behind them. I asked Mum and Dad (both ex-science teachers) and they seem to think that using the balls is akin to the old fashioned method of washing things by bashing them against rocks at the rivers edge. I sort of understand how soap works - it’s to do with allowing bonds to be made between the water and the grease I think. I presume there is some sort of similar science going on with soap nuts. Anyway, I’ll give them a go and if they work great and I’ll buy some more, if they don’t then I’ve only forked out 1.50, so no great loss.

Final link for the day: The Alcohol-Free Shop. Now, usually I’m not one to turn down an alcoholic drink, but the contents of The Alcohol-Free Shop appeal to me. I love a yummy drink, I have been known to drink about 2l of Diet Coke a day, but the new me now eschews chemical-filled fizzy drinks. This week I’ve been drinking soda and lime, and fizzy water. Yes, there are still chemicals in the lime cordial, but not as many. I’m also giving my liver a little bit of a break and haven’t had a glass of wine in over a week. Anyway, there are alcohol-free wines, beers, juices and soft-drinks, amongst other things.

 

26 May 2007 May 26, 2007

Filed under: film, garden, guided imagery, meditation — blogarian @ 10:34 pm

Bench!Still tired. In fact I’m constantly tired. Ugh, this is just going to get worse as my pred goes down.

I feel asleep last night while listening to my guided visualisation mp3 … I seem to vaguely recall not being able to imagine what my ‘healing voice’ looked like, then the next thing I knew it was 6am. I was burning peppermint essential oil and I was so relaxed and snuggly on my bed, so it doesn’t surprise me that I fell asleep so easily last night.

This morning I got up late and watched some News 24. It was a lovely day here and I spent some of it in the garden and some of it dragging Dad around a garden centre spending lots of his money on plants. We went there to buy a companion-style bench that Mum had seen a couple of weeks earlier, but we failed on that score.

I had some nausea today, but it passed quite quickly. I was wearing my travel sickness bands, so maybe they helped.

This evening we all settled down to watch Snakes on a Plane. Genius. ‘Nuff said.