Dysautonomia – what did you say that was?

Global Dysautonomia Awareness Month copyHere’s quite a good explanation of the basics of dysautonomia. I notice she includes CFS (chronic fatigue syndrome) in the list. There is good science behind the idea that fibromyalgia is dysautonomic as it looks to be a form of hyperadrenergicPOTS. But I wasn’t aware that CFS has been included. It’s not that surprising though as some doctors (one in Australia that I can never remember the name of in particular) insist that up to 96% of patients with a dx of ME/CFS have some form of dysautonomia. But as Ramsay felt that a dx of dysautonomia meant a patient couldn’t have ME it’s a bit confusing.

Symptoms are very varied to the point where it has been said that each patient is different and certainly my Cardiologist agrees with that.

Death rates have not been measured although it seems to have a similar rate of suicide to other poorly treated chronic illnesses and there are a number of reports of sudden death similar to those associated with ME/cfs. As many of us have serious lung and Blood pressure problems it doesn’t seem that surprising that deaths happen. Studies in ME/Cfs show that heart failure is the number one cause of death with suicide coming in joint second with cancer – some more unusual cancers being oddly common among ME patients.

Talking anecdotaly I have come across a few people with a single diagnosesstanding usually POTS or IST without blood pressure problems or anything else. The symptoms of POTS and IST can be pretty horrible on their own but there’s definitely a difference in degree compared to those of us with ME/Cfs and/or fibromyalgia to go with it.

Most people I know with ME have some kind of orthostatic intolerance. Mine is pretty bad these days. Can’t stay upright for very long without becoming nauseous, light headed breathless and blacking out (pre-synocope).

dys5I don’t know what the end result of any research will be. There are tentative (poorly funded) moves to separate out the various forms of ME to get more accurate dx and hopefully treatment. It will very likely show that dysautonomia is either a form of ME or caused by ME or isn’t ME, but is dysautonomia.

One day we hope there will be suitable treatments that can put us into remission. But so far, that just isn’t the case.

Saw a GP today and hit the “they don’t know what to do” wall. Back on steroids but feeling pretty fed up. She did say she’d talk to my usual doc but she really wanted to refer me to another (insert very rude word here) neurologist. I refused.  Presently sofa’d – hope the steroids help.

Malala – a true heroine.

Watch as Malala Yousafzai tells Jon Stewart what she planned to say to the Taliban man who came to kill her.

She was shot two years ago when she was 14. She nearly died but the British army flew her out and brought her to my local hospital where she was treated and is looking very well!

Now 16 she is an amazing young woman.

The complete interview is here:

Making the Montessori equipment do more than one job.

Looking at the Montessori online shops like Absorbent Minds it would be far too easy to spend an absolute fortune making sure every lesson on every album ever downloaded was covered as prescribed. So here’s what I’ve been trying to do.

P1010653I have not gone back to the online shops. What I don’t see can’t tempt me. I remember that I still owe Josh money for the Montessori stuff I did buy!

I did work out over a long time what we needed for the widest possible work using the least possible equipment.

So. I have a lot of bead stuff. They are good for all the math work the three children do, including the Life of Fred books. They are also useful for geometry.  Heleyna (and the others) can make triangles, and other straight sided shapes with the bead bars.  She can also make angles with them. This means I don’t need the rods and have used a free download of geometric sticks for extensions from Livable Learning.

I’ve laminated a lot of the sticks and added small magnets for work on the whiteboard. If you do this a tip if not to put the magnets too close to the end

P1000170of the sticks as you need to be able to overlap the sticks for making shapes and some angles.

A lot of the “flat” Montessori materials are available as downloads to be printed on card and/or laminated. The decisions I have made on this, have been with and eye to the sensorial aspects of Montessori. I have bought things that are important for how they feel as well as how they look so the children learn through their senses and learn to train their senses in things like texture and weight.

I haven’t bought a lot of sensorial materials so I want the children to use other things around the house for that. I bought a set of glue jars  which can be used in various ways; add different beans for different weights. Add hot and cold fluid for baric touch (it’s not quite the same but it works). Different smelly things can be put in them and by  filling them differently with orange lentils they make sound shakers.

We use the trays as work space. Heleyna, in particular is an “all-over-the-place” kind of person. The little rim of the tray gives a gentle boundary to her exuberant nature as she learns.

prismsThe box of prisms for the brown stair can be adapted as spindles and rods for measurement of angle. We’ve also use them to make a narrow line for Heleyna to walk along to practice balance.

They are 1 cm² by 10 cm so they make great little measuring rods too. Heleyna has also used them as building extensions with the cubes and brown stair.

I’m sure I’ll have more multi uses as time goes on.

As I have the hollow cubes instead of the pink tower we can use them not only for tower and stair models and extensions but for pythagorian rules and for measurement of volume. They are also good for listening skills as the children can make the tower with the hollow side outwards and then blow into each cube listening for the faint change in tone as they blow from small to large and back again. We also use them for listening by banging them with a stick for different tones. Heleyna like to play a hide and memory game with them too. Memory games are very useful, especially for children with dyslexia.

P1000172Finally there’s a great way to save money on Montessori models by making them yourself from play-doh. We’ve been studying the earth in geography. The layers of the earth model is £10 + at it’s cheapest. We made one out of play-doh.

‘Scuze my dd’s scary stare there!

There’s a lot more that can be made with play-doh; I have big plans :)

Dysautonomia Awareness month

autonomic systemIn the slightly strange world I inhabit I know quite a few people around the net who either have some form of dysautonomia or have one of the many co-mobidities that we have and so know about dysautonomia, even if they don’t have it. This can give me the false impression that everyone has heard of it and at least, has a general idea of what it is.

Dysautonomia isn’t well known and part of the reason is that it is supposed to be rare. The most common form is POTS with NMH; that is postural orthostatic tachycardia syndrome with neurally mediated hypotension. The people with this get tachy when upright and their BP can drop like a stone. A lot of people with this have low blood volume.

fight flightHyperadrenergic POTS is even rarer. We get tachy when upright and our BP will shoot upwards and for those of us on the “combo” end of things it will nose dive and shoot up again. It’s because the normal fight or flight responses are stuck on “ON” mode. This comes with the added complication that while we seem to be pumping out the adrenaline (ephinephrine) which is changed into noradreneline (norepinephrine) it might never really make it to dopamine, or if it does, not much dopamine is made. If it is made the uptake is poor and if the uptake can cope even a little, the re-uptake is bust. This is probably the root of my tremor and possibly the myoclonus too.

The depressed immune system means we have fun with infections.

Then in a small corner of rarity is IST – inappropriate sinus tachycardia. We have tachycardia all the time. In my case it’s around 100 (without meds) when I’m sitting still and can get down to the high 80s if I lie still – but often can’t do that. Upright it can get up in the 150s which is mild compared to some folk.

IST is thought to be a form of POTS but the medical jury is still out on that one. As there is very little research on IST – less than other POTS forms, it seems unlikely we’ll get many answers any time soon.

Other symptoms are brain fog – I hate it – confusion, memory loss, visual changes and auditory sensitivities.

We also get seizures. POTs related seizures are common and horrible. I had a one off the other night – thank God it was a one off. Seemed to be because I was particularly shattered. Not infection related this time. And that’s another problem – we don’t get seizures for one reason, we get them for a load and doctors like to call them “idiopathic” meaning they don’t know what causes them. They don’t respond to anticonvulsants unfortunately, so we are left with no treatment.

Dysautonomia ranges from mild through to severe where people are mostly stuck in bed with NG tube for feeding and sometimes oxygen. On the nasty end dysauto can be fatal; respiratory failure, heart attack, stroke seem to be the lead CoD.

This is a reasonably good article on IST as part of Dysautonomia.

So what does getting aware mean? Well first of all – if you have someone in your life with this disease, say a prayer for them. Be patient with them when they are acting spaced, foggy, tired or just off. Don’t assume that someone who is trying their best to be as normal as possible can keep that up every day. Crash days, weeks and even months happen. Be kind.

If you have money and know a good charity or research thingy then please do donate. We need research if we are ever to get good treatment, let alone a cure.

Archimedes lessons

P1000147Having done some of the basic experiments as part of the lesson pack following Archimedes and the door of science (book here) the children have also made the water clock, which is pretty simple to do. You need to make sure the pin holes in the paper cups are big enough for the water to drip though or time will stand still!

From there they have been learning about Archimedes experiments with number patterns. So we have been making triangle and square numbers and then cube and pyramid numbers. It was a good excuse to get out the bead material and the thousand cube box. P1000165

It’s a lovely way to see and present some mathematical concepts.

The children seem to get more out of the lessons when they can stop writing for a bit and make something.

Heleyna tends to join in with those bits as well, so she’s getting a bit of an introduction via the work her older siblings are doing.

Much fun was had.

Sign

Home Education: Learning independence through spontaneous activity

I am reading The Montessori Method (free ebook) by Maria Montessori.  At the root of her method is the idea that children will find things out for themselves and that they desire and need independence. By constantly doing things for the children the parent or teacher is undermining the child’s ability to learn those skills for himself.

She has an interesting view that those who require servants are lacking in ability. Her view that the person who needs help because he has a physical disability is no worse off than the prince who needs help dressing because of his social status.

We habitually serve children; an act of servility toward them, but it is dangerous, since it tends to suffocate their useful spontaneous activity.

She differentiates between true service of others, such has assisting them to reach the independence they need and servility which is unhelpful at best and demeaning at worst.

She decries the mother who feeds her child without ever attempting to model eating herself or to help the child learn to hold and co-ordinate the spoon.  I think there’s a couple of things that cause this problem – which still very much exists today – and one is fear of mess. I have seen mother’s who can’t abide the phase where the child is trying to self feed and makes a right mess of himself and anything within a few yards radius.  There’s an underlying fear of dirt, I think.

The other reason for insisting on feeding a child who wants to feed himself is that awful modern thing of being afraid the child is growing up and won’t be a baby much longer. I have seen mothers who, can’t stand the idea that their youngest child is no longer a baby and they have decided (often without a reason) that there can’t be another.

Montessori bluntly calls mothers who won’t allow independence “not a good mother.”continuing

She offends the fundamental human dignity of her son, – she treats him as if her were a doll…”

Ouch!

I have to say, however strongly Montessori words this, she isn’t wrong. I worked with a class of children aged 4 to 5 and then the next year up when they were aged 5 to 6 (just before I got ill) and was amazed that most of the children couldn’t dress themselves. I don’t mean difficult buttons or laces, I mean putting on underwear and pulling on a sweatshirt. They couldn’t do it. The post-PE shambles, of trying to get 30 kids dressed, was astonishing to me.

Montessori says;

Who does not know that to teach a child to feed himself, to wash and dress himself, is a much more tedious and difficult work, calling for infinitely  greater patience than feeding washing and dressing the child oneself?

This is true. I am much more able to get the children to do things themselves when I am more with-it than when I’m so tired it just seems quicker and easier to do it myself. But it’s a bad habit to get into and one that takes a great deal away from the child.

I remember my friend telling me how she had picked up her son’s friend from school one day (they were both 10 at the time) and on the way home in the car the friend announced proudly that at school that day they had learned to cut an apple with a proper knife. Her son was unimpressed as he made lunch most days, cutting and preparing fruit, bread and whatever else was required with the right knives for the job and had been doing so for some time.

Children who are allowed to be capable are capable. But it takes time and commitment from the parents – lots of time, lots of commitment, at least to begin with. But soon enough a five or six year old can do a lot for themselves and a ten year old can do a lot more.

If you take the time and teach your children to be independent in what they do, they will more quickly learn independent thought as well, finding things out for themselves and asking questions about what they find.

It’s not the anger, it’s the guilt.

DownloadSomeone I was in a short email correspondence with said that if it should happen that he became seriously ill, he would be very angry. I have to say, I doubt it. I don’t claim to know the inner emotional workings of the man who wrote this, but I do know how chronic illness works, and believe me, anger is a very tiring emotion and therefore not one that is tenable, for long periods of time. I’m not saying I’ve never felt angry or seen anger expressed by fellow Chronics – I have. Those of us who have rubbish or even abusive meetings with doctors will express justifiable anger; and sadly that happens far too often. But that’s just for those times.

The feeling or sense that bugs me much more of the time is guilt. I don’t know how ubiquitous this feeling is among us chronics, but it’s fairly constant with me, and as I think I’m pretty common, I am guessing there are others out there who struggle with it. I am not going to go into all the reasons I feel guilty, nor will I explain those awful moments when it comes to a head and I become a gibbering wreck. You don’t need to read about that.

This is not Catholic guilt. Wish it was – ‘cuz Confession cures that :lol:

No, this guilt is about all the things I used to do that I can’t do. Some of it isn’t just guilt it’s a kind of jealousy of others which in turn leads to guilt; not just about what they can do I can’t, but guilt over the jealousy as well as guilt over not being able to do stuff. Quite a complicated mess for a brain-fogger to handle. Tiring mess at times too, leaving little left for something like anger.

So, how to deal with it.

First – a reality check. Sometimes things are bloomin’orrid and that’s life. So, accept reality. Don’t paint it worse than it is, and don’t run and hide from it. Get down with Fr Fran Fortuna’s Everybody Gotta Suffer and accept. This is easy to write and difficult to do, but it is, honestly, worth the effort.

Second; don’t assume that other people are cross that you can’t do what you used to do. Projection is a bad coping mechanism and is more likely to make the picker-upperer (there’s a word that just needs to exist) of your lost ability more cross with you than the business of picking up where you left off.

I know that many people are not projecting – that their friends and even family do tell them they are lazy, need to try harder, pull themselves together. The most difficult thing here to to stick with reality and accept that they are the one with the bad attitude and it isn’t your fault.

Third: Don’t give up because of the silly guilt. There is some mechanism in false-guilt that leads to fear. So, the temptation is, to throw up your hands (or just one if the other one won’t coordinate) and cry “Forget it! I give up!”

Take the good days and enjoy them. I’ve had odd days when I can play the piano again and even cook a meal once in a while without burning something, leaving something raw, filling the kitchen with smoke or killing any of the kids.

Lastly but most importantly of all be grateful.

If you just threw something at the computer screen, take it back and think a minute. There are still good things in life, even with chronic illness. I’m not saying pretend things are better than they are – but just be glad for the things that are good.

If you have reached that awful point where you just can’t see anything good then look for something small – a flower in bloom, a slice of cake or even the smell of rain. Anything that holds something good in it.

Finally it’s worth remembering that for people with ME/cfs and some forms of Dysautonomia that emotions can get a bit weird. Mood is heavily influenced by things like how our adrenals work, serotonin uptake, how malnourished we have become because of a busted metabolism and the generally busted HPO axis. This, coupled with mood changing drugs such as steroids can have quite an effect on our coping skills.

All we can do is keep at it. One day at a time – and on bad days one hour at time.

PS. I think I mentioned in a post where I’d seen the Cardiologist that I had decided not to have the tests for hyperadrenergic POTS done because they are very complicated and need lots of time and very skilled people.  Jackie’s very informative post here gives you the info on the tests.

ENDNOTE: I may also have mentioned that I am now on 10 mg twice a day of Ivabradine and as the max dose is 7.5 mg twice a day I spent a long time in the hospital pharmacy with my son.  Well, first repeat prescription request has hit the wall as the pharmacist is having the heeby-jeebies over handing the stuff over. I had written clearly on the the request that this was the Consultant Cardio’s decision and had been okayed by the hospital pharmacy and I assume the letter is in my notes by now – but it looks like there’s still some sorting out to do. I only hope this isn’t going to be an issue every time I need a repeat.  No anger or guilt – just frustration!