For Dr J and the late Steve Jobs

For Dr J and the late Steve Jobs

After a conversation with a friend Dr J, I was reminded about some of the topics that I said I would write about- you can read them here

Its timely to be writing this after the passing of Apple CEO Steve Jobs, but I have found an unusual advantage to owning a smart phone – my iPhone Revelation...

Mental Fatigue is something I have been battling with for some time, but can see some of the results in the efforts I have put into curbing these problems.As part of the fatigue clinic trial I intensively saw a psychologist, and after the programme ended i continued to see a different psychologist to continue training myself to deal with the mental side of the Chronic Fatigue.

Many things have changed since to onset of my illness, some examples of mental changes/fatigue were (are still) concentration issues, reading difficulties, holding conversation with people, problem solving, critical and creative thinking, troubles with memory ect.

It was as though my brain had forgotten/lost these skills and abilities, some entirely, some to a less degree. This caused much concern and anxiety to me and close friends and family, and really made me think hard about where i found my value as a person – because it was no longer to be found in my abilities.

During my time at the fatigue Clinic my life became very regimented, every 30 min block, every day was structured and evaluated (i might post some pages from my calendar/diary) This was to ensure that i didn’t overdo it physically and to also plan how i could extend myself in a measured way to try to build up my abilities. Mental tiredness was addressed in this plan, I planned, everyday what i would do and for how long i would do it for. Some examples, reading, crosswords, iPhone games and puzzles, yes iPhone Apps, reading people’s blogs to keep in touch etc

This was for me such a revelation; I spent time every day (programmed in), in increasing time testing and training my mind to do the things that i could do easily pre illness. I started with 5minute time lots, in time stretching it to 30min time lots. The fact that these could be done at home, but also anywhere at any time, without setup, and with relative ease was fantastic and helped me to stick at it. Most of the Apps were free too.

I did and still do – everyday
Sudoku
Crosswords
Scrabble
Word games
Puzzle games
Board games
Strategy Play
Memory games

For me the separating and different ways to try to address the different types of fatigue (Mental/Physical) were very helpful, and i do absolutely believe as do those close to me that my mental abilities are still not to the level they were pre illness – but that they have and are still improving, and for this i am thankful to Apple and the technology that has made my iPhone medicine available.

SB

The Differnt Faces of Fatigue

It was not until my time at the Fatigue Clinic UNSW That I finally understood the different types of fatigue that i needed to address – each with a different approach, reason and differing strategies to help alleviate them.

I’m going to talk briefly about 2 of them
- Mental Fatigue
- Physical Fatigue

I cannot express my gratefulness to the staff at the Fatigue Clinic particularly Dr C who worked with me in regards to physical fatigue, and Dr S who worked with me in regards to the mental side of fatigue and helped with coping strategies.

Mental Fatigue I will address in the next post

Physical Fatigue is really hard to define, it is different to being run down or tired, but similar. One of the most common responses I have gotten from people as we have talked about my chronic fatigue condition is – “why don’t you just get some more rest” or “everyone gets tired why can’t you just push through it”

To explain – I can sleep but the sleep is not refreshing or restful. When I wake up in the morning i feel unrefreshed and more tired than when i went to bed. I do not feel refreshed, energised or rested after sleeping. This is not just every now and then but every night – and it seems to have a cumulative and compounding effect as in – being Tired, sleep, wake tired, got to bed tired, wake up more tired, and so the cycle continues (and has been continuing for some years now)

Other physical things are muscle soreness, aches, endurance and strength.

Later i will talk specifically about
Pacing
Programming
The fatigue cycle


SB

Back in Aus & A Bonsai Show

Feels great to be home after our time away, and we have got back into the well trod routine of our normals days and weeks.

Our time away was so very beneficial for our family, lots of time together and some really big issues discussed and decisions made (more in later posts)
Our time away was overwhelmingly good, although I still don't think I have fully recovered from the exertion nearly 2 weeks later.

Today I am venturing out to a bonsai show with a friend. It will be a big half day but with good sleep last night and nothing on this afternoon I hope it won't be a disaster energy / fatigue wise. I'm hoping the joy and excitement of being at the show will win the day for me.

Well I'm off to the show.

More posts to follow re:
Holiday
Insurance
Illawarra bonsai show
Health
and big decisions and changes on the way.

SB

γνῶθι σεαυτόν

γνῶθι σεαυτόν

It’s Greek for ‘Know Thyself’ (I hope my Greeks a little rusty)

Over the past 4 years there has been much need for me to do this due to illnesses and CFS.
It has been at times difficult, to say the least, and frustrating but i have had to relearn my bodies boundaries and limits and how far i can push them. This has taken much time and most of it was done by trial and error and making many mistakes.

That’s partially the reason for my absence in writing as i have been on the edge of pushing too far for the last 6 weeks or so and finally tipped over the edge last weekend and this week. To be honest it is a difficult balancing act and one which requires much change and tweaking each day. While I’m being honest it also frightens me knowing that if i tip too far over the edge that it could mean weeks or even months of down/low time.

My want over the last 6 weeks to be ‘normal’, feeling good and enjoying being active clouded my judgement on where my body was really at. So last weekend i felt myself slide over the edge. It all happened quite quickly – much quicker than in recent times. I definitely got my expectations mixed up with my abilities.

But i have learnt the tell tale signs of my body struggling to cope and that’s why i disappeared for some time, the need to abandon and rest as to shorten the time I’m down/low has to always win out.

Tell tale signs i have learnt to look for about my Health:
- Sore throat (if this happens everything stops)
- Cold sore (if this happens everything stops)
- Cold/Flu
- Muscle aches

Tell tale signs in other areas:
- Daytime sleeping
- Headaches
- Trouble thinking clearly
- Trouble with large groups people
- Struggling with crowds/Noisy areas
- Apathy, not shaving, not eating etc
- Not finding joy in areas activities that i would normally do

I’m very much looking forward to our down time on holidays with the family soon.


SeanB

Sickness and recovery

Friends

I've been quiet of late on the interweb front due in part to sickness and also trying to extend my working hours over the last few weeks.

As I said in my first post I'll post as often as I can, but I can not keep pushing to update blog. This has been one of 'those' times.

I still find even now, some 4 years on from the first signs of CFS that I am still quick to get sick and slow to recover. (compred to the average person)

I have still been thinking and drafting posts on

Pacing
The fatigue clinic
Psychology
Mental vs Physical fatigue
Insurance companies
My iPhone revelation
... and many more ....

I am hoping to post some of these thoughts soon.

SeanB

Exhibition Quality

Bonsai are always (in a perfect world) shown or exhibited in pristine condition. There are many examples of these exhibitions in Australia and around the world, some famous examples are:

Kokufu Bonsai Ten – Japan [1]

Noelanders Trophy – Europe [2]
A lot of planning goes into this. Sometimes the preparation starts months and months before a showing. The process of getting a bonsai tree ready for showing is time consuming, detailed and precise.

For an idea of this process see Graham Potter’s video - View here on YouTube [3]
http://www.youtube.com/user/GrahamWPotter

It does however create a somewhat false impression of the image of a bonsai tree (speaking personally about my trees) quite often they are overgrown, needing TLC, pots full of weeds, in need of re-potting, etc.
In fact it would be detrimental to the health of the tree to keep them in 'show' condition all of the time.

Having an illness (CFS) that has been ongoing for some time, I have at times felt like I am ‘on show’ when I go out in public, or see friends and family. It’s very similar to exhibiting bonsai trees – when I go out ‘on show’ I want to be seen at my best, this on reflection is for a few reasons:
- It’s nice to pretend even if for a short time that everything is ok
- I don’t want people to worry about me
- It’s easier to put on a show than explaining to people, over and over again about my illness
- My own vanity

But behind the scenes (just like exhibiting Bonsai) it takes a lot of effort to put on good show when faced with (CFS). The behind the scenes for my personally to put on a good show are actually quite precise, planned and not very exciting. For me it works like this.
Basically I have a limited store of energy (physical and mental) and i need to divide it up to accomplish what i need to do day to day, week to week. For example if i need/want to be out for a few hours on a Saturday i need to plan to rest the day before, and not plan as much for the day after. This assumes that I’m sleeping ok and not sick, if that’s the case then it’s just a case of surviving day to day. This process of planning and pacing i will talk more about in another post.

There are of course downsides to this ‘exhibition /show’:
- It takes much preparation and often doesn’t work to plan
- It gives people a false impression of how things really are and how i am coping
- People outside of daily contact with me my only ever see the ‘exhibition/show’ and can wonder if the CFS illness is even real or just a story or imagined
- It’s really a lie, its untruthful and dishonest

I hope to keep working on these issues and be able to somehow reconcile the difference between the two eventually.

Like all Bonsai this too is a work in progress


Sean



[1: www.phoenixbonsai.com]
[2: www.bonsai4me.com]
[3: www.kaizenbonsai.com]

A Small Life

"I live a small life. Well, valuable but small. And sometimes I wonder, do i do it because i like it or because i haven't been brave?" [1]

___________

I'm often left feeling like this.

I do live a small life.

Not by design, not through choice, but through circumstances that are outside of my control.

I know its not because 'I like it' or because I'm not brave' but still I am left with a small life just the same.

My day to day activities are shaped by my capabilities and abilities (just like anyone else) but both of these have been seriously reduced and are somewhat erratic, and in some cases even lost all together. This is at the center of my fight with 'Chronic Fatigue Syndrome' (CFS) Ongoing, persistent, unrelieved fatigue. Wanting to do and achieve many things but being constrained in the means to accomplish them.

It feels like a fight sometimes, just like a war (I'm hoping to not sound too dramatic) some days I have a win maybe even a few, and feel like I have taken ground - moved forward, then other days its like taking 10 step s back again - retreating and losing ground.

Bonsai has in many ways kept me sane, and my mind active.

Like I have previously said I also see Bonsai as a metaphor in may ways to my situation.

Living a small life.

Small, but valuable.

Living a Bonsai life.

Bonsai trees like their 'natural' cousins are fully developing trees. If you took a Bonsai tree out of its small container and planted it into the ground it would quickly develop into a full size tree, the same as one which seed has been sown in the ground.

Bonsai trees are very healthy (if cared for well) they are pruned, shaped, watered, fed, re potted regularly, and in many cases can outlive their 'cousins' by hundreds of years. Bonsai trees may be able to be traced back through many many generations and be quite valuable.

Just because a Bonsai tree (or person) is of a small size, or is restrained, does it make it any less worthwhile or valuable? No it makes it different, something I'm sad to say has taken me a very long time to learn.

[2] -pictures opposite used with permission

There is a vast differecne betwen different and worthless, between useless and valuable. it has taken thought, reflection, time, much time, for me to be able to say that while

yes my abilities and capabilities are restricted, and i may not be able to achieve all of my plans, hopes and dreams. the life that i lead, the relationships that i have are valuable, and i mustn't - cannot allow my values to be dictated by the 'size' of my abilities.

I dearly love Bonsai - the beauty of a tree in nature, scaled down to a vibrant, healthy tree in a container, a tree restricted in its growth rate, but different, yet valuable in its own an unique way.

A Small life

A Bonsai life

A Life truly worth living (in all its restrictions)

[1: Film: You've Got Mail]

[2: Bonsai pictures used with kind permission from 'Pup' from AusBonsai.com.au]

A bonsai Life

An excerpt from a my personal diary - Entry from June 2009

 

*

"its an impossible decision - give up what i love doing, for the people that i love -

Well the choice had been made- after much thought , speaking to Mel and some very close wise friends i decided to step down, resign from my position as children's minister. It has been a heartbreaking decision to make but in the end was only the real option. I was unable to fulfill my role as a father/husband, as well as the role as kids minister.

I feel like i have been fighting this decision for awhile-perhaps since the start of the year and feeling the effects of this ongoing tiredness and fatigue since at least last winter (June 08)

Its been a really, incredibly, difficult decision to make because either way the outcome is failing... which is something that i don't do. i like to think that i am able and capable and don't need help - that is, in stopping work i am failing... - Not being able to work and needing help is failing x2, a position i cant recall being in at anytime.

Not only that, but i am also acutely aware that this is an extremely selfish decision - and will place a huge burden on my family, especially Mel. she will assume the total responsibility for our income and stability. I need to look into insurance details. I hate that i have put this on Mel, and that with the extra stress of worrying about my health. I want to help out as much as i can, but need to rest as well.

Then there is not having the same amount of time and energy with Liza, i feel like i am letting everyone down, that i have failed in so many ways and am a disappointment to myself and all the people i care about and care for. Its cruel that in following doctors advice and doing the right thing, that I'm letting everyone down- especially myself."

*

 

2 years on and i have experienced a lot, i feel its time to put to paper - so to speak - some of the things i have learnt and am still learning...

 

SB