Monthly Archives: September 2013

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 ūüėÜ

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!

Book review; Lay Siege to Heaven Louis de Wohl

lay-siege-to-heaven2248lgI think Lay Siege to Heaven is the best of de Wohl’s books. He has always done his homework on the historical context for any of his books and there’s a great deal of history here, but in this book he seems to have a strong understanding of Catherine Benincasa and her mother which gives a strong, three dimensional figure to both women. The books isn’t really about Mona Lapa Benincasa but she is there and you can’t help getting to know her.

Louis de Wohl does not give us a sloppy plaster saint, but rather a woman of fire and energy driven by her love of God and His demands on her.  He treats her relationship with God well and seems to have a good grip on the miraculous happenings from her intersession. I particularly love the way she seems to tell the hospital doctor off for being lazy lying dead in bed. Up he gets Рplague free and alive again Рand sets about his work with the same gusto she had with her care of the plague victims crowding the hospital and town of Sienna.

De Wohl does not shy away from the terrible mess the Church was in, with weak, comfort loving Popes keeping the Bride in her Babylonian Captivity in Avignon. The greed, simony and vice of the whole Avignon set up is made clear by de Wohl who has his information from history, the writings of St. Catherine’s friend Fra Raymond Capua and from Catherine’s amazing and at times rather shocking letters.

For the last ten years of her life (she died at the age of 33) Catherine ate nothing but the Eucharist. She is not the only saint who has been a living proof of the life of the Bread of Life. There’s a touching scene in the book in which the Pope, to test Catherine’s obedience, asks her if she would eat something should he command her.

She says she would obey him and eat whatever he commanded, but she could not obey him if he asked her to keep it down. She had eaten less and less over the years as food immediately came back until she stopped eating altogether.

There is a great deal of historical and biographical information on St. Catherine of Siena as well as the historical record of the years of her life. De Whol has been faithful to this giving the book it’s authenticity.

He touches briefly on her relationship with St. Bridget of Sweden and her daughter St. Katrin of Vadstena (aka St Catherine of Sweden). There’s a moment when she had asked Katrin to negotiate with the awful Queen Joanna of Naples and Katrin still smarting from what had happened to her older brother Karl, refused.

The Church has produced a few very great saints and St. Catherine of Siena is one of the greatest.

A chapel built on a rock in the grounds of the St. Malo retreat centre is named for her and was visited by Bl. Pope John Paul II. Recently a massive flood and mudslide destroyed a lot in the area although the floods came right up to the rock the chapel remained untouched. Catherine weathered the storms that hit the Church in her era, and those storms were great as the Popes were so weak. But she prevailed and at last the pope returned to Rome where he belonged and the beginning of the renewal could take place. There are many times over the 2000 years since Christ established His Church on Peter -Kephas- the rock and the apostles that the storms and flood waters looked to destroy her; but His promise stands firm.

Thinking and speaking and the major obstacle of the phone.

I lose my voice on a regular basis- in fact I have no voice right now – and my husband rather likes it. Cheeky divil! (as m’gran would say). Then there’s the entertaining aphasia in which dishwashers become fish-dishes and disappearing boxes¬†as my dd so eloquently relates. Along with this are the times when the words are there and I can’t get them in the right order to make sense, or when someone is speaking to me and they sound like the parents in Humpf¬†“blah blah blah”. I know they are saying real words but I just can’t make my head work out the meaning. This happens more often ¬†and is much worse when I’m tired or when I’m on the phone.

I slur my words like a drunk and mix them up so I can speak like Yoda.

vintage-hollywood-LUCY-on-phoneAnd what is it with the phone? I think it must be that the only clues my brain is getting is spoken language, and because I can’t see the person speaking, it’s much harder to understand them. There are plenty of times when this isn’t a problem at all, but at other times I have to really concentrate hard to understand what someone is saying to me and sometimes I say something banal in reply because I just don’t really get it.

I am not sure why, but for long periods of time I can behave like a sane person (my children may disagree). I can enunciate and use the appropriate vocabulary for the occasion. I sometimes have the skills I had when I worked, taking messages, handing out complicated information (in two languages) and generally looking and sounding efficient. Then out of the blue – it’s all gone. Worse still, I can’t always tell beforehand that it has gone , so I’ll answer the phone and be struggling to make sense or understand the other person. ¬†The fish-man can phone and I am struggling to remember what a fish is, let alone whether I want to order any.

My children are remarkably patient. My husband has a wicked sense of humour over it but that keeps it from getting too scary. I still tease him about the night he came home to find no dinner cooked and me unable to string a coherent word together, let alone a sentence. He looked at me with that face he does and said, “I’d better get a takeaway.”

I’ve got an appointment with a speech therapist in October. She’s supposed to be assessing me for some kind of larynx dysfunction. We’ll see what happens there.

THIS SITE on Dysautonomia has just been shown me. It’s pretty good, clear info on the joys of having this silly illness. All I would say is the advice about salt should be taken with extreme caution; salt is for people with neurally mediated hypotension and low blood volume which usually manifests with narrow pulse pressure. Those of us on the other end of the dysauto scale with hyperadrenergic stuff going on; hypertension; or like me rapidly fluctuating blood pressure, and wide pulse pressure (had one of 80 recently YIKES!) should not be taking salt.¬†unless a doc has noticed sodium issues and that needs proper treatment anyway.

I do get salt cravings- I know this happens with other dysauto folks too. It is more likely due to electrolyte imbalance than a genuine need to grab the Marmite. Try Diaoralyte instead m’dears. (Marmite tastes better…)

Thinking Love, Little Lessons; Alfred the Great

AlfredI’ve put a new lesson pack up. It’s a 24 page pack following Alfred of Wessex by Frank Morris. I’ve added extra historical information and there’s mapwork and artwork to be done.

There’s a genogram to complete – a simple one as an introduction to this process.

I’ve added a timeline and a couple of journal pages at the back. You can click on the picture or HERE TO GO TO THE LESSON

Don’t forget to look at the other lessons including the FREE STUFF

The Alfred pack is ¬†only $2.00 so it won’t break the Home Ed budget.

Meanwhile I’ve just learned that the Govt of the Netherlands are out to trample the intrinsic human rights of families by banning home education. Governments are supposed to protect the rights of the people, not remove them.

You can sign the petition HERE and remember evil prevails when good men do nothing. Although I have to say I disagree with that little saying as doing nothing is not good.

Sign

Talent – it’s out there. Go and see.

I’m not sure I’m allowed to say this, but honestly, my children are quite talented really.

finalrender_cu_001Alex is revamping his portfolio at WESTBURY BISCUIT and it’s looking good. You can click on the pictures and see how they came about. I love the Captain who’s creation you can see HERE. More recently he has been working his way through some Andrew Loomis work so he can get a good handle on drawing figures.

Things in the video games industry are a bit rough right now, but with a lot of hard work Alex hopes to make it onto the ladder when things improve.

Iona has a blog with her friend at Life the Universe and Would You Pass theP1100644 Custard Creams? Iona posts her poems which are always funny. She has also set up a place to show her cakes as her business is officially launched by the end of next week. See her creations at Iona Rose Cakes.

I am being a proud mum, but you have to admit – they are good at what they do.

Home education; Simple Archimedes experiments

The children are reading Archimedes and the Door of Science and then following along with this lesson pack on Archimedes. Along with some questions and mapwork and a little Greek there are some basic experiments looking at some of the rules Archimedes discovered.

P1000133Even though the book and lesson pack are aimed at children Ronan and Avila’s age the experiments can be done by younger children too so Heleyna joined in with them. The first one looks at buoyancy and viscosity. ¬†They filled a bowl with clear water and salt water, oil and syrup and then observed how the liquids separated. The they gathered some objects; marble, grape, cork and so on and dropped them into the bowl to see if they floated or sank and if they sank how far they sank. They were to write their observations. As a short extension we looked at emulsions. Mix the oil and water quite hard. Left to settle the oil and water separate again.

P1000136Then we make a hydrometer. A beaker is filled with “layers” again of water, sugar water, salt water, and cheap vodka (we have a bottle of cheap vodka for science of various kinds and for colour mixing for cake painting) ¬†Then take a test tube and fill it with P1000137beads, beans etc – cork the top and place it in the beaker and see how it behaves.

After that we filled the beaker to the top with water and looked at the curve the water makes at rest.

Finally we did the displacement experiment. We filled a beaker with water and put it inside another container. Then the children added marbles to the beaker and measured the water that spilled into the ¬†other container which told us the volume of the marbles we’d placed in the beaker.

Home education; freedom of the soul.

We know only too well the sorry spectacle of the teacher who, in the ordinary schoolroom must pour certain cut and dried facts into the heads of the scholars. In order to succeed in this barren task, she finds it necessary to discipline her pupils into immobility and to force their attention. Prizes and punishments are every ready and efficient aids to the master who must force into a given attitude of mind and body those who condemned to be his listeners.”

The Montessori Method, Dr Maria Montessori 1912

This paragraph follows an explanation of slavery. Montessori saw clearly that the school system in which a special bench that forced a child’s upright posture so they could sit all day and be talked at by a teacher, and go home saved from scoliosis, was all wrong. Of course, the doctor notices that children who are allowed to move around and find their own ways of learning are not in danger of twisted backs in the first place.

She finds the system of punishment and reward petty (red marks, detention and stickers are not designed for moral growth but merely conformity) and points out that without heroism – that is the will to do what is good because it is good – then corruption and cowardice are the results.

I think a brief look at our politicians clutching their Oxbridge degrees in one hand and what amounts to an allergy to telling the truth on the other, has to be a prime example of what Montessori warned us.

All parents have a right and duty to the education of our children, and we most definitely need to ensure they learn right from wrong. The tyranny of relativism was a mere yapping puppy in Montessori’s day. The Enlightenment had already brought some darkness in that area but it hadn’t grown to the proportions our poor children are faced with today.

Education is more than leading the child out. The child must grow and mature and as each child does this in his own way we can’t force understanding on them all at a certain age. Their age is mostly immaterial to their growth, maturity and ability to learn.

As Catholics we have a theology of the person that is deep and well considered. We know that the Sacraments give grace and so we get our children baptised but we also know that while the missing grace of Original Sin is mended by the graces that come with baptism, there is still the scar – the concupiscence – that we must all deal with. We tend to bend towards sin. But spend any length of time with children and you’ll notice that while they might need good guidance, boundaries and sensible discipline, they do have a strong sense of justice, if not mercy. Young children, particularly those under 7 or 8 – the age of reason, need close adult supervision to help form their conscience and curb tendencies to cruelty or meanness. We teach them to share, be gentle with others, and how to listen and basic safety.

Without this early formation children often lack social skills, basic kindness and even language. A classroom with at most two adults to thirty 4 year olds is not the place to do this basic learning; and that’s before you factor in the bizarre targets of the National Curriculum!

There is a cultural view that targets, exams and state provision are the be all and end all of education. I’ve even heard of parents who refuse to work with their OWN children when they can’t get the school placement they want, because they insist the state should provide.

Then there are parents who brag about how their child got A*s or whatever, in exams, but seem to have missed that their child is miserable, angry, incapable in social settings and lacking basic morals.

It’s well past time to change all this. When we consider that Montessori (and Mason) were writing over 100 years ago we look pretty dumb that we still haven’t set about changing things so that our children get a genuine education.

I was so wrapped up in the school model of education when I first began home education that when my children began to read books as Charlotte Mason would have them do, I got restless thinking that just sitting there reading wasn’t “doing” anything. How could I possibly know that my daughter was learning anything while she sat with a cup of tea in one hand and Notes From the Underground in the other?

But then I think it was C.S.Lewis who said that his best education came from being left to read the books in his uncle’s library. It took me a while to realise that when the children were “just reading” that they were learning. They expanded their reading and vocabulary. For Iona it helped her writing fluency and did more to stop her reversing letters and built up her general knowledge better than all those worksheets put together.