The Other M.E.

The Other M.E.

yippee someone who agrees about the damages of terminology.

Memorials

http://www.ncf-net.org/memorial.htm

This page is a sad reminder of how Lynn Gilderdale's case is not so unusual. Spare a thought today for those not so fortunate.

http://support-gilderdales.blogspot.com/

Happy xmas all and please add your comments to my Lynn Gilderdale blog when you can. Lynn's family must be having a very much harder xmas than most of us can imagine and they need to know we are all feeling their pain. At this time of year more than any other we must think of others and offer all the support we can to those in need. I have read many articles that come out of the woodwork when things like Lynn's death happen and every symptom described I can honestly say I have suffered at some point but fortunately not as bad or for as long as someone like Lynn. I am one of the reasonably lucky ones who has come out the other side of the pain, depression, brainfog, etc associated with this illness though I still suffer constantly to some degree. I envy hugely anyone who says they are "cured" of this illness but the truth is many of us never recover a full and functional life. In the wake of Lynn's death it is vital we do not give up the fight and that we persevere with the battle for recognition and better services that are so badly needed.

Arrest over ME campaigner's death

The mother of a prominent ME sufferer and campaigner has been arrested on suspicion of murder following the death of her severely ill daughter.

Kay Gilderdale, 54, was questioned and released on police bail after the death of Lynn Gilderdale, 31, on Thursday. Sussex Police were called to Ms Gilderdale's home in Stonegate, East Sussex, at about 0830 GMT. Ms Gilderdale had been campaigning for a better understanding of ME, which she contracted about 17 years ago. Her family, who issued a statement through Sussex Police, said: "Lynn was young, beautiful, loving and caring.

"At the age of 14 years she was struck down by ME - an illness greatly misunderstood - and, as a result, suffered the stigma attached to this dreadful illness. She fought long and hard for 17 years with immense bravery, enduring constant pain and sickness. Every system of her body was affected."

Ms Gilderdale required 24-hour care, but still had time for others, her family said."She was a much-loved daughter, sister and granddaughter who, despite her illness, always gave love and support to others," they continued. "In life Lynn strove to help the medical profession improve their insight into ME, which affects thousands of people in varying degrees of severity."

TB vaccination
Rother district commander Ch Insp Heather Keating said: "This is a very tragic incident, but we are not looking for anyone else in connection with it." Mrs Gilderdale has been bailed until 6 March, 2009. Her daughter fell ill after receiving a vaccination for TB when she was 14-years-old. She then went on to have bronchitis, tonsillitis and glandular fever, before being diagnosed with ME. The condition, which is also known as Chronic Fatigue Syndrome, often left her unable to get out of bed. The ME Association estimates that 250,000 people are affected by the condition in the UK.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/england/sussex/7771047.stm


A tragic story about a girl who had ME since she was 14 and was mostly bedridden. Doctors had at times labelled her attention-seeking as if she CHOSE to be that ill. I have heard many people say that they resent the implication by practitioners of certain therapies that if a particular therapy doesn't work for you it's your fault because you don't WANT to get better. The arrogance of perfectly healthy people never ceases to amaze me! People like the GP I had when I got my diagnosis who put in my notes that I "seemed content with that diagnosis" - as if yeah ok I'll accept that, it may not be real but I'll go along with it. I don't exactly know how he thought I was supposed to react - very strange. How could anyone for a moment believe that this girl's family didn't do everything within their human capabilities to make their daughter's life better. I personally wd give anything to be able to go back to work, have another child, run a marathon, etc etc etc. This is not a lifestyle choice and this is not how I planned my life to be. For whatever reason everything Lyn's family tried was all futile and she had had enough. Thankfully I have rarely been that low and never been completely bedridden but that sense of futility and despair, the feeling that you have no future to look forward to, the depression every time they tried something new and it failed, I can relate to as can every ME sufferer the world over. Someone suggested all the support groups, all the sufferers, all the supportive medical professionals (they do exist, really) shd consult her parents to name a day when we can all remember amazing people like Lyn and her mother and remind the world what a very real, debilitating illness this is. I know we have ME Awareness Day etc but specifically to honour the extraordinary spirit of someone like Lyn who, in spite of being so ill for so long, still managed to keep hoping, keep fighting, keep raising money and awareness. Sadly it all got too much for her but we must never forget how much she and her family did to further the cause of other ME sufferers. RIP Lyn, may you not have died in vain.

http://news.bbc.co.uk/1/hi/health/334716.stm
This is an excellent article about how this illness is soooo much more than just being tired. For all those ignorant people who make comments like "we all get tired sometimes" and "I'd love to not work and just sit around all day".

Oh dear I seem to be having a campaigning day! Maybe it's because I have no strength today to do anything physical so I'm glued to my pooter. Legs are killing me, can't keep my eyes open and short of breath...and hey this is an average day. C'est la vie.

I find this blogging thing fascinating. It never ceases to amaze me how open and honest people seem capable of being in a blog as opposed to real life...if someone sat and ranted the way people do in real life, they would be treated like a total freak and people would run a mile the other way in case they catch this disease called "sharing". Especially the British. Americans love to talk, love to discuss things. They are happy to hear your life story and you only just met them five minutes ago. They will I might add probably forget every word you said five minutes after you're gone but it's the thought that counts eh? When they say "Have a good day" they genuinely mean have a good day. They just like people to be happy. We the British on the other hand are miserable misogynistic self-centered unfeeling race. We don't want anybody ELSE to have a good day. We want to have a good day but it's an even better day if it's at somebody else's expense. I like to talk to people and people tend to respond by talking to me. This seems to make me a bad person according to certain members of my family. At a family gathering once I got talking to this girl and she was telling me all about how important it was for her girls to go to private school (local schools in London being crime-ridden slums apparently), how they cdn't afford to have another child because they wanted the best for the two they had, among other subjects. She even at one point asked her husband to get her a drink so if she wanted to get away from me she had several opportunities. But as far as my sister-in-law was concerned, she was obviously just being polite, tolerating me, and I was persona non grata from then on. My father let slip some time later that she had made some comment about how much I talked and people didn't like being bored by me. Wdn't it have been nice if she cd have had the decency to talk to me face to face and hear my side of the story. Maybe I was the one who felt her friend was boring me but I just cdn't get away from her! I bet that scenario never occurred to her. As it was I reckon the conversation was absolutely 50/50 but I guess her friend had never talked to her like that so it must have been me that was the problem. My point here is how these blogs give people that opportunity to have a rant, commiserate, celebrate or educate and boy do people not grab that opportunity. I found one this afternoon in which this woman was giving an almost day by day report on the difficulties of living with a schizophrenic husband. I admired the detail, the honesty of her descriptions of her husband's hospitalizations and her own depressions. I found myself reading it with such enthusiasm it reminded me of the above situation and I thought you know what, I bet if you asked that girl how she really felt about us talking for so long as we did, I'll bet she'd say the same thing. Sometimes it's wonderful therapy and sometimes you just find you have so much in common with a complete stranger when those closest to you won't give you the time of day. I got the feeling this girl wanted to talk to someone and I was there. Contrary to my s-i-l's opinion, I was NOT the only person talking in that conversation and she seemed to miss that point. I got the distinct impression not many people were in the habit of listening to this girl and she seemed to welcome the opportunity to talk just as much as I did. Isn't it sad that being interested in others and being willing to share their problems makes you a bad person?

busy bloggers

I have discovered recently there are a lot of busy bs (as in 'b'loggers) out there happily proving that just cuz we have this wretched illness it is possible to maintain some contact with the outside world! I've decided the person who invented the concept of blogging is a truly amazing human being and deserves several medals. Few things give me a boost of energy in life quite like the feeling that there are others out there who find life just as difficult and still get through it as I try to do every day. Keeping a sense of humour is so important and anything that can make me laugh about how crap I feel can only be a good thing.

One of these wonderful sources of inspiration had a quote from Helen Keller: I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble. Every day I wake up thinking I want to do something today, achieve something no matter how small. My husband still doesn't really understand that I set out every morning with a list and I get hugely excited when I actually get any one thing on that list done. You know the old Frank Sinatra song, High Hopes, about the ant moving the rubber tree plant. I am that ant! Small and insignificant but still full of dreams.

(Next time you're found with your chin on the ground)
(There's a lot to be learned so look around)

Just what makes that little ole ant
Think he'll move that rubber tree plant?
Anyone knows an ant can't
Move a rubber tree plant

{But he's got hi-i-igh hopes, he's got hi-i-igh hopes}
{He's got high apple pi-i-ie-in-the-sk-y-y hopes}
So, any time you're gettin' low, 'stead of lettin' go, just remember that ant
Oops, there goes another rubber tree plant

oh and they also pointed us towards this brilliant video someone's made : http://au.youtube.com/watch?v=Sv5iEK-IEzw

writing about ME

I have just found yet another book on ME, this time a novel written by a long-term sufferer. It's called "The State of Me". The ME Association describes it as 'a remarkable first novel... absolutely word perfect on neurological ME'. Yet the author has posted on her blog a review by a fellow sufferer which contains the following paragraph: 3/10 for the quality of the information given about M.E. It really was very poorly researched and almost entirely inaccurate. Almost all of the information given related to 'CFS' rather than M.E., and these are two very different entities".

I'm confused...whilst I personally wholly agree about the differences between these two illnesses that people are so happy to clump together, the author has had this illness since 1983 and felt that what she was actually doing was describing ME not CFS and that she had the experience and had done the research over so many years! I would expect this antagonism from non-sufferers but isn't it odd that this illness causes such conflicting views even amongst its' own people! No 2 sufferers have the same symptoms. Just because someone has had a different experience to you does not make their experience any less valid. Maybe if we cd all adopt that attitude to everything in life, the world wd be a far more reasonable and tolerant place to be in.

Quote of the day.

This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterisation.
-Laura Hillenbrand

When is enough enough?

It's not like I haven't been here a thousand times in 20 years but every time feels like the absolute last time I can bear. And yet I'm still here. Truth is I can't move, I can't leave primarily because I just plain ain't got the strength. Not because I cdn't live without him (cuz believe me I have reached the point where I soooo cd!) but I mean I really ain't got the physical strength. That's one of the worst things about ME, there's so many things I want(ed) to do with my life and this illness has robbed me of the opportunities. I don't really like moaning like this. I try to keep as optimistic as possible because otherwise I wd have curled up and died years ago. but when is enough enough? When do you reach that point where you have to concede that nothing is ever going to be right with this man, that he is never going to admit or accept that he has problems that are nothing to do with me, that my life is never going to be any better than this!!! god that's depressing enough all by itself. This is as good as it gets.

I put into Google "living with ME/CFS and a bipolar partner" and every page was about either one or the other but not both. Somehow I doubt I am the only person in the whole world who lives like this. Maybe they're all too busy trying to survive to bother writing blogs like this but there must be somebody who can sympathise. Of course that's not including the child. If I looked for people who have ME, live with an undiagnosed bipolar partner AND have an autistic son, I somehow doubt I'd find many pages. If you are out there please let me know. Even if it is just to have a bitch about it all, there must be someone out there who feels as desperate and in despair.

Is there a point to this rant? At this point, I don't think so because I have nowhere to go with anything. I can't move out cuz the child can't be disrupted like that. I can't bear living like this, tensing up the minute I know he's home, dreading what he's going to find to scream about now. I just need to get this all down cuz I really believe someone needs to hear what I live with so when enough really does become enough, there is a record of my side of things. So being as I have to be here, at least I have some way of releasing all this frustration and misery.

We've had a couple of weeks of him being half human and relatively normal but the little things start happening again. He went away with the boys for the weekend and my son and me had the best weekend in years doing absolutely nothing. Not surprisingly when it's just the two of us, we have no stress, he does what I ask, he doesn't argue about food or anything else, and we have a totally chilled time together. Over the weekend, I had put whatever plates etc in the dishwasher. First thing Monday morning, I find him handwashing a load of dishes. We have a dishwasher and yet he had taken the plates OUT of the dishwasher, leaving one plate and one bowl and all the cutlery in the dishwasher (why?!) and handwashed them. Sorry am I missing something here? is the dishwasher there for decoration? Why did he leave one plate and one bowl? I spend my life trying to make him understand the problem is him getting these "manic" episodes where he is looking for things to do and excessively screaming about trivial things and generally acting like the only person who exists and matters in this life is him. He does not see behaviour like this as a problem. The dishes needed washing. Yes but they were in the dishwasher, why did you need to take them out of the dishwasher and do them by hand. No doubt he will justify it by bleating on about how much energy the dishwasher uses, how it wasn't full so it wasn't right to put it on half full, how he had to do a few glasses anyway so he did the plates as well (oh he left about four glasses in th edishwasher too btw). Amazing how if I only did part of a job because I ran out of strength and energy he wd be screaming. I can't really expect most people to understand why this seemingly little thing is so upsetting to me but I think it sums up the problems. It was completely unnecessary to do, he left 1 plate and 1 bowl and all the cutlery so it cdn't have been that important yet he doesn't see the fact that he was even doing something so unnecessary is Manic. Then this morning, my son is sitting there waiting to go to college because his father said he'd drop him off, I'm sitting there in tears and having a bad time trying to get going and he suddenly tells me to turn the tv off and starts trying to discuss the itinerary of our upcoming holiday!!!! Is this the time and place? How come when he wants to discuss something I have to turn the tv off because it distracts him but when I want to talk to him about something he doesn't even have the decency to take his eyes off the tv and actually listen to me! If he's on the phone I am not allowed to try and say anything to him yet the other day when I was on the phone he came up to me and started showing me a little ornament as tho I'd never seen it before and started trying to tell me it was broken apparently or whatever and when I pointed out that I was on the phone, he just gets angry and stomps of ranting. There are so many instances like this every day, I don't know how much more I can take. They all sound like such small things but when you have to live day in and day out with this unreasonable irrational manic response to every tiny little thing in life, it really is too much to cope with.

Fellow ME sufferers will understand, bipolar sufferers might relate, parents with autistic children can relate to how difficult THAT is but even I can't quite believe myself how hard it is to live with all three! I think that's the point, most rational human being wd not still be living with it after twenty years. How much easier wd it have been dealing with this child if it was just the two of us? Wd his father be as bad if we had a "normal" child? I don't even need to suggest how different things wd have been if I didn't have this illness. The fact is I do and I do have these other difficulties to deal with so I shall just put my best Sagittarian foot forward and carry on regardless. I think I just need to do this more often. I feel so much better for just letting it all out. Maybe there is someone somewhere who can help tell me how to keep up this positivity cuz I'm beginning to lose it.

George Carlin

A black day for humour and freedom of speech. George Carlin had a great effect on me as a teenager growing up in the 70s in Montreal. There wasn't then nor has there been since a brilliant comedian with the guts to speak the truth especially if it pisses people off! It never ceases to amaze me that any of his material was ever allowed in public but quite the contrary he was a mainstay of American television for the last 40 years. Of course his best stuff is truly offensive to the vast majority of society but that's what made him so great. Few people in history have been willing to stand up and state what to a lot of us seems obvious - that there are wrongs in society. Doing it with such consummate skill, without fear of reprisal and without apologies makes him strangely more of a hero to me than most public figures we're supposed to revere. His complete indifference to authority and his ability to challenge our beliefs and lifestyles are qualities that we shd all respect. To be able to do this with humour is so much more powerful than with the droning rhetoric of politicians. He is irreplaceable and will be sorely missed.

What is wrong with this world?

At the risk of sounding very much older than I am, what the hell is wrong with this world?! Now we run the risk of being killed simply for being in a supermarket! http://www.telegraph.co.uk/news/majornews/2116027/Supermarket-shopper-dies-after-'queue-jumping'-attack.html#continue
I doubt anyone has not become aware of this tragic story about a lovely bloke who wdn't have hurt a fly being felled by not even the woman who apparently was so afronted by someone jumping the queue but by her boyfriend who in fact had nothing to do with it! It never ceases to amaze me how selfish this country has become but this is ridiculous. So what, someone pushes in ahead of you. Yes it's annoying, yes it's wrong, and by all means say something to them but to call your boyfriend to come and beat the person up is beyond ridiculous. And then to not even ensure that he gets the right person to attack! The saddest thing is it turns out Kevin Tripp was an ME sufferer who had dealt with years of struggling with this illness and was a local ME campaigner who wd most likely have not even had the energy or inclination to pick a fight with anyone so it's all the more unfair that anyone shd attack him in this way. How have we arrived in a situation in this country where every single person apparently seems to consider themselves altogether more important than every other person.

In fact most people seem to think they are the only people in the world, they certainly drive like it. I am constantly amazed how most people ever passed their test when they apparently have no concept of what those funny white lines are on the road (if they even see them at all), no concept of right of way or lanes or indicating. I was behind a woman this morning who was doing 20 miles an hour in the outside lane, changed lanes twice across me without indicating or looking and then stopped albeit momentarily over the crossing on a green light! I don't know where her mind was but it certainly wasn't on her driving and of course when I did honk her to wake up she looks at me like I'm the one doing something wrong. This stupid girl the other day on her mobile phone just walks out into the road as I came round a corner - how I didn't hit her I cdn't tell you - but she cd still manage to turn round and stick her middle finger up at me. This seems to be the attitude these days, I can do what I like and you're wrong for objecting to it. The best one the other day was an old woman (who frankly was obviously far too old to still be on the road) began to turn right into the lane I was in which was actually the wrong side of the road! I tried to tell her she was turning in the wrong place, that she wd be on the wrong side of the road, that she cd not turn there and all she did was to continue to turn even though it clearly placed her head on to the oncoming traffic and a huge accident was about to happen and then she started waving angrily at me to get out of her way. It just didn't cross her mind that she was in the wrong. My father who was in the car thought it was almost funny. He commented "what did she think you were trying to say to her?" and the answer wd be that she obviously didn't care what I was trying to say to her, all she cd see was that I was in HER way. Obviously the problem is me, I am still capable of considering everyone else before myself. Sadly there ain't many of us left.

Home "sweet" home?

I can't decide whether I'm ever happy to be home again. I love the touring we do, all the new places to see, the hotels as long as they're decent, not having to cook LOL. But there's always a little voice in the back of my head that says you must go home soon and when we get back it's with mixed feelings to find everything right where you left it and the same old house and life has to return to normal.

Our dear furry one has been a busy boy this time, at least two mice and a bird in the kitchen. How nice! I know it's only natural but my other cat was 17 when he died and I don't ever once recall him bringing in a mouse or a bird or in fact doing anything with one if you put it down in front of him. He just didn't have the instinct whereas this little monster does it in protest quite regularly if we don't provide him with sufficient food or for that matter the exact taste he wants when he wants it. Still coming back after three weeks away to find the house strewn with dead bodies was bit much. Thankfully husband very good at disposing of the remains cuz sure as eggs is eggs my son and I aren't touching it.

Also our famously unfinished driveway is now sprouting weeds cuz of the heat. Great, just more work to get it finished properly...that is=if we can ever agree on how to finish it anyway. What's it been now, nearly three years. Is that any kind of record and shd we be "proud" if it is? Well at least we can and do use it so it's not a complete waste of time. With the summer months coming up the parking gets insane around here so at least I can park within a mile of home grrrr. You
don't get traffic wardens up here so people park everywhere which tends to render my disabled badge somewhat irrelevant. Even the double yellow lines are occupied. Sadly people are very selfish.

Hey ho another yearly jaunt out of the way and plenty of video to relive.

The Big Apple

After Cincinatti we wandered off the beaten track again to see Falling Water the Frank Lloyd Wright house which was worth the effort! Though the snowy mountain roads were a bit scary. Amazing how you can go from snow to sunny in such a short space of road in this country. So here we are in sunny and cold NYC (well NJ to be precise) and a much needed day of rest. My husband has gone into the city with plans to spend the afternoon in a bar watching Chelsea v Liverpool which is even more bizarre cuz he's a Man City supporter. Oh well no accounting for taste....

Oh and I thought I hated mobile phones at home....at least at home it is now illegal to use them while driving (tho I can't help but feel they shd be illegal to use while walking too) but the Americans haven't quite grasped that idea. On the road yesterday there were sooo many people wandering around the road, suddenly putting brakes on for no reason, changing lanes with no warning all because they are either yapping or dialling or in one case READING A TEXT whilst doing 70 miles an hour! Surprisingly we saw at least three accidents over the last two days and I doubt people walked away from any of them. Add to that their somewhat casual attitude to drink driving and the roads here are certainly dangerous places to be. I love the traffic signs warning you to be alert for drunk drivers. How bizarre, that the sober driver needs to be careful because so many others may not be and how exactly are you supposed to know they are drunk until they're heading towards you in a threatening manner by which time it may well be too late. Thankfully they have superb public transport systems both above and below ground and the bus network in NYC is fantastic for someone like me cuz we can get a bus and go just a couple of stops so I don't have to walk that much and where the buses don't go the subway does. Tomorrow we go into town and I don't really know where we'll go. My son wants to obviously hit the comic shops but he says he also wants to do some sightseeing so we'll see. There are parts of Central Park we haven't seen and his father and me can do a museum or two on Friday. There is always something more to do in NYC.

Do Americans realise how lucky they are?

We have just come from Pittsburgh to Cincinnatti and this country just never ceases to amaze me. We ended up staying in Pittsburgh 2 extra days cuz it was just beautiful. Now we arrive in Cincinnatti and that's just as surprising. I haven't had a look round yet but my husband says it's pretty lush. We are here for the Transformers convention which sadly will take up most of the day but it means I get to just chill in the hotel room whilst my son and his father go to the Botcon. (After all there isn't a huge amount worth seeing. I went out to get something to eat and okay it was Sunday but I've seen more life in a graveyard. Plenty of homeless... My husband went down into Kentucky on the hunt for bourbon distilleries but at least my son went over to the convention on his own for the first time ever! so RESULT!) The drive a few days ago from Buffalo to Pittsburgh was great. We took the less main roads down the side of Lake Erie and saw a bit of real rural America. 100+ miles without a single McD's, BK or KFC or chain motels of any kind. Yes folks it can be done! Anyway, crap internet in this hotel so I'm gonna go try and get the brat out of bed. Wish me luck....

Sunshine!!!!

Yippee after apparently the coldest Easter weekend in 40 years, the sun's out. I feel like a new person today, I actually have energy. There are so many things I want to do I don't know where to start. I've had the chap round this morning to fix the alarm that my husband managed to disconnect last week whilst decorating and the engineer and I had a good bitch about everything that's wrong with this country. It's all very well bitching about it but we British don't actually manage to get much changed do we? I was pleased to hear that someone is at last actually saying they felt the government has over-stated the usefullness of immigrants in this country so hopefully we will stop letting quite so many in. Whilst I appreciate genuine refugees deserve to be helped and if someone is bringing skills that we do not have and is therefore genuinely improving the country then fine but we do have to draw the line somewhere. The engineer was saying how he'd had an altercation with a traffic warden recently who actually said he did not read English!!!!!! How the hell is that acceptable? Anyway I am happy to ignore the outside world today cuz there's more than enough to do round here. I have a pooter I want to get up and running, an old laptop I want to try and resuscitate, lots of holiday video to get onto dvds. That's the trouble with this illness - my life goes on hold for long periods and it's depressing to look at all these things just lying there waiting to be dealt with. Right The Bold and The Beautiful is over I can start on the other important things tee hee.

Sunshine!!!!

Yippee after apparently the coldest Easter weekend in 40 years, the sun's out

Sunshine!!!!

Snow in March!!!!

Wow, what a freaky time of year? We actually had snow last week. Okay so it was a flurry for all of about ten minutes but overnight it actually stayed and when my husband went to work at 6 in the morning there was a layer of snow on the cars. Today is brilliant sunshine but freezing. My son and I have been stuck in bed all week with a horrible bug - temperature, headache, stinging runny nose and eyes - not quite a cold but definitely not well. My poor son, along with his autistic disorder he is physically quite weak and sickly just like I was when I was his age. I hate to even consider getting him diagnosed with ME too but tbh he has all the signs. God knows he doesn't need that stigma along with the autistic diagnosis so c'est la vie. All I can do is to do my best to get him to school every day and get him to eat which is a constant challenge and just get thru each day as it comes.

I've just seen a headline about something to do with digging up the Manson ranch looking for more bodies....nearly 40 years on, that's an interesting turn of events. Interesting how crime investigation has moved on, I don't know if they ever even looked at the ranch as being a body dump at the time. Not that there is ever any chance of him being released surely so what difference wd it make to find anything new now. Must go have a look.

Snow in March!!!!

Wow, what a freaky time of year? We actually had snow last week. Okay so it was a flurry for all of about ten minutes

Hello Goodbye

Additional to the last rant, I found this site with a selection of "facts" about this particular Beatles song. I heard this on the radio the other day and cdn't help but be struck by the content of the song's lyrics. http://www.songfacts.com/detail.php?id=132 quote = McCartney explained, "The answer to everything is simple. It's a song about everything and nothing. If you have black you have to have white. That's the amazing thing about life." It also observes how Paul lip-synced in the video for the song which he must have known at the time was against the rules. Surely this completely proves my point, nobody is exactly as they appear and Sir Paul McCartney is no exception.

Heather Mills - for every woman with emotions and feelings

Heather Mills may not be the most perfect person in the world but then I don't believe Paul McCartney is either. The world (or is it just the UK?) seem to hold up Sir Paul as this faultless genius. I personally don't find it hard to believe most of what Heather said about the way Paul behaved while they were living together because I live with someone like that...people that have known him for 30 years or more wd say he's not like that or if he did that you must have driven him to it. Admittedly Heather did not do herself any favours behaving as she has done in a lot of cases but I understand completely being so completely frustrated and depressed dealing with a man so used to getting his own way he won't listen and he won't adapt, sometimes you cannot be perfectly in control. Isn't it amazing how the world is full of apparently perfect people who have never had a hard time and even if they did they'd cope better than she did (you do know sarcasm when you hear it I hope!).

Someone pointed out what a fraud she is because she cd dance on a tv show one day and then turn up in a wheelchair on another day. That is something I can totally relate to living with ME. People see me in a wheelchair one minute then see me walking the next. I am capable of walking but not very far and I get very tired very quickly. That does not mean I am faking it, putting it on for sympathy or any other devious intention behind the simple fact that if you have a disability you have good days and you have bad ones. I completely accept that some days her leg may be just too painful to walk on and by being in her wheelchair she may be able to continue with commitments that otherwise she may have to cancel and yet the press can only condemn her for having feelings. How cd the judge not see how the abuse Paul received in the press when he did try to support her causes alongside her was a huge factor in the disintegration of that relationship. No matter how much Paul tried to support her and love her the press wdn't let him. To someone like Sir Paul, the public image is everything and he eventually began to resent Heather for not being Linda and for not being accepted by his public. Linda wasn't accepted either but she did have the knack of dealing with Paul's ego and staying very much in the background, hence not drawing the press's fire the way Heather has. Heather is certainly no shrinking violet and it's just a shame she never learnt how to let St Paul be the centre of attention he's been for the last 40 years. I still don't believe she set out to get his money, they loved each other to begin with and it was him who wdn't work at it, wdn't make any concessions to her and who ultimately ended the marriage. I know these are not popular opinions but experience has taught me people are never who they seem to be, you don't know what goes on behind closed doors even if you're in the next room. I think the public shd stop holding him up as such a hero and accept that maybe he's just as human as every other husband and that he made mistakes too.

mobile phones - curse or necessity?

How did we ever survive without mobile phones? True they have become an extension of our arms and we wd miss it almost as much as the hand that holds it BUT why is it illegal to use a mobile whilst driving but it is not illegal to walk down the street paying equally little attention to where we are and what's going on around us? I have just had a woman so engrossed in her mobile phone conversation she simply strolled into the road without even looking over her shoulder for a second to see if there was a car coming. I was turning into a petrol station for god's sake, there's a pretty good chance there will be a car there but she never even paused at the side of the road or looked around her. She was strolling slowly across the road so I lightly honked her to say excuse me I wd like to use the road. Instead of acknowledging someone else in the universe and just moving a little faster, she stopped in front of me and started shouting at me about what I thought I was doing. I shouted back one simple phrase - Look where you're going! She continued to shout various things at me and I simply repeated the same line. A few years ago there was a campaign to stop white van man from parking badly as they do called Pavements are for People. Does the same not apply then that roads are for cars? If we drove up on the pavement it wd be wrong but people just wandering in front of cars on the road is okay is it? Can we now start a campaign to teach people that mobile phone calls made by pedestrians are every bit as dangerous as if you're driving!!!!!!!

another trying day.....

I began the day being awake since my husband got up at 6.00 which means really low energy levels. I've also had abdominable pains even worse than usual. Then I cdn't get my son up. When I finally managed to get him to wake up he came down looking like something out of Dawn of the Dead! White as a sheet, complaining of stomach pains too, wdn't eat and nearly went back to sleep on the couch. I did manage to get him in the car but he was in tears on the way so I gave in and came home. It's days like this I severely struggle to find anything positive in my life. Hey ho tomorrow's another day......

My life with ME

I have called this My Life with ME because I truly believe I have had this problem all my life. I had a traumatic birth followed by every childhood illness known to man before I was two. A touch of polio, chickenpox twice, scarlet fever, etc etc etc. Clare Francis the yatchswoman who has had ME for many years once said how she had been a sickly child, often being collected from school complaining of stomach pains and just generally feeling sick. Several years ago I spoke to an old family friend about my condition and she said she remembered my mother doing that. Then in the last few days an article appeared in Canada http://tinyurl.com/2zqtpj about a woman who was severely disabled with this illness for many years and it suddenly occurred to me that I was in that state for years when I was about 18-19 only we didn't have a name for it. I was always sooooo tired and depressed but sheer bloody-minded independence and willpower forced me to carry on pushing myself to at least try to live a "normal" life. I still had a social life, I tried to keep working, I even tried to go back to college when working was obviously too much to cope with. I was absolutely as low as this woman but I simply wasn't in a position to "give in" to it. I was not the most rational person during this time, often hysterical and always weepy but I fought on for years until my first major collapse when I was 23 and I came home from work one day after feeling very low with a series of bad colds , went to sleep at 6 o'clock and woke up the next morning at 9.30!! feeling like I hadn't slept a wink. I continued to deteriorate over the following months until I got to the stage where I cd only eat toast and plain pasta and I cdn't bear to hear the phone ring let alone answer it. It was another 8 months out of my life before I cd cope with getting on a bus without having a panic attack. Once I felt capable of working again I was lucky enough to find a job in a very small company 5 minutes down the road from my flat. From then on for a few years I lived a reasonably normal life though I tended to go through periods of months where I did not feel up to going out at all, it was either work or social life but both was too much. Shirley Conran was another woman with ME who has described her battle to carry on running a business, having kids, dealing with a marriage all the while feeling so tired you can barely even breath anymore and crying almost 24/7. A huge problem with anyone accepting that I am really ill is this fact that I will carry on regardless and I try very hard not to show just how bad I feel so people don't see the reality. I am my own worst enemy in that respect.
When I met my husband 19 years ago, I was in a reasonably normal phase though the party I met him at was the first I had been to in probably years. I was working until after about a year I began to have panic attacks and spells of unexplained dizziness and nausea which eventually cost me the job I had. Then when the nausea became almost permanent throwing up and the exhaustion was 24/7 we were sent to a consultant at the local hospital who did every test he cd think of including a nasal endoscopy, berium meals and various xrays all of which came up fine. We had a certain amount of articles and info about this ME but I don't think that influenced him. He eventually concluded that this was the right diagnosis simply because there was nothing else wrong and the symptoms fit. At last I had an explanation for how I've always been but even then it didn't occur to me that the way I was at 18 was the same thing. I believe if I were any less strong, stubborn and independent I wd have sunk as low as the woman in Canada. But the pushing myself so hard to live normally resulted in the relapses and if I had ever got that bedridden etc maybe I wd have had a diagnosis earlier and my life cd have been so different. I now have an autistic son which I may also have had a lot more help with if the medical profession had been a bit more willing to look beyond my illness and believe that his behaviour was indicative of a problem with him rather than a problem with my ability to cope with motherhood (a comment on my medical records that I found motherhood to be overwhelming - well anyone wd if you had a child like this!!!!). When he was 8 I got a diagnosis from one of the world's leading experts in the field but it has still been a battle with the local education authority and if we had not been able to afford to have him in a small private school I doubt I wd be talking to you now, I wd have killed myself by now. That may sound over dramatic but anyone who has dealt with illness, depression and an autistic child (plus a husband who can't cope with stress and has undiagnosed problems of his own but that's a whole other story) - and trust me there are MANY of us - will know that I am not exaggerating, there was a time when I cd have driven a car into a brick wall without thinking twice about it. I have wanted to get all this out there for years because I believe it is important for anyone newly diagnosed or struggling with the symptoms without a diagnosis yet to know that they are not alone. I have often gained a great deal of strength from other people's history and experiences and if I can help even one person through that awful misery this illness reduces your life to, then it's worth the effort of all this typing! Many friends have said I shd write a book about my experiences but this is going to have to do for now. I guess this shd go under the "About me" section but for now it can stay where it is. I don't care if anyone's interested really I am doing this more for my own therapy I just hope it might interest someone.