CBD Notes (1)

I thought I would share with you private notes that are circulated between some of us who are CBD sufferers and their caregivers / spouses / families.

It will hopefully give you a better insight into the world of those of us who battle CBD everyday!

I have removed names for obvious reasons!

My husband seems to want to go to bed earlier and earlier. I try to keep him up to about 8:00 p.m. at least and he sleeps until about 6:00 a.m. If he stays up much later then he seems to get agitated and then it’s difficult for me to do all the get to bed routine and transfer him safely. We had a very difficult evening earlier this week because he was angry that I had pushed him in trying to keep him safe…..similar to what V described. So he agreed that I can get someone in several times a week in the evening to do the routine to get him to bed. Tonite is our second time. With whatever time we still have together as a couple, I would like to have a good relationship and be more of a wife than just a caregiver. I love when I can get him to laugh or smile or see a little twinkle in his eyes. Doesn’t happen often enough. C’s issues are more movement related, diminished speech capabilities and now swallowing issues. Cognitive is slower but not terrible. He just can’t get out the words he wants to say. We all know what a thief this disease is for our loved ones and all of us as well. My husband is ready to have it over and there are days thaT I feel the same way……but then I get real sad. Janet Edmunson recently did a webinar on Anticipatory Grief……and that’s where I am and probably many of you are as well. Perhaps Janet or Robin could provide a link for the webinar for any of you interested.

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My husband stopped using his ipad about 4 months ago. He doesn’t have the control of his left hand very much anymore and the right hand is “alien” and of no use. He can still get some words out, better in the morning and clearer during the night!

A Load of Shed!

(c) 2014 Edward C Lunnon
Physical: Advantage CBD / Mental: Deuce
8 years 4 months ill …

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The last two weeks have been difficult.

More deaths (Phillip Hughes, the cricketer in Aus; John Lynch, Old Greys ex President in PE; Pierre Corkie, ex-teacher from Grey Bloem in Yemen).

More load shedding in the country as we face an uncertain electrical future.

More problems with petrol supplies and telephone communications.

More health challenges for me including bronchitis and gout, and more quinine tablets for the increasing spasms.

The last two weeks have been exciting.

We spent the weekend at the Bathurst Country Affair Food and Wine festival with my sister Ingrid and her husband Anton.

Sean and Phillip headed for Plettenberg Bay.

Pera has gone to New Zealand to surprise visit her sister Bridget whom she hasn’t seen in the last fourteen years.

The last two weeks have been hectic.

Planning for Christmas, preparing for Cape Town, packing for trips, sorting out taxes, attending Christmas parties and consulting doctors.

The last two weeks have been emotional.

Deaths, cancer diagnoses, illness, more CBD cases, hellos and goodbyes.

The last two weeks have been just a typical period in the experience and journey that we call Life.

Lights Out!

8 years 4 months I’ll …
Physical: Advantage CBD / Mental: Deuce
(c) 2014 Edward C Lunnon

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This is the fourth day since Pera left for Auckland and the – I’ve lost track – sixth (?) day of load shedding!

This weekend, we have been without electricity, fixed line telephones, internet and petrol.

As I started writing this, at 18h00, the lights have just gone off again!

I watched a press interview of the top people at ESKOM this afternoon.

Pleased to note that the CEO says “We do not have a crisis”!

My cramps also appear to have switched off – hopefully the quinine has kicked in – but now I can’t kick out! I have gout!

So much for my good intentions of writing tonight – I’ll try tomorrow when there is light!

The Week the Wheels Come Off

7 years 9 months ill …

Physical: Advantage ED / Mental: Advantage ED

 

I Remember …

… Wacky Wednesday: I fetched Steve and Andre Fourie (Mr PE 2014) for the radio show at AlgoaFM. Then coffee at Bluewaters cafe, home and off to my weekly massage for an hour. Home at 2pm,and off to Aurora Hospital for hydrotherapy until four pm. Snooze for a while until supper. Freezing cold – I think its hovering around 7 degreees! – so off to bed and some reading and trying to get lift to Patensie.

 

… Wheels come off! Lift to Patensie with Niekerk Ferriera originally at 2pm but only at 4pm. Arrive at Lande Ferriera’s home, get ready for piano concert by Rocco deVillers at her home with an audience of almost 150 guests. Cheese and wine and music and conversation that continued until 4am!

 

…  Spent Friday doing admin on her stoep, rest into PE for the day. Walked, talked, visited until Pera arrived at 5pm. Pizzas for supper and early to bed!

 

… Off to Gamtoos Sitrus Fees for the day and celebrated with festinos

 

… Snoek and Steak Braai in the evening

 

… Father’s Day: Left Patensie at midday for Plett – joined up with Sean at the Bryants! Another afternoon and evening of “kuiering”!

 

… Youth Day (Monday): Breakfast at home; coffees at Beacon Island; lunch at The Deck and then back to PE in the evening.

 

… Tuesday: Visit from Sr Gill; haircut; visit to Niekerk and Pietie Ferreira at St George’s Hospital; Looking for lift to bring my pills back from Patensie!

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Cheers!

©2012 Edward C. Lunnon

Monday 10 December 2012: 6 years 3 months on …

Physical Advantage CBD … Mental Advantage CBD

Early on Saturday 24 November Sean dropped me off at the airport. I was headed for Cape Town – a trip that normally would raise much excitement in me. This time, I was a bit anxious. It was a quickly arranged trip in order to get to visit Tygerberg Hospital and the Neurology Unit at the Stellenbosch University Faculty of Health Sciences Department of Internal Medicine.

Besides that appointment, Cape Town is also always a time to catch up with family and friends and to savour the beauty of the Western Cape.

I am always grateful to everyone who provides me with transport and accommodation. It is difficult to see everyone and to do everything on the list; and this time, even more difficult than in the past.

But I get to see university friends Willem and Gretel, Jacobus and Tillie, Hermann and Annette, Schalk, Miles and an old school mate – last seen 38 years ago – Andre Cromhout.  Supper with Dr Franclo Henning and his wife Helen is on the list and then there’s also my sister Lyn and her family including, of course, Sebastian (my tour guide!) and Michelle, and my cousins John and Jeremy Voldsteedt and their families.

I also manage a visit to my late mother and father’s grave in The Strand’s Goede Hoop cemetery. The vandalism, subsidence, neglect and destruction there makes me realise yet again the wastefulness of graveyards!

We get to visit Harbour Island at Gordon’s Bay, Stellenbosch (ofcourse!) and its brand new shopping centre, Blue Rock Quarry (with its cable park, skiing and rock jumping) at Sir Lowry’s Pass Village and a trip through the winelands to the quaint Franschoek, stopping off for lunch (babotie) at Kalfis Restaurant in the historic Huguenot Road. All these places tell the history of the Cape of Good Hope and indeed, the European origins of our country. The Afrikaans side of my family (the Roussouws and the Bassons on my paternal grandmother Susan van Blerck’s side) farmed and lived in these areas and at Agter-Paarl.

Of course, a meal at a wine farm is obligatory when visiting the Western Cape. This time it’s the Dornier Wine Estate on the Blaauwklippen Road just outside Stellenbosch. The meal was great and the view exquisite – all in the shelter of the Helderberg whilst the Black South Easter howled at all other points on the Cape Peninsula (and for almost every day of the duration of my visit)!

But talking about eating – I’m not sure if it was the (one glass of!) red wine or the Thai green curry that did it; but somewhere I picked up a bug and was laid very low with very painful gout and gastric flu!

It knocked me for a six and prevented me from visiting some friends that I had wanted to see and also our planned trip to the railway station restaurant at Botrivier. (It’s amazing how the Western Capers turn everything into tourist attractions!)

The visit to Tygerberg Hospital was daunting but uneventful.

It’s amazing, in the day and age that we live in, that some of the most sophisticated equipment that is used to do brain tests involve toothpicks, pins and needles and cotton wool!

The good prof reckons that I am still in the CBD “box” and can’t explain why it has not killed me in the five years that he originally predicted! What is it that keeps me going, albeit slower and slower?

I had been sent a text message before I went to the hospital – it read “I hope you come back normal!”

I wish; but, unfortunately, the professor can’t make me normal again!

The best he can do is to send to London some of the observations and videos that he took. There a group of “wise men” may come up with some answers – but a cure? Maybe that’s pushing my luck just a bit!

And so, it’s good-bye to Cape Town – yet again!

As that bright orange Mango Boeing took off eastwards over False Bay straight into the wild southeaster that was churning up the “sea-horses” way below, I wiped away a tear or two.

As I fly into the storms that lie ahead, I never know whether I will return to the place of my birth. I never know whether I will see the beauty of the Cape of Good Hope again – indeed, whether I will see any of you, my fellow-travellers, yet again. I never know whether it’s just cheers, good bye or farewell. Maybe the French have it right when they say “Au Revoir”!

Whatever it may be, I want you all to know how thankful I am to each and everyone of you for sharing my life journey and for making it what it is. Some have been on it from the very start – others climbed aboard later. But, wherever you joined my journey, I am so thankful that you have been there with me – and for me, for sharing your life with me, and for shaping my life with me. Somehow, “thank you” doesn’t seem quite enough!

I returned on Wednesday afternoon on the first Cape Town – Port Elizabeth Mango flight at a lesser price than normal. I, too, am less “normal” than I have ever been and with the cracks ever-widening.

Whilst the comment is always “but you look so good!” an honest assessment would see that my thought patterns are disturbed, my sight is problematic, my left hand is all but paralyzed (and my right hand is slowly flowing suit), my left buttock and left leg and foot with its spasms are uncomfortable and uncontrollable – despite all the braces and the new medication in the form of Baclofen @ 2x day! ED is in“slowED down”and “spacED-out” – who needs Washington State to legalise the recreational use of cannabis when you can get your mEDs directly from your friendly pharmacist and have the same effects?!

More importantly, the “being ill” for almost seven years now is starting to take its toll on me and the family. I am getting tirED even before the real show starts. I am struggling to be just a person – let alone a husband and a father and a citizen. 

And it’s starting to rub off on the rest …

 

 

Died and Gone to Heaven?

29 April 2010: 3 years 7 months on . . .

 Having CBD does not mean that you are immune to other illnesses. You also get those mundane, everyday, ordinary sort of things that everyone else around you gets. It makes you ill but, after a visit to the doctor and a script from the pharmacist, it disappears miraculously. And so, in addition to the CBD, it would now seem that my uric acid level has become raised, and this leads, from time to time, to a dreaded gout attack.

So, on Thursday last week, I found myself at the casualty department of St George’s Hospital. No, not for the gout, but this time with Phillip! He had injured his pinkie playing rugby in Grahamstown on Wednesday afternoon. Despite an anti-inflammatory and a strapping, the swelling did not subside. So off we went to the hospital – by the amount of money that I have invested in this private establishment, I may be forgiven if I considered myself a shareholder by now?

An x-ray revealed a broken bone, and that means he will remain strapped and rugby-free for four to six weeks. But, it was while I was sitting there waiting for him, that I could feel that dreaded pain starting up in my left big toe. I had no intention of riding it out again using the standard medication that I have used in the past! I immediately phoned the miracle doctor and made an appointment to see him later, anticipating the dreaded cortisone jab into my bum that would bring instant relief from the pain.

After Phillip had been put to bed, literally and figuratively, I headed off to Dr Rod Butters. It was just the previous week that he had made a home visit at ten in the evening – now when last did you have a doctor make a home visit? It had reminded me of Doris, my late mother, who always insisted that the kitchen be spotless and that all dinner dishes be washed, dried and packed away at night before bedtime, just in case the doctor needed to make an emergency night call. Imagine the disgrace if he had to see an untidy kitchen!

Back to Rod Butters: Out came the syringe and in went the needle…just a slight burning sensation as the Celestone Soluspan Voltaren cocktail went straight into the right cheek. Out came the needle and away went the pain. Isn’t it amazing? If only these clever guys could find something to put in that syringe that would take away the CBD!

But wait . . .

If you have read my blogs, you will know by now that my condition varies considerably during the day and that mornings are the worst part of my day. My body seizes up during the night and, when waking, it takes me a while to get up and get going. My body goes into the foetal position and my arms creep up over my chest. They feel as if they have turned into bags of cement over night. Thank God, it’s not painful – but all very uncomfortable.

It’s also not a pretty sight, and one that only my family and a few others have seen. This is always the most difficult part of the day for me, and the time when I have to fight the tears and the temptation just to pull the blanket over my head and stay in bed. For the rest of the day, most people would not even know that I am ill – the outward appearance belies what is happening underneath the surface. Hence the statements that I often hear “But you look so good!” I look so good only because the panel-beating is so good!

Once I have “defrosted” in the morning, I am ready to face yet another beautiful day that I have been given. That is my reward for getting through the initial discomfort! What I do with the day, with every additional moment that I have, that is my choice.

But …on Friday morning things were different.  For the first time in three years and eight months, I woke up and my arms were not tingling and that heavy cement feeling was gone.

I thought I had died and gone to Heaven! I just lay in bed and it felt so good to be normal again. I WAS able to pinch myself because my fingers were working.

And then I got out of bed and walked normally, without the slowness and the difficulty in moving. This time the happy tears flowed freely, just because it felt so good. How long would it last? Well, the respite was short-lived and by Saturday morning things were back to normal – well, CBD normal for me – anyhow, what is normal anymore?

The question of course is, can’t I get a daily dop of that gout cocktail to ease the CBD symptoms? Will a cocktail a day keep the symptoms at bay? That would put a whole new meaning to having a daily shot! I guess this calls for yet another visit to the neurologist . . . is there any money left in the medical aid?

Looking for a Job? (or else The Job Description)

March 2010: Three years six months on …

The southern coastline of South Africa is made up of a number of bays. Almost at the centre is Algoa Bay and Port Elizabeth (now referred to as Nelson Mandela Bay). Just to the west of Algoa Bay is St Francis Bay which stretches from Red Rock, Kini Bay and Laurie Bay in the east all the way westwards to Seal Point at Cape St Francis.

A number of small, mainly holiday towns have developed on this western side of St Francis Bay (mainly thanks to the foresight of Leighton and Anne Hulett). Today they have grown into one contiguous mass of holiday and some permanent homes – a confusing number of names to the uninitiated. At Seal Point is the village of Cape St Francis with the lighthouse as its outstanding feature. Northwards, from there, is Port St Francis with its recreational and working chokka boat harbour, then Santareme with its pink Spanish style architecture, then St Francis Bay (the “Village”) – previously called Sea Vista – with its characteristic white- walled houses with black thatched roofs, St Francis Bay (marina) (previously called Marina Glades) where the black and white theme is continued in the houses along the man-made Hulett canals leading from the Kromme River. And then the houses along the river itself which forms the northern border of this development and which is commonly referred to as being The Kromme.

We are very fortunate to own a home – the smallest – on the Marina. Only an hour’s drive from Port Elizabeth, this is where we head to get away from the rush and stresses of city life. As one drives across the bridge that crosses the Kromme and the river stretches away to the mouth and the Indian Ocean in the east and the many riparian homes that box in the river to the west, one’s shoulders drop, the neck softens and the back relaxes.

So this is where we found ourselves last weekend together with John and Wendy Clarke and their twin sons, Graham and David (Sean’s contemporaries) and Dayne Bonnage, a friend of Phil’s. The boys have what is called a “boarder leave-out” and the normal hectic school sports routine is placed in abeyance for a short while. We have known the Clarkes for many years since our teaching days in the mid eighties. They have become a pillar of strength for our family in the circumstances that we now find ourselves.

Normally, when the Clarkes join us at St Francis, we have rain and we often laugh now about me braaing outside in the rain whilst John and everyone else sat cosily inside watching me through the sliding doors onto the deck. Needless to say, in my true fashion, the bottom lip dropped and the humour of the situation was lost on me! However, we are now in the midst of a drought on the south and east coasts and have not seen rain for months. Our dams are down to 30 percent capacity and we are told if the rains don’t come we have enough water to get us through to June, and the World Cup!

In Port Elizabeth, we are restricted to 500l of water per household per day. So, we have become accustomed to not flushing toilets after a wee, and collecting grey water in buckets from sinks and showers and throwing that down toilets and onto gardens. Showers are a short wash and rinse cycle (almost like the economy setting on the washing machine!) and consist of water and soap/shampoo, switch off water, lather, switch on water and rinse. And all this whilst dancing over and around the large dish in the bottom of the shower which is collecting the grey water destined to be thrown into the toilet or onto the garden!

However, the restrictions in St Francis are not so severe (mainly because the municipality has not yet got their act into gear), and this despite us getting our water from the same supplies! So this weekend, we also have a bonus in that we can revert to flushing toilets normally and having a normal decent shower, albeit feeling a bit guilty about wasting this precious and ever-dwindling resource. Paradise is gained!

However, I guess in all human experiences, just when life can’t get better and appears to be running along smoothly, paradise IS lost! On Saturday morning, I woke up to a sore left foot. By lunchtime, I could not walk on it and my big toe looked like an enlarged over-ripe tomato. Gout! The most unbelievable pain that not even the Kennedy Brothers prescribed Myprodol, the Colchachines and the Dicloflams could suppress for the first few days. The rest of the weekend was spent on the couch and the bed, gliding around on my backside on the floor and up and down the stairs! Luckily, the weather was not good and the wind howled (no rain!) so not much time could be spent on the canals and river. As usual, however, this did not put John, David, Phil and Daine off the obligatory fishing trips to the Point (although the fish are as scarce as the rain! – is this also as a result of global warming?)

On Sunday, after a relaxing weekend, everyone left for PE and I stayed behind, mainly because of a meeting that I needed to attend on Tuesday (but also because it’s so lekker in St Francis!) However, not being able to walk meant being restricted to the house, and I started feeling very down and sorry for myself. How much more am I expected to endure over and above the CBD, the broken elbow and now the gout? Looking for a Job? That’s how I feel right now and, at the moment, I don’t believe that you need look much further than me! (Job, the book in the Bible, tells the story of Job, the man of God. It is a gripping drama of riches-to-rags-to riches, a theological treatise about suffering and Divine Sovereignty and a picture of faith that endures. NLT)

BUT, this is when I have to analyse my life and check my foundation yet again. I have to keep my wits about me and keep my mind clear and positive. It’s so easy to get caught up in that downward whirlpool spiral of despair that just tends to suck you in even deeper and deeper. Writing helps, reading helps, music helps, setting daily tasks and goals help, staying busy helps.

But what helps the most, is when I return to Port Elizabeth later in the week and have to visit the physiotherapist and occupational therapist at Aurora (Rehabilitation) Hospital. Their motto is If there’s a way, we’ll find it.

Looking around me, I see so many people, old and young, with all kinds of disabilities, amputations, wheelchairs, crutches, bandages, lack of limbs … the list is endless. So much pain and suffering surrounds us and yet we become oblivious to it.

But, taking a good look at life around me, is far better medicine than any of the Myprodols or Dicloflams. I have so much for which to be thankful. The Job is not yet completed and there is still much to be done.

Prayer of St Francis

Lord, make me an instrument of your peace,
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
where there is sadness, joy;
O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.

For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life.

St. Francis was born at Assisi in 1182. After a care free youth, he turned his back on inherited wealth and committed himself to God. Like many early saints, he lived a very simple life of poverty, and in so doing, gained a reputation of being the friend of animals. He established the rule of St Francis, which exists today as the Order of St. Francis, or the Franciscans. He died in 1226, aged 44