me and my pemphie

living naturally with pemphigus

04 August 2007 August 4, 2007

Filed under: diet, exercise, job, pemphigus, prednisolone — blogarian @ 1:35 pm

Work is leaving me exhausted. At the end of each day I am so tired I can’t do anything, but collapse on the sofa or straight into bed. It hasn’t helped that I have started to reduce my pred. I’m making lots of mistakes at work, but I met the woman who started after me and she is making mistakes too, so I don’t feel quite so bad. I’m going to apply for a permanent, part time job at the library I’ve been working at the most. I’ve no idea if I’ve got any chance of getting the job. I figure that at least I wouldn’t need training and that I’m familiar with the library whereas most of the other applicants probably wouldn’t be. On the other hand, my boss knows about all my mistakes. She seems to like me, but maybe she’s just being nice.

This is the end of my first week reducing to 15/12.5 EOD of the pred. Today I woke to find a small cluster of blisters under my right breast. I will persist with the reduction unless things get much worse.

I’m getting quite a bit of exercise since I started work. I’m on my feet all day and I walk to and from the bus stop most days (about 1.5 miles). I have less opportunity to snack during the day, so I think I’m eating less than I was. Hopefully all this means that I’m losing weight … although I’ve yet to notice anything which would suggest this.

(Library mules!)

 

28 June 2007 June 28, 2007

Filed under: animals, books, eco-friendly, exercise, plastic bags, prednisolone, shopping, yoga — blogarian @ 7:42 pm

Tesco’s delivery without carrier bags has reached us - hurrah! It made taking delivery of the shopping more difficult as the driver only carries the trays to the front door. I ended up filling the porch with food. Total plastic bags used = 1 (for meat). While it meant I had to work a little harder unpacking and putting things away it was quite liberating and uplifting not having a massive pile of plastic bags facing me at the end of it all.

Pic of skinny person doing DDThis morning I discovered that I cannot do ‘Downward Dog’. I simply do not have the upper body strength. Yes, I have tried out the Just My Size yoga dvd. Megan Garcia is lovely. She’s not a fake plus-size - you know, one of those women who are just so huge that they probably wear, ooh, a size 12 (shock, horror). She actually has a stomach. Yay! Okay, she’s nowhere near as big as me, but she clearly can empathise, and I don’t feel patronised by her and her suggestions for adapting poses. I’d been told, and read about, prednisolone causing muscle wasting, but I hadn’t really noticed it happening to me, but it has. I struggled a little bit with the cat and dog stretches (I don’t know what they are called, but they involve being down on all fours). But when it came to Downward Dogging (oh, that could mean so many things!), I had to just sit and watch passively. Overall, the dvd is good. Garcia is so natural, sweet and calm and really does ’sell’ yoga well. I have a few criticisms though. Firstly, the adaptations are separate from the actual routine. There is in fact an adaptation for Downward Dog which involves placing the hands against a wall, but I didn’t watch Megan’s ‘tips’ until afterwards so this morning I missed out on what will no doubt be an adaptation I have to resort to. Secondly, it feels a little rushed in places. There just isn’t always enough time to follow the instructions. Finally, it’s quite short. I think I’ve heard or read, or maybe Garcia mentions it, that the whole routine is 28 minutes long, which felt a bit short for me.

Btw, XL Emma replied to an entry I made about fat fitness. She is contemplating making an exercise vid. Do it Emma, please!

bookplatesI so organised that I already know what I’m getting my mum for her birthday in August. I caved on the bookplates and ordered some beautiful ones from a seller on Etsy.

I’m a latecomer to Etsy. I’ve browsed it many times in the past, but had never bought anything from there before. It really is a wonderful site allowing artists and crafters to sell their works worldwide.

The BIG problem with Etsy is that there are too many nice things on there. I keep seeing things and thinking “I must have that”.

Anyway, see right for pretty peacock bookplates.

Of course, Mum isn’t just getting bookplates, but it’s part of a book-ish themed pressie. She retires next week from her life as an SFL teacher and is planning on returning to her Open University degree (which has pretty much been all about literature and art history). So, a literary, book-ish theme seems apposite.

I have ordered a Bye Bye Standby kit. Things being left on standby is one of my pet peeves around the home. I seem to recall when remote controls actually had proper ‘off’ buttons and not just standby buttons - what happened? I also seem to recall a time when it wasn’t unusual to get up off the sofa to turn the tv off or change the channel. The Bye Bye Standby kit I’ve ordered has three socket adaptor things, so all things televisual can go in one, all things audio can go in another and I’ll have a spare one left over for the living room’s television etc. I had a look around and the cheapest kit I could find was from Amazon (but with a 4-6 week estimate on delivery). Acting on my desire for one of these kits coincided with Mum and Dad getting their electricity bill which is up again. Mum has really embraced my wish to go green and is talking of ‘a green makeover’ for the house. She even said that she’d love her next house to be an eco-home!

 

 

15 June 2007 June 15, 2007

Filed under: animals, books, crystals, exercise, job, weight — blogarian @ 9:53 pm

News, news, news: I have a job! I start on July 10th as a library assistant for the City Council. I’m not quite sure where I’ll be based. It could be a bit of a roving position or it could be in the Central Library’s Reference Department. I’d prefer the latter, but the former would be fine, it’s a job after all. It’s just a temporary job for the summer, but it will be a good way to ease myself into work and get a bit more practical experience. I’m excited and scared.

Mum took me out for lunch in Alford. We also did a bit of shopping. There’s a shop there called Parade, it used to be part of Annie Mo’s, but went solo a while back. It has the most beautiful furniture, gifts, toys and jewellery. Mum was buying a big pink agate pendant for herself and bought me some very pretty silver earrings with milky white and yellow gemstones. I’d like to know what the gemstones are, it would be nice to know a bit more about them.

Dolly is still a total sleepy-heid. She has the odd burst of energy when she’ll play, but mostly she sleeps. I dug out some old cat toys. She shows little interest in balls with bells, but likes a strange, bright orange mouse toy. She also likes to chase a bit of wool. A few days ago I cut some holes in a big cardboard box and she seems to quite like hiding and playing in that, the problem: it’s a bit of an eyesore. We had a wee look to see if we could find one of those climbing/scratching/sleeping activity centre things for her, but couldn’t see anything suitable. Mum bought the local weekly newspaper - Dolly isn’t in there. I am completely baffled about why no one is looking for her. She is a lovely cat and has been looked after. She is beautiful, litter-trained, well behaved, friendly and doesn’t seem to be at all traumatised. The only possibility that occurs to me is that maybe she is ill and some <insert rude word> thought it would be better to ditch her rather than pay vet’s bills or give her to the CPL (or ‘Cats Protection’ as it now prefers to be called).

Mum and I just had a bit of a barney about anorexics. She was watching a programme about skinny celebrities. She’s a bit obsessed with weight, her own and other people’s. All day she has been commenting on people’s weight and it frustrates me. I wouldn’t want people commenting on my weight, so I try not to be critical of others (obviously there are times when I fail miserably!). I tend to assume that people who are very thin or very fat (myself included) have eating disorders and are ill and therefore deserve my sympathy/empathy and understanding rather than my criticism and judgement. Anything in between very thin and very fat, well who cares!? Being healthy is far more important. I really do try not to be hypocritical when it comes to weight and appearance, I, after all, am no oil painting. The Western world’s obsession with the very fat and the very thin saddens me, especially when it is all concerned with aesthetics.

This reminds me, while in Parade today I spotted (and sneakily read) a book called The Lady Who Was Beautiful Inside by Edward Monkton. It’s a wee book and it’s lovely. It has a very simple, very positive message - I think the title probably gives it away! I foresee me having to buy it for people for birthdays/Christmases/etc.

The lady who was beautiful inside

Finally, after asking around how other people had found doing yoga I have been convinced to give it a try. I opted for Yoga: Just my size with Megan Garcia and ordered it today.

 

7 June 2007 June 7, 2007

Filed under: exercise, knitting, pemphigus — blogarian @ 8:11 pm

While randomly browsing t’Internet I spotted a link to a yoga dvd for fat people. I’ve never tried yoga, mainly because I’ve always thought that you needed to be thin and bendy - the thought of trying to do one of those crab things where you arch your back fills me with horror. Actually, just the thought of that makes me sore! After a lengthy trawl through Amazon UK I found just two dvds for fat people wanting to do yoga: Yoga for the bigger body, and the one I originally spotted, Yoga - just my size. It occurs to me that most exercise videos (that seems such an old-fashioned term now) aren’t really designed for fat people. In my entire life I have bought three exercise videos (yes, they were videos):

  • A random pilates one when pilates was all the rage in the late 90s - it was boring and difficult. The class leader was so perfect and stuffy I had the urge to snap her skinny twig-like body. I tried it once, got about ten minutes into it and abandoned it forever - it is currently gathering dust in the ‘off to charity’ box in the garage.
  • Walk away the pounds with Leslie Sansone - this is a fantastic way for fat people to exercise. You need to be fit enough to walk … and that’s it. The class leader - Sansone - is so nice and encouraging. She reminds me of Grace from Will and Grace in appearance and personality - she’s bubbly and not threatening which I think is ideal for a workout leader. She’s thin, but she absolutely recognises that not everyone watching and following is thin and/or fit. I have box of three tapes: 15, 30 and 45 minute walks. Basically you walk quickly for the length of the class, but it’s not just a plain march, there are other moves too and upper body work as well. Another great thing about this is that you don’t need much space you can basically do it from one spot if you adapt the moves.
  • Astrid’s ABC Workout - this came out in the late 90s and as well as being sold in all the usual places it was stocked by Evans (a plus-size clothes shop for those not in the know), this made it so easy to buy if you were a fat woman. There was none of the potential embarrassment of walking up to the counter in HMV with an exercise video and having some spotty youth smirk at the thought of you sweating away in a leotard. The fact that Astrid ain’t skinny helps too! It gives a proper work out, some of it is a challenge for me and I always work up a sweat. I like that there are some suggested adaptations if you can’t manage all the full ‘manoeuvres’. It does require some space as ‘grapevining’ and floor work is involved.

The US, being notorious as another nation of fat folk, seems the logical place to look for exercise videos / dvds for fat people. Amazon.com (US) has Yoga for Round Bodies. Ugh, I just hate all these euphemisms for FAT … ‘plus-size’ I don’t mind so much but just about everything else gets on my ample, buxom, curvy, voluptuous, larger-than-life tits! There seems to be a distinct gap in the market, but of course it is difficult to know what is hiding on Amazon without knowing what to search for - there are just too many euphemisms!

Great Shape: The First Fitness Guide for Large Women is a book, so I’m not sure whether it’s more of an essay on ‘fat fitness’ or whether it offers up actual plans, programmes and routines to do. Either way, I’m less keen on a book for this sort of thing.

I’ve spotted a video called The Perfect Image that I’d quite like to get my hands on. It’s by Carolyn Strauss a (former) plus-size model and certified personal trainer. It doesn’t seem to be available on Amazon or via eBay, and I’m wary of ordering things from the United States from other sources. I’ll keep an eye out for it though.

Just for the sake of being comprehensive, here are some links to the websites of a couple of fat fitness experts:

Kelly Bliss (US)

XL Emma (UK)
I first became aware of XL Emma from her articles in Just As Beautiful. No video / dvd from Emma (yet?), but she does exercise classes for all sizes of people including one specifically for people who are a size 16+ (not sure if that criterion excludes men), but just in the South West of England.

Okay, so my plan is to stick the three yoga dvds on my wishlists and hopefully get round to buying one or all of them sometime soon. I don’t know much about it and its links with religion / spirituality, but I imagine it would fit in quite nicely with my new, more holistic approach to health, happiness and life.

Knitted bomb

I’m thinking about knitting a jumper. The only slight problem is that I don’t know how to knit properly or follow a pattern. Still, I think I might have a stab at it. I’ve had a book called Big Knits for a few years now and most of the jumpers look quite dated and garish, but there are a couple of plainer designs that I think might be okay. A more modern alternative book of plus-size knitting patterns can be found in Big Girl Knits, and there are other books (and presumably individual patterns) readily available. Knitting has become such a trendy pastime over the past few years, with ‘stitch n bitch‘ knitting groups apparently springing up all over the place.

I only learned the two stitches in my repertoire about five years ago. As I say, I can’t really knit and knitting patterns look suspiciously like they could be the plans for bombs to me. I do wonder whether this is a generational thing or whether I am something of an anathema in not being taught how to knit as a child or teenager.

Coincidentally, Saturday is World Wide Knit In Public Day.

The Tesco mannie was super late today, but there was a slight improvement in the plastic bag front. I couldn’t be bothered counting the bags, but there were fewer things that were individually bagged. I think that the only single item bag contained eggs … and I was very glad they were isolated because they were rather smashed and soggy on arrival. Lots of organic food and healthy food - I ordered a small fortune’s worth of fruit and veg (still not gotten around to ordering a veggie box).

Pemphie update: Woke up this morning with blisters and itchy spots on my right forearm again. Grr.

I also woke up nauseous this morning, even before I’d taken my morning pills. This is getting boring.

 

30 May 2007 May 30, 2007

Filed under: blood pressure, eco-friendly, exercise, immune system, natural living — blogarian @ 9:06 pm

Well, now I feel bad (and rather embarrassed). Julia Hailes commented on my last post. I guess my response is that I don’t want the people I look to for advice to be less than perfect. I want them to be model greenies. After all, if Julia Hailes can’t be green, then how can I? I suppose I am idealistic and overzealous as only a newbie can be. As for the plastic bag thing, it just goes against all my instincts. The statistics are shocking and go against everything I believed. The Worldwatch Institute also notes that neither plastic nor paper bags are good for the environment, backing up Hailes’s assertions.

I think maybe I am a smug twat - sorry!

I imagine that the ideal solution is to use neither, but rather to opt for almost infinitely reusable hessian / cloth / string bags. Anyway, I am going to get hold of the book, and I will read what she says … and I will try to keep an open mind. I promise.

The mere mention of plastic bags brings on feelings of guilt for me. I do the household weekly shopping online from Tesco (yes, that evil corporate monster that is destroying local communities - I feel guilt over that too), and every week my shopping is delivered in gazillions (quite possibly not an exaggeration!) of plastic bags many of which contain just a single item. I just don’t understand why they do this. The plastic bags themselves are transported in plastic pallets. I do return the previous week’s bags for recycling, but there must be a better way of doing things. We plan on ordering our first veggie box next week, so hopefully we’ll gradually wean ourselves off the convenience of Tesco home delivery.

I’ve been doing a little, informal, uneducated eco-audit of my life. I’ve used online carbon-footprint calculators to figure things out, and I am suitably disgusted by my household results. My Dad flies a lot for business and refuses to off-set, because he claims that off-set schemes are seriously flawed. He may be right, but doing something is better than nothing surely? The house I live in is an environmental nightmare. It’s old and poorly insulated for a start. We have an Aga that has two settings: very hot or off. About 90% of the light bulbs we use are not low-energy. Electrical equipment regularly gets left on standby (not by me though). On the plus side, we recycle like maniacs. I’m not sure whether our wood-burning stove is a good or a bad thing. It heats the house well, and the wood is from well managed sources. My understanding is that wood is a carbon neutral fuel, but a quick search reveals some debate on the pros and cons of wood-burning. I don’t drive, nor do I fly. I use buses, trains and my own two feet. I do get driven places though, like my weekly lunch out with Mum or my occasional trip to the pictures or garden centre with Dad. There is plenty of scope for improvement!

Changing the subject: I slapped on the Marshmallow Vanishing Creme last night. It’s quite solid in the pot, and then when I put it on it seemed like there was an oily part to it which smoothed on well, then a solid part which sat on my skin and was trickier to get rubbed in and absorbed. That’s not a very good explanation, but it’s the best I can muster. My skin didn’t feel especially moisturised afterwards. I think I might have to look for a moisturising lotion rather than cream, my skin must be drier than I thought. Suggestions are welcome.

I lieu of doing any exercise today (because it was peeing down outside and the dog was being awkward … and to be honest I was feeling lazy), I vacuumed. It’s so silly that something so small drains me of all energy. These drugs and this illness are a pain. I woke up with more blisters on my legs. This is getting me down a bit. It did cross my mind that my new healthier lifestyle may be boosting my immune system (not good). Alternatively it could be stress or something totally random.

Dad has me doing some unofficial research on natural disasters in South East Asia. It too is depressing me. It’s so much easier to live in ignorance.

BP: 112/91 (am)

 

22 May 2007 May 22, 2007

Filed under: aromatherapy, diet, eco-friendly, exercise, meds — blogarian @ 6:56 pm

I am being good. I did 20 minutes exercise today. I resisted adding (much) bad food to my virtual trolley. I also started an online food diary with FitDay. It isn’t ideal because it’s US based and so finding foods that are especially British/European or have different names is tricky. Also, the measurements tend to be in ‘cups’ and this means nothing to me - I have been imagining a small-ish tea cup stuffed with my food, but as far as I know this could be way out. I shall keep a look out for a similar (free) British food diary service.

I’ve been looking at essential oils, but it’s all so confusing. I do believe that aromatherapy oils can have some effect on mood. It’s been my experience that citrus-y oils are uplifting and lavender is relaxing, but even a cursory look around t’Internet shows that it’s a much more complex business. There is also some suggestion that some oils could boost the immune system, which is not good for me! Not only do I need to figure out which oils would be best for me, but I need to find a decent, reliable and cheap website that sells oils.

Last night - despite my pledge to stop using facial wipes altogether - I ordered some biodegradable wipes and some ‘natural’ sanitary towels from Beauty Naturals. It seems quite a good site, particularly since ALL the other places I looked charged for postage.

Mum picked up my repeat prescription meds today. The idea of stopping taking them keeps creeping into my head. I know that the pred can’t just be stopped, but the Cellcept doesn’t need to be tapered. Logically I know it’s a stupid idea and that I’ll probably have a massive flare up and end up being very ill and on a higher dose than I’m currently on, but I hate the meds so much. *sigh*