Monthly Archives: February 2013

On the last day of Papa Benedict’s Pontificate; from Divine Office..

God of hosts we implore, look down from heven and see. Visit the vine and protect it, the vine your right 558116_10151282141086814_6972549_nhand has planted.

Men have burned it with fire and destroyed it. May they perish at the frown of Your face.

May your hand be on the man you have chosen, the man you have given your strength.

And we shall never forsake you again; give us life that we may call upon your name.

God of hosts, bring us back; let your face shine on us and we shall be saved.

Glory be…

Final blessing.

Thank you Papa.

Entertaining dysphasia/aphasia in Fibromyalgia/cfs/ME/dyautonomia POTS – “Shambles”

One of the more entertaining symptoms of “Shambles” the name I have given my disease, is dysphasia. That is slow, slurred speech, word block and the most bizarre word replacements. This is quite entertaining to the kids, and I have a laugh too – because it is funny, but it’s also annoying and at times down right embarrassing.

Post-wedding crash has not been nearly as bad as I was expecting. I had planned for it so there’s been no home ed this week. However the children soon find stuff to do and I am pleased to see how much they read. But I am shattered and could in no way hope to home ed this week.

Back to my entertaining aphasia. I caused great hilarity in asking Roni to fetch my “homing device” when I meant mobile phone. No, I don’t know where “homing device” came from.

My default word seems to be “dishwasher” for some reason and as I try and correct it I can come out with all sorts of gibberish.  The dishwasher meanwhile got called “the disappearing box” for some unknown reason, while a kitchen is a pilchard house.

I had a whole list of bizarre and unheard of words for a watering can.

I don’t have problems understanding other people even when I’m really shattered but producing coherent language can be a right challenge at times. It’s a not often noted symptom of “shambles” but there are a lot of people who report having it. High res SPECT scans and high res fMRIs are showing more and more that Fibro and ME brains have some odd damage and lesions in unexpected places. It is not the same as MS but very similar.

Along with the word confusion, gibberish, slurring and just word block comes the short term memory problems. In a bizarre twist yesterday while I couldn’t come up with the word “watering can” I had technical language to do with theology rolling off my tongue without a problem. Even I was taken aback with that wondering how I was so fluent in something probably more difficult and couldn’t name a garden tool!

I can go for days speaking perfectly ok but in a crash or when I’m just tried it can quickly go to pot. Slurring, just running out of words and giving up. I do think things have been worse over the last month and I suspect I had something like a TIA about a month ago; so it could be that. Who knows? I don’t.

While the symptom is pretty ubiquitous among both the ME community and Dysautonomia lot, I can’t find any specific research on what the root cause is. Most people either get the brush off from medics or a “nothing we can do” response.

I am one of the lucky ones. I don’t think many people care less whether I sound daft or not – which is a blessed relief. Some of my kids, and even my lovely new daughter-in-law are amazingly good at translating so it doesn’tget too frustrating.  But also, I’ve reached that point with “shambles” where frankly I can’t help what anyone thinks of my weirdness, whether it’s twitching and jerking, keeling over, or my neologistic miscues. I can’t control my “shambles” so I am learning to live with it. I hope others are learning to live with it too. My poor ol’family certainly have no choice.

I don’t really have any advice for those of you reading this because you struggle with it too. The only thing I can say is, laugh a lot. Don’t let the thing upset you. And have pen and paper at hand. Sometimes I can type things I can’t say – weirder and weirder but it’s true.  Word block isn’t helped by typing but I don’t often get word confusion, or at least not as badly when I type.

And remember, you’re not alone in blurble-flurble-dingbat-undermender.

It was a lovely Wedding.

Well, I didn’t cry! Tough as old nails me. I did come close once, for which I P1020141blame the best man. His speech was probably the most genuine and blessedly short speeches I have ever heard. He showed what true friendship is and I was very touched.

The way the whole thing came together was amazing. All day Friday the Explorer Scout group that Alex and Iona are part of were at the Church Hall with Anna’s parents and Al and Ronan, getting it set up and ready. It looked stunning.

Meanwhile Iona had finished the cake  and it was transported with great care!

A few things about the day stand out for me. First of all I was so pleased to see that people from our parish and some friends came to the wedding Mass, even though they couldn’t get to the reception.

I loved the fact that our parish priest obviously sees Alex as a true spiritual son and loves Anna as much, though he has known her less time.  He works so hard. He came and grabbed some food, rushed off to do some visits and say 5pm Mass and then came back and joined us.  He hasn’t asked for a penny for the use of the hall.

The other thing that was lovely was getting to see friends we don’t see very often these days and one of them concelebrated the Mass – which was special for me, as I’ve known him since we were teenagers.

The food for the wedding was amazing. So many people brought so much food there was tons left over. The Scouts and some of the guests, including our Deacon and his wife worked their socks off in the kitchen and stayed ’til nearly 1am on Sunday morning to help clean up.  (We left just before midnight when the children had obviously had enough; Josh carried Heleyna home and I had Avila on my lap most of the way).  I have to say there are a lot of very good cooks out there. A lot of the left overs went to the soup kitchen and Father says he’ll sell some of the cakes. A lot of the left overs came back here too.

P1020172Anna’s dress made by her aunt was lovely and her aunt had also hemmed the table cloths. On the cloth for the top table she had hemmed in the names of Anna and Alex and the date of their wedding. It got a lot of admiration, although she was very humble about it.

Josh hired kilt sets for him and Ronan. There was no Scott tartan available for hire so we went with the Help for Heroes tartan. The military hospital wing is up the road from us so it’s a charity we like to support.

It’s pretty lovely to see the new Mr and Mrs Scott looking so happy.

The following day was Ronan’s 1oth birthday. Even though it was crash day for me and there was a lot of post-wedding stuff happening around him, he had a good day. Our friends came over (having stayed in a local hotel) and spent a good chunk of the day with us and so Ronan had time to play with a friend he doesn’t get to see very often.

Now, for a little quietness…. well, probably not.


The Wedding! The first of our children to get married.

This gallery contains 6 photos.

Friday Freebies; Lent stuff, the Pope and the Conclave…and other eclectic things.

Classical Homeschooling Magazine online

A probably complete list of the free online books written by Charlotte M. Yonge.

This is a very good overview of the pontificate of Papa Beni I am among those who believe the establishment of the Ordinariate will bear great fruit. There are plenty of prophecies from the saints and blesseds that say England will revert one day. Perhaps the Ordinariate will pave the way.

There’s this great freebie for children to get to grips with how the conclave will work.

Don’t forget my freebies from the past The Via Dolorosa for Lent and Easter


The Seven Sorrows of Our Blessed Mother which include walking with Jesus to the place of crucifixion; standing at the cross; receiving her beloved Son’s body into her arms and laying Him in the tomb.

And there’s the VIA GUADE to take you from Easter to Pentecost.

There’s plenty of things to find at That Resource Site


The Wedding – getting ready.

P1020096As we are in the last two days before the wedding the activity levels increase. Yesterday I got the rest of the Order of Service printed and Alex stapled them. Then I fell asleep!

Today I’ve got some bits and pieces to do but am under strict instruction to do very little so I can be sure of being there on Saturday. I do not want to miss my son’s wedding and I am trusting that I will be fine on the day.

Ronan has made a lovely gluten free treacle tart and instead of Eton Mess he’s going to make a lemon meringue thing, I just made the lemon curd in the most cheatish way I’ve ever seen.

200g of caster sugar (gran’ll do)

250 mls lemon juice

100g of unsalted butter (I used the butter I made a couple of days ago)

3 eggs. whip the eggs up.

Put it all in a pyrex or other microwave safe bowl. Give a whipping with a fork.

Put it in the microwave and then nuke it for a minute at a time, stirring it with the fork after every minute or so.

It took about 5 to 6 minutes (can’t quite remember) to get it to thicken nicely. Leave it to cool

I’ve never made curd this way before but it has worked reasonably welll and is certainly quicker than the proper way. The proper way produces a much better consistancy though – but the quick version tastes fine.

I’ll pour this into a flan case and then crumble meringues into whipped cream and slap that over the top.

P1020099Ronan’s Gluten Free treacle tart

grease and line a 9″ tin.

roll out shop bought gluten free shortcrust pastry and line the tin.

Into a heavy base saucepan put  8 tablespoons of golden syrup

2 oz of unsalted butter (used my home made)

heat this over a low hob until the butter is melted.

let it cool a little and then add in 2 beaten eggs

4 0z of gluten free breadcrumbs and 4 tablespoons of buttermilk (you can use cream but we have buttermilk from making the butter)

Pour the mixture into the pastry case and cook on Gas Mark 4/350 F for about 20 minutes.

Alex has just arrived with an armful of cheese, which stinks! However, he has left behind the Stinking Bishop which was offered as a substitute for something else (a hard cheese, so why they subbed Stinking Bishop I don’t know.) He’s decided not to have the SB at the reception as it will stink out the entire place!

Things are getting a little stressful for the bride and groom but Iona is all calmness as she completes the wedding cake; only occasionally bursting out “Don’t touch me I’ve made A HUNDRED scones!”

As I’ve only made about 18 I can’t really compete can I? LOL!

Do not be afraid.

The internet is both a blessing and a curse. It’s up to the user to choose which it will be. On the one hand there is so much genuinely and shiningly good to be accessed, and on the other there is the strange permission to lie and hate others for no particular reason,

And yet I think there is a reason there is so much more hatred spewed out over the net and it’s not as simple as the anonymity that being online can offer. It seems to me that hatred is almost always rooted in fear.

Jesus kept saying, “Do not be afraid.” 2000+ years later it was the refrain of Blessed Pope John Paul the Great. “Do not be afraid.”

Those of us with a dx of ME/cfs and Fibromyalgia face ignorance and nastiness from doctors all the time. Any co-morbid condition like POTS in its various flavours or other orthostatic intolerance (OI) face dismissal, rudeness and sheer maliciousness from medics so often it almost beggers belief. What is so astonishing is that this is not an isolated thing. It’s not even a one country thing. Patients from all over the world have face the same “group-think” of medics who obviously think they are within their rights to treat patients with the politically incorrect dx of ME/Cfs and it’s friends with utter contempt.

The mainstream media has jumped on the anti-the patient bandwagon (in fact it was the media who termed the phrase yuppie flu back in the ’80s ignoring the fact that the disease was across all walks of life and had horrible effects. Then even when a journalist tries to be a little more honest in his/her reporting, when it’s online, the comment boxes are full of strangely angry people denigrating a group of seriously ill people, they have never even met!

Jesus said the Truth would set us free and that’s certainly true – but lies can be very comforting, especially if you tend towards fear. I think those who are so willing to attack patients with ME do so because they fear the spread of the disease. It’s everywhere and is more often than not in huge clusters. Are people spewing hatred at people with ME because they fear it might reach them?

Wherever evil has held sway the sick and frail have been trampled under foot or just murdered.  A world view that sees people as no more than cogs in the money making machine will always turn vicious towards those who can’t take part in the machine.

Our culture has no problem with people working themselves to death to make money for a company, but looks askance at carers who spend their time working to elevate the suffering of others. It’ was no coincidence that under the full scale consumer-capitalism that Britain was thrust into in the 1980s that both ME was labelled as “yuppie flu” that stay at home carers were dismissed as weak and that nurses couldn’t get a living wage while our patients lost so much in benefit payments that many ended up homeless (and the prisons started to fill up rather suspiciously quickly)

In light of this political thought, blasted through the media at full volume it is will little surprise that I hear of the viciousness and death threats spewed all over the Holy Father as he steps down. He is a good, gentle, humble and deeply holy man so of course there are those who hate him.  He is in the utterly strange position of standing for Truth so he is adored on the one side and reviled on the other.

The hatred of the Holy Father is fascinating in some ways. Many of those who hate him insist that the old man is pointless and the Church has nothing to say, and yet it’s still him they attack and not any of the other religious leaders. The fact is that the Catholic Church stands alone as the last bastion against the culture of death. There are little boats sailing with us (as St. John Bosco saw in his prophetic dream) and they tend to be the Orthodox churches, although I believe some of them have caved on some issues around the sanctity and open to life nature of marriage. Orthodox Jews also stand firm against the culture, and of course there are individuals among the evangelicals and some muslims.

But the fact is the full on attack against the culture comes from that pointless old man they are all so afraid of.

For those of  us who are sick, the witness of both Blesssed Pope John Paul and Papa Benedict in their own sickness and weakness is a true inspiriation. In their witness we find we do have value as persons no matter what the culture tries to tell us.

Those of us who have lived through a few popes now have been in the  blessed position of seeing saints sitting on the Chair of Peter. Just as the first 500+ years of the Church was packed with saintly Popes, so it seems the last 400 years  of the Church has seen the same. Whether the next man is a saint or not, we are still facing the darkness and we are called by Christ to not be afraid.