Why Do We Do Things?

This was prompted by my reluctant admission that at age 65 I realise that cannot hope to be a great composer or even an adequate writer of popular songs as I lack the training, a lifetime of dedication and time even if I had any talent (which may well be the biggest shortage of all).  Computers, digital ensembles and software help in some ways but they impose their own specialised burden of problems, some of which are very challenging for a part time user and which therefore increase the odds against whilst not really solving any of the fundamental shortages noted above.  

            Another new acquisition is the electronic chess set which beats me effortlessly at even the weakest setting; however, this is different to composing in that I never wanted to become a chess master or play competitively.  A recent search of my office for Sibelius software revealed masses of other work, equipment and games which have been active at some time in the past (not always briefly) but then set aside.

            To this list I can add my various business interests which at one time had the justification of earning my living but cannot now be justified in that way.

            So why do I do things?

            To answer this we probably need to take the list in reverse order and start with the business activity because this was entirely justified for the first 30 years of my working life and has only become optional for the last 15 or so.  These last years could be explained by the motivation of wanting to (a) prove that it was me and not Twho was the genius and (b) having done that, to continue winning.  NPS is certainly holding out prospects of becoming the biggest win of all, but win or lose, does it make sense to keep on keeping on?

            If we accept that `use it or lose it’ applies to brains, then continuing to work ensures that we have a degree of insurance against the worst possible happening.   My work is now very much part time and adjustable and so this is probably one of the best managed areas of my life; I work enough to justify my existence and enough to help the businesses and this helps to polish my giant ego as well as keep me in contact with intelligent youngsters against whom I can rate myself and confirm that I am functioning well.  But if I need time off to go snowboarding or sailing, then I can just do it whenever I want and so this is as near a perfect life as anyone could hope especially if you take into account the date and place.

            The electronic chess set is especially handy for stretching my mind because, unlike bridge, it is all laid out before me and makes few demands on memory.  It is an enjoyable game and again provides a useful rating mechanism using the scoring system.  This is certainly a fun way to stay in mental trim.

            The music is rather like the chess except that it offers also offers a slim  chance of outsiders listening and enjoying what I have produced (if I ever get to that stage).

            Both the SIPR, the OYTS and my own writings for the web involve spending either money or hard work, with the benefits going to others but are not such lonesome activities and they also have the kudos of helping my self esteem.  

            However, we like to imagine that we are modern and run our lives on a sensible and logical basis despite the fact that we know very well that we are simply `highly evolved monkeys’.  We freely acknowledge our `humble beginnings’ but would like to think that when we left behind fur and tail, we also left behind the primitive instinctive thinking that is about the best that animals can manage.

            The reality is that our emotions are the remains of our animal instincts but just given a less primitive sounding name.  This means that the emotional content of our decisions is just as well founded in logic as an animal’s (and hence logical in their terms even if illogical seen through our unemotional logic).  All of our decisions are a mixture of logic and emotion but we are frequently only willing to acknowledge the logical elements.  Decisions which are largely emotional are frequently illogical and this poses a problem for us in that we are apparently going to make an illogical decision and are still unwilling or unable to clarify the true emotional reason which is driving us.  We often get round this by inventing logical sounding reasons for the decision (e.g. I bought a new car because the old one was about to start costing us money).

            So our emotions (our feelings) are logical in the sense that they would have made sense to our ancestors in an equivalent situation but we need to understand where they originate and then determine if they are relevant to our modern situation (They may well be: falling over a 50ft cliff is just as fatal as it ever was).  But a girl who sleeps with a pop star probably will not subsequently enjoy the survival benefits that copulating with the most powerful monkey in the troop may have once had. 

Conclusion:

So the question `Why do I do things?’ has to be re-phrased into `Why might we have done things in the past?’  The answer of course is that in the past, if you sat on your arse and did nothing your children died and you quickly followed.  We did things then because we had to!  So we can expect our feelings to push us to be productive and these productive urges impel us into co-operative efforts with other like-minded individuals because that too made good sense in the past.

            So that is the emotional/illogical/instinctive reason for staying productive.  But the emotional and logical reasons may not be in conflict even though based on different considerations.

            Practically all of the things I do keep my mind and/or body active and Most of them (either potentially or in reality) help or may entertain others, apart from snowboarding and chess.  These last activities are not about helping others or about earning money, they are on the list because these are things that I do mainly because I simply enjoy these activities.  They are demanding and will take all I can offer because they have no limits.  Of the two, snowboarding is best because of the physical side and the bright environment.

            I can add to the above after the Jan 2005 trip to Val d’Isere where I damaged ribs, knee and ankle through my own and another’s mistakes; and then struggled to edit the video.  As a generalist, capable of doing lots of different things (i.e. living life to the full), I am not really an expert at any of them and when it comes to technology, not being an expert means that you suffer a life of frustration as you attempt (and fail miserably) to do something which you feel sure ought to be possible (and can therefore presumably be done by millions).  It puts you at the bottom of this millions strong heap and this is not good for the ego, you feel an idiot.

            Despite this reasonable deduction, I found that (a) the board had been badly serviced and I did not appreciate the board dynamics (I do now) which led to the first accident.  The second was plain ignorance and neglect on my part and I paid the price.

            The video problem was really due to my logical expectations being let down by Sony’s marketing decisions.  In this case, the editing software would not work with the camera (or at least, not yet) and is generally regarded as LOUSY.  The software I bought could not accept USB inputs and the camera could only output to USB so I was screwed there too.

            From this, it is clear that it is better to buy high tech products through a shop, pay a little more but get advice rather than simply trust that there is not some hidden aspect of the technology which will cause a foul up later. 

            Rereading the above in Sept 2007, I would now not regard our emotions as mere vestiges of the animal instincts but even more highly evolved instincts which happen to be over-ridden by the logical cortex of the human brain.  

Log of Polymyalgia Rheumatica

Log of Polymyalgia Rheumatica

            When I first started treatment in early May 2010, I felt really good and capable of almost anything (probably the effect of the steroids).  It is now eight weeks later and I am definitely far more tired than I would be if I was in good health.  I feel generally tired, yawn a lot and will frequently have a half hour lie down after lunch.  I am also easily discouraged by problems e.g. I planned to get my new organ and computer linked to the web, but it all seems too difficult (except that I did manage to connect the piano).  Equally the new dinghy is still awaiting its maiden voyage (but I did sell the skiff).  So shortfalls in my performance had been concerning me and adding to the feeling of depression which illness generally brings.

            I therefore needed to give myself permission to `be ill’ i.e. use the illness as a reason rather than an excuse for not sorting these problems out.  I need to recognise that I am the person that sets the targets and I know that my own motivations are normally strong and if they are currently subdued, that means that the illness is affecting my drive.  So just as I would not push a trusted employee, I should not push myself or feel a failure for slacking.  It is not slacking because the illness is causing the tiredness and if I allow it, the resulting rest will help my recovery.   I am also `retired’, and hence I have nobody to answer to apart from me; so if I think that I should rest up a bit and not push things, then that is absolutely OK. 

June 10^th put on 20 mg

June  12/13^th 30mg

14^th to 23^rd 25mg

June 24^rd  to 26^th 30mg

27^th 25mg

July 19^th 20mg

16^th July.  I find I am extremely tired during the day to the point where I feel like nodding off (but don’t), so I am clearly not `myself’ and will give in to taking it easy.

9^th Aug 15mg

22^nd Aug.  Reduced from 15mg to 10mg for today only and will settle at 12.5 for the next week or two.

26^th Aug.  Now down to 12.5mg and after 4 days on this am definitely lacking energy as the body adjusts.  I had a half hour lie down earlier this morning and am now about to go for a strenuous bike ride round the Loch to see if I can spark a bit of life and will report back:   Feeling quite a lot more lively before my shower anyway (although still not fully back to normal). 

Will now see what a shower does:  20 minutes later, after the shower I still feel pretty normal with reasonable energy and willingness to try new things.  So clearly, it is possible for my cortisol levels to rise in line with demand and I just need to keep them in practice even though it takes a bit of effort to ignore the urge to go and lie down.  `Giving in to it’ is akin to a badly injured person being allowed to `drift off’; I assume that slapping the face etc ensures that the effect of the pain and stress is to ensure that cortisol stays high and resources are therefore marshalled to keep the person alive.

The beneficial effects seem to stay; before the ride I was tired enough to go to bed and my thighs were a bit sore; but afterwards, no plans at all to go to bed and thighs less sore.  Just the right shoulder still feeling a bit doubtful but that may be due to operating the mouse at a bad angle.   I will stay with 12.5 for another three weeks. 

Now suddenly, 90 minutes after the ride, I am tired enough to go to bed again.  After being in bed and sleeping, the phone went.  I was immediately awake and animated, so clearly, the ability to switch on the cortisol is still there and it will be interesting to see how long this new energy lasts.  The answer seemed to be the rest of the afternoon, although I ended up having another little sleep before teatime before writing this.

 I am still in the adjustment period And as the adjustment is only 2.5/15 = 16% unlike the previous 25% drop, I am surprised that the effects are so noticeable; it suggests that I have the dose about right at the moment in that I am having to `make an effort’ to top up to a reasonable level. i.e. the body’s feedback mechanism is very effective in chopping back the cortisol production to just be enough for the current needs and if I simply reduce my activity level to match the cortisol level, there will be no demand on the adrenals and the ability to produce cortisol on demand will be lost.

27^th Aug Feeling quite good this morning with only very slight feelings in thighs, hips and right shoulder which suggest that I am still borderline at this level.  But had a good day and despite lacking energy can still batter up the hills on the bike.

28^th Aug.  12st exactly.  A good start but feeling a bit overwhelmed by relatively simple paperwork, so still not up to scratch although no aches etc apart from a very slight effect in the right shoulder only.

2^nd Sept.  12st 2.  A hard session sorting out tax stuff; no real need to find simply looking through files hard but it was!  Generally been feeling quite good recently, so the adjustment down to 12.5 probably took about week to ten days  It is a nice day for a sail but even 8 mph Easterly is enough to put me off (regretfully).  I really need to push myself a bit if I am to continue with the D-one but there is really no need to take the risk of sailing single handed in a new twitchy boat without safety cover.  As a matter of interest, it went up to 14 mph during the time I would have been out.

A bike ride is just as interesting and keeps me fit as well as taking me to Kirkcaldy for the bank.  In general, I feel a bit surplus to requirements at the moment but perhaps the idea lurking at the back of my mind is that I am getting older, have a damaged brain anyway and am now on steroids, is it surprising if my mental ability to produce anything useful is in decline?  It absolutely must be, just as my physical decline cannot be denied PMR is characteristically a disease of the over 70.  Both of course are a matter of regret, but that does not alter the facts.  The important antidote to continuing dissatisfaction with this state of affairs is to reset the targets i.e. drop the ambitions of a far younger man and adopt those of an older man (although not necessarily those of an `old’ man).

It seems to be that the restless ambition to `do better’ or `achieve’ has not left me but tidying my desk and filing do not seem to qualify as `achievements’ but as time `wasted’ when I could be doing something `worthwhile’ (such as this useless navel gazing).  The reality is of course that the `housework’ part of life is both unavoidable and necessary if the productive part is to happen.  Putting off tidying simply makes the achievements more difficult and less likely whilst overlaying everything with a sense of inadequacy (entirely correct).  So I can easily carry on like this or do something about it!

28 Sept Just back from a trip through the Caledonian Canal.  Spent last night eating various snacks straight after tea: packet of parsnip crisps and packet of walnuts, 2 packets of ordinary crisps and 2 apples.  I am now 12st 4lbs with a little chubby belly and rather a fat face.  The solution is clear: stop eating snacks and I can help that by not buying them in the first place and/or throwing them away uneaten (which seems a hell of a waste but is actually less damaging than eating them and taking the damaging calories on board; either way the food is destroyed but ditching it at least saves it destroying me in the process).

5^th Oct.  Had a good day yesterday assembling the tri; but this morning I am feeling quite tired although revived a bit by lunchtime.  Felt as though I was running on empty all day but I did get the mast up and the autohelm sorted out and so it was a very good day despite the tiredness.  Had a 30 min sleep after tea and that helped.

10/10/10  Feeling a bit knackered after a late night last night at Pitlochry and a battle with sorting out a flapping jib on the boat before we went.

17/10/10  Went to the boat for a sail today but after getting all the way to starting to rig, I decided that I did not feel like it after all and went all the way home again.  It was a combination of the day starting sunny and then clouding over, a little more wind than I wanted for my second sail (even though it was only a F2), cold weather and the prospect of a rising wind, no reefing lines in and a slack jib but too much wave motion to make it easy to fix, no lazy bag fitted (I plan to use the spinnaker halyard for now and leave playing with the spinnaker meantime although I can always change it back).  I felt a bit of a wimp and rather inadequate but on reflection it is probably due to an inability to increase the cortisol levels on demand sufficiently to trigger the benefits: Normally, it’s present in the body at higher levels in the morning, and at its lowest at night. Although stress isn’t the only reason that cortisol is secreted into the bloodstream, it has been termed “the stress hormone” because it’s also secreted in higher levels during the body’s ‘fight or flight’response to stress, and is responsible for several stress-related changes in the body. Small increases of cortisol have some positive effects:

·         A quick burst of energy for survival reasons

·         Heightened memory functions

·         A burst of increased immunity

·         Lower sensitivity to pain

·         Helps maintain homeostasis in the body

While cortisol is an important and helpful part of the body’s response to stress, it’s important that the body’s relaxation response to be activated so the body’s functions can return to normal following a stressful event. Unfortunately, in our current high-stress culture, the body’s stress response is activated so often that the body doesn’t always have a chance to return to normal, resulting in a state of chronic stress.

Higher and more prolonged levels of cortisol in the bloodstream (like those associated with chronic stress) have been shown to have negative effects, such as:

·         Impaired cognitive performance

·         Suppressed thyroid function

·         Blood sugar imbalances such as hyperglycemia

·         Decreased bone density

·         Decrease in muscle tissue

·         Higher blood pressure

·         Lowered immunity and inflammatory responses in the body, slowed wound healing, and other health consequences

·         Increased abdominal fat, which is associated with a greater amount of health problems than fat deposited in other areas of the body. Some of the health problems associated with increased stomach fat are heart attacks, strokes, the development of metabolic syndrome, higher levels of “bad” cholesterol (LDL) and lower levels of “good” cholesterol (HDL), which can lead to other health problems!

21/10/10.  OYTS upsets have given me quite a bit of hard thinking but the organisation is now back on an even keel.  So PMR and steroids have by no means blunted my ability to respond to a crisis and it has all worked out very well.

31/10/10.  A couple of days ago, just before the dinner, I had belly ache and was awake with it from 1am till 5am.  I then slept a bit to catch up including the drive to Greenock but stayed up to 1am and had a great evening at the dinner.  So although I did not feel brilliant and was very tired after the tummy bug, that proved to be a just the effects of the toxins on my system (perhaps accentuated by cortisone).

2/11/10.  Tuesday, so another 0.5mg reduction to 10.5mg.  This (or the runny tummy) seems to produce a natural lethargy in which you do not want to do much other than lie down and snooze.  But I have found that over-riding that feeling and pushing on anyway produces the same feelings of satisfaction e.g. after extending the seating area in the garden and getting my iphone connected to the web, despite not feeling like doing either at the time.

15/11/10 Now at 9mg and have generally been feeling borderline effects as I have moved down which is what you would expect as the natural cortisol level struggles to compensate.  However, despite this, I am generally feeling pretty good and riding well.   Eating out often means that I cheat on my diet and will frequently have a roll and butter with my soup, breadcrumbs on meat or fish and sometimes apple crumble, so I am taking in gluten (and notice increased catarrh as a result.

18/19/11/10  9.30am Now at 8.5 with slightly greater borderline effects e.g. slightly bothered right shoulder and right thumb joints.  I am also feeling a bit knackered. 

20^th holding at 8.5 as I had shoulder and hand effects which are now fading during the morning but still feel rather tired, veins also very prominent on back of hands so I will be getting blood tests to check for inflammation in Monday 22^nd

23rd Back up to 10 as I got up this morning with stronger aches in the right arm and shoulder plus the left arm joining in and even some beginnings in the legs.  The report I later got of the blood test showed the CRP (I think) was at 40 i.e. way up.

The cortisone boost in energy seems almost immediate and so this presumably accounts for the tiredness which a reduction produces.  I am planning to go back to 9mg tomorrow i.e. a little up from the 8.5 and carry on at that level for say a couple of weeks before trying to get down to 8.5 again.

25^th  On 9 yesterday and now.  This has stopped the left arm being a problem and reduced the right arm and shoulder problems to the earlier levels i.e. there in the morning but away by the evening, so I will continue at this level for a couple of weeks to allow the underlying disease to continue to go down.  We checked back and it took 2 months to reduce from 11.25 to 8.5 (both points where I had to increase the dose because I had been coming down too fast (latterly 11% per week) instead of  25% over 2 months, so a reduction rate of 12.5% per month looks to be the limit. i.e. 1mg per month = another 9 months BUGGER.  But I have to admit that it allows me to function when otherwise I would be feeling 90 and in pain too. 

11am and beginning to wonder if I should go onto 10 again; however, I think it will be worth persevering as I can always do it later if found to be necessary. 

2.30 Went for a ride and afterwards feel pretty good and certainly no need for 10mg.

26^th  8 am Slight effects in left elbow and upper thighs/hips areas plus the usual right arm, so certainly not overdosing at 9mg and far too soon to be contemplating reducing any further.  The current level appears to be barely adequate, but it is still early morning so we will see how the day progresses.

27^th -30^th Steadily improving at this dosage, right arm only at 9.am (mornings always start a bit stiffly).  Although I have put down the recent difficulty to coming down too fast, it could simply be that I have encountered the level at which I need a maintenance dose and no matter how slowly I make the change, I will find that 9 is the necessary dose.  We shall see when I make a further attempt to reduce (in at least a week from now, determined by how I feel).  By pm there is practically no `pain’ (or slightly unpleasant feeling) anywhere, so 9mg is definitely enough.   So it took a week to ten days to stabilise after the glitch.

1^st Dec, Still noticeable effects in right arm/shoulder and left elbow at 11am but clear by 4pm.

4^th Found a 1mg pill on the floor but it was uncertain as to whether this was from this dose or the day before.  Took it at lunchtime anyway.

5^th Got up with effects extending to left arm and hips, so presumably the pill did upset things and taking it later did not put things completely right.  Things got almost back to normal later in the day, after snowboarding on the golf course but it was a bit depressing before then and finally by the evening, things were completely back to normal.

13/12/10.  Am now recovering from some quite serious tummy pain which kept me awake the night before last and confined me to bed for most of yesterday.  Still not fully recovered as I am still running at about 50%, but at least I am awake.  Quite a few generalised aches too at 10am, so I wonder if the permeability of the digestive tract is a factor in my PM.  By 8pm aches are resolved (not sure when they went but I had a bike ride and a hot bath so maybe that helped)

15/12/10.  Gone down to 8.5; nothing more than slight stiffness in right arm/shoulder and left elbow at 8 am.  Recovered sufficiently to be considering snowboard today but a bit hesitant as there are other things I could do which are less committing and just as enjoyable (and nearer a toilet, just in case).  Stayed at home and had a useful day with no aches by evening.

19/12/10  Still at 8.5 but yesterday and today the soreness and aches are more general.  Also suffering some bowel problems with lots of wind but have identified carbohydrates as the probable cause i.e. my breakfast potato is bad news and will be discontinued forthwith.  It is actually quite difficult to find a diet which is lacking in carbs and sugar; fortunately salads, meat, eggs and fish, and vegetables are all OK.

20^th  A bit achy this morning but it is a lovely day and so I made the effort and go snowboarding on the golf course.

22^nd Feeling OK now.

27^th  Now down at 8.  The first day was not good, it was difficult to pick things up off the floor and I was walking like a man of 70, snowboarding did not feel an attractive idea as my reactions seemed too slow.

29^th  Much less morning effect now, so clearly the initial drop makes a demand which cannot be easily satisfied immediately.  However, I am writing this at 10.30am whilst feeling pretty knackered from struggling with FC matters.  I tend to forget that the physical effects are also paralleled by mental effects i.e. the brain does not work as well either!    So I am knocking off for the morning and will do something less demanding (like having a sleep).  Half an hour in bed seemed to top up the energy level to be back on the scale although still registering `low’.  So went for a bike ride and came back slightly better if anything.  Now had lunch and the pills are beginning to work (unless it was the ride), so getting back to normal functioning.   Had another sleep and a walk and now at 3pm pains are virtually gone and brain is getting into gear, so it looks as though 8 is OK.  However I was still tired in the evening.

30^th  Originally planned to go skiing but I am not really up to scratch yet after the pill reduction so we did not go and my main feelings are of relief.  Had a chat to B who reminded me that it is always like this after an reduction and that there is light at the end of the tunnel.

Still feeling like an OAP before lunch but after a post lunch sleep, ride and shower felt renewed and back to normal by 3pm with very few signs of PMR.

31^st Went to bed early last night and got up early this morning feeling better than previously; well enough in fact to consider going snowboarding, but after just a few minutes at the computer I have to admit to feeling a bit knackered, so I am clearly not up to scratch yet.  I even felt tired after the walk to the shops and back and I am yawning away at 9.10 am.  So going to have a cup of tea and read the papers.

2011-01-02

            Survived the New Year rather well, getting up the East Lomond quite fast and enjoying the party afterwards but rather tired this morning and needed a sleep after lunch before reluctantly going for a ride round the Loch and gold course.  Came back feeling rejuvenated so I think it is most important to ignore the reluctance and remember the need to repeatedly challenge the cortisol production by creating the demand for it e.g. a bike ride or a snowboard (or even a walk for the papers is better than nothing).

3 Jan.  Got up feeling as you would the day after a bruising accident; various bits stiff and sore mainly right arm and shoulder but also hips and left wrist too.  Originally, I had decided to take enough medication to completely remove the inflammation.  On the reduction regime (where I reduce further once the pain has gone), that old rule obviously cannot apply or I would never get off the pills.  But I would have hoped that after a week, I would not have the present level of pain and stiffness, I will check back.  It seems to take ten days before I can expect to be symptom free but reducing does mean that if the underlying disease is still active, there will be a level at which the dosage become insufficient to remove the symptoms.  Also, the lower the level, the greater the percentage reduction that a half pill represents, so this is an investigation as much as anything.  Right now, if the present level of symptoms persists, I will be inclined to go back up a half pill and try again in a month when hopefully I will no longer need this level of dose.

After lunch, had a sleep and then had a ride.  Came back refreshed and feeling mentally more alert.  Did some useful work on the computer and by teatime am pain free, so it seems that 8 is OK and that riding is extremely helpful in reducing the inflammation (unless it was simply the afternoon effects working through; I doubt it as the improvement occurs during the half hour of the bike ride and is pretty dramatic.  It suggests that my chemical cortisol level is insufficient to overcome the inflammation but also that my natural cortisol secretion is working at least to some extent and this added to the chemical is then more than enough.   

4 Jan  As yesterday first thing, i.e. got up feeling as you would the day after a bruising accident; various bits stiff and sore mainly right arm and shoulder but also hips and left wrist too.  Went into town and walked to bike shop etc, then came back and felt I really needed a lie down.  After 15 minutes or so I wanted to see why Encore were doing well and got up and now at 10.40, I am already feeling much better with very little stiffness or pain, so it appears that the standard combination of exercise followed by relaxation does the trick.  (It may even be that the cortisol flood is signalled by the pain induced by hard exercise followed by the relaxation).

8^th Jan went down to 7.5mg.  Went snowboarding on 6^th and 7^th going well with no obvious effects at all.  This morning felt good with no after effects and so.  At this point, I am not sure if the problem is not so much completing the recovery from PMR (which is obviously well under way) but that of coming off a dependency inducing drug.  Either way, 8 (with exercise) was obviously more than enough (despite the doubts 5 days ago) and so I need to keep coming down until I encounter PMR which has not cleared after 10 days or serious PMR shortly after coming down which is not really liveable with for the ten day trial period.  Had a bit of a scare re GCA in the RH neck area (roughly in line with the artery leading to the head but eventually decided it was actually a muscular soreness from snowboarding, so no problem.

9^th Jan. Despite the reduction, I got up with almost no aches and the `GCA’ neck soreness is also less, so this is very encouraging.  I do have some slight RH finger joint  `rheumatics’ but only when pressing with the other hand and these have been there for a while (I also banged them on piste a couple of days ago).   Still welcoming a sleep to help overcome a degree of fatigue.

10^th Jan  The GCA neck has now gone and the fingers are better so these were clearly due to snowboarding.   I also felt almost perfect despite the reduction only 2 days ago so I am going to try a new technique:  I am going to do an indoor cycle on the training rollers before having a shower and see if this will substitute enough natural cortisol for fact  that I have dropped another half to 7mg.  The indoor trainer is very good in winter if only because I can listen to the ipod at the same time and there is no need to get wet or cold going out on the bike.

12^th  A hard day snowboarding yesterday and one or two slight aches probably as a result, so I am keeping with 7mg for today even though I would like to continue the reduction as it certainly seems as though the PMR has either gone or is very subdued.  I am tempted to try a 1mg reduction but there is no need if I can continue with 0.5mg more frequently.   It seems that the sleepiness I am experiencing is a result of low cortisol levels which are either an effect of the PMR or the reduction.

13^th  Still on 7mg but very little aches first thing and I obviously felt I had energy as a garage clear out and reorganisation was planned; quite a big job.  But started at 8am and was feeling knackered by 9am; then had a 20 min sleep but was still feeling knackered 20 minutes later.  Barbara drove me to the dentists and back and I snoozed both ways and still felt tired si had another 45 min sleep; but it was only 5 days ago that I was on 8mg, so I suppose this is a reasonable bodily response (or lack of).

14^th  Got up looking forward to getting on with the garage but soon found that lack of energy made shopping more attractive.  But then had a good hour or so successfully fitting things neatly into the new layout but now feeling pretty knackered and more like going to bed than doing anything energetic.  Decided to read Adrenal Fatigue on train.  The ride back will give me a feel for if exercising despite the (apparent) lack of energy is the answer or if there really is a shortage of energy and riding home is painfully slow and hard work.  I really enjoyed the ride and got off at N’Qferry rather than Dalgety Bay as planned and then rode the whole way home.  It was a nice day and the wind was behind but got back feeling energised rather than drained, so once again, exercise seems to be a `good thing’ even when feeling a bit  `under the weather’.  I also had a nice hot bath after the ride and perhaps this helped too although I was feeling good before then anyway.

16^th  In pretty good shape first thing.  Had a ride inside and a shower and spent an hour or so editing a picture which the computer then lost! But the rest of the day was excellent at D’s and the pictures to see the King’s speech where I cried a little (to show that my emotional side is coming back.  (I might even get interested in music again).  Currently an planning a further reduction on Tuesday if all goes well meantime.

17^th  Only very slight shoulder symptoms but otherwise OK before breakfast and pills. Beginning to get my old discontent back, i.e. the need to achieve something other than merely stay awake or survive.  The garage rehash was the start of this but it is taking a while and no longer feels to be worth the effort (although I know it is well worth doing as it will then last me out).  Still tending to tire easily after a walk to the shops and a bit of brushing and garage clearance and still only 9.35. 

            Had an afternoon ride and spot of gardening but in the evening had to go to bed for an hour to survive the evening’s viewing.  For a person who is `ill’ I had had a busy and successful day, but measured against a normal person, I was performing very poorly (which I suppose simply confirms that I am not yet `normal’)

I had assumed that the level of enthusiasm and the ability to perform would rise together but it seems that this is not the case; e.g. I may have no enthusiasm for a ride but still perform quite well and feel better for it.  Equally I may be keen to make progress but still lack the necessary energy.  But this may be just my dissatisfaction element that has always driven me to succeed.   However I am the only one who is going to make the judgement about achievements so I need to stand back a pace and make sensible judgements i.e. ones which are likely to help me get better quickest as this is the one success that really matters.

18^th  Feeling equally good as yesterday but now down to 11st 3lbs which is pretty much my `fitness weight’ in my early twenties.  I have been eating sensibly and am carrying very little fat but unfortunately, it looks as though I have also lost quite a bit of muscle too.  However, the body I have left is certainly adequate for the life I lead, so it has been a sensible adaptation.  Lots to do today, more garage work, clear my desk, new sim card, OYTS essay, etc.  Had a good day and so decided to drop to 6.5mg 8 days after the previous reduction.

19^th   6.5mg no significant aches and went snowboarding.  Had a really good day despite the snow being very worn (very few people there and so no delays) and came home without stopping for a rest.  Had a brief 20 min sleep about 7pm but otherwise in great shape after quite a hard day of boarding and driving.

20^th  No aches on waking and feeling as good or better than yesterday despite the reduction, so perhaps the excitement of the snowboarding is producing the natural cortisol.  The weather was excellent for boarding (cold, sunny and light winds) and so I went off again.  The snow is now down to the base and although the piste bashers have done a great job, there is hardly enough area left for more than half a day.  Had a great time however and felt good throughout.  Stopped for a 10 minute power nap on the way home when I got stuck behind a bus and arrived back fresh as a daisy with no aches or pains despite the recent reduction.  Had a couple of naps in the evening but otherwise an excellent day.

21^st  Slight shoulders and hips but less than would be expected after two days hard boarding even if completely well.  Now going onto green tea instead of black tea; seems OK to taste (wet and warm).  Generally a good day, completed the pictures and did quite a bit of walking.

22^nd Away day at OYTS.  Lots of walking (some high speed with Robin) a long meeting and 3 hours of driving, all with no snoozes at all and feeling pretty good throughout.

23^rd stayed on 6.5mg but ready to come down further now as no aches in morning despite a hard day yesterday.  So I plan to drop to 6mg tomorrow if all continues well.  I reckon that my adrenals are now working fine and if anything my drug induced cortisol levels are too high and cannot adjust down appropriately.   Ideally, I need to reduce to the point where I am once again feeling sleepy and achy  i.e. too low when hopefully the natural levels will then be adjusted upwards.  It is tempting to try a 1mg reduction but rather than do that, I could reduce the interval between reductions.

After quite a lot of thinking and emailing re the away day in the morning, after lunch I felt a bit weary after some quite modest gardening and garage effort which is as it should be except that I then needed to get on my bike and I definitely did not feel like it.  (This is where the logical must override the emotional side).  The ride was a success as I felt revived afterwards but then after tea I felt tired enough to spend three 20 minute sessions in bed between TV shows (I wonder if a quick rev on the indoors bike would have been the better approach as going to bed certainly did nothing to raise my cortisol levels (as you would expect).

24^th  Got up feeling reasonably ache free but not very energetic first thing (pills obviously take time to have their effect and I know my own cortisol production is still  down).  Stayed on 6.5 as we have a late night tonight and tomorrow night.  The PMR is clearly pretty well burned out and I am now negotiating the cortisone reduction difficulties.  But within an hour of taking the pills the thought is occurring of trying music again (but I need to complete the garage re-organisation first).  Then a yawning trip the Kirkcaldy and back suggests that I am still undergoing the effects of the previous reduction; I certainly feel very lacking in energy at the moment but I suppose I will shortly have to go in and get my new glasses.  On that trip I experienced a brief hypoglaecemic moment which is apparently due to cortisol reduction.

25^th  Got up feeling fine and continued working well sorting out the garage through the morning.  Then suddenly part way through lunch I felt the beginnings of hypoglaecemia and so went to bed for only 10 minutes as it happened.  I then felt OK so got up and finished the meal.  Carried on with brushing sand away and sorting the garage until 2.15 then felt it was best to clear up temporarily so that I could go for a ride, but not feeling much like it (surprise, surprise).  So read for a bit and then went.  Did the Burntisland circuit (not very fast) but arrived home feeling fully restored, so this regime definitely works.   I also survived the Burns Supper very well although part way through I suddenly got my PMR right side shoulder pain.  It had gone by the drive home and did not reappear by the morning.

26^th  Went snowboarding on very lumpy icy conditions as it turned out.  Managed very well but it was dangerous and so rather than ski until I injured myself, I though discretion was the better part of valour and called it a day after only a few runs; enough to get my exercise but not enough to cause damage.  I then went and bought an Ipad on the way home (which turned out to be a good decision).

27^th  Got up without any aches etc, stayed on 6.5mg but the usual tech problems connecting the Ipad soon lowered the self esteem.  Dentist later today and still got garage problems to work on so I may be able to make solid progress there when stumped by the Ipad problems.

28^th  Got up without any aches etc, stayed on 6.5mg.  A long day at Pitlochry but drove home fine and no problems anywhere.  Overindulged on rolls and apple pie at dinner.

29^th Got up without any aches etc, and went down to 6mg.  A bit sleepy pm but then alert for driving back from Pitlochry.  Bed by 9.30pm.

30^th Slight PMR effects on getting up, otherwise OK.  Struggled all morning with the modem problem and had a ride in to Woolies.  All functioning OK.

31^st  Slight PMR first thing.  Lots of walking to try to sort modem.  Organised expert to complete the fix tomorrow.  At least got the web back.  Quite tired in the evening though so had an easy TV time.

1^st Feb Slight PMR effects on getting up, otherwise OK.  Got help with the modem problem and the Ipad is now connected.  OK till lunchtime apart from a couple of yawns first thing.  Now 2.15 and noticing a bit of tiredness, so it is getting time to get physical.  Rode to Kirkcaldy in high winds and rain and back via lanes.  All going well and then had a good evening.

2nd Feb  Slight PMR effects on getting up, otherwise OK.

3nd Feb  Slight PMR effects on getting up, otherwise OK.   Had a good ride before the wind and rain came in and feeling good generally with no PMR by 15.00.  Had a sleep in the evening.

4th Feb  V Slight PMR effects on getting up. But a bit yawny first thing, otherwise a good day.

5^th  Had a good meal of lamb with lots of potatoes last night and then ate a lot of bread fingers and cashew nuts.  This morning the PMR effects are much more noticeable, so there may be a link.  We shall see.  Had a bike ride back from the boat and although initially feeling under PMR, by lunch time at home I was bouncing with energy, (which soon dissipated after a spot of gardening and driving to B&Q).  Still aches are negligible so I am coming down to 5.5mg tomorrow to keep the system under stress.

6^th  Feb This morning the PMR effects are again much more noticeable especially the right shoulder, however I have reduced to 5.5mg as planned on the basis that I can always top up again if necessary.  A rainy day so I have got my gears to fix, shelves to put up in the wee garage and boxes to sort as well as the ancestors to put in. i.e. plenty to do; all I need now is the energy to go and do it!

7^th Feb  PMR effects back down to closer to negligible (completely clear by lunchtime), so it looks as though the worsening could have been food related.   Yawning a bit pm.

8^th  Snowboarding at Glenshee; going well but v poor conditions so left early.  Late night at Robin’s birthday but functioned well throughout.

9^th  Just slight symptoms am but generally feeling good and had a good day all round.  As usual a bit reluctant to go for a ride but felt fine afterwards and very active right until bedtime.

10^th Thursday.  Went snowboarding again and had an excellent day performing very well despite a few icy patches.  Fully functional apart from taking a 20min nap on the way home (I felt pretty tired after three hours of full on skiing).

11^th Dropped my dose to 5mg a bit early perhaps but we will see, feeling OK at lunchtime and had a good day finishing in around 10.30 with a drive back from Edinburgh, so that has to be a complete success (thus far).

12^th Wrote some stuff on the EO BB and to Sam re the OYTS, then had a ride to LIDL then after lunch worked hard in the garden with no problems, so plenty of energy for a 70 year old.

13^th Sunday.  Slight clicking etc in the RH shoulder but otherwise no problems. A good morning, with a ride to LIDL, no aches etc by lunchtime.

16^th Wed.  In good shape after working hard in the garden on a new layout,

17^th Thursday.   Had a hard day driving up and then snowboarding at Cairngorm with Andrew but survived very well. Stayed out.

18^th Friday.  Drove back home as the weather was useless, did a bit more on the garden and rode in for my repaired Iphone.

19^th Saturday.   Down to 4.5mg  Carried 22 bags of chippings up to the new layout and laid them.   Despite this and the snowboarding, my right shoulder is virtually fine as I type at 4.30pm (although I was yawning a bit and felt a bit sleepy after lunch)

20th. Sunday. Completely clear apart from the usual crunchy noises from the shoulder.  Spent the day gardening and although  bit yawny during the day and evening, otherwise completely OK.

21^st Monday  Slight aches first thing but spent the day hauling 1 ton of rocks to build drystone wall.  Felt OK afterwards.

22^nd Tuesday.  Up to Glenshee but poor weather so came home and gardened, taking cuttings to tip.  Feeling good so plan to reduce to 4mg tomorrow.

23^rd  Wed.  Awoke generally aching so stayed on 4.5mg and wondering about bacon role at Glenshee.  Gluten could be the cause.  Rode with T today in muddy conditions but enjoyable despite feeling my real age and being rather slow.  As usual the after effects are good in that all the aches have gone and after a bath I now feel nicely tired.

24^th  .  Awoke generally aching again but less than yesterday.  I can put the legs down to the hard cycling but the shoulders are probably PMR (although we did have to lift the bikes over about 20 gates and styles.    Stayed on 4.5mg.

The plan was to go snowboarding at Glenshee and after dallying over it for ages, I went only to turn round (twice) when it looked a bit gloomy ahead.  As it happened, I felt fairly knackered all day and Glenshee stayed pretty cloudy until about 2pm and even then it was quite crowded.  It is now 4.30pm and despite doing very little today, I felt knackered enough to go to bed so it was certainly right not to go snowboarding. 

Read up on PMR on the web and clarified that fatigue is a characteristic when reducing the dose and `overdoing it’.  It seems to have similarities to ME in that respect; anyway, I have ordered a CD on the subject so will see what that says and meantime I will stop pushing myself as a `get well soon’ policy as it may be overloading my weakened system.

25^th  Not as bad as yesterday but still have low level RHS shoulder and knee pain and general slight tiredness first thing.  Trying to settle to the idea of not doing much at the computer or in physical work because both use cortisol.  This is so much against the grain that I think the best I will be able to manage will be to stop pushing myself so hard.  After going for the papers and just pottering in the garage I feel fairly tired, so it looks as though the body itself imposes the limits (and on the whole, I am very happy to accept them and take the necessary rest, which turned out to be 2 hrs asleep after lunch and felt a lot better afterwards even though still a bit tired, so had another 20 minutes).   Later went to Pitlochry had a lamb dinner and rolls plus a gluten sweet but drove home without difficulty beyond a couple of yawns.

26^th Saturday  Did a tiny bit in the garden and then roughly `completed’ the garage tidying up before lunch but felt quite tired as a result.  I would have liked to go for a ride after lunch but went to bed a couple of hours and then had a hot bath instead as we have a late night tonight at the OYTS.  Veins very prominent and very slight shoulder pain still around at 4pm. A good night and OK to drive home arriving after midnight.

27^th  Up early with very little PMR effects and even these had all gone by lunchtime.  Veins also a little less prominent, so clearly the overload has now dissipated; it must have been the compounding effect of several days of overload which did me in.  Still a little tired but also still ahead of most 70 year olds despite the PMR.  I might even go snowboarding tomorrow.

28^th  As yesterday, so went boarding and had a hard day’s boarding performing very well despite a few yawns on the drive up.  Conditions were excellent as the small amount of snow had been conserved and looked after very well.  Few people there but brilliant blue sky and sun so an excellent day.  Might even go again tomorrow as it sounds rather similar.  A few yawns but no pains at all in the evening despite the continuous boarding and very hard off piste where the sun had not softened it.

1^st March  Another brilliant windless day of blue skies and sun, so I could go snowboarding again, despite a few aches from yesterday.  So I went and had a great day despite having some doubts about `overdoing it’ again.  I was going well and as there were very few people there, there were no queues at all, hence I covered a lot of ground including the Tiger.  Apart from the odd slow speed `sit down’ I did not fall off at all despite travelling at max speed throughout.  So all in all a great day and performing at my peak.  Now going to have a celebratory bath.

2^nd Wednesday.  Reduced to 4mg today.  Feeling some effects of the snowboarding with slight shoulder and hips effects at 10am.  But these had faded quite well by the evening visit to BUPA.

I have decided to invent a scale of PMR pain/inconvenience:

Scale of PMR Values:

1 = Mainly shoulders only affected and not very much.

2 = As above but with more general effects e.g. inc hips, fingers, but not seriously discommoding at all.

3 = Not too painful when relaxed but getting to be a bit of a nuisance when moving. E.g driving, walking, using tools. (May be a bit lacking in energy).

4 = As above but generally a bit slow and painful to do things such as getting dressed.   Difficulty turning in bed; (May also be generally lacking in energy).

5 = As above but more than one painful joint.  Difficult to comb hair.  (May also be feeling a bit unwell).

6 = Fairly extensive PMR; most actions still possible but slowly and with some pain and difficulty.

7 = Very extensive painful and stiff joints; some actions impossible or only possible with pain.

8 = Very extensive painful and stiff joints; most actions now painful and difficult.

9 = General PMR; with pain and stiffness throughout; everything is getting difficult e.g. putting clothes on, getting out of bed, reaching, gripping etc.

10 = Full blown PMR; serious pain and stiffness throughout; everything is very difficult if not impossible without help e.g. putting clothes on, getting out of bed, reaching, gripping etc.

3rd  Thursday.  Cloudy day so no snowboarding which is just as well as I have some aches etc rating about a 2 on the 0-10 scale.  I will go for a ride later to check out LIDL.  Generally lacking in `get up and go’; I have things to do e.g. garage, go for a ride, garden, even tax (God forbid), but not enough mental drive to force my reluctant body to make the effort.  It is just too easy to make an excuse or do something less demanding (like writing this drivel).  I will garden and go on the bike this afternoon when it is warmer (hopefully); I may just go and have a lie down meantime although that feels like giving in.  Submitted a piece to the EO BB which got a very positive reaction by 11 pm.  This small `victory’ seems to have had a rejuvenating effect on me in that the aches seem less and my energy seems to be greater, quite amazing but is probably the pills kicking in.  By Pm the `aches and pains’ have virtually gone and so I went a ride in to LIDL and the bank.  My votes up have now reached 30 with other complementary posts, so I don’t feel a complete waste of space.

4^th Friday.  PMR rating 1 but as yesterday a bit lacking in `get up and go’ so I suspect that I will need to engage in some physical activity to `get started’ rather than simply sit at the computer but had a very good morning on polarimetry.  Had a good day thinking but it was hard work.

5^th Saturday.  PMR rating 5/10 with sore shoulders and generally painful hands, joints etc.  Could get bowls out of cupboard and don a shirt but with difficulty (socks ok).  I suspect that it may have been my indulging in bread rolls, cheese, chocolate and icecream last night which may be the cause, but it may just be the fact that it is the third day after my reduction to 4mg.  We shall see how it goes.   Pains easing by lunchtime, now down to 2 or 3 and after a pleasant ride into LIDL followed by a hot bath, I can feel no pain until I raise my saluting arm (so clearly unfit for the army).  So rating now about a half.  By teatime, I am even considering snowboarding on Monday and after tea it settled to about a 1.  We shall see what Sunday brings.

6^th Sunday PMR 4.  I am wondering if the cracking noises from my shoulder are due to higher than normal levels of gases in the blood and/or higher than normal viscosity of the synovial fluid.  Either way, I am reducing the amount of diuretics such as tea that I drink, increasing the amount of water and taking activated carbon tablets.  These measures should make a difference if PMR is in fact due to the damage caused by micro cavitation in joints and muscles. PMR down to about 1 by 3pm after a walk at DBSC.

7^th Monday. PMR 3.  Went in for lunch with T and rode back from N Qferry.  PMR = 1 afterwards, so again the exercise demonstrates its ability to make a considerable improvement overall including pain, mobility and general feelings of optimism/health.

8^th Tuesday  PMR = 1 (later revised to 2)  Is this the benefit of the charcoal tablets or simply the usual readjustment after a step down; it usually takes a week which is tomorrow.  By bedtime I was down to PMR = 0.5

9^th Wed.  PMR = 1.5 so trending the right way but whereas a few weeks ago it was mainly the right shoulder which gave me the rating, these days I have more general effects e.g. hips, hands too (although fortunately not too much).  I also have the mental effects which are less easy to quantify but which appear to parallel the aches and pains at least roughly. i.e. a lack of get up and go.  Right now it is frosty outside and so I don’t want to go for a ride even though I know it will do me good.

10^th Thursday,  PMR = 1.5 or so but by 4pm down to 0.5 feeling generally OK.  Will go for a ride to get rid of even that.

11^th Friday  PMR 1.5  A hard day snowboarding at Glenshee.  A brilliant day lots of good snow, very few people.  No PMR effects during the action, did not even sleep on way home.

12^th Sat  PMR = 2 but some of that is probably the usual after effects of hard training rather than specifically PMR; however it is also a wet day and pensioners say `that always affects my rheumatics’. 

11^th Sunday.  A bit uncomfortable in bed and got up rating about 4.  I had stopped taking the charcoal and restarted tea.  But this got me up three times in the night for a pee and may have contributed to the 4 rating, so had a morning bath which certainly helped; now improved but still about 2 at lunchtime and after a walk to the Black Rock I am now about 0.5 at 7pm, so a good story overall.  I will restart charcoal and will not have tea in the evening. 

12^th Monday.  PMR = 4 i.e. 40%  and I had to go for a pee about 3 times in the night, so I thought maybe the diuretic effects of tea are cumulative over the day; but apparently, the quantity and weakness of the tea I drink is not going to have a diuretic effect.   Today was a good snowboarding day at Glenshee after the wind dropped and the sun came out.  Great snowboarding off piste on excellent snow in the last couple of hours before it closed.  Ended the day at about 0.5.

13^th Tuesday a bit achy in bed and PMR = 3 on getting up which is down to 2 by 3.0pm. but at 5pm  PMR = zero after taking 2 paracetamol at 3.15!

14^th PMR = 4 and this is after no serious physical activity yesterday, so added a paracetamol to my morning pills as that brings rapid relief (and hopefully will not be necessary long term).  Went boarding and had a great time with no problems although began to get tired after 3 hrs of off piste and no queues.

15^th  PMR = 3 an most of that is probably due to yesterday’s efforts.  I am taking the day off to see Diane.

16^th PMR 2.5  Went boarding to Glenshee anyway and had a great day.

17^th PMR = 3  took a couple of paracetamol and Bike ride helped.

18^th PMR = 4 but committed to going with A to Glenshee.  Had a really great day despite PMR which was not noticeable once I was on board in wonderful conditions and filming each other.  A long hard day but thoroughly enjoyable.  We finished about 4pm as we were both beginning to feel a bit tired and it is better to finish whilst you are still uninjured.  Magic as Scotland has the best snow in Europe right now.

19^th  PMR = 7 difficult getting shirt on and reaching for cereal bowl etc.  Took 2 paracetamol to see if that helped but it didn’t.  Now improving 30 mins after the 4mg and down to about 2 by lunchtime although I seem to be overheating a bit.  Pitlochry; lost of clapping at G&S produced aching shoulders, otherwise no problem.

20^th PMR = 7 Had a couple of paracetamol at 1am and at 5am as arms sore in bed for turning over.  Went for a 30 min beach walk, now midday and at about 3 which came down to perhaps a 2 by 6pm.   Shoulders a bit sore in the evening so took 1mg and 2 P at 11.30 and 2P at 3.30.

I discovered some data on Prednisone absorption.  On the black and white graphs, WM = White Male and the graphs show lymphocyte action.   I then plotted the reciprocal to get the effect of my dosing and aim to get a reasonably level of cortisone in the blood with a slightly higher level first thing

 After a dose, there is an initial short delay of about an hour before it starts to act, maximum effect occurs after 4 hrs and continues for a further 12 hrs to give 16 hrs in total, so taking at 7 am means that by 8am I am getting some benefit and by 11am I am getting the full effect which will continue until about 11pm.  If I take a modest dose of say 2mg, at about 8pm, it will be fully effective by midnight and will last until midday the following day and if I delay that until about 9pm, it will have become fully effective by 1am and will last until 1pm the following day.

The dosage regime for 5.0 mg for instance is 2mg at 8am, 1mg at midday, 0.5mg at 6pm and 1.5mg at 10pm.

Graph of 5mg top, typical 3 at 7am, + 1mg at 10am +2mg at 10pm. Lots below level 40

Proposal:  The far flatter graph of 1mg at teatime, 2 mg at 10pm, 3 mg at 7am optional 1mg at 10am i.e. 6 / 7mg. i.e. Almost all above level 50.

21^st PMR = 3  took balance of 3mg. 10am feeling a bit knackered, but still went to see Tim and rode back successfully i.e. now about PMR = 1 after tea.  Will repeat the one mg at night and 3 in the morning again until shoulders have calmed down and then drop down to say 0.5mg at night and 3mg at breakfast.

5mg 22^nd  quite a reasonable night but PMR = 5 on getting up.  Took 3mg and then added another 1mg at 9.30 as I was getting fed up with constant difficulty. Went for a sleep of 90 mins in PM and then a ride into K and back.  By evening PMR = about 1 but beginning to rise so took 1mg at bedtime and had a good night.

23^rd  Awoke PMR = 2 and took the balance of 3mg. After driving, later revised to a 3 and took an additional 1mg at 9.30 and had a reasonable night.

24^th  Awoke PMR = 2 and took 4mg so effectively now on 5mg per day with 1mg at night.  This should obliterate all signs if I am `overdosing’.  I am wondering if the general stiffness and pain of PMR is due to dehydration i.e. the body’s osmotic balance is upset. 2pm  Down to less than 1.  Took half pill at night but needed a Paracetamol twice during the night, so not so good

5 mg 25^th PMR = 3. took 4mg  Had a busy day doing the wind break but it stayed roughly the same and even came down to a 1.5 by evening but have taken 1mg at bedtime anyway.

5mg 26^th took 4mg and 1 mg at night . Rode back from D Bay and finished off the windbreak.

6mg 27^th PMR = 8 took 5mg and had a hot bath but still pretty `crippled’ before setting off North to meet B and A a quite a testing walk at Falls of Bruar and came back rating about 3 (slept in the car both ways).  Then after two paracetamol and a another hot bath I came down to a 1 by 5pm!

28^th  5mg in morning but still PMR = 4 at 10am. Took 2 para at 11pm and 3.30am

29^th  6mg PMR 4 at 8am Rode back from DB and to shops 2 by 5pm.

30^th  6mg PMR 4 at 8am  1 by 5pm. Took 2mg at 5am as it was promising to be a 7 by breakfast

31^st  8mg The earlier 2 + 5mg at breakfast PMR 5 at 8am, so effectively 7mg.   Tired pm but down to 1 by 5pm so this level is about right; took 1mg at bedtime

1/4/11  7mg Took 1 mg at 3.30am  PMR = 3  Then took 5mg at breakfast. Down to 2 by 11am. And less than 1 by 5pm after a bike ride and bath.  Had 1mg at bedtime. 

2nd April .  8mg Took 1 mg at 5am  and 5 mg at 7am, as PMR threatening to be 5 otherwise down to about 2 at lunchtime and 1 by 7pm.  Took 2 at 9pm

3^rd April 6mg had a reasonably good night and awoke PMR = 3 and had 3mg at 7.30 but needed a further 1mg at 10 am.  Had a ride into K and back and at 7.30 rated 1 which rose to 2.5 by 10.30 i.e. 49.  Had a 2mg at 10pm and see if I can get away with 3mg in the morning.

4^th April 8mg did not have such a good night and awoke at 5am but hung on.  PMR = 4 and had 3mg at 7.30 but needed a further 1mg at 10 am.  Still experiencing a 3 at midday but down to 2 by 2pm.  Took 2mg at teatime and down to 1 by 8pm.  Will take a further 2 at 10 and then 1mg at teatime, and 2mg at 10pm see Proposal graph.

15^th April  I have had a couple of weeks not feeling all that great despite being on about 7 or 8mg.  Had quite a bad day today as I forgot my 2pm pills till 3pm and as a result dropped down to 42 and ached quite badly.  So it seems that I should be thinking about at least 50 to 60 as the optimum band.  Took 1 at teatime and three at night for a total of 8mg

16^th Barbara suggested that I went back to the once a day regime and that I should take 10mg to `hit it hard’ so I am now on that.  Yesterday’s early morning was quite uncomfortable and I got up at about a 4.  It is now 3pm and I am very comfortable aches wise which is not surprising as the concentration is 180!  However, without supplementation at 10pm it would fall catastrophically to about 20 by morning but 3mg at 10pm puts me over 50 by morning.   I still awoke at 4am and found it difficult to turn over PMR = 2 although the graph says I should have been over 80!

17^th 8.5mg spread over the day. Awoke with about a 1 at 7am (60+) and took 5mg in the morning and will take 3mg at night which should put me over 80 between 9am and 5 pm.  Felt generally pain-free but still a bit yawny and lacking in energy.  The lows of about 50 are at 10pm and 6am, with 60 at 8pm.

18^th 8mg

19^th 7.5mg

20^th 8.5mg

22 April  7.5mg The boat is almost ready for launching and I feel quite able to do it and go for a sail as well having upped my dose, although I will try coming down to 7.5 today.  My main conclusion is to stop worrying about the dose, just take the minimum that I feel is necessary to be able to function reasonably normally.  With the aid of the graph, that is quite easy as even trying to keep a level dose give big enough swings to be able to dip into and out of the PMR zone.

23^rd  7mg Worked well solved a few problems and got the boat launched and feeling good despite going down to the 7mg planned.  Tomorrow I will stay with 7mg and see how I feel.

24^th 7mg Went for a sail across to Leith and back in quite gentle winds.  Cooked aboard and had an excellent meal of sweet and sour chicken with rice etc but I need a kettle to get up to boiling.  Quite a contrast to a couple of weeks ago.  In retrospect, I think I had come down too far at 4mg when I really needed about twice that and I was also pushing myself all the time which may not have been a good idea either.

25^th  A bit sore in bed from around 5am and got up at about a PMR 2.  This suggests a comfort/discomfort zone of 55 to 60 on my graph but whether this is due to sailing or a resurgence of PMR is anyone’s guess (I suspect the sailing myself).

26^th PMR = 5.  (despite taking 1mg at 2.30 last night).  Possibly food related as I had been indulging in the remains of the mixed nuts from Saturday night.  Took  5mg  this morning before consulting graph (probably an error)

27^th PMR = 9  Took 2.5 quickly followed by another 2.5 at 8am but at 10am still really struggling e.g. I had to dangle my socks to get them on and sitting down and getting up again are slow and difficult processes; I would try a hot bath but Bis out and I am not sure about getting in or out without help.  M and I had a bike ride planned as it is a lovely day but that is out.  Interestingly, I am rather cold once again and was happily standing over a hot radiator with the sun on my back drinking hot tea!  Another 5mg at 11am put me over 160 by 2pm and although I felt a lot better, I am still at about a PMR = 2.  A further 5mg at 3.30 and I am now at about a PMR = 1 and rating about 175 on the graph, so this looks to be about the rate level to aim at for now.  By taking a further 5mg at 10pm I get through the night and am still at 133 by 6am.

28^th  PMR = 1 or less ( I have restarted the charcoal tablets and they may have helped with the transformation.  Took 4mg at breakfast and maintained the level at above 120 for most of the day and it only dips to about 100 at 6am.  I will carry on with a 4+4+2+4 regime over the boat trip and then try dropping the breakfast dose to 3mg if I have been able to get back to cycling and have survived the trip OK.  That then puts me between the 100/120 limits.

May was not noted here but I obviously worked my way down from 14mg above to 6mg below.

1st June PMR = 0 got down to 5mg but had to revert to

4^th June 6mg on a 2+1+1+2 basis probably after over indulging on fruit and nuts but also possibly after having another sweet and sour chicken dish containing 28.6gm of sugar (see 24^th April).

6^th June 5.5mg 2+1+1+1.5 and feeling pretty good.  Today Rode back from DBI ate a sweet almond tart at lunch, lots of nuts and 2 bananas and an apple over the day.

19^th June Been on 2+1+.5+1.5 = 5 for a couple of days and finding that I have about a level 1 or 2, so undecided as to whether to go back to 5.5. which was fine or stick with it for a bit and see if I can adjust.  I have been stuffing myself on fruit and nuts and my weight has risen to the 11st 3 to 11st 5 range.  Anyway I am sailing this afternoon as it looks like being a lovely day and there is a race round Inchcolme. 

23^rd  No problem first thing now (although I start yawning and feeling tired about 11.30) so I must be getting used to the reduced dose of 5 but I will leave it a few more days before coming down to 4.5, probably by dropping my lunchtime dose to 0.5mg.

25th  No problem first thing and for the rest of the day despite overdosing on sugary things at Pitlochry last night.

26^th  Sunday am.  Slight tiredness and at a loose end, first thing and I not that this is not the first time I have found this.  Then general slight aches (not joints) after only a modest walk suggest that the PMR has either changed tack or is still lurking or could it be a delayed reaction to the sugar overdose on Friday night?   A hot bath sorted out the aches but still feeling a bit tired despite having a sleep before tea.

1/7/11.  Not convinced that the single 5mg dose is either enough or the best way to take it as I am quite achy first thing and lacking in get up and go but I am quite pleased not to be driving to Oban today to go sailing round Mull.  It took until about 3pm after a bike ride back from Inverkeithing before the aches dissipated so it seems that the 5mg single shot allows the blood level to drop to the point where the PMR can recover a foothold, whereas my distributed dose maintains a level which keeps it pretty subdued throughout the day and night.  I am therefore going back onto my 2+1+.5+1.5 = 5mg regime and may increase from that level.  I will start with a 1mg tonight..

2/7/11  Even the new dose regime is not enough to deal with the PMR so I took another 1mg at 10.30 i.e. I am now on .5.5mg rather than 5mg certainly for today and perhaps several days until I get back to equilibrium.

3^rd  Back on my distributed 5mg dose of 2 +1+.5+1.5 = 5 and it seems to be working OK.

5^th Awoke this morning with some energy to tackle the days activity, so clearly the distributed dose works well for me.

14^th  Still on 5mg but now beginning to wonder about reducing to 4.5 prior to my next blood test.  I still get a bit tired and snoozy as well as sometimes lacking in `get up and go’ but I now tend to persevere anyway and find that I fell better afterwards as a result.  Had a bike ride to LIDL and back and then an afternoon sailing up to SQ and back.  No aches and no problems, so not bad for a 71 year old.

17^th Despite a bad night, I have enough energy to restart my `stairguide’ project.

18^th Blood test today, result next Monday