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.

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.

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.

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.

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.

Ranty pants goes to the doctor

Today I went to the doctor. It was just to talk about the fluid I've had in my ears for 2 weeks. But he decided to take the opportunity to play "Twenty Questions".

"So, how's your pain?"
"It's worse than ever" I reply.
"What's changed lately?"
"Well, nothing really. I have hypermobile joint syndrome."
"Yes, I see that. But you would have known about that all your life, right?"
"No."
"Oh well. I wouldn't worry about it too much."

Really. I shouldn't worry about the severe & chronic pain I suffer every single day. About my pelvis & upper back subluxating at least once a day. Huh. Good to know. I wish I had known that when I was spending the last few days in tears scared I can't breed because my pelvis won't cope with pregnancy, that this condition is inherited & the drugs I am on are not conducive to baby-making.

"Well, I wouldn't if it didn't hurt so much", I say. "I'm really only here because my ears have been blocked for a fortnight."

"Yeah, well it says here benign hypermobile joint syndrome, see?"

You're an Arse. Don't you know the difference between hypermobile joints & benign hypermobile joint syndrome? One means you're a little bit more flexi than average. The other one stalks you like death. It changes the way you live your life. It's like the difference between CF & ME/CFS. It's the difference between a headache & migraine. A cold & pneumonia. Do they not teach you anything at school these days? You are an Arse & if I didn't need you & your prescription pad I would tell you that you are an Arse.

Maybe you can tell I don't really like doctors all that much. This one had a band-aid on his finger that looked like it had been there a week; fraying & dirty. He asked me about my meds but didn't know any of them when I told him. When I stood to leave he didn't move toward the door to see me out. I waited politely & then opened the door & let myself out.

Extreme recycling

Recycling at our place (with help from Dad) has really taken off. At our new home I've been amazed at what we can recycle. Back living in an apartment in The Big City we'd separate our waste from paper, plastics & glass & that seemed alright. But I've attained a whole new level of recycling now we've got a spot with a section. It's a level I like to call "extreme recycling". Yeah.

The bird feeder

Crusts & mouldy bread rates pretty highly with the birdlife at our place. They also get our apple & pear cores (and any other fruit bits), fat (skimmed from the top of the Chicken soup for the curiously sensitive soul). Cooked rice that has been sitting in the fridge for a day too long is very popular, as are the flax seed innards from my recently worn through heat pack.

The birds do very well out of this deal & I have to admit to supplementing their diet with seeds bought from the store as well as jam. But mostly they just eat what we have left over. They get a feed, I love watching the birds & so does my cat.

The worm farm

The worms eat pretty much anything the birds don't. Except meat & dairy. Which is fine because we don't eat those either, except for the chicken. The worms enjoy the vege trimmings & peelings. Vege that sat in the fridge a day too long they love. Egg shells are good in there too. Plus this is where any paper or cardboard that has already been recycled (e.g. egg cartons) go. The worms are going gangbusters, to my amazement. I honestly thought they'd all be dead inside eight weeks. The worm farm is in a shed out the back. I don't think they'd have coped with the snow the other week.

The worm farm itself is made from recycled bins that were left at the property when we moved in, with a bit of info on how to build a worm farm from ye olde internet.

I got a council subsidised "Bokashi Bin" as well, but the worms are developing quite an appetite & I might not be using it much longer.

After that we do the glass/plastics/paper/cardboard separating & what's left is not much.

We've also (thanks to my Dad), had some joy recycling some other bits & pieces.

So far our "new" house has gained:

•  1 recycled rimu lounge floor
• 1 shower door, circa 1970s. It was in the family house when we moved in & it wasn't new then. It's now our shower door.
• 1 glass panel door, origin unknown (that is, Dad was asked to store it by someone who has never returned to collect it. Dad can't remember who that was). The door is not an exact fit for the doorway. Actually there's an inch gap at the bottom.
• 1 weather proofing strip. I can't remember how long Dad said this had been sitting upstairs at the shop. Maybe 10 years.

Dad's threatening to clean out his garage. Better get out my shopping list.