Sunday, November 20, 2011

Comfy underpants

This one is a bit more for women who will know what I am talking about. Comfy underpants are a bit of a holy grail among women, so I wanted to share with you my story of finding a pair of truly comfy underwear.

For the uninitiated (by which I mean blokes) it's important to know there are only 2 kinds of women's underwear: 

Granny pants

Granny pants look like something your grandmother would have worn - heck, they look like something she might have made at home herself. They sit approximately 2 sizes too big. They come up over your belly button & extend to your knees. And they are not comfortable. The Bridget Jones movie got that wrong - they just aren't. Mind you the second type of underwear isn't either. 

Ooh la la undies

Ooh la la undies look really sexy on the rack, before you put them on. They might even look sexy on. They are a tiny piece of synthetic (awful itchy nylon pretending to be silk). If we could afford silk ones, I'm not sure we'd escape the next problem: Ooh la la undies feel 2 sizes too small & creep up your bum during the day so you end up having to "discretely" pick them out of your butt crack twice on the way to work, on all of your breaks at work and at least twice while you're at your desk. On the way home you've usually just given up & are ignoring it.

It's about this point some of us have given up & gone for g-strings. I'm not going to give them their own category because they are really just another version of Ooh la la undies for those of us who've given up. G strings already sit right up in your butt crack so once you get used to the fact that they're there it's just a case of ignoring it. You can pretend all you like that it's for fashion, or that it's because you don't want VPL (Visible Panty Line), but really, it's because you've given up.

I gave up once. For quite a while I wore those little things. They do dry quickly on the line. And I suppose in terms of resources you could say that the small amount of fabric required to make that piece of underwear is about 5% of what goes into the granny undies. So, they're environmentally friendly knickers.

Blokes do not seem to have the problems women have with underwear. You see the selection of blokes underwear - it's all the same. Basically you've got either jocks or boxers. As far as I can tell boxers are kind of like going commando & jocks are for the man who prefers a little "support". But they just don't have the same issues women do - it's basically white, grey or navy.

So this time I saw a pair of undies that were clearly for women but they looked like blokes underpants. They even looked as though they had stitched support for a *cough* "package". I walked away (actually I was online shopping, so technically I clicked away). I can't wear boys undies. It's just wrong. But I kept coming back. They looked just like boys underwear. Boys seem to be really comfortable. *I* want to be really comfortable.

After a while I began to cave. I knew. I knew they were going to be properly comfy underpants. So I bought a pair. Just one. Just to try.

You know what I'm going to say don't you? Of course they were comfortable! The most comfortable pair of underwear I've ever worn. And yes, I went straight back online & bought enough to never have to wear uncomfortable underwear ever again. And I don't care if they look like boys underpants. I just don't. I'm going to wear my boy pants with pride!

Tuesday, November 15, 2011

Sunshine & worm poo

From a few posts back some might remember me talking about my worm farm.

That worm farm has progressed into two - the worms have multiplied plentifully over the months, it's been quite a population explosion. And I've been enjoying putting our food scraps out into the farm, rather than chucking them in the bin. Makes you feel all virtuous ;o).

 It's been a few months & I realised it was definitely time to start harvesting some of that lovely worm compost. Vermicast they call it. All the sites on the net talking about worm farms talk about this aspect with real pride - it's clearly something to look forward to. The chance to reap what you've sown, the fruits of your labours...the prize.

Nowhere on the net does it tell you that worm poo or vermicast as devotees lovingly call it, smells just as bad as poo from any other creature. Pongs. Reeks. Stinks. I thought my cat's poo was pretty stinky some days. Nothing prepared me for the smell of poo from my worm farm.

I'd been so clever - lured almost all of the worms down one end of the bin so I could get to the "compost" at the other end. A few remained, which meant I had to hand pick through the smelly, smelly worm poo to recover them & pop them back in with their cousins (well  they must be fairly well inbred by now. I bet not even those first 1000 worms all came from different families).

A half hour later I had about six litres of "vermicast" & was pretty much over the smell. I had to get out. I had to get out immediately.

It's not a lot of compost - not when you have rhubarb & fruit trees. On the other hand I don't know if I could handle any more worm poo. I'm not really looking forward to next time. But there will be a next time. That insane feeling of virtuousness I get from not putting food scraps in the bin & recycling them into something for my garden demands I keep this worm farm thing going. Bokashi is just not quite the same somehow (though so much less smelly!).

It's not all sunshine & worm poo. I haven't been doing so flash lately & realised one of the side effects of my pain medication is feelings of intense sadness. Well then, that could explain it I guess. You can't have everything. Hopefully it will settle down with the rest of the side effects.

Tuesday, November 8, 2011

Patience

Today I called Access Ability. I don't know anything about the service, but the disability people said I needed an assessment to see what sort of things we're going to have to think of with me & here at home, to make life manageable. So I called. I left a message for the nice voice on the answer phone since she wasn't there.That all seemed to go pretty normally.

A little while later I got a call back:

"Hi this is ***** from Access Ability".
"Oh hi *****".
*waits for a clue - like "how can I help you" - anything*.....um, I'm calling to arrange an assessment....". 
"Are you a client of ours?" 
*thinks - I've joined so many things, did I join this?* "No, I don't think I am". 
"Is it you who is disabled or are you calling for someone else?". 
*Oh, I know the answer to this one!* "Me, I'm disabled" *Oh my God. I'm disabled. How weird does that sound?*.
"There is a process to go through".
"Okay, I just rang because the disability people told me I should call you".
"There is a process to go through - what is your disability?".
*That was officious - what did I do wrong?* "I have two. Spondyloarthropathy & Hypermobile Joint Syndrome".
"There is a process to go through [yes, I got that impression, I'm beginning to wonder what it is...], you'll need a letter from your doctor saying what your disability is before you can access our service".
Okay...I have to prove it. That all seems fair. I figured that would be part of a form filling out thing anyway...except I hadn't really thought that far ahead, because I still don't know exactly what it is Access Ability do apart from give assessments.
"I'll send you out some forms to fill in - you'll have to provide some paperwork from your doctor saying what your disability is"
*ok, so I get it, I really have to prove it....wonders how many people spend their days calling up agencies pretending to be disabled just so they can ask for an assessment* 
"What's your address"
*gives address*
"I'll send you the forms, you fill them out & send them back".
"I hope your day improves for you". Yes I am just enough of a bitch to say it. 
"My day is great, thank you".

Good for you. I'm so sorry for the people who have to talk to you today. If they're ringing you to ask for help, then it's not such a good day. They've just discovered their lives are not what they thought they were going to be, that they need help to manage day to day. Their world has been turned upside down. They are lost and confused. They have no clue what they need. They don't know who you are, or why they need to call you. They don't understand why you are being so rude. There is a way you treat people with a disability: it's called the same way you treat everyone else.

Anyone with a basic understanding of disability is aware of the experience of powerlessness that being disabled can create. Why on earth would you treat someone like this?

As for being "a client" - if you were a store I would not shop there. I would go somewhere else. If I had any choice whatsoever in the matter I would not use your service I would choose another.

For the record, I worked in mental health support for 4 years, was on the phones at Lifeline for 5 years. I assisted with the Total Mobility Scheme at my regional council, answering the phone to people who "wanted an assessment". I can do this woman's job with my disabilities, standing on my head. If she dislikes it as much as it sounded over the phone. I will be very happy to have it. It would be an absolute walk in the park for me & and an absolute pleasure besides.

Access Ability, if you have a think & decide you'd like a new receptionist - may I apply for the job? Your clients will be so well looked after & absolutely delighted with their contact. They definitely will not be a puddle of tears after making the call, unless it's because finally they spoke to someone who was kind.

Wednesday, October 26, 2011

Pain

Since I last posted I have lost someone, a gorgeous soul, a very dear lady who I adore.

I am lucky to have a life filled with some very special people. Angels. The pain of knowing that they suffer & of losing them is mitigated only by the absolute joy of having had them in my life.
xxx

This post is about every day pain.

This weekend I put my back out. It's pretty crippling, no two ways about it, once your back is a mess you really are screwed. This is the third time in less than a month though, which makes it harder.

One of the problems with hypermobile joint syndrome or EDS (III) is that joints go "out" all the time. I sprained my wrist twice yesterday. I did it again today. That's just part of the package. It hurts.

And that's where the fun begins. This isn't just a condition where joints go out. It's about pain. It's about all the time pain. Not just when the joints go out - joints are always going out. I hurt all the time. Gravity is not my friend. Lying down a few times a day helps to decompress the joints that are otherwise compressed from being upright most of the time.

So, what do you do when for five years you've been told you have Chronic Fatigue Syndrome (CFS/ME), there's nothing that can be done about it, and then suddenly you're told - well actually you have a chronic pain condition. And if we manage the pain then you'll probably get some relief from the CFS/ME. I can tell you what you do. The moment that fatigue is a little less than it was you begin to do everything that you haven't done in five years. Which is great. Except...you hurt yourself all the time doing it.

The reality begins to sink in that you're merely trading one set of limitations for another set of limitations that look remarkably the same - but that are topped off with extra pain.

And then you have to once again start the grieving process for the life you don't have. And the life you won't ever have. You have to learn to accept the new one - this new one that is almost exactly the same as the old one that you had already accepted. But because it's different, you have to grieve again. It's in the rules.

Not only is there the physical pain. There's the emotional pain of grieving. For everything you can't do, for everything you will never be able to do. For the hope you had of getting better "someday".

And perhaps it's not so strange that you grieve for all of the other people who are suffering from various disabilities & who have lost the lives they expected, wanted or hoped to live.

Thursday, October 6, 2011

Ink Pink does the Happy Dance

About 3 months ago I saw this awesome doc. A conventional one, at a real hospital & everything.

He didn't bat an eyelid at the whole ME/CFS & the MCS thing (even though I had a carbon filter mask on). He did a very thorough examination & then started telling me what was wrong with me...

He called it Central Sensitisation. It's something you can find out about by googling, but basically the way I interpret it, it means that my central nervous system (CNS) has gone ballistic & started producing really weird symptoms...like all the symptoms that go with ME/CFS, and MCS, among other things.

He talked to me about pain...Pain, what pain?...I don't have pain...well, not really, I mean it doesn't count. I mean, it's normal, isn't it? I just sprain things occasionally, I don't worry about it or anything...medication? No, I don't worry about that. Not unless I'm desperate. Even then...

Apparently because I have had this joint disorder (Benign Hypermobile Joint Syndrome - benign doesn't mean what you think it means) forever, I have had a whole lot of pain all my life. Because it's always been there I thought it was normal. And because I thought it was normal I ignored it. Meanwhile (it gets slightly more tricky) the neurons in my CNS got really good at firing for pain signals. Basically my CNS got a PhD in pain while I wasn't looking.

So. The doc tells me off for not taking pain meds & asks me to take then 4 x a day. Sure Doc. No problem, I can do that.

So I do. I take the pain meds. And when he tells me to increase them, I shrug my shoulders & increase them. He tries me on a few other meds that are supposed to help settle my CNS (down boy!) but they make me pretty ill so we lay off those & stick with the pain meds.

In 2 months I suddenly realise...my MCS isn't as bad as it was. I can go into a store without getting sick! And my ME/CFS! I can go out in the garden. I can "do stuff". I have more energy. Surely this isn't connected to the pain medication...

On my next visit to the doc he's looking pretty smug as I tell him how my whole life is turning on its head. I was sick. I was very sick. I'm beginning to realise that each time I start to feel fatigued, or each time I have brain fog, I can take pain meds & my symptoms will go away. I learn to scan my body to check for pain when I get fatigue or brain fog. I realise that every time I have these symptoms my pain has ramped up without me noticing.

This doctor has seen people like me before. He's seen people with MCS. He doesn't think we're freaks. He doesn't think people with ME/CFS are malingerers. He thinks I am funny because I am a walking talking textbook example.

Now I'm out in the garden. I'm doing housework. I'm out walking in the gardens, walking down the main street in town. In 3 weeks I go from needing a full respirator to go to my GP clinic to not even needing a carbon filter mask. I am beginning to live like a "normal". In just 3 months of taking nothing other than pain meds. No magic detox diet. No miracle treatment.

Everything (well ok, maybe not everything) that has been wrong with me over the past few years comes down to one simple thing. Pain. Talk about holistic. Every symptom I have he was able to track back to this one cause.

I'm not cured. I'm still sick. But I have this awesome feeling of freedom. I am recovering. I am certain this is going somewhere good.

Thursday, September 22, 2011

The best risotto you've ever eaten

For anyone who tried  "Chicken soup for the sensitive soul" or is planning it, here is the advanced version:

The best risotto you've ever eaten

Instead of turning the stock left over from cooking the chicken (see chicken soup for the sensitive soul) , we're going to turn it into an orgasmic risotto.

You need to heat up the stock (I'm assuming that after you cooked the chicken, you froze the stock & ate the chicken. If you tore some meat off the chook & put that & maybe even some bones in you have an amazing stock ready to use). So get about 4 cups of it in a pot & heat it up.

At the same time you're heating the stock put a cup of arborio rice in a decent sized pot with a bit of oil & cook it for a couple of minutes.
If you're a 'normal' by all means fry off some diced onion before you start on the other ingredients. I don't because of the whole sulfur thing. If you can tolerate sulfur you're probably going to be able to make this even more awesome by adding a small amount of white wine (1/8-1/4 cup).
Dice some pumpkin into 1cm pieces, and chop some spinach.
Chuck the pumpkin & 1 cup of the warm stock in with the rice.
Wait until the rice has absorbed most of the stock and then add the second cup.
Do the same again with cups 3 & 4 of the stock, waiting between each for the stock to be absorbed before adding the next lot.
After you've added the fourth cup of stock put in the spinach. You don't want that to turn into over cooked mush, it's nicer this way.
While the risotto is still wet, but everything is cooked (rice should be al dente), take it off & it's ready to go. And it is divine. So prepare yourself.

I really think this recipe is going to work well with really decent tasting mushroom in it, but I have tested myself on mushrooms yet so I haven't tried, but you will know what I mean & if you are a mushroom person by all means go for it. In fact you could even switch the pumpkin for mushrooms. It would be oh so tasty. Especially with some truffle, but I'm guessing most of us don't keep that in our kitchen. I wish.

You can top it with parmesan if you can tolerate dairy. I like to toast some pine nuts just briefly & chuck those on. But honestly this stuff is so good it doesn't need any mucking about with. I'd just bung it in a bowl & eat it.

Don't think you can get away with using a carton of chicken stock. It will not be orgasmic risotto. It will be very average risotto. I will be able to tell.

One you've tried this one, let me know how blimmin' awesome you thought it was. I know loads of people are making the soup, but this is a whole new level for your tastebuds. Yum.

Saturday, September 3, 2011

Les oiseaux & le pain

This morning the birds at our house are enjoying what I would like to think of as a "French" breakfast, in spite of its lack of coffee or chocolate. I remember fondly when fruit & bread would have seemed a perfectly civilised lunch at our house. That was before gluten intolerance. Still though, I am enjoying thinking that our birds are treated to the highest class of food in the neighbourhood.

They seem to think so at any rate. Brownie (the name we've given our frequent blackbird visitor) was there even before I had finished cutting up the pear cores. If I don't cut it, Brownie will steal the entire core, leaving nothing for Chunky (Chaffinch) nor any of the assorted (and unnamed) wax eyes.

I am beginning to think the physiotherapist I went to see the other week does not know as much about hypermobile joint syndrome as I would like to think she does. "Push up off the floor, breathe out & let your back slump toward the floor...". My vertebrae promptly slid into unaccommodating positions. I would be tempted to tell her "you broke it, you bought it", but the ramifications are too serious.

If there could possibly be a good side to a soft tissue lumbar injury then it is that I finally broke down & confessed first to my husband & then my GP how severe my pain actually is. The poker face usually maintained by my GP slipped briefly into amusement when I described my reaction to the tricyclics that had been proffered to reduce my pain. "I have never been so depressed in all my life", I wailed, as she smiled on.

It was all seriousness after that, but the letter from the latest specialist must have been "special" indeed as the GP decided to break out the "good" drugs.

As we left the clinic we passed Dr Arse, smiling kindly at us. A broken woman, I returned the smile. It turns out he is the registrar my husband saw & thought was really good. Since it was "random act of kindness day" I decided to forgive him. Perhaps "Arse" was a little harsh. Besides, it isn't like there aren't other health professionals for me to actively detest.