tag:blogger.com,1999:blog-6432201290620111119.post8192234463168290936..comments2023-11-02T15:27:57.223+00:00Comments on Reading the Signs: Mind the GapReading the Signshttp://www.blogger.com/profile/06338983880105866139noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-6432201290620111119.post-44761922556596850742007-08-21T15:47:00.000+00:002007-08-21T15:47:00.000+00:00Dear Signs, I agree it's norra lotta laffs dealing...Dear Signs, I agree it's norra lotta laffs dealing with ME. And it's been real hard recently with both parents in hospital/nursing homes and then Dad's death and funeral (which John and I had to organise, the Funeral Directors who helped were absolutely fantastic, so helpful and kind, if you ever need that kind of help on the Wirral I highly recommend them!).<BR/><BR/>I too am fortunate to have a very kind and supportive partner. Without him all of the little energy I have would go into just the chores of daily living - you know, those things you really *do* have to do like get food in and prepare and cook it. ;-) Have to admit I don't take as many baths as I should (can't stand long enuff to shower cos of vertigo on top of the lead legs), but fortunately spouse has no sense of smell! :-)<BR/><BR/>Nobody would want to live like us though. John works full time, and then has to do most things for me. Including visiting Mum when I can't. He doesn't get much time off. <BR/><BR/>The house is full of clutter, but at present it's beyond either of us to do anything about it. We both have difficulty finding the time to get to dentist and doctor - and both of us need to. Guess that's just the territory that can come with aged parents, but it's so much harder with ME. Hopefully will recover over the next few months from the exertions of the last year or so, and then begin to eBay some stuff and chuck the rest if Oxfam don't want.<BR/><BR/>Sorry, I'm rambling - don't think I woke up properly today!<BR/><BR/>Best wishes from cloudy LiverpoolMaggiehttps://www.blogger.com/profile/13630530599678517169noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-44159875822966279132007-08-16T20:56:00.000+00:002007-08-16T20:56:00.000+00:00Nicola it's good of you to say so, thank you - I a...<B>Nicola</B> it's good of you to say so, thank you - I am coming across a number of brave and inspiring people here in blogworld, some of whom have been commenting on this very post.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-45321648320646338892007-08-16T20:47:00.000+00:002007-08-16T20:47:00.000+00:00Signs, I don't know how ME feels, but I know someo...Signs, I don't know how ME feels, but I know someone who does and he is one of the most important influences on my writing life because he has learned to live in the moment and to take nothing for granted and to accept that some days, having given his utmost, he will find the following days almost unbearably difficult. But he goes on and is a fine example to me of the best of humanity as you are too.Unknownhttps://www.blogger.com/profile/00112821049194722614noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-43718728742099459132007-08-16T19:50:00.000+00:002007-08-16T19:50:00.000+00:00Hi Rabbit - a pleasure, and thank you also. I als...Hi <B>Rabbit</B> - a pleasure, and thank you also. I also do my bit to explain about M.E. if someone asks. What I won't do is try to justify myself - perhaps that's a better way of putting it.<BR/><BR/>The example you gave of yourself and your brother and the dishes is a very good illustration, though, of some of the real difficulties that can arise. When my kids were at school I was resented by other mothers for not doing my bit more and there are times it must have looked as though I were simply ducking out of things. But at least I didn't have to live with them. I was lucky in having a very supportive partner.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-80651045386550421802007-08-16T17:48:00.000+00:002007-08-16T17:48:00.000+00:00You explain it so beautifully. Although I don't un...You explain it so beautifully. Although I don't understand it from a professional persons view because I have never been there.<BR/><BR/>I see a similar thing between my brother and not having to do things like the dishes or helping cook. I think he gets very resentful sometimes.<BR/><BR/>It is strange I can remember my bestfriend trying to explain ME to me the year before I got sick because her mum has had it for years. So I always try and remember what I felt like then, when I try and explain to someone. Mostly I go for the “never apologise, never explain” too.<BR/><BR/>Thanks for adding me to your blog list :)Rabbithttps://www.blogger.com/profile/02837309012659698672noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-85529675885684856032007-08-16T17:04:00.000+00:002007-08-16T17:04:00.000+00:00Hi Pants - I think I ranted early on about the Lou...Hi <B>Pants</B> - I think I ranted early on about the Louise Hay "You Can Heal Your Life" approach to illness and healing. My stepmother died of leukaemia intoning some of the "affirmations" in that book, convinced (almost) to the end that she could cure herself by changing her attitude and general way of thinking. But - much as I dislike this sort of blame-the-victim approach to illness - clearly all sorts of things, including early childhood, psychological state, bereavement etc. <I>may</I> play its part. But also it is a truth that should be universally recognised that shit, like lung cancer, like M.E., sometimes just happens, things malfunction and we don't always know why.<BR/><BR/>I think people find M.E. threatening for so many reasons, not least because the way we have to live challenges everything about the idea of life as a race that has to be won. That kind of life requires people to do more and more with less and less time to think about and process it, whereas "we" have to think about every single thing we do. And we're not good for much of what rat-race culture promotes as being important.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-49183889941603274632007-08-16T16:08:00.000+00:002007-08-16T16:08:00.000+00:00Hi SignsI think you're right about people finding ...Hi Signs<BR/><BR/>I think you're right about people finding disability threatening. We are more and more conditioned to have expectations of long healthy lives and obsessed with how to achieve that state. I also think that attempts to 'blame' people for becoming ill by the constant efforts to link illness to personal decisions about lifestyle choices exacerbates this tendency considerably. I actually know people who believe that it's possible to draw illness to yourself by having a negative attitude to your health. Do you think people find ME threatening because no one understands how or why it happens?<BR/><BR/>People regard non smokers who develop lung cancer with total incredulity, as if it's simply not possible for there to be no causal link. The fear of a debilitating illness that just strikes you down without any warning or reason is too scary for some I guess.<BR/><BR/>xxx<BR/><BR/>PantsPantshttps://www.blogger.com/profile/00712642194215828800noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-35629751161595516042007-08-15T23:58:00.000+00:002007-08-15T23:58:00.000+00:00Pants, I agree with all you've said here. I think...<B>Pants</B>, I agree with all you've said here. I think that one of the things that happens when a person, whether disabled or not, steps off the treadmill is that people are often threatened - mindful of their own seemingly inescapably stressful lives. <BR/><BR/>I will always wish for the health and strength to do more and to live without pain or discomfort. But I don't wish for the kind of life that I would almost certainly have had if I had never been ill in the first place.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-19573378362563526762007-08-15T23:24:00.000+00:002007-08-15T23:24:00.000+00:00Hi SignsFor all our talk about attaining a healthy...Hi Signs<BR/><BR/>For all our talk about attaining a healthy work/life balance, we aren't managing very well to attain it for real. If someone could please stop the treadmill, I'm sure we'd all like to have a conversation about how fast it should be going and how and when we'd each like to get on and off it. <BR/><BR/>I'm also sure that if 'life' wasn't constantly presented to us as a race that must be won, we'd stop competing with each other and start valuing individual qualities in people much more.<BR/><BR/>xxx<BR/><BR/>PantsPantshttps://www.blogger.com/profile/00712642194215828800noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-82787887714751741642007-08-15T21:37:00.000+00:002007-08-15T21:37:00.000+00:00Anna! You breeze in here just as I turn my head a...<B>Anna</B>! You breeze in here just as I turn my head and disappear as quickly as you came - glad to see you in bonkeroony form, my dear. <BR/><BR/>You know I don't know what Väistämisvelvollisuus risteyksessä means - but trust that they are good things as they come from you.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-18163075694228229272007-08-15T21:22:00.000+00:002007-08-15T21:22:00.000+00:00Hei Signs, Kolmio, Madame Väistämisvelvollisuus ri...Hei <B>Signs, Kolmio, Madame Väistämisvelvollisuus risteyksessä</B> - you are fab and no mistake.<BR/><BR/>xx<BR/><BR/><B>oqzbv</B> - Oh Queen of Zeal, Beauty and Veracity<BR/><BR/>(for God's sakes, here we go:<BR/><B>yvayfsd</B> - You Voracious and Youthful Fair Signsy Dame)Anna MRhttps://www.blogger.com/profile/13801478271766064478noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-59622768153105041012007-08-15T21:18:00.000+00:002007-08-15T21:18:00.000+00:00Fluttertongue (can I just say how I'm enjoying you...<B>Fluttertongue</B> (can I just say how I'm enjoying your name) - I'm glad if you have been reading here and enjoyed. If I understand rightly what you're suggesting - yes, life can be rich at the same time as being painful and complicated. I feel this too.<BR/><BR/>(I think I smell freesias now btw, very fragrant)Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-56486532631389007092007-08-15T21:08:00.000+00:002007-08-15T21:08:00.000+00:00David, I find myself on the brink of trying to exp...<B>David</B>, I find myself on the brink of trying to explain; but will confine myself simply to saying that I am not prejudiced, sitting in judgement or pronouncing on guilt. I speak as I find, my truth, and with consciousness of the stressful lives that many people lead as well as the predicament of people who strive to live with chronic illness such as M.E. <BR/><BR/>Yes, I will always be singing (it's one of the things I do), about the dark times and the good times, the shadow and the light - my truth.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-58372473391925615922007-08-15T18:50:00.000+00:002007-08-15T18:50:00.000+00:00Yes I imagine you're right, although I've got to t...Yes I imagine you're right, although I've got to the stage where I can't remember what it was like before. I'm lucky to have testimonies from others such as yourself to prove that it isn't wholly depressing. And, believe it or not, life has, on the whole, got better since it's been with me. Just a little more painful and complicated. I've been hanging around for a while now. Hopefully more like a benign presence than a bad smell...fluttertonguehttps://www.blogger.com/profile/06503797774392650926noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-85538889694041250982007-08-15T18:04:00.000+00:002007-08-15T18:04:00.000+00:00It was The Others I was referring to (and defendin...It was <EM>The Others</EM> I was referring to (and defending, I guess). I can only compare myself to them, more than I can compare myself to someone living with ME. <BR/><BR/>Keep dancing, or shuffling, or singing or just plain smiling to "My Baby Jus' Cares For Me," please. <BR/><BR/>DavidAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-86219788425064099432007-08-15T16:58:00.000+00:002007-08-15T16:58:00.000+00:00Hi fluttertongue - it's a difficult one because if...Hi <B>fluttertongue</B> - it's a difficult one because if you haven't been ill for long and still feel there is hope of imminent recovery then it's a very different picture to when you have had this for over 20 years. In both cases, of course, one has to live with what's going on in the now, but it makes more sense to cling on when you haven't had it long. <BR/><BR/>But anyway, the 'never apologise, never explain' way is good for almost everything and I should have adopted it sooner. I recommend it. <BR/><BR/>Have seen you over at TPE's - nice to see you here too. <BR/><BR/>Hey <B>Kahless</B>, hope it wasn't overtime. Saw your delicious-looking curry, btw, and copied the recipe.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-17368919973351587812007-08-15T16:22:00.000+00:002007-08-15T16:22:00.000+00:00Duvet was good thanks Signs. I also 'worked from ...Duvet was good thanks Signs. <BR/><BR/>I also 'worked from home' today.<BR/>:o)Kahlesshttps://www.blogger.com/profile/00500615451909999365noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-49135285112825116132007-08-15T15:21:00.000+00:002007-08-15T15:21:00.000+00:00How well I recognise your sister's comment. Whenev...How well I recognise your sister's comment. Whenever I go out, people who know because I've told them a billion times still ask what my plans are for the rest of the day. I find myself constantly apologising and making plans that I know I can't keep. I feel resented. Part of me wants to escape this busy world into which I do not fit and part of me wants to cling onto it with all my might. Best of luck with your gap year. I take inspiration from you.fluttertonguehttps://www.blogger.com/profile/06503797774392650926noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-81326233415912716262007-08-14T18:24:00.000+00:002007-08-14T18:24:00.000+00:00Hello David, is it me that's doing that or The Oth...Hello David, is it me that's doing that or The Others? No matter, whatever you are saying is, I am sure, very wise and I am, as you say, marching or (to be more accurate) shuffling to my own time and at this particular time a very acceptable piece of Jazz (My Baby Jus' Cares For Me) arranged by my son for the group he sings with.<BR/><BR/>I hope you are well and have just discovered the truth of your other name at Mr. Moon'sReading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-82139314956503463712007-08-14T14:42:00.000+00:002007-08-14T14:42:00.000+00:00It is hard sometimes not to let our prejudice thou...It is hard sometimes not to let our prejudice thoughts escape and judge people without giving them the benefit of the doubt. It is a tough battle to remember that there may be a reason for someone's actions, regardless of "how things look." Innocent until proven guilty, it is best to remember. <BR/><BR/>As thoughtful as you are, I see you as someone who lives her own life, marching to her own time, be it in synch with someone else or not.<BR/><BR/>I don't really understand ME (nor could I, really) but I respect anything that has been given a name.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-38573673200984229902007-08-14T11:20:00.000+00:002007-08-14T11:20:00.000+00:00Hi Cusp - I fear I may not have expressed myself v...Hi Cusp - I fear I may not have expressed myself very well for I do actually understand the reactions (coming from overstressed lives etc) and I am not seething with resentment or anything like (though the language I've used perhaps makes it sound that way).<BR/><BR/>What you say about the business of working at home is interesting. A writer I know ended up renting an office to give herself and others the message that she was At Work, as it wasn't coming across when she did the job at home.<BR/><BR/>Yes, it's a good motto, isn't it - for so many things, really.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-87422152921259579702007-08-14T09:47:00.000+00:002007-08-14T09:47:00.000+00:00“never apologise, never explain” ...and amen to th...“never apologise, never explain” ...and amen to that. As you have said over at my blog, there does seem to be something n the air. Old Fluttertongue is having similar problems.<BR/><BR/>The thing is that unless you actually go out of your house in some way to work, you are already regarded as some sort of loafer. When I was freelancing and at home most days, years ago, there was an inference from many that I spent all day watching daytime telly and eating biscuits. In fact I was grafting all day on the phone, writing proposals, getting work, preparing work etc. etc. : it's just that I wasn't seen to go out of my front door. My bro in law, who is a professional musician/composer gets the same stick.<BR/><BR/>Take this to another level eyou aparently have the 'yuppie flu' and you'll be seen as a complete tosser (pardon my french!).<BR/><BR/>Stick to your motto and to hell with all these ignoramuses who can't deal with alternative lifetsyles or other ways of being in the world other than 'dynamic' desk jobs, promotion, bonuses and bigger and better stuff.Cusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-60303611582048384572007-08-14T00:06:00.000+00:002007-08-14T00:06:00.000+00:00Hi Kahless - sometimes it's just thoughtlessness. ...Hi Kahless - sometimes it's just thoughtlessness. If I think there's another agenda I'll strike back, but mainly I try to steer clear of debate about it. <BR/><BR/>I hope your weekend under the duvet was, one way or another, beneficial. <BR/><BR/>Thanks for the good wishes.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-6432201290620111119.post-19235510381158303422007-08-13T22:09:00.000+00:002007-08-13T22:09:00.000+00:00You know what I would say to the people who say I...You know what I would say to the people who say <I> I wish I could just do nothing</I> or <I>I have to work</I>...I would say <B>cobblers</B> - if thats what you want to do then DO IT!<BR/><BR/>I spent a chunk of the weekend in bed with my head under the duvet. I would never of done that a year ago, I would have felt obliged to <I>do</I> things like a relentless hard worker. Now I am able to choose to rest up and do nothing if that is want I want to do. To hell with mowing the lawn or finishing that diy job. And I have my health.<BR/><BR/>So good for you Signs. And I wish you improving health and recovery over this gap year.<BR/><BR/>oh and thanks for the new word which I googled... <BR/><BR/>Basta!Kahlesshttps://www.blogger.com/profile/00500615451909999365noreply@blogger.com