Part 2, February 2018 (aged 68):

An update on my progress after I fell ill with autoimmune encephalitis in January 2016.

General

I feel that I have come a long way since my illness in January 2016 and I am sure my family and friends would agree on this. Some days I feel 100%, but I know I am not yet back to normal. I still get bad days, particularly days of anger - sometimes intense; others of fatigue and occasionally periods of feeling very, very low (but not depressed). Also periods where my breathing is somewhat laboured. Despite these issues, I am obviously a very lucky person to have come through the combined illnesses as I have and without too many after-effects. I have registered with the Encephalitis Society, and read their literature and factsheets, and have compared my experiences with their observations and suggestions, as outlined below. I have found this site both informative and beneficial.

Anger

As mentioned above, I do get occasional 'anger' days, and have tried to rationalise/determine the reason behind them, with reference to the Society’s Managing Anger After Encephalitis factsheet. This 'anger' tends to manifest itself as a desire to lash out violently at inanimate objects.

A: Anticipate I have always had a temper of sorts, getting annoyed at little things but funnily enough not at major issues. Therefore, I am not really able to anticipate problems but have to deal with them when they arise. I have had many major issues over the years, and although keeping my family informed, I have usually kept the worst aspects to myself. I don’t believe a problem shared is a problem halved, believing instead that it actually multiplies the problem. I accept that this not the case in medical issues, and on these occasions I always endeavour to provide as much information as possible. With major issues, I am a 'I must knuckle down and find a way to resolve the problem and act upon it' type of person. In general terms, I can usually find a way to resolve matters.

N: Notice I now find I can spot on-coming anger fairly quickly. Golf in particular is an exasperating game at times and can lead to a build-up of anger, but this is easily noticed and I can take immediate steps to minimise it.

G: Go through a 'temper routine' This is not something that works with me.

E: Extract As soon as I feel the anger coming on, I extract myself from the situation as soon as possible, and have informed family, friends and golf colleagues alike that if I suddenly depart from an activity what the likely reason will be.

R: Record To date, I have not recorded these instances – this is the first attempt at putting issues down on paper. As suggested in the Encephalitis Society fact sheet, to try and minimise these occurrences, I do a fair amount of regular physical exercise and relaxation, as outlined below.

Health

With regard to health, I have always been reasonably fit and active, with my early working career and leisure activities providing plenty of exercise and fitness. My consultant stated that had I not been a very fit person, I would probably not have survived. I list below most of my now regular activities.

Physical activities:

Golf I play golf on a regular basis – normally twice a week (weather permitting), all year round.

Curling I play approximately 20 to 25 games a year throughout the winter months.

Gardening This is a constant chore, more so in the months leading up to winter, gathering leaves, pruning, mowing lawns, etc, and on average I probable spend 60 to 90 minutes a day doing it. In a way, it is also relaxing. Many years ago when my business was in serious trouble and I was very close to bankruptcy, I found that mindless gardening such as weeding, pruning, cutting grass, etc was very therapeutic. I find the same effect now.

Walking I had been doing a brisk walk (of about 2 miles) around the village where I live on a regular basis, but this has tailed off recently. Obviously I do a fair bit of walking around the golf course. My wife had a new knee seven months ago, and now that she feels able we do intend to do more walking.

The Society of High Constables of Edinburgh I am an active member of this long-standing society (since 1611), attending various society events and ward meetings/outings. I am also the secretary/treasurer of the society’s golf club, which involves a lot of administration as well as actual golfing. I am also an active member of the society’s curling club.

Fishing I enjoy a few days of fishing for rainbow trout each year. It is not very active but is relaxing, and gives me the enjoyment of the fresh air and good company, plus the added bonus of fresh fish for the family.

Grandkids I collect them from school one day a week and take them back to our house where we inevitably indulge in some 'rough wrestling' play activities – good fun which we all enjoy.

Holidays Cruising, both sea and now river, is a favourite type of holiday for Carol and I, and we do a fair bit of walking on the various trips available and locations visited.

Driving As mentioned above, I was informed that I would not be allowed to drive and that I had to inform the DVLA and hand in my driving licence then re-apply for it once I was deemed fit enough to drive again. It was a full year before I got my licence back during which time Carol was my chauffeur. I currently drive about 8000 miles per year.

Mental activities:

Stock market This is a year-round activity and I tend to spend 60 to 90 minutes per day updating spreadsheets, analysing, planning, setting up alerts, and buying and selling UK stocks, which I find both invigorating and pleasurable.

Reading I am a reasonably avid reader of both actual books and more so eBooks, reading at least one book a week. I find I can concentrate solely on the book and find this very relaxing.

Television I tend to mostly watch dramas/thrillers, wildlife, sports and news programmes, rarely during the day, mostly in the evening and generally for no more than two hours a day.

iPad I use my iPad on a daily basis, for news, sports and business items, emails and computer games (mostly Sudoku).

Computer I use this mostly for emails, letter writing and maintaining various spreadsheets, such as my stock market dealings, bank accounts, a winter golf league of 12 friends, and my society work. I am a bit of a spreadsheet freak, and have always enjoyed devising complicated spreadsheets to assist in making the running of my business dealings easier and currently for personal and financial matters.

Mentoring I have monthly meetings with a long-term business colleague who has a new business, helping him with practical and financial matters, whilst acting as a sounding board for his ideas. In general, being a male, I do not multi-task and try and concentrate solely on one matter at a time.

Fatigue

I find that I do suffer from fatigue, especially if I overdo my physical activities. I have made some notes referring to the Encephalitis Society factsheet Managing Fatigue After Encephalitis:

Sleep pattern I have never been a good sleeper, and in the early days of my illness, this was particularly bad, at one time being fully awake for approximately 150 consecutive hours. In the past, a lot of my time in bed was spent thinking about my business, strategic planning, preparing for presentations, quotations, accounts, etc. Being retired, this is no longer an issue, but it is difficult to break the habit of not sleeping well. I think I am now back to my old routine, which tends to be bed after midnight and up around 8 am (earlier on golf days), with a fairly restless sleep in between.

Course of fatigue over time Having experienced fatigue on a number of occasions, I have worked out that one of the best ways to minimise such occurrences is that if I have one full day of activity, I try and follow this with a day of predominantly rest.

Mood I do have mood swings, where I can feel very low. I don’t really do much other than keeping very much to myself until the feeling goes away. These episodes don’t last long before I return to normal, therefore I am sure I am not suffering from depression. The Encephalitis Society website says you should try and think positively. I would classify myself as a realistic optimist, being more negative than positive, hoping for good things to happen but not really expecting them to and thus not feeling let down when they don’t. Similarly, if I think negatively and things turn out better then I feel good about it.

Other My current level of activity and exercise is explained above.

Coffee I probably drink too much coffee (usually 4 to 6 mugs of strong coffee a day). I have a healthy and varied diet and have always been a good eater even when ill.

Water When I was in hospital, I was drinking a lot of water, probably about two litres a day. Now I tend to only drink when taking my pills morning and night, so possibly a half litre a day, with the occasional additional glass. Probably should drink a lot more. I also like a regular drink of milk.

Alcohol I don’t drink much alcohol, apart from holidays when I do tend to have more than I probably should. I have always had the capacity to drink a great deal without getting drunk and incapable (a very rare occurrence). I think that extra alcohol consumption does affect my warfarin readings, as was noticed after our recent river cruise where I did drink a lot and the reading increased significantly (3.2 compared to 2.5) and then fell back to normal after a couple of weeks alcohol-free.

Smell/taste The illness caused me to completely lose my sense of smell and affected my taste buds also. I can now notice strong smells, whilst my taste buds remain the same.

Noise In the early stages of my recuperation, I got quite agitated by loud noises. This only lasted for a short period of time and does not bother me at all now.

Medication I am sticking rigidly to my medication programme and don’t suffer any other pain problems. However, I have noticed a change in the feeling in my legs, which now don’t have much feeling for heat or cold since the encephalitis. In general, I don’t really feel the cold (unless intense) and never have done. I do feel my recent lengthy head cold contributed to an 'anger' episode as the anger disappeared as soon as I had recovered from the cold. My daily steroid intake is now down to 5 mg per day. In the early months of recovery, I tended to suffer from very vigorous restless leg syndrome whilst taking the drug haloperidol, but a change in my medication to sertraline cured this. However, when I started taking sertraline I had two of the recognised side-effects, namely excessive sweating, which has now ceased, and laboured breathing. I still get regular episodes of the laboured breathing for no apparent reason. They generally last from a few hours to a day, then cease for a few days.

Reactions I used to play a lot of squash and was quite fit and quick of action. In later years, I feel that this speed of action slowed down considerably. However, since my illness, my reaction time has sharpened significantly, i.e. catching items that others have unexpectedly dropped before they have had the chance to hit the ground.

Well-being I try and 'listen' to my body and act accordingly. When I am feeling good, it shows in that as the day goes on I seem to get more and more lively/awake, often staying up to 2 am or later and having to force myself to go to bed, and then still up at 8 am or earlier the next day. I do think the whole episode dented my self-confidence somewhat, but this has since been restored.

Holidays These play a big part in my well-being. I find that I am able to be more relaxed, can let my hair down and be more like my old self – social, happy and engaging with new people. This was very apparent on our recent river cruise, where I engaged with a good number of our fellow guests and a group of Australian tour guides, felt my confidence re-building and was last to bed every night. My wife and I intend having more regular breaks/holidays, normally accompanied by another couple of very close friends.

Physiotherapy I have a monthly session of deep tissue massage, which I enjoy and it also fixes any minor physical niggles I may have.

Memory Since my illness, this has been a big issue. I remember absolutely nothing of the 15 months leading up to my illness and nothing of my initial period of admittance to hospital, and up to the time I had the last brain scan with lots of electrodes attached (I think the last in a long line of scans). During the early stages of my recovery, I asked Juli-Anna when she was going to get married being totally unaware that she had got married in 2015. I do have a digital copy of the wedding album and other photos to appreciate the occasion. In general, I have a reasonably good recall of all the bad things that have happened during my life but I am finding it more and more difficult to remember the good times.

Photography I tend to take a lot of photos on holiday and these help a lot in remembering places I have been to. I hope to get around to making photo albums of the more memorable places my wife and I have been to.

Part 3, May 2018: further update

Mental activities I have now produced two photo books of holidays I had with my wife and friends in India and South Africa some years ago, and found the whole process, going through all the photos, selecting the best, and designing the layout both enjoyable and invigorating. I intend producing more photo books of other memorable holidays we have had over the coming months. I have also worked on my spreadsheets, significantly improving my stock market trading worksheet.

Physical activities Over the past month, I have tried to do physical activities on consecutive days to see if there is any improvement but after two or three days of activity (typically golf and gardening), I am utterly worn out and take a few days to recover. Therefore, it looks like I will need to continue the regime of one day of activity followed by one day of rest.

Anger My doctor wrote to me recently outlining the fact that the beneficial effects of the drug sertraline would begin diminishing, and I should start to wean myself of it. As it turns out, this has coincided with some flare-ups of anger and irritability recently, although this could be a result of the weariness from the increased physical activities.

Conclusion My family have reviewed this story and agree with its contents. I have also given a copy to my consultant and thank him for his input. He said he has found it useful, discussed it with other members of the team involved in my treatment, and will refer to it in treating any future patients he has who are suffering from encephalitis. I hope that the Encephalitis Society will find the above useful and of interest both for my particular case and also for any others who in the future are unfortunate enough to suffer from encephalitis.

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