Weekly MS update

I've decided to have a weekly update especially related to the MS. A couple of things have happened that have brought this about. Firstly, I received an email from friends of a friend who are quite some distance from us here in Scotland, whom I suspect have an MS connection; and secondly, my dear wife, Susie, and my good friend Colin, have (how shall I say?) suggested to me that I concentrate more on how MS is affecting my life as this is the part that is central to what people want to read about. So, I've decided to write a weekly update specifically about MS and its effects, and will be titled weekly update and will be in a different font colour and size (as per this entry). Any other entries will have titles that describe them and be discernible by title and font size and colour (black). OK. So, let's move on. Please do feel free to contact me to tell me your thoughts and suggestions. As of today, I'm putting an email address on the blog so that you can contact me directly - without feeling that the only way to do this is to leave a comment.



MS weekly update 26th April 2009



It's been a difficult week because of pain. I mentioned in a previous entry in the blog that the three main areas MS affects me are walking and balance, fatigue and neuropathic pain. The pain affects the left side of my head and radiates down my neck. It's like having toothache in your head. It's severe, localised and debilitating. I only have relief from it when I'm asleep, which makes sense as the nerves reduce their activity in sleep and I often don't have any pain for a few minutes after I wake up in the morning. When this pain first developed just over a year ago, I began to take ibuprofen 400mg increasing to four times daily. After approximately three or four months of this I found that it just wasn't controlling the pain. I would sit with my head back resting on the back of a chair and be unable to function in any way - work or conversation. Anything. Susie eventually called my GP (I was going to wait until I saw the consultant - she felt this was too far away), and he prescribed diclofenac. I took it faithfully, but, it didn't really help much. Luckily, my appointment with the neurologist was coming up!



When I described the pain to the neurologist he simply said that he could help.He prescribed gabapentin for me. I'll leave out the funny stories about how euphoric it made me (I loved the world and everyone in it for about two weeks!). It helped. It was day and night compared with the other analgesics. I had about 80 - 85% control over the pain and I was able to work most of the day and function reasonably normally. However, if I stepped up the dosage during a bad few days of pain then it made me feel so lethargic and tired that I lay on the couch and slept most of the time.



A couple of months ago, having previously spoken with an oral medicine consultant who recommended a different drug with less side effects, I saw the MS specialist nurse and asked if I could change to pregabalin, which is more expensive, but, has less side effects. I found the same euphoric side effects initially (as the consultant said, I 'stepped up' the dosage too quickly - but, you don't get any pain control unless you take the tablets!). I certainly had better pain control and I wasn't so tired. In fact, I felt the best I've felt for ages and didn't have to lie down so much. I felt I'd got my life back. However, this week has been bad. Whether the pain is worse and simply 'breaking through', or whether the drug has less effect now after a 'honeymoon' period, all I know is that the pain has been back with a vengeance despite the fact that I've been taking the medication religiously. So, what next?



When I spoke to the Oral med consultant, he said that I should try a combination of medications. He suggested fentanyl patches. These are similar to nicotine patches but contain a synthetic opioid. I haven't got these yet, but I think I'll ask my GP to prescribe them. The one side effect that's common with them is constipation - so, I'm off to Tesco to buy a couple of litres of prune juice - just in case!


The molecular structure - for those who like to know these things!

Other areas that MS affects me are standing for any length of time, little irritating things like crossing my legs or getting out of the car. Anything that involves accurate movement of feet or legs. Strangely enough, driving is OK, probably because I'm seated and my feet know what to do. I don't have the balance problem in the car - I think that this is because the seat is molded and helps a lot with support. I'll leave this week's report there and hopefully, have an update on the pain management next week. 'Til next time.

So, how is the MS?

"I've updated my blog!" called Paul. Susie was in the bedroom next door. It was late and she was in bed, propped up by a miscellany of pillows.

"What did you write about?" came an immediate reply from the long-suffering spouse.

"Em, the Easter Conference and then that programme I saw on iPlayer - you know, that Narnia Code one."

"And, did you write anything about MS?" came the immediate retort with a little more than a hint of reprimand.

"No, I forgot."

"You forgot! But, that's what people want to read about!"

"But, I don't want to write about MS!"

The deafening sound of silence threatened from the next room.

"Oh, OK. I'll do it in a day or two." The husband sighed.

A couple of days later he began to type: "So, how is the MS?......"

A few weeks ago, as chronicled here, I changed my painkillers to a new 'next generation' alternative. Apart from making me as high as a kite for a few days, the pain control was quite good and I felt better than I have done for almost two years. The last couple of days have been a bit rough, though. Whether I had an immediate 'honeymoon' effect from the medication, I don't know; or whether recently, the pain has been worse - I just can't tell. But, I've tried to augment the pain control with ibuprofen with little success (do you really want to know this?!). I'm hoping that this is just a minor blip and all shall return to what it was last week! I'll let you know.

The rest of the MS is as it was, I think. It's hard to tell. My walking varies from morning 'til evening. I can walk better after sleeping and it gradually gets worse throughout the day. My balance is bad all of the time and I've had a couple of near-misses as regards falling, when I've just managed to catch onto some item of furniture or kitchen worktop just in time. I think it's only a matter of time before someone has to pick me up in the pedestrian precinct in Sauchiehall Street in Glasgow! I can't wait.

Let's return to Easter weekend as it's more interesting!

We had a visitor.



The visitor

A strange thing happens on a semi-regular basis every few months in our house. A woman with the same features as her ladyship arrives at the airport/bus station/or on the doorstep looking for somewhere to stay. It's a pretty good deal, actually. She loves ironing and, in return for a bed and a little food she clears the ironing basket. Bless her. The really strange side of it is this: from the moment she walks in until she departs, there is ceaseless conversation between her and the aforementioned spouse. They've known each other for a long, long time, and yet, they never seem to run out of something to say to one another. Bewildering. The other side of this phenomenon is that I get totally ignored. Actually, that's fine.

I'll put a photo of her here so that you also can be confused. Is it the spouse? Is it her sister? It's hard to tell. One of the ways you can tell the difference is to observe certain habits. This particular version (the Polly version) has a habit of disappearing off to warmer parts of the world at cold times of the year. She insists it's not for holidays. But, we ask ourselves, are there any witnesses to this tale?

As usual, if you want a closer look, simply click on the image.

If you can enlighten me on any aspect of these siblings, or their unpredictable - and sometimes downright strange - behaviour. Then please do. I've been trying to understand them for many, many years with absolutely no success.

I've uploaded a photo of both of them together so you can play spot the difference.

Until next time.

The Narnia Code!

I first read the Narnia books (all seven of them) when I was an adult, probably around the age of twenty-two. They are wonderful children's stories that, if taken at face value are just that, children's stories. But, when one is reading them there is no doubt that an obvious parallel is taking place between the world of Narnia and our own. In other words, the books are allegorical. They tell one story as a way of telling another. The first book, The Magician's Nephew, finds the children 'falling into' another world. At the time they arrive it is an 'empty world'. They find themselves there just at the point that Aslan, the Christ-figure, is creating life in the empty world. It's powerful writing and wonderful to read.

The second, and most famous, of the books is The Lion, the Witch and the Wardrobe. This tells the story, in allegory form, of sin and redemption. In the story, the boy Edmund is skillfully tempted by the witch to eat her Turkish delight. He then, almost unwittingly, chooses the witch (sin) over Aslan (God) and then discovers his ill fate when it is too late. Aslan rescues the boy, but the witch demands blood! She refers to a 'deep magic' (really referring to deep spiritual laws that demand justice) that the boy's life 'is hers'. The climax of the story is that Aslan substitutes himself in place of Edmund and dies at the hand of the witch on the stone table. When all seems lost, Aslan returns to life - declaring that there was a yet deeper magic that the witch didn't know .."that when an innocent life"..gave itself in place of another .."death began to work in reverse." A true picture of what Jesus did for all mankind. The other books have different and exciting parallels.

However, Dr Michael Ward in The Narnia Code, finds a further cosmic meaning to the books of C.S Lewis. I must admit that I was sceptical to begin with and thought that this could be a lot of nonsense (the sceptic in me!). But, when I watched the programme on BBC iPlayer, I had that feeling that something has just quite easily 'slipped into place' and I believe he is right. The programme was excellent and toward the end had interviews and comment from some leading scientists who are Christians. I loved the way one of them put it, something like: "We can interpret the world through science, but there is another way! C.S. Lewis started from the point of man having consciousness and interpreted the world from that perspective" (my impression of what he said - it will not be entirely accurate). When Dr Ward was asked at the end "... and do you believe C.S. Lewis?" He simply answered "I do." If you get a chance to watch it or read the book, do it! Find out more here.

Church Easter Conference

For longer than I can remember, or have been coming along to Struthers Pentecostal Church, there has been a conference at Easter. I've always thought that 'conference' is not the best name for the event, but I can't think of a suitable alternative, so we're stuck with it (not that I'm in a position to rename it anyway!).

Let me explain for those who are not 'Church folk' or are not members of, or associated with our Church in any way. For Christians, Easter is a very important time; it's the time of the celebration of the rising from the dead of Jesus Christ. The bible tells us that he is the 'first-fruits' of the resurrection, and that those who follow him and commit their lives to follow him, will after death, rise again to an endless life. Fiction? There's more evidence than you think - and recent evidence at that - see http://www.aglimpseofeternity.org/ for Ian McCormack's story of when, after being stung by the box jellyfish many times (one sting can kill you), he was pronounced dead and later 'came back to life' in a mortuary!- with an incredible story of what happened in those 'missing' moments.

Anyway, I was delighted that I felt well enough to go to some of the conference. I got to the Friday evening (in Greenock), Saturday evening (in Glasgow) and the wonderful Easter Sunday morning service in Greenock. The original Struthers Church is in Greenock and the conference is centred there. Many people travel from all over the U.K. and beyond to get to these conferences, and as well as the services it's great to catch up with friends I haven't seen for a while.




Photo of the interior of Struthers Memorial Church Glasgow, courtesy of Eric Wylie. (click for larger image)





I loved getting to the three services and found that simply being 'in the atmosphere' was uplifting. I was reminded of the verse in scripture where Jesus says something like: "Where two or three are gathered together in my name, there am I in the midst" (Matthew 18:20 - I just looked it up!). There is something special about Christians meeting together (also as the bible instructs us). It's almost impossible to define, but, a special sense of God's presence comes amongst us and there is a refreshing sense of wellbeing and health in the air, and a delight within us that we are there. I loved it and wished I could have got to more of it.

Blog

It was at the conference that I discovered something that amazed me: friends are actually reading this blog! As I was saying various 'hellos' to friends I haven't seen for a while, I was constantly told "We're reading your blog! Please keep writing!" So, I've discovered that this eulogy may well fall under the eye of many a person I don't know about - so, I'd better try to keep it interesting and informative - and watch my sentence construction, content and spelling too! But seriously, if you're reading this, then Thank you! I appreciate it.

Cornwall highlights

From arriving here last Saturday, we've actually accomplished quite a lot. The weather on Saturday and Sunday was really good and we simply sat around and read and enjoyed the good weather. (Written while in Cornwall. The later part of this posting was completed retrospectively from home - in case the change in the verb tense used causes any confusion!)

Monday, on the other hand, quite suddenly became atrocious as regards the weather, with torrential rain and wind. We postponed our visit to the Eden Project and visited St Ives, which is a typical coastal Cornish village. The sloping town is full of the narrowest winding streets that you can imagine lined with small shops of varying descriptions. Cars and other vehicles compete in managing to get up or down the streets, with pedestrians squashing themselves against the buildings or ducking into doorways to allow the vehicles to pass without causing injury. It's a bit precarious. The first things Susie did was to go into a charity shop and buy an umbrella and one of those all encompassing waterproof smocks (the type of thing that cyclists used to wear before they became all 'lycrafied'). I'll say no more about it except that I don't think it will catch on as a fashion item.

We had fish and chips in the upstairs of a takeaway shop, which was very nice, promptly served and very fattening, then headed back to the guest house.

Tuesday, we went to the Eden Project. This is a feature well worth visiting. It's quite expensive to get in (£16), but, if you like plants flowers and general nature things, then it's for you. It's built in the crater of an obsolete quarry. Several 'biomes' have been constructed which house plants and trees in mimicked 'natural' conditions. There, for example, is a 'temperate' biome as well as a 'tropical', etc.

It really is a phenomenal achievement. There are outside displays as well as those indoors. Beautiful flowers and plants, information on Nature as well as conservation and recycling. There are several coffee and eating places and a gift shop. We never had to queue and our ticket lasts for a year, so, if we were here again we could get in for free. It's a full day at the Eden Project and we were ready for a good rest on our return to the guest house.
Click on any of the pictures to see 'full size'

Wednesday, we went to the Minack Theatre, which is an open air amphitheatre, we first visited when we were first in Cornwall two or three years ago. This was the highlight of our visit. It was built by one lady in particular (Rowena Cade 1893 - 1983, read about her here), who saw this particular piece of coastline and thought it resembled an old fashioned amphitheater. She then set about building it, and it's grown since then to the remarkable size it is today. Both times we've visited the weather has been stunning, with sunshine blazing down upon the water giving and providing us with a lovely experience and the opportunity of taking good photos!

In this photo, you look down at the theatre stage from way up high just behind the back 'row'. This picture shows just how close to the sea and how stunning the location is.

Susie sat and read for ages in one of the 'boxes' (again built into the rock) and I sat about five rows back in a seat literally carved into the rock. I quite happily sat and gazed at the waves and got lost in my own thoughts.

This photo was taken from where I was sitting and shows some of the permanent on-stage 'set'. Looking carefully, you can just see part of the 'box' that Susie was sitting in reading on the left. Obviously, both times we've been here there have been no productions on - as we've visited during the day and the performances are on at night, but you can imagine (weather permitting) how dramatic these productions would be - having a backdrop that most producers could only dream of.

At the top of the Minack Theatre there is a tea room/cafe, in which we felt obliged to partake of scones, jam and coffee. I don't think I've ever been in a cafe with a more dramatic setting. It's literally on the clifftop with windows overlooking the water and adjacent beach.

There is an 'inside' part and an outdoor area where I took this photo of Susie, which I don't mind saying is pretty good!

I'm proud of this photo as I've got one of those 'point and shoot' idiot-proof cameras and nothing fancy, and I still managed to do this one quite nicely!

There are two places in England that we both really like: one is the Minack Theatre and the other is St Peter's on the Wall, which is the oldest standing Church in Britain. I think it's 7th century, built by St Cedd in Essex. When you sit in it for a few moments you can feel the holy atmosphere draw close. It really is a gateway into heaven. Perhaps more about that another time.

Thursday, was a bit wet and windy in Cornwall, so we did go out for a coffee to a little town called St Agnes (to a strange little tea room that had a collection of teacups suspended from the ceiling - probably in excess of a thousand - and a notice reminded patrons that tap water would only be provided for customers taking medication). After that, we went back to the B&B and had a restful day reading and dozing!

Friday, we packed up in the morning as we were going home later on that day, took a run to Bodmin, where we visited Shire Hall, which is actually a court house (I think still in use) cum museum. There are displays explaining law and punishment over the ages, and has evidence on show from a murder trial following the death of Charlotte Dymond in 1844, and also a photograph of a man in village stocks in 1870 - the last year that they were used.




Shire Hall, Bodmin.

The location of the trial of Matthew Weeks, following the murder of Charlotte Dymond in 1844.

Later on Friday, we checked in for our flight home to Glasgow. We flew both ways with Air Southwest, which I had never heard of before. We flew in a Dash 8 aeroplane, twin turboprop, with wide leather seats and lots of legroom! It was noisy, but very comfortable.

We landed back in Glasgow about 4.30pm, headed home and after a very quick turnaround, drove to Greenock for the start of our Church Easter Conference, which I'll talk about next!

New medication

Three, or maybe four weeks ago, I started new medication for the pain I get in my head. Just like the first lot of medication I had from May or June '08, I was supposed to build it up to the full dose over three weeks. I built it up to full strength in a week!


It made me high as a kite! I happend to see the consultant the following week and when he found out what I'd done he reminded me that I was supposed to build it up gradually. "Yes," I said "that's all very well in theory, but you don't get any pain control without the full dose!" He accepted that this was the case and said the side effects would pass after a couple of weeks. I think that's beginning to happen, although I do still feel a bit lethargic with them.

Overall though, I feel the best I've felt for ages!

I can work most of the day and don't feel so ill.


I hope this continues.....

Setting the captive free

How familiar are the words "The Spirit of the Lord is upon Me, Because He has anointed Me To preach the gospel ,...... to proclaim liberty to the captives , .......to set at liberty those who are oppressed" (Luke 4:18, NKJV)

"To proclaim liberty to captives" - that phrase always confused me when I was growing up. My thoughts were something like this: "Why would Jesus want to 'proclaim liberty to the captives'? - surely, those in prison (the word some other translations use) ought to be there and shouldn't be set free!" It was a few years before I understood the true meaning of that verse.

In our day the word sin is not very popular. OK, let's use some different words for a moment: what about addiction? That's a good one to start with. We don't have to look far to find an addict of heroin, or other drugs, or what about alcoholics? Well, they are the obvious ones, but there are lots of others that are usually kept hidden and secret and only we know about them ourselves. At least we think we do. These were the captives Jesus was talking about. Those addicted to sin. He came to set them free. It begins to make sense now.

Charles G. Finney, 1792 - 1875

Finney talks about this in the online sermon I read. Imagine a person who smokes and who is trying to give it up. The man or woman involved, tries to 'break the habit' by denying themselves cigarettes and motivating themselves to go through the withdrawal symptoms (I have heard it's worse coming off cigarettes than heroin, whether that's true or not I can't say). Now, I have huge respect for people who do this and I wish them well. But, in my illustration, we encounter a problem. A person can force themselves to stop the physical habit of smoking, but, what about the cravings? They are often still there, and sometimes so strong that they overcome the physical and mental desire to cease smoking. In other words, the physical habit is at one level and the cravings are rooted (and sometimes very deeply) in another. The addiction has gone beyond the physical into what the bible calls our 'spirit'.

So, back to Finney. He gets frustrated at some of the teaching in some areas of the Christian Church which says that you focus on the problem (the sin) and pray and pray until it breaks. Finney says that is absolutely NOT the way to overcome an addiction or weakness. It's trying to fight a spiritual problem at a physical level. In fact, focusing on the problem sometimes gives the problem more attention and it just grows and grows. Focusing on the addiction, or the habit just doesn't work. It becomes obvious, that a spiritual problem must be fought at a spiritual level. But, how do we do this?

I am reminded of C.S. Lewis, in one of the books in his Science fiction trilogy. In either Out of the Silent Planet or Voyage to Venus, the main character, Ransom, returns from one of the planets with a cut to his heel. One of his friends who meets him on his return is a doctor who attends to the wound. But over time, it doesn't heal - it keeps oozing blood and requires to be dressed regularly. The doctor is bemused at this because Ransom is an otherwise very healthy specimen. Then C.S. Lewis uses a phrase something like "a wound sustained in another world requires to be healed in another world" - and that's exactly what I'm talking about now. We try to fight addictions and sin at a natural or human level - and it just doesn't work. We need to look at the spiritual level. So, back to our question, how do we do this?

Well, the first part of the answer is quite simple, we don't do it! We live in the human, natural world. We can only attempt to meet problems on our own level. Only God can deal with matters sin the spiritual level. Jesus came to "set the captive free" - He is the Son of God, he came here to earth on a mission. He also says "Come to me....and I will give you rest!" And, the answer is that it's 'in' or 'through' faith in Jesus that we will indeed be set free. I am utterly convinced of the truth of this statement. Instead of trying to focus on a problem and fight it, rest in Jesus. Quietly, trust in him to face the addiction or problem for us. And suddenly there is peace! I have known this truth in my own life and have only to look very quickly around the Church to see people who were once (for example) drug addicts and been in hostels, rehabs, prison and psychiatric care now totally free and living wholesome lives and in several instances running their own successful businesses. What a living gospel we have!

So, let's add a few words. I said addiction, but, what about obsession, or compulsion? In other words, areas of our lives that are stronger than us and no matter how hard we try we can't get free of them. It could be lots of other things too, like a bad temper, bitterness, hatred, violence - or a fear or a phobia, and a whole lot more besides. This living gospel - the good news - is for us too. A living, loving Power come to set us free so that we may live the life we were born to live!

If you want to read Charles G. Finney's sermon (from 1874), click here.

Blogging from Cornwall

Susie and I have flown down to Cornwall for a few days. We came down yesterday (Saturday 4th April) with Air Southwest, which I'd never heard of before. It was a Dash 8 turbo prop plane, which was noisy, but OK. The staff were wonderful in Glasgow and Newquay. I gave in to Susie and used the wheelchair in both airports. I was a bit embarrassed, but, the service we got was excellent and were taken through a different way for security checks and didn't have to wait in any queues. When we arrived in Newquay, we were escorted to the baggage reclaim carousel with one of the ground staff then carrying our cases to the exit from the airport, where a young chap from the car hire company then carried them to the little Corsa we've hired for the week. The B&B is lovely. We're in a little village not for from Newquay right on the coast with a lovely beach and waves crashing onto the shore. It's good to get away for a while and I hope that Susie is able to unwind and find it relaxing. I am keen that this short holiday also gives us time to look ahead to the future and find a new vision for the way forward. Watch this space!
Last night we took an evening walk down onto the beach and as usual, Susie had her camera. Here's a lovely shot she took of the evening retiring into night...

A couple of weeks ago, during the time that both of us were unwell with viral infections, I read a short online sermon from Charles G. Finney. I'll talk about that in the next post. Meanwhile, here's another picture of Cornwall taken by Susie yesterday evening (you can guess who's in the picture!):