3/1/06

HOST_Carolann: I think we will get started. It's the top of the hour and we should get our session under way!
HOST_Carolann: Welcome again everyone! And a special welcome to Leigh Hatcher who is our guest speaker for today.
HOST_Carolann: Leigh is from Australia and has written a book called I'm Not Crazy, I'm Just A Little Unwell - his personal journey through Chronic Fatigue Syndrome
HOST_Carolann: He has found hope in the wilderness of his chronic illness experience and is here today to tell us more about that.
HOST_Carolann: Welcome Leigh, and I will turn our time over to you.
Leigh: Thanks Carolann
Leigh: Hi everyone - it's a great pleasure and honour to be part of this chat - how amazing these things are! I'll begin my presentation now, but if there're any comments or questions on the way through, please don't hesitate to jump in!
Leigh: By the way - if I'm going too fast/slow - don't hesitate to yell!! I'd like to explain CFS as simple as I can. The first thing to say it's a real illness - yes it's a 'syndrome'.. (one reason why I think it's often regarded as being a bit 'dodgy', but so is SIDS. SARS.)
Leigh: How does CFS feel?? I used to say it's like you're on a permanent dose of the flu, and for me, if you combine that with wave after wave of blood sugar crashes each day. My body felt like it had something toxic flowing through my every vein.
Pamela: I sure know those symptoms Leigh
Leigh: Can I respectfully and carefully declare that I approach the whole issue of dealing with long term illness and the issues of care it raises through a Christian framework. Tough as my illness was - it turned out to be the most marvellous walk with God, and a deep, rich realignment of my Christian life
Mary_Lou: Amen! I can relate to that!
Pamela: I've had that same experience
Leigh: I was moulded in two ways. First - the good news. These insights have even more powerfully been won - by a deep and long-term interaction with God's word - directly. The bad news is - I've also been moulded - by a number of difficult and sometimes damaging experiences… sadly at the hands of some within the church
Leigh: At the same time - my personal experience - and my reading on this whole area - points to the whole business of pastoral ministry being a problem and challenge - that is often painful and perplexing for large sections of the Christian church.
Leigh: In his book 'How Long O Lord?', Don Carson writes… 'Anyone who has suffered a devastating grief or dehumanising pain has at some point been confronted by near relatives of Job's miserable comforters. They come with their cliches and tired pious mouthings. They engender guilt where they should be encouragement
Leigh: Philip Yancey, in 'Where is God when it hurts?' frequently expresses the same sentiment, after interviewing lots of sick and suffering people in the process of researching his book.
Leigh: 'All these people repeated their own versions of the cacophony of voices from Christian 'comforters'. One amputee told me "My religious friends were the most depressing, irritating part of the entire experience" - a pattern that disturbed me (Yancey) greatly. Something was wrong'.
Leigh: I readily admit that lots of my difficulties stem from the baggage that comes with Chronic Fatigue Syndrome. Notwithstanding the very considerable pain... suffering… and loss that a CFS sufferer experiences,
Leigh: all of them will tell you - the greatest pain comes - from the mis-understanding of the illness and the resulting mis-treatment of the individual. It is too frequently regarded as a 'can't cope' illness, or one where the sufferer has had some sort of breakdown - that it's all 'in the mind' - or WORSE
Leigh: Far too often, in my case, it translated into people believing that I had the power to get over it, if only I would 'psyche' myself out of it, or just 'cheer up'.
Leigh: That common view, expressed in many different ways, was enormously damaging because, quite simply, I did not have the power to just 'psyche myself out of it'. IF I DID - I WOULD HAVE!
Pamela: Amen
Leigh: To think that I had, therefore, chosen to be ill for such a long time, frequently VERY ill, and suffer such pain - and loss - or again - worse - to be thought shonk or fraud - was deeply offensive and deeply damaging.
Lylac: Yes, no one chooses to be sick.
Leigh: I've dwelt on my illness, because I think it goes to the heart of what I've come to reflect on - is one of the reasons why many don't deal well with ill people, especially long term.
Leigh: We often fail to meet them where they are. For me, the realm of church life from which I came - is almost singularly focussed on activity… activism… and achievements.
Leigh: It is almost completely conditioned to meeting people on the basis of where we want to take them.
Leigh: But there's also a very real danger of only ever meeting people - on the basis of our agenda and where we want to take them - not on their needs or circumstances.
Leigh: In dealing with the sick, (and ALSO I would argue the un-saved), this can be frequently offensive and appear so very arrogant.
Leigh: It's struck me that in one of the Bible's greatest stories of suffering, Job, his 'comforters' did their best with him - when they shut up, and did their worst - when they tried to impose their wrong-headed views on his circumstances.
Leigh: I believe we need to do better in dealing with the sick, (and un-saved) at 'meeting them where they are'. Or - we need to be "Loving People and Loving people".
Leigh: I mean it in two ways.. 1. 'Loving people' (FIRST in our own character - what and who WE ARE), and 2. 'Loving people' (in the things we DO) - especially among those who are doing it tough.
Leigh: In my view, we will do best at 'meeting people where they are', if we work much harder at loving them. This is perhaps the greatest area of challenge that I observed during my time of illness.
Leigh: Too often, I think in many of the higher profile church movements, they have been so unthinkingly captivated by the world's 'go for growth' mentality and 'mission' - that we forget it's not sheer numbers that will drive us to QUALITY growth - but LOVE.
Leigh: Too often are we captivated by the world's ways - in forgetting that people are PEOPLE, and are built to be loved - not to used - OR to be seen simply as potential growth targets.
Leigh: I believe a responsible and holistic reading of the Bible - will demand a life of - LOVE - and all good things will flow from that..
Leigh: Let me put it like this - in the midst of long term chronic illness - you have to find a faith that issues in things - other than activity… activism… and achievements - too often the focus of too many of our churches.
Leigh: Indeed I wonder whether part of our society's struggle in dealing with the sick - is our frequent inability to deal with people - other than on the basis of their usefulness.
Leigh: I read this phrase recently…'People won't care - how much you KNOW - until they know how much you care!'
Leigh: I happily acknowledge this is a very very difficult area, knowing what to 'do' - or what to 'say'. Indeed, before my illness, I would have felt the same level of inadequacy.
Leigh: I emphasise strongly - that all those who 'missed the mark' with me - were driven by a good heart to see me well.
Leigh: Yancey writes in 'Where is God when it hurts?' 'Sickness affronts our own health. It tends to bring out the worst in us, eyes averted out of fear, nervous twitches, empty promises ('call me if you need anything'), conversation reduced to prattle. What can we say? - Is anything worth saying?'…
Leigh: 'Instinctively, he says, I shrink back from people who are in pain. Who can know whether they want to talk about their predicament or not? Do they want to be consoled or cheered up? What good can my presence possibly do? My mind spins out these rationalisations - and as a result - I end up doing nothing
Leigh: I'm keen to say that all this doesn't mean I wasn't a person who couldn't be helped. As I've said, there were some wonderful people that helped us out They were either skilled or sympathetic in dealing with me 'where I was', and taught me much - about what it is to truly show love.
Leigh: They met me 'where I was'. They would often say - what a blessing they found - in being able to be alongside someone - suffering under God's care and control.
Leigh: I say that - not to congratulate myself, but to highlight how much healthy people miss out on if they're not engaged in the care of those doing it tough over a long time..
Leigh: ...Some want honest, straightforward confrontation, others find such discussion unbearably depressing. In short, there is no magic cure for a person in pain. Mainly such a person needs -- LOVE, for love instinctively detects what is needed.'
Leigh: Well back to my illness. I remained in the 'wilderness' of Chronic Fatigue Syndrome for 2 ¼ years.
Leigh: I began to 'come out' at the beginning of the Year 2000. A GP friend of ours tipped me off about some new and interesting research that had emerged around that time. His wife had suffered terribly from CFS for about 6 years.
Leigh: The research he discovered pointed to the CFS sufferer's metabolic system as an area that would be worthy of careful investigation. He sent her off for some heavy duty blood sugar and insulin tests.
Leigh: These tests came back with a significantly abnormal reading. (almost always tests undertaken by a CFS sufferer come back reading 'normal' - when normal is the LAST thing you're feeling!!
Leigh: On the basis of those results he sent her off to a dietician who basically put her on a diabetic diet (though she was not diabetic) and advised her to gradually increase her range of daily activity. Very quickly - she began to get a life.
Leigh: She got out of bed, started taking her kids to school once again and cooking the family meals. She was still far from 100% - but she was significantly better! I said to my GP - 'I want that test!'
Leigh: I likewise recorded clearly abnormal results (again, just for once) and also took them to a dietician. She said - 'with levels like this, I think I could give you a significant improvement in your health within a fortnight!'
Leigh: Again, I wasn't diabetic, but I began to eat food at the lower end of the glycaemic index (food that releases energy slowly) and began to eat more often, even if it was only an apple in between meals.
Leigh: Importantly, I also began to increase my range of activity, taking on a brisk walk each day, instead of the shuffle I had been reduced to during my illness. I came back to the dietician two weeks later and said 'You've begun to give me a life!!' Leigh: Within two months I began to take on freelance work, still not confident of my physical capacities. I was not anywhere back to 100%. Each month my hugely depleted body had to build capacity.
Leigh: Within five months though, I was back at my old television network, working as part of the Olympic Unit for the Sydney 2000 Olympic Games. It was a marathon, but I reached the 'finish line' still upright and still intact!
Leigh: Here began another big challenge - arguably bigger than the one of dealing with long term chronic illness. And as I began to get better - more and more people obviously felt freer to come out and say - what they'd always been thinking through the time I was ill.
Leigh: Within the first month - a wonderful, godly, and wise Christian woman said to me - 'I'm sure your case is just like the story - where Jesus heals the lame man in the temple, and before he heals him he asks - "Do you want to be well again?"
Leigh: She said - 'I guess it's just the same with you - now is the time that you want to be well again.' You can't help but walk away from a conversation like that - feeling that all through - she obviously thought - my time of being ill was a choice I'd made - a deliberate act of my will - a 'life-style'
Leigh: After a church talk, with the story of my 'wilderness years' at the heart of it - the minister who'd invited me said - 'Do you ever think this was the mid-life crisis you were always supposed to have'?
Leigh: And this is why it became perhaps my greatest challenge of ALL this time. You can only be treated as if you've 'lost the plot' - or that you 'can't cope' - or 'won't cope' - for so long - before you begin to have massive doubts about yourself.
HOST_Carolann: that is so true
Leigh: And now that my body had begun to significantly recover - I was also beginning to confront a Crisis of Confidence - realising how much more my confidence had to re-cover than my body.
Leigh: I had come from the 'confidence business' - and lost ALL my confidence - thanks to that repeated nagging thought - that I just couldn't cope any more… that 'stress' was my real problem… that I'd 'psyche myself' into it all.
Leigh: It was a VERY tough thing to 'jump back on the horse' of live national television newsreading again.
Leigh: It was also a tough thing to process all of this within the context of my Christian life, but I've learnt this one valuable lesson of life and faith. I think it's inescapable for us - to be tested and tried, and sometimes - even torn apart...
Leigh: Just as God allowed it to happen with Job - so he allows it with us - - and though it can feel like murder - it's actually a great gift from God.
Leigh: Because the more we feel un-able to face whatever circumstances or trials He throws up to us - the less we'll feel - that WE are sufficient to meet the challenge. And the more and more - we will just HAVE to turn to Him - and HIS perfect all-sufficiency.
Leigh: A lot of my new struggle had the 'identity' question at its core. For more than 2 years, I had had this one identity as a 'sick person'. It's something you have to adapt to...
Leigh: Your whole life is dominated by it… almost every conversation with others is about it. It had profoundly changed me, physically, mentally, theologically. Though tough - I'm absolutely convinced it was all very good for me.
Leigh: And then - suddenly - I was no longer sick. So - WHAT was now my identity. Who WAS I? Where did I fit in? Again - I think that struggle - to find your place in the world again as a 'survivor' CAN BE much tougher than being a sick person.
Leigh: And in my view it needs to be acknowledged- that in a number of very real ways with the long term ill, even after they 'recover' - the journey goes on.
Leigh: The medical community has only just begun to wake up to this reality. Here in Australia, a group of doctors and 'survivors' of cancer - have written some ground-breaking work about all this - in a book called 'Surviving Survival'.
Leigh: It's the first time in the world that this issue has been recognised. Though it deals with people who've survived cancer - I think it has a much broader application for many who are chronically ill, and who then recover.
Leigh: Certainly it's something I've experienced first hand. On the cover of 'Surviving Survival' - is this cry from a 'survivor'….
Leigh: I have had numerous achievements since my cancer experience (academic success, a successful job, public recognition, etc) and here I sit hardly able to put one foot in front of the other.'
Leigh: Then inside the book - there're many powerful accounts of people struggling with this whole business of 'survival', of 'identity', in THE WAKE of serious or long term illness.
Leigh: 'Edward (3 weeks after his release from hospital) reported that his relationships with his family and former fellow workers had changed radically. He felt a difference between himself and others, because they had not confronted human frailty as he had
Leigh: ...He could not communicate its depth... they did not seem to want to enter the experience with him.'
Leigh: And there's this from the book's author… 'People registered profound and serious disturbances in many aspects of their lives. Their sense of identity had been disrupted...
Leigh: It is difficult to exist as a survivor, because their views and values have changed, while people around them have not. Their experiences have been such, that, they've been made incorrigibly aware of the limitations and frailties of the human body. The illness had changed the person they were before
Leigh: Towards the end of the book, there's an extensive section on positive and practical ways in which the survivor can be helped - and met 'where they are' and significantly it begins like this….
Leigh: 'The first and most common way of handling ALL THIS - seems to be the use of 'anchor points' - strong values and beliefs - that stand their stead against turbulence...'
Leigh: And, again respectfully, I'm bound to say that it is only by a recognition of the reality and authority and love of God - that people, in whatever state they are, will they find that 'anchor point'.
Leigh: Even if our 'wilderness' ends up being a 'whole of life experience' it's still OK, because we can still cling to the certain, unshakable 'hope of heaven'
Leigh: I should wrap up my bit and in doing so, (being a pragmatist), I though I'd offer 12 random lessons about doing this whole area, that I learnt from my own personal experience. (how am I going for time??)
HOST_Carolann: you're halfway through
HOST_Carolann: although we did get a slow start, so we can over time, if no one minds
Leigh: I've only got these 12 points left... just 1 sentence or two each. These 12 points are listed at the end of my book published last year, 'I'm Not Crazy I'm Just A Little Unwell' (www.notcrazy.net) Please understand, I'm not an expert!
HOST_Carolann: sounds great - go ahead Leigh
Leigh: First, we must have a recognition that this work of caring for each other - is time consuming. If your view of 'productivity' is linked with just numbers, the care of the long term ill will rarely be seen as 'productive'...
Leigh: Don't get me wrong, I think it's ENORMOUSLY PRODUCTIVE in the lives of people, and in building a society or a church.
Leigh: Second, I'd again emphasise my critical point of 'meeting people where they are'. It's absolutely fundamental in my view, and quite a challenge for many.
Leigh: Third, simple practical help is of immeasurable value. You can never under-estimate the force of this. It says 'I care', it is a practical expression of the mind of a servant, and can be of tremendous practical help and encouragement to the sick.
Leigh: Don Carson picks up this point up in 'How long O Lord?' Frequently in the midst of suffering the most comforting 'answers' are simple presence, help, silence, tears…
Leigh: Helping with the gardening or preparing a casserole may be a far more spiritual an exercise than the exposition of Romans 8:28. The Scriptures themselves exhort us to "mourn with those who mourn" (Romans 12:15).
Leigh: Fourth, letters will often mean much more than a visit or even a call. (preferably hard copy over e-mails).
Leigh: They're hard to write, and again time-consuming, but over and over again I was lifted up and encouraged and taught, often in exquisitely timed ways by letters that people had kindly taken the time to pen.
Leigh: Fifth, of course prayer is always to be highly valued and is effective. It's even better - if the sick person knows the depth and extent that people are praying.
Leigh: Sixth, in my view, it's common courtesy - and often a necessary kindness - for the visitor to ring and see if a visit is appropriate.
Leigh: I can't tell you how strongly I feel about this and over time, how damaging those unannounced and insensitive visits were (even though they were well-meaning).
Leigh: Seven, remember the spouse/families of the sick person too, they're likewise often going through a very tough time. It's good to ask them how they're going, instead of always inquiring after the sickie.
Leigh: Eight, if you have a faith in God, have a LARGE view of Him, and try to resist the understandable temptation to ask 'why', and avoid even more, trying to come up with answers....
Leigh: Over and over again I've read of the desire of sick people just for a willing and understanding ear. Often when people have asked me 'what can I do? - my reply is 'just be'.
Leigh: Yancey writes in 'Where is God when it hurts?' 'Again and again - suffering people.. ..have stressed how much it means - when healthy people make themselves available. It is not our words or our insights that they want most, it is our mere presence….
Leigh: Consistently I have gotten the same answer from suffering people: it matters little what we say - our concern and availability matter far more. If we can offer a listening ear, that may be the most appreciated gift of all'.
Leigh: Nine, no speculation. If you don't know what's going on with a person in the midst of illness, for instance, if a diagnosis or prognosis is not clear resist completely the temptation to come up with your own...
Leigh: ... and if you do, keep it to yourself entirely!! Don't tell the sick person, and definitely don't tell others.
Leigh: Ten, resist anything that might be construed as blaming the sick person for their illness, or for the length of it. This is an easy trap to fall into, and one very common with the sick people I've spoken to.
Leigh: Eleven, there are great lessons for the healthy. Have an openness to the deep, rich, and authentic ways in which the SICK, as they move through 'the wilderness', can be a great teacher to the HEALTHY...
Leigh: ... they are frequently far more in touch with the reality of our human frailness - and dependence on God - than the healthy.
Leigh: Twelve, we need to be constantly humble and gracious in how we view this work. I believe we all need to recognise the reality - that we - at the end of the day - all have feet of clay.
Leigh: Well that's the end of my prepared presentation - thanks VERY much for your patience, especially at the shaky start.. very glad for any comments/questions.
HOST_Carolann: I thought your 12 points on how to genuinely help those with illness are great
JJ: Thanks Leigh! So did a change of diet make you well??
HOST_Carolann: I never would have thought a letter was more appreciated than a visit
Leigh: I think it's probably more complicated than just a diet change.. I wonder whether, due to the initial viral hepatitus, my liver/metabolic system sustained damage and that needed to be addressed by a whole new way of feeding and exercising my body.
Leigh: I went back to my specialist 2 years after 'turning the corner' and said - WAS this CFS.. and he was very clear it was, (being the multi-headed beast it is).
JJ: Glad to hear you recovered!
Leigh: And yes Carolann on letters - for me (and it's always important to emphasise that each person maybe different) especially when you're feeling terrible a letter, (demonstrating the care of someone who's taken the time) was better than a (frequently unannounced) visit.
Leigh: Yep JJ - so am I.. though I'd still say I'm about 90-95%.. still gotta keep going with the diet and exercise and making sure I get enough sleep
Mary_Lou: And when you're already fatigued, it's draining to try to socialize with people.
HOST_Carolann: I love writing letters and always feel awkward visiting - don't know what to say - but you have covered that with great insights
Mary_Lou: Conversation can really be draining.
Mary_Lou: So if somebody visits and you're not up to it, you can either ask them to leave (and risk offending them) or rally your energy and feel exhausted after they've left!
Leigh: Absolutely Mary Lou.. I remember so many visits where I felt someone had pulled the plug on my brain and body, spiralling down while people were often lost for words. Again they were always driven by a good heart, but it's helpful to know that sometimes people aren't up to it.
Leigh: I had to end up asking the two primary 'pastoral' visitors from my church to stop visiting. It was VERY hard.. but neither would ever call (unlike some great people) to see whether a visit was appropriate.
HOST_Carolann: I guess they think because you're home, you're available any time
gracedostrich: yes calling is first just seems like common courtesy
Pamela: What are the primary changes you made to your diet?
Leigh: yep - if only they knew the physical toll that was often involved in just sitting with them and talking.
Margie: People do not want to call ahead because they want to be free to stop in when it is convenient for them - not you, sadly.
Leigh: I eat at the lower end of the glycaemic index (on my book's website www.notcrazy.net there're some good links for it). Eating food where the energy input lasts longer (no high sugar stuff etc.) and eat more often.. as I said even if it's a tub of yoghurt or apple between meals... AND balance it with exercise
Leigh: my dietician said that exercise forces the metabolic system to act more efficiently.. just like for a diabetic.
JJ: I appreciate your mentioning about Job's friends. I think the hardest part of having CFS is all well meaning comments and suggestions from friends, family and doctors who do not have a clue to what CFS is.
HOST_Carolann: many people have said how the poor communication with people who don't understand the illness is a big problem... do you have any pointers Leigh to better communication?
Janice: yes JJ, and think they have a solution
Leigh: spot on JJ - That's why letters are so good and contact before is necessary.. again I WAS a person who could be helped.. but if they came with solutions they entirely missed the mark. If it was so simple to 'cheer up'.. or whatever - wouldn't I have done it to be well again!!
Margie: I am just curious how many people here have CFS? I do.
HOST_Carolann: I would imagine quite a few
Leigh: Carolann I think in terms of communication - listening and action (in the form of practical help) is best. Those who came with a listening ear and help with a meal... a garden bed weeded... kids transport provided were GOLD. those who came with judgements, solutions, suspicions were really tough.
JJ: I do
Janice: I do
Mary_Lou: I have fibromyalgia and chronic pain syndrome, both of which involve fatigue and a lot of pain.
HOST_Carolann: good point Leigh, thanks
Ron: fatigue is part of my parkinsons
Leigh: we need to be careful not to be too harsh on those who miss the mark.. but it's good for all to recognise how much we've been caught up in the modern corporate culture of seeing people only in terms of their usefulness...
Mary_Lou: And along with that that sense of not feeling useful, there can be a lot of guilt.
HOST_Carolann: that is so true, even in the church
Leigh: also... with our marvellous medical and scientific breakthroughs - I think the default thinking is - if you've got a problem.. take something 'get over it' (the heading of one of my book's chapters' and jump back on the bandwagon. Often it's NOT just that simple.
HOST_Carolann: so true
HOST_Carolann: we have a saying here... "just get over it"
Mary_Lou: Yes, I remember a nurse telling me that people have this idea that hospitals are like garages -- get some new parts and a tune-up and you'll be fine. But it really isn't like that.
Leigh: guilt is a terrible thing.. and SO ironic that it's so prevalent in the church. Jesus came to banish guilt and free us from judgement (including the judgements of others!). Mary-Lou how we wish it was always SO simple. it's like telling a double amputee - 'get over it, get yourself up and go for a r
gracedostrich: oh yes so true
HOST_Carolann: I think the Enemy is always trying to get us back into bondage and not experience our freedom in Christ
Mary_Lou: And that amputee may be suffering from phantom limb pain which is not something you can remove with a pill!
Mary_Lou: There again, you have the label "crazy" if you're feeling pain in a limb that is no longer there.
Mary_Lou: But it's a physical problem, not a mental. one.
HOST_Carolann: yes Mary Lou, people think it's in our heads
Leigh: yes Carolann - my illness totally transformed and authenticated my Christian life.. for the first time in my 30 year journey of faith - I believed because I KNEW it to be true.. not just because someone told me it was true.
HOST_Carolann: that's a milestone Leigh!
Mary_Lou: And if we could measure our pain and fatigue with a machine and put it on a graph, then we'd have more credibility, eh?
Leigh: And even if an illness IS in your head.. it's still an illness - many who suffer depression experience the same range of misunderstandings and misjudgements as CFS sufferers.
HOST_Carolann: I think we all need to come to that point some way or another
Mary_Lou: But no one can gauge my pain and how severe it is.
Mary_Lou: And words can be inadequate.
JJ: Leigh, any thoughts on how to enjoy God's peace in the middle of CFS brainfog and biochemical chaos?
Leigh: And the fact Mary lou that there's no marker for CFS. I often used to think - if only I could transport 1 hour of my PHYSICAL feelings to all the doubters - they'd know!!
Mary_Lou: Oh, yes! I've often wished I could let the doubter live with my pain for just a day and then see what they say!!!!
Mary_Lou: My pain is telling me right now that it's time to get up and do some stretches.
Leigh: BLESSEDLY I didn't suffer much 'brain fog'.. it's a really tough one - reading even listening is very tough. just a verse of the Bible.. even a word at the right time can be a huge lift and re-orientation. Much to learn for those people (especially Christian people) alongside those doing it tough.
Margie: I have both CFS and Fibro. If I exert myself physically I pay a terrible price. Horrid headaches, exhaustion, body pain. It just seems to not be worth it, but I do not want to waste away.
Mary_Lou: I've enjoyed the chat. Thank you, Leigh, for sharing your story with us.
Janice: JJ for me the peace cane once I accepted my illness, and that this is where God has me for now, and He knows what is best for me
Leigh: Thanks Mary Lou - lovely to have met you like this
Mary_Lou: May God bless your ministry.
Mary_Lou: And may God bless all the attendees!
Mary_Lou: Bye for now!
Janice: Bye friend
Pamela: Margie.. your life is not a waste
Leigh: Margie that's why, as much as we can, it's SO helpful to keep our eye on the 'big picture'.. that despite each diminished day - there IS still a good God in control, even if sometimes it doesn't look like it. Every day He is faithful to me.
gracedostrich: yes amen
Leigh: It's one of the great things about the Christian life that we are given WORTH .. just because of who we are.. no matter our circumstances.. or what we DO - or DON'T!!
Pamela: this has been a very tough winter for many with CFS/Fibro
HOST_Carolann: yes amen
Leigh: The cold was TERRIBLE for me.. then I hit my first summer - and that was entirely devastating - SHOCKING.
Pamela: God loves you so much Margie
HOST_Carolann: yes Margie you have infinite value to God!
Pamela: why was summer devastating Leigh?
Janice: Margie, I have exactly that problem. everything I do taxes my body, even typing!
gracedostrich: exercise seems to help me feel better, but we are all different
Leigh: It's one of the puzzling things about CFS (at least for me). My body temperature control regulator was entirely haywire. I FROZE in winter.. would walk around with 5 layers of clothing on and STILL froze. Summer I just couldn't go out in the heat.. devastating. and so surprising
gracedostrich: mentally anyway
Leigh: Yes exercise is very important, first physically, as I said forcing the metabolic system to operate more efficiently.. and yes they say apparently mentally as well. thought VERY important - for many CFS sufferers, exercise is impossible.. that's why they talk about 'graded activity', more than exercise
Leigh: graded activity is doing a bit more each day.. even if it involves walking to the letter box today.
gracedostrich: please explain
HOST_Carolann: doing a little bit more and a bit more gradually as you get to each level - so important not to push yourself too hard
Janice: Graded activity only works for me for a short time Leigh, and then it causes a relapse every time I try it
gracedostrich: I see
Margie: Yes Leigh, you mean the inability to tolerate temperature changes. When the heat comes on, I am miserably hot, the air conditioning blowing on me is torture. I seem to have a 3 degree comfort range.
HOST_Carolann: oh, Janice that's too bad!
Leigh: yep that's why I'm VERY careful about talk of exercise/activity - for many that's a joke.. but if some can, there're real benefits.
Margie: Janice, ditto for me with exercise!!!
HOST_Carolann: there you go Janice - you are not alone!
Leigh: Yes Margie - exactly that was a real landmark symptom of many I experienced.
Janice: I also have problems with temperature extremes
gracedostrich: me too
Janice: am so pleased the weather's starting to cool...
Leigh: yes here in Sydney, we're experiencing the first few days of autumn, just a big cooler. I was surfing early yesterday - an absolute treat!!
Janice: I'm in NZ Leigh
Pamela: I just cancelled my membership at the gym... was feeling exhausted after exercise which was unusual .. but I'm going to start walking instead..
Margie: I have terrible trouble keeping dental and other appts. They are too gruelling for my body. What to do?
gracedostrich: yes that's what I did is walking
HOST_Carolann: me too - it's all I can do and I walk every day
Leigh: good idea Pamela.. save lots of money! It's important to know well you're limits - AND respect them. VERY much easier said than done!!
HOST_Carolann: I also do stretching exercises at home
Janice: Margie, I don't get out for those things now at all.....but my dentist is happy to do a check and clean at home
Pamela: it takes too much energy to get to the gym ..
Pamela: I can use that energy to walk around my property.. I live on acreage
JJ: Snowing in Stockholm! The cold makes it harder to get out, takes a lot of energy.
Leigh: Margie - there's probably much to say, but again, knowing your limits AND respecting them is absolutely critical.. as my illness continued my wife and I used to say often to my specialist 'we feel that we're not DOING anything...'....
gracedostrich: appointments can be hard but we may get sicker if we don't go. I really have to depend on God for that
Janice: I keep praying I don't need anything major done
HOST_Carolann: I find that too JJ - the cold exhausts me
Leigh: but he said you ARE doing thing's you're MANAGING.. and he was right - management is the key..
Margie: At home????? Janice where in the world do you live????
Janice: NZ
Janice: and a smaller town
Leigh: I love it how people from all over the world from Sydney to Stockholm and NZ can hook up - amazing!!
HOST_Carolann: and Canada
gracedostrich: yes
Janice: my GP also makes home visits
Ron: sometimes we also have people in Brazil, Mexico, England
HOST_Carolann: sounds like a unique set up Janice
Pamela: I must go.. though I wish I could stay longer.. but it's sunny in California and I need to get out of this chair a bit...Thanks for this today
Janice: I am so blessed in the care I receive here
Leigh: lovely to meet you Pamela
HOST_Carolann: yes, thanks Pamela, we have gone over time because we got a slow start
HOST_Carolann: maybe we need to think about wrapping up the session, any parting words Leigh?
Ron: Bye Pamela, catch you later
Pamela: and you Leigh
Pamela: Ron.. I hope so.. bye bye
Leigh: Just it's such a privilege to have been here. Take each day at a time is my best advice... look in hope to the future, even if it's into eternity!!
Margie: Janice, you have kept me sane knowing there is someone like me out there!
HOST_Carolann: amen - that's something short we can remind ourselves of every day
HOST_Carolann: thanks so much Leigh for being here today
JJ: Thank you everyone!
HOST_Carolann: I know that I for one have enjoyed your session immensely
HOST_Carolann: and thank you all for coming and sharing too
Leigh: THANK YOU! Lovely to be here.. bye for now.
HOST_Carolann: God bless you Leigh
Ron: Thanks for your time Leigh, now time for breakfast?