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www.hasslefreeminiatures.co.uk (Go To: Hasslefree Homepage) => Libertee's Miscellaneous Musings II => : libertee May 09, 2005, 10:29:02 AM

: M.E. ....What it means
: libertee May 09, 2005, 10:29:02 AM
Alright, i get asked quite a lot what the 'M.E.' thing is that i suffer from and how it affects me so i thought that i would let u all know.

M.E or PVFS (post viral fatigue syndrome)or in USA it is known as CFS (chronic fatigue syndrome) is a long term condition which invades every part of your body.

Basically i got three very severe infections in 1996 starting off with meningitis and ending up with glandular fever.  I never really quite got well from these and was diagnosed as M.E in January 1997.  My body still shows a reaction to 'Epstein barr virus.

Some days are good and i can function well, some days are bad and i cant function at all.

How it affects me:

1:  My whole body aches and if it is bad i walk like an arthritic 90 yr old.  even if the day starts well by 4pm my body starts to seize up.  This is really annoying as the kids are home from school and i find it hard to cope with them.  If i make the mistake of sitting on  the sofa for an hour to watch tv in the evening then i am there for the rest of the night as i cant physically move.  I get random pains in my bones, muscles and joints which the painkillers cant touch.

2:  Some days my hands or feet dont work.  This means i may drop my juice or fall over a lot as when i go to step forward as my foot just 'isnt there'..I broke a rib in the autumn when i fell and have fractured other bones over the years.  Imagine very bad pins and needles but without the pain.  On days my hands dont work then i cant work the keyboard or fill orders or do anything really without it taking me 5 times as long.  I also lose spatial awareness and walk into cupboards and doors.
 
3:  Exhaustion.  Not just being tired but complete exhaustion where you cant even think and all you can do is lay down and sleep.  I go to bed most afternoons whilst the kids are at school and this is why Meg goes to a childminder 4 days per week during school hours.  Before i met Kev i used to just not get out of bed for days but with small children you just dont have that luxury, you just have to get up and get on with it.

4:  Cant think.  Some days i cant cope with answering even basic questions like "tea or coffee ?".  My brain just switches off.  Sometimes i have to keep asking Kev what day it is.  I 'flit' from various tasks as i forget what it is that i was supposed to be doing.

5: Nausea.  Like being on a permanent hangover.  If i dont eat every hour or so i feel nauseous.  

6: Depression.  This has arisen due to all of the above.  It can be so frustrating even after all these years to be unable to accomplish even a percentage of what i used to.  I get very  annoyed with the fact that i am so incapacitated and my body doesnt listen to the instructions that i give it..  I feel bad that i cant do many things with the kids when i am tired.  Sometimes even listening to them read isnt possible.  Somedays all i can do is sit and cry or stare out of a window.

7:  The medication that i am on has horrible side effects but it does mean that i can partly function.  The steroids have made me put on a lot of weight which doesnt help.  I am also on Anti-inflammatories, strong painkillers, Anti-emetics (cut down on the nausea) and various other bits and pieces.

8: You would think that with all of the above that i wouldnt have a problem sleeping..........well that is where you would be wrong as anyone with  small children will tell you!!.....lol....getting into bed doesnt necessarily mean you will get to sleep!


If you ever meet me you would never guess all of the above as i an very practised at  'just getting on with it' and on a short-term basis I am able to override my bodys desire to just curl up and sleep.  Unfortunately this is like living on borrowed energy and my body lets me do it for a certain time ( like Salute) and then it claims it back with a vengeance and I 'shut down'......this is what happens for about 2 weeks following shows.

So if my pc is quiet for a while then you know what is going on.  Or if i take a while to answer an email.  Generally i am quiet about the time of the new releases as these take a lot of my energy.  Also if i am bad then Kev has to do more around the house and then falls behind with his work.  The knock-on effect to this is that sometimes the greens are late going to the caster and the releases are delayed a few days.

Most of the time we permanently play 'catch-up' which is why we are happy to let HF grow in its own pace rather than continually plug for new sales outlets.

So dont worry!...we have got this far and arent planning on disappearing, i just thought that if i let you know a bit about the condition that you would all stop worrying when i disappear for a few days at a time!

Sally :)
: Re: M.E. ....What it means
: libertee May 19, 2008, 09:46:19 PM
Since the collpase after Salute i have had a number of people ask me if it is because my M.E is getting worse so i thought i would take a look at this posting again to see a comparison from 3 years ago.

My M.E. is more unstable than it used to be and in some senses it is actually a lot worse.  Most symptoms seem to be the same as three years ago except nothing has got better only worse.  From my diagnosis in January 97 through to July 2003 i was steadily improving however since i had Meg it stabilised and certain aspects are now worse and deteriorating slowly.

My body  'shuts down' more often....i go very cold and cant get warm.  Hot baths and lots of layers do help but usually the only way to warm up is bed with a hot water bottle.  If i get even more tired as i try to 'go through the pain/exhaustion' barrier i will collapse.  This is what happened at Salute and resulted in me laying on the floor shaking.  When i am very tired i get uncontrollable muscle spasms which if someone who isnt used to them seeing them may think i am having an epileptic fit.  It isnt very nice and i cant mentally or physically function when this happens....sometimes it is actually very scary.  They arent fits just muscle spasms.

I am sleeping a lot more than i used to.  I am also less rested when i wake up and it takes me longer to 'get moving'.  Sometimes if one of the children wake up in the night i am unable to get out of bed to go to them and need to wake Kev to go instead.....i always used to be the one up and Kev slept through!  It does help that Jen, Kieran and Meg are all at school full-time now but if i didnt have a part-time nanny coming in 4 days each week for a few hours so that i can rest then i would be in trouble physically!

Chiropractic and various alternative therapies alleviate some of the muscular symptoms but cant help the almost permanent headaches and nausea.

so there you go!    Any more questions that you want answered?

: Re: M.E. ....What it means
: Kradlo June 04, 2008, 05:24:38 PM
You've my sympathies, Sally.  I know it's rough, but I admire you for soldiering on.

Best wishes to you.
: Re: M.E. ....What it means
: Greggoman September 23, 2008, 08:01:39 PM
:( is there nothing you can do/take to make the effects minimal?

Also are you going to be able to do shows like the next salute? Or are you not going to risk it?
: Re: M.E. ....What it means
: Thantos September 23, 2008, 09:09:47 PM
Ahh, it is a seriously awful condition to have. There are many people who recover from it after many years, apparently. The rest just put up with it and soldier on.
My mum has ME too, (and is also called sally  :shock:) so I can sympathize with you to some level. She has had it for about 16 years now; It can be hard, but she goes through good and bad patches, like yourself.

It seems no large credible medical body is willing to dedicate themselves to sorting out what the hell it actually is and how to cure it.
Personally, I think they should look more deeply into how it effects the nervous system, specifically the chemical signals sent through nerve synapses in all types of neuron. It fits the bill in my mind anyhow...

Do you find that not eating certain things helps? Like Wheat, or only eating Organic food? Or sticking to a strict controlled daily schedule?
My dearest mother, went to a centre for a few meetings - detailing how to manage M.E. , and is now implementing a load of methods to help her recover from (?) /manage the condition. - although it is far from a generic disorder, and seems to effect ever sufferer differently and to varying levels.  :?

Good luck managing it, take it easy.
: Re: M.E. ....What it means
: Lord Markgraf February 09, 2009, 03:57:36 AM
I feel for you Sally, my Mother suffered from CFS for nearly three years(diagnosed). However she still occasionaly suffers from fatigue and joint pain as well as head pain. I hope that you as well as, Thantos' mother, win your fight with CFS.
: Re: M.E. ....What it means
: weareblind February 09, 2009, 09:39:42 AM
My best wishes too, Sally. What a terrible thing... some cure at the horizon?
: Re: M.E. ....What it means
: Hasslefriesian February 09, 2009, 09:43:47 AM
No. None.
: Re: M.E. ....What it means
: weareblind February 09, 2009, 09:45:51 AM
No. None.
:blub:
Carry on - my congratulations for your will.
: Re: M.E. ....What it means
: libertee February 09, 2009, 11:12:50 AM
i think some call it 'bloody mindedness'!...lol!

Eating certain foods and avoiding certain foods does help alleviate some of the symptoms.  I eat organic/free range/no processed foods/ low fat/ low salt, take herbal supplements, have physio twice a week

I think one of the major changes that affect most aspects of my life is the fact that i have put on a lot of weight since getting ill, it is caused by my body storing all energy it takes in...........so i can be exhausted and eat something and instead of my body using this as energy to keep me going it just stores it up as fat.

 It is very upsetting sometimes as i know people look at me and automatically think i am overweight because i eat too much but that isnt the case.  On Frothers we have a troll who if they cant get to Kev will try to get to him by insulting my weight.  Even now with the ME publicised on here i still get prejudices.  an example is the questionaire at Christmas that people filled in, under the section "anything else we can do/do better/stop doing" someone wrote."stop eating please Sally".  That hurt, especially as it is a long-standing customer.
: Re: M.E. ....What it means
: gi6ers February 09, 2009, 11:20:51 AM
 :grrr:
: Re: M.E. ....What it means
: Avicenna February 09, 2009, 12:46:51 PM
 :whaaa:
: Re: M.E. ....What it means
: weareblind February 09, 2009, 01:08:15 PM
i think some call it 'bloody mindedness'!...lol!
On Frothers we have a troll who if they cant get to Kev will try to get to him by insulting my weight.
:whaaa:
But...but... what the hell strikes the minds of these jackasses?
: Re: M.E. ....What it means
: mcfonz February 09, 2009, 01:29:07 PM
i think some call it 'bloody mindedness'!...lol!

Eating certain foods and avoiding certain foods does help alleviate some of the symptoms.  I eat organic/free range/no processed foods/ low fat/ low salt, take herbal supplements, have physio twice a week

I think one of the major changes that affect most aspects of my life is the fact that i have put on a lot of weight since getting ill, it is caused by my body storing all energy it takes in...........so i can be exhausted and eat something and instead of my body using this as energy to keep me going it just stores it up as fat.

 It is very upsetting sometimes as i know people look at me and automatically think i am overweight because i eat too much but that isnt the case.  On Frothers we have a troll who if they cant get to Kev will try to get to him by insulting my weight.  Even now with the ME publicised on here i still get prejudices.  an example is the questionaire at Christmas that people filled in, under the section "anything else we can do/do better/stop doing" someone wrote."stop eating please Sally".  That hurt, especially as it is a long-standing customer.

Not that I need to say but that is totally out of order. Its the media that has drummed up a lot of this though and they neglect to inform the world that there are actually quite a few medical conditions and even genes that can afflict people.

Thyroid problems being an obvious one. Weight is something I have had issues with in my life and it doesn't matter what the cause is it can be incredibly depressing. I wouldn't go swimming because I didn't like people looking at me, I even have a stuck up relative that could heavily criticise me for going near the desert table at family gatherings and informing me that I didn't need any! I think I was about 10 or 11 at the time, suffice to say that she doesn't get a christmas card from me . . . .

I was lucky in that I think my weight was down to comfort eating due to the strains on my family as my parents split up, that and the Italian / Greek blood passed down from my grandmother which means my build is a bit different to your average Brit, I managed to trim down.

I absoloutly despise people who have nothing better to do than to try and hurt someone - either emotionaly or physically.

Don't let them get to you Sally or Kev for that matter!  :bighug: Sounds like they are jealous if you ask me . . . . wonderful family, popular buisiness based around a talent . . .  8)
: Re: M.E. ....What it means
: grekwood February 09, 2009, 01:46:03 PM
  :( some people are just nasty  :shrug:

: Re: M.E. ....What it means
: Bodhi February 09, 2009, 01:52:41 PM
i think some call it 'bloody mindedness'!...lol!
On Frothers we have a troll who if they cant get to Kev will try to get to him by insulting my weight.
:whaaa:
But...but... what the hell strikes the minds of these jackasses?

I'm feeling very very small and like a complete and utter failure but maybe, just maybe... If I make someone else feel even worse there's a slim chance I might start feeling better...

OK. Didn't work, odd.

Why am I feeling even smaller and more worthless now?

Now I'll have to try again, even harder. Surely if EVERYONE feels like crap I will start feeling a bit better...

Didn't work.

Why am I feeling even smaller now?

At it again...

THAT'S what goes through their minds.
A basic wrongthinking that feeds it self.

Oddly enough it's far to common but I've never really understood it.
: Re: M.E. ....What it means
: Hasslefriesian February 09, 2009, 02:30:21 PM
.....an example is the questionaire at Christmas that people filled in, under the section "anything else we can do/do better/stop doing" someone wrote."stop eating please Sally".  That hurt, especially as it is a long-standing customer.

You didn't tell me about that.

I hope they don't live too close to us.
: Re: M.E. ....What it means
: libertee February 09, 2009, 02:38:39 PM
.....an example is the questionaire at Christmas that people filled in, under the section "anything else we can do/do better/stop doing" someone wrote."stop eating please Sally".  That hurt, especially as it is a long-standing customer.

You didn't tell me about that.

well u would have got angry and u were ill so i didnt think it necessary
: Re: M.E. ....What it means
: RogerB February 09, 2009, 02:53:48 PM
That is just totally crap.  It's enough M.E. sufferers have had to go through people disbelieving them or belittling the illness.  Personal insults are really not on!

 :bighug:
: Re: M.E. ....What it means
: Hybrid February 09, 2009, 03:02:29 PM
If you'll pardon my American, that's pretty effed up. I never understood the mind of a cyber-jerk. Busting chops, (another way to say teasing) among friends is one thing but outright insults for no other reason but to insult seems dumb. Hope Kev does not find him, he might ruin those talented hands on the dope  :devilgrin
: Re: M.E. ....What it means
: weareblind February 09, 2009, 03:10:45 PM
If you'll pardon my American, that's pretty effed up. I never understood the mind of a cyber-jerk. Busting chops, (another way to say teasing) among friends is one thing but outright insults for no other reason but to insult seems dumb. Hope Kev does not find him, he might ruin those talented hands on the dope  :devilgrin
You're right!
Have you changed avatar?
: Re: M.E. ....What it means
: Lurching Dead February 09, 2009, 04:37:49 PM
Things like that really p*ss me off. I hate casual thoughtlessness. Soem people just never stop to think about their actions the effect they may have on other people. Saying that, you'd have to be a complete **** to not realise that a comment like that is hurtful.

I know it's not in the same league, but yesterday some lads walked past our house and just pushed over the snowman my daughter had made. Luckily I didn't see them (my daughter did though) otherwise there would have been trouble. My daughter was really upset. She's only coming up 5 and this is the first real snow she's seen. To her that snowman meant something. I was really angry to see my little girl crying because of some mindless idiots who probably wouldn't have enven thought they were doing anything nasty. I managed to save the snowman, but was left feeling really angry and I hate that.  :tantrum:

I hoep whoever made that comment is reading our comments and feels ashamed. I also hope that they have the courage to appologise.

Don't worry Sal, some of us judge a person by who they are and their actions, NOT by something as facile as their weight.

 :bighug:
: Re: M.E. ....What it means
: Captain Sprout February 09, 2009, 06:00:46 PM
That's the sort of remark people should be thoroughly ashamed of.

The internet brings out a lot of spineless morons who make remarks they would never have the guts to make in real life. Its the downside of a mostly positive invention.

I'm glad there were better things said in the survey that were true.
: Re: M.E. ....What it means
: lizcam February 09, 2009, 06:30:44 PM
That's uncalled for even if you didn't have M.E.  I'm a large woman (though I have manage to lose 50 pounds in the last few months) and I know how people can be.  Blasted a-holes!

I'm just getting into a relationship with someone with M.E.  He's had a couple of bad spells over the last few months and it scared me the first time.  It's worse that he's in England and I'm in California so all I can do is talk to him when he feels bad.  My voice seems to calm him but I so want to do more.  Any suggestions on that from Kev or any other supporters would be a BIG help.
: Re: M.E. ....What it means
: DRAGON February 09, 2009, 07:05:58 PM
I get people take the p*ss out of my limp all the time - you develop thick skin eventually but sometimes ill informed comments have a way of striking home and really hurt  8:::
: Re: M.E. ....What it means
: Lurching Dead February 09, 2009, 08:39:42 PM
I get people take the p*ss out of my limp all the time - you develop thick skin eventually but sometimes ill informed comments have a way of striking home and really hurt  8:::

People are thick.

My daughter has a lazy eye and has to wear an eye patch over her good eye for a couple of hours a day. The amount of people who say to her "Are you a Pirate"? She's 5 next month. I like to tahnk them for their sensitivity and for not making a sweet innocent child overly self conscious of something that is in no way their fault. They usually have the good grace to go red.

What is it with people that they just seemed so scared of anything inthe least bit different?
: Re: M.E. ....What it means
: Bodhi February 10, 2009, 08:39:55 AM
My daughter has a lazy eye and has to wear an eye patch over her good eye for a couple of hours a day. The amount of people who say to her "Are you a Pirate"?

Don't I know it? I spent a great deal of my childhood with just such an eyepatch. Still am crosseyed though...

My daughter chooses to stick out (Runs some sort of homemade Goth/punk/cosplayer style - very much tim Burton inspired) and is mostly slightly amused by the comments she gets but some of them are really over the top for comments you'd give a thirteen year old girl  :oops: And she gets threats six times a day. Bizarre that, over just pieces of clothing.
: Re: M.E. ....What it means
: Shaved Dwarf February 10, 2009, 09:59:49 AM
I've spent years trying to understand people, especially those being mean or even cruel to others. Even so I didn't get far. My only result was that there are two kinds of those people: the ones that just like hurting others, because it makes them feel superior (at least for the moment), and the ones that are so stupid they don't even notice it. And that I can't change that.
Please don't feel sad, Sally. Both kind of those people aren't able to hold a candle to you.
: Re: M.E. ....What it means
: Lurching Dead February 10, 2009, 04:31:36 PM
My daughter has a lazy eye and has to wear an eye patch over her good eye for a couple of hours a day. The amount of people who say to her "Are you a Pirate"?

Don't I know it? I spent a great deal of my childhood with just such an eyepatch. Still am crosseyed though...

My daughter chooses to stick out (Runs some sort of homemade Goth/punk/cosplayer style - very much tim Burton inspired) and is mostly slightly amused by the comments she gets but some of them are really over the top for comments you'd give a thirteen year old girl  :oops: And she gets threats six times a day. Bizarre that, over just pieces of clothing.

Good for your daughter I say Bodhi. I like it when people have the courage to stand out from the crowd. Sad that she get's threats though. There was a goth man killed in this country simply for being a goth not so long ago. Quite shocking really.

I sometimes look at my kids and wonder about the world we are handing over to them.

 :shrug:
: Re: M.E. ....What it means
: weirdwolf February 11, 2009, 02:08:09 PM
Your right Sally, that comment was bloody mindless. Still, he deserves a snout'in for making it.

Admiration is to small a word when it comes to our Sally. How you cope with four children & a artistic husband... :whistle: :lol: is a true inspiration to me personally. The other night I took a fall getting out of bed when my legs just didn't want to play. I fell & smashed my face on the bed side drawers, losing four teeth & ended up looking like I've gone 20 rounds with Marvin Hagler. It was your situation that came into my head whilst I was laying on the floor. All I'll say it gave me a light to cling to when my mind was slipping into a dark pit.

Remember this Sally. For the one odious little tick that makes a comment you have a thousand followers. Your actions have proved time & time again that you have a heart of gold. Madam you have my respect ten fold.

I don't mean to sound harsh here people. This post is my way of saying thank you to Sally even though she had no knowledge that she had helped out. I'm not looking for pity or sympathies of any sort. I'm harsh with myself & that is helping me cope with M.E/ CFS. A old soldier may still crawl & bite peoples ankles, if you know what I mean... :wink:
: Re: M.E. ....What it means
: Hasslefriesian February 11, 2009, 02:19:05 PM
....I fell & smashed my face on the bed side drawers, losing four teeth & ended up looking like I've gone 20 rounds with Marvin Hagler.

 :shock: :crazy: Ouch!
: Re: M.E. ....What it means
: perceptionistruth February 11, 2009, 02:36:09 PM
Not that I need to say but that is totally out of order. Its the media that has drummed up a lot of this though and they neglect to inform the world that there are actually quite a few medical conditions and even genes that can afflict people.

And frankly, it shouldn't matter to anyone the reason for people being the weight they are.  I'm overweight, I know why, it's my business.  It may be because I eat too many pies, it may be because I don't exercise enough, it may be because I have a medical condition, it may be because genetically I'm predisposed to being this size with the lifestyle I have.  But it's still my life, not theirs to judge.  Even if it *is* because I eat too much pizza, drink too much beer and don't exercise then they still have no right to judge, because everyone's life is their own to live.
: Re: M.E. ....What it means
: perceptionistruth February 11, 2009, 02:39:45 PM
What is it with people that they just seemed so scared of anything inthe least bit different?

Natural self defence mechanism we have left over from then we were animals.  However, we were also gifted with the ability to think before we speak which is a feature decent people use to moderate our baser instincts.

Some people however are too lazy, sadly.
: Re: M.E. ....What it means
: Lurching Dead February 11, 2009, 03:28:59 PM
Hope you're okay now WW.

Are you healing?
That fall sounded pretty serious.
: Re: M.E. ....What it means
: DRAGON February 11, 2009, 04:57:05 PM
 :metoo: Maybe it's time you invested in a padded cell ! :lol:
: Re: M.E. ....What it means
: weareblind February 11, 2009, 04:59:56 PM
Hope you're okay now WW.

Are you healing?
That fall sounded pretty serious.
Are you talking about this other thread?
http://forum-of-doom.com/index.php?topic=10290.0
: Re: M.E. ....What it means
: Lurching Dead February 11, 2009, 06:16:57 PM
Hope you're okay now WW.

Are you healing?
That fall sounded pretty serious.
Are you talking about this other thread?
http://forum-of-doom.com/index.php?topic=10290.0

No weareblind,

I was talking about WW's earlier post:

The other night I took a fall getting out of bed when my legs just didn't want to play. I fell & smashed my face on the bed side drawers, losing four teeth & ended up looking like I've gone 20 rounds with Marvin Hagler.

Sorry. I didn't put the quote in.   :oops:
: Re: M.E. ....What it means
: weareblind February 11, 2009, 06:55:34 PM
Ah, ops, you're right... Sorry I didn't read this post of WW because I talked about this incident with him...
 :oops:
: Re: M.E. ....What it means
: Brandlin February 12, 2009, 01:38:19 AM
.....an example is the questionaire at Christmas that people filled in, under the section "anything else we can do/do better/stop doing" someone wrote."stop eating please Sally".  That hurt, especially as it is a long-standing customer.

You didn't tell me about that.

I hope they don't live too close to us.

Or any other fodder
: Re: M.E. ....What it means
: Ben Brownlie February 12, 2009, 01:56:40 AM
Bearing mind the amount of pillocks in our hobby it could well be someone said it thinking it was funny and not realising it was offensive... perhaps
: Re: M.E. ....What it means
: sagunt February 12, 2009, 12:26:35 PM
Bearing mind the amount of pillocks in our hobby it could well be someone said it thinking it was funny and not realising it was offensive... perhaps
That was my thought, more or less.  Of course, my absence up to now and weighing in as an apologist may look suspicious, but trust me, I'm a dedicated fan of Sally.

Regards the stupidity and insensitivity of others:  I suspect we've all got experiences which are shocking in their blatant disregard for humanity.  Just last week one of my students made a cutting remark about bipolars.  Without knowing, they labeled me that not based on actual knowledge or astute observations, only flippant generalisation.  I didn't tell them how right they'd been, but it does hurt to fall within a group identified with prejudice.

Another possible explanation could be Sally's customer mistakenly dropped out a word or phrase which would've made it clearly an attempt at humour - though still a poor topic for such.
: Re: M.E. ....What it means
: Hybrid February 12, 2009, 12:32:07 PM


Natural self defence mechanism we have left over from then we were animals.  However, we were also gifted with the ability to think before we speak which is a feature decent people use to moderate our baser instincts.

Some people however are too lazy, sadly.
[/quote]
Better yet, we can think before we type. it actually requires more effort.
I know it hurt bleeping bleepers do that so very well. If I may, I would like to share a little trick I made up being a social retard back in elementry school.
Sally, think of it this way, does his opinion really count? If he one day never said another word to you would it sadden you? If not (g-rating it) then they can go take a walk, if you catch my meaning.

Weird Wolf, sorry to hear about your fall there, hope they gave you some decent meds or something to dull the pain.
: Re: M.E. ....What it means
: Bodhi February 12, 2009, 02:16:30 PM
Bearing mind the amount of pillocks in our hobby it could well be someone said it thinking it was funny and not realising it was offensive... perhaps

Indeed such things happen quite often. It helps to bear in mind that others have problems to. I had a friend with an Aspbergers diagnosis who had this "talent" of making everybody dislike him within a space of a ten minute conversation by saying all the socially "wrong" things possible. But really he had a handicap and no way of "reading" social signals we other take for granted. Noone saw it though since he appeared "normal" in most other ways.
: Re: M.E. ....What it means
: Lurching Dead February 12, 2009, 04:22:34 PM
Bearing mind the amount of pillocks in our hobby it could well be someone said it thinking it was funny and not realising it was offensive... perhaps

Indeed such things happen quite often. It helps to bear in mind that others have problems to. I had a friend with an Aspbergers diagnosis who had this "talent" of making everybody dislike him within a space of a ten minute conversation by saying all the socially "wrong" things possible. But really he had a handicap and no way of "reading" social signals we other take for granted. Noone saw it though since he appeared "normal" in most other ways.

I hear you there Bodhi. Most of the young people I am working with at the moment have Asperger's and it can sometimes make their life absolute hell. They can get quite a lot of negative responses form those around them.

Personally, i really enjoy working with them for the most part. It makes you thinkl about how you act and speak, as it's so easy to say something that they dont' get.
: Re: M.E. ....What it means
: sagunt February 12, 2009, 05:14:01 PM
Have you read Curious Incident of the Dog in the Nighttime?  Does it fit your eexperience?  Is it believable?
: Re: M.E. ....What it means
: mcfonz February 12, 2009, 07:51:35 PM
I have been to school with kids with aspergers and have and now work with kids which have aspergers.

Curious Incident of the Dog in the Nightime is representational of some but not all. I would say that the character portrayed in the book is more autistic.

But the autistic spectrum is a bit of a big basket. One end of it you have cases like Rainman or worse where their level of functionality is hampered by their symptoms. Aspergus again varies in its severity - and whilst you get some people with it that only display small signs others are more obvious. Aspergus tends to be considered low level autistic spectrum but where the boundry is between being aspergic and full on autistic is do not ask me . . . . . I have tried to research it but it's all very very "loose" in defenition.

The other problem I found is that there are other things out there that are similar in many ways to aspergers such as Dispraxia. Not to mention the number of different defenitions or symptoms . . . .
: Re: M.E. ....What it means
: Bodhi February 12, 2009, 08:19:28 PM
Heh. I've worked with aspbergers kids to. Small world  :wink:
These days I mostly work with kids who have problems with aggresion control so rarely aspbergers diagnosises among them, more often ADHD and DAMP. But the diagnosis is a very very small part of the learning to know the individuals.
: Re: M.E. ....What it means
: Lurching Dead February 13, 2009, 09:07:03 AM
I have been to school with kids with aspergers and have and now work with kids which have aspergers.

Curious Incident of the Dog in the Nightime is representational of some but not all. I would say that the character portrayed in the book is more autistic.

But the autistic spectrum is a bit of a big basket. One end of it you have cases like Rainman or worse where their level of functionality is hampered by their symptoms. Aspergus again varies in its severity - and whilst you get some people with it that only display small signs others are more obvious. Aspergus tends to be considered low level autistic spectrum but where the boundry is between being aspergic and full on autistic is do not ask me . . . . . I have tried to research it but it's all very very "loose" in defenition.

The other problem I found is that there are other things out there that are similar in many ways to aspergers such as Dispraxia. Not to mention the number of different defenitions or symptoms . . . .

 :metoo:

The thing is, the Autistic Spectrum is huge. No person with Asperger's is the same as another. Diagnosis is very tricky to get your head around as well, as you can have Asperger Traits etc. in an attempt to classify your level of severity.....  :whistle:

Also, other issues can mimic the symptoms. THere is cross over in a lot of these difficulties, making diagnosis challenging. ADHD, Dyspraxia, Attachment Disorder can all have similar effects on a young person.

The Curious Incident is at least an extreme case of Asperger's and at best someone who is Autistic. Still a good read though.

If anyopne wants more info on Asperger's, I'm no expert, but I'm sure I've got some stuff I could dig out somewhere and make available to people.

@ Bodhi... small world mate. Perhaps we should start up a business together...  :silly
: Re: M.E. ....What it means
: mcfonz February 13, 2009, 09:43:26 AM
Lurching D - sounds like you have a similar profession to me!

I work at a kids home these days. I have been looking into Aspergers as part of my NVQ and retrospectively on a young person I used to work at a school with during my shortish (6month) stint as a teaching assistant.

He had aspergers but to me did not give any of the strong tell-tale signs of it. Socialising was good - was just nervous / anxious in new situations but given his background that is not nessisarily aspbergers. Having looked into it I suppose there is an argument that he could be both aspergers and dispraxic but not a great example of either!

Then ofcourse as you say - there is the attatchment theory which is effectively a theory that sort of backs up the old but not nessisarily inaccurate "nature or nurture".

Wow this conversation is getting to be quite awesome!

As for aspergic traits apparently their is quite a high percentage of the population that present with aspergic traits - can't remember off the top of my head exactly what although I remember that it is more prevelent in males. I can understand that though if we are outnumbered by ladies - many a time I have felt unable to left my stare from my shoes to my mothers face!!!  :lmao:
: Re: M.E. ....What it means
: Marcus The Rogue October 22, 2009, 12:00:50 PM
Hi Sally,

Just in case you missed this. Very interesting and hopeful I think. The Virus occurs in mice originally and has somehow crossed species.

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf


Atb
Mark
: Re: M.E. ....What it means
: libertee October 22, 2009, 02:23:32 PM
Hi there,

i hadnt seen it, have had a good read though and i think it is a breakthrough. I know some people thing ME/CFS is one of those 'made-up' conditions invented by lazy people who just want an excuse not to work or so anything with their lives but it isnt.  It is extremely frustrating and debilitating.  One of the most frustrating aspects is that one day you feel absolutely great/top of the world/loads of energy to play with the kids/go shopping etc and the very next day you may be unable to move and even the slightest noise the kids make is so annoying that you want to scream.  Anykind of test/diagnosis/treatment is very welcome indeed.
: Re: M.E. ....What it means
: Marcus The Rogue October 22, 2009, 03:08:04 PM
I know some people thing ME/CFS is one of those 'made-up' conditions invented by lazy people who just want an excuse not to work or do anything with their lives but it isn't. 

The answer to that is how come kids suffer from it. The daughter of our friends suffered for years (from the age 12to21 years and still does a little) she was placed on the child protection register at first as they thought it was Münchhausen by proxy she was that ill.
Until a "specialist" agreed it was ME/CFS.
People need to know just how bad this condition is, it doesn't kill you but at times it makes you want to end it.

As for a test at least there is serious hope on the horizon for the 300,000+ sufferers in the UK alone and just maybe this will get the government to get there act together and do something about it.

Anyway, glad you found the article uplifting I new you would.

Fingers crossed Sally.

Atb
Mark
: Re: M.E. ....What it means
: Klute October 23, 2009, 12:23:29 PM
Ooh thanks for the heads up Mark thats very interesting reading.

Im back to the "bashing my head against the doctors wall" phase lol. Specialist clinic signed me off and removed my diagnosis of me/cfs after sleep studies revealed I have mild sleep aponea. I tried telling them that wasnt the underlying problem but they seem to like closing the book on you.

Be nice when they have a blood test for this retrovirus. Funny how it started for me after a very nasty case of food poisoning.

Oh and Sally...chin up babe dont let the bastards wear you down.   :wink:
: Re: M.E. ....What it means
: Caillte January 04, 2010, 01:27:33 PM
You know reading your symptoms Sally, sounds like you need to move down here to Australia.. getting warm is much less of a problem here ;)

The article is certainly interesting, though to be honest I cannot help but read it sceptically. However if they can prove a link between ME/CFS and the retrovirus that will go a long long way towards helping people that suffer from the disease.

Oh and I love working with Asperger's and other ASD kids, I find them to often be quite capable and bright students who have often missed a lot of schooling by the time I see them in high school. But they can achieve well when you give them support and understand their problems. Sometimes being a nerd has unexpected side benefits.
: Re: M.E. ....What it means
: Pepino January 06, 2010, 04:44:38 PM
I noticed this topic browsing through your guy's forum, and something that can be good for treating ME/CFS is Reiki, which is a Japanese healing art using energy.  It's common enough in the States and Britain that it shouldn't be too hard to find someone who does it.  My mom is a practitioner, and frequently works with people who have had difficulty treating pain, fatigue or anxiety with other treatments.  Hope that helps.
: Re: M.E. ....What it means
: libertee January 06, 2010, 08:56:03 PM
i have tried this therapy and it does work to a certain extent for alleviating certain symptoms but it doesnt work long term unfortunately...i must admit though it is very enjoyable!
: Re: M.E. ....What it means
: Klute January 07, 2010, 12:14:17 PM
I find most pain relief is very short lived. Bad past experiences with medication makes me scared of new ones.

See the retro-virus theory has been shot down by British scientists after more studies.  :(
: Re: M.E. ....What it means
: Caillte January 08, 2010, 01:13:52 PM
See the retro-virus theory has been shot down by British scientists after more studies.  :(
Sorry to say that it seemed likely on reading the initial posting. The wording of the original article was such that I suspected they had an untested hypothesis and that was all. Ah well hopefully one day something more concrete will be discovered, by way of treatment or cause (or both).
: Re: M.E. ....What it means
: libertee January 08, 2010, 02:19:33 PM
I find most pain relief is very short lived. Bad past experiences with medication makes me scared of new ones.

See the retro-virus theory has been shot down by British scientists after more studies.  :(

yes i saw that the other night.
: Re: M.E. ....What it means
: Scutatus May 21, 2010, 02:48:10 PM
My brother has M.E. It takes all he has to hold down his job. Almost every day he invariably gets home exhausted. By the time weekends come around he is often a spent force, with little if anything left for living a life. I am sure it has shaken his social skills. He has one friend, no woman in his life (ever as far as I know) and goes out little.  He immerses himself in his hobbies and enjoys steam rallies and air shows and the like. But getting to them is an ongoing battle. I have lost count of the number of times he has made plans, even spent hundreds of pounds on tickets for this or that - and then not been able to go, flaked out on his bed.

Sometimes, for days, weeks or even if we are lucky, for a few months, he can be more or less fine, and then - bang, all his strength and energy and motivation just abandons him. One moment he can be fine and then just as sudenly he is not. It is like he has hit a wall. What with that and the related crippling migraines one has to be so careful. There have been times when we have attempted days out and a few hours in he has turned to me and said "time to go" and that's it,  there is no arguement: day over, no matter what else we intended, because I know that shortly he will be flattened with fatigue and illness and if we hang about he'll have the nightmare of being stuck like that while out, still needing to get home somehow.

Basically he has to literrally take one day at a time, even each hour at a time, making the most of the good times, just getting through the bad times. And the bad times have been very bad. Back in his teens and early twenties he suffered badly with depression over the dibilitating nature of his M.E. He had always wanted to join the R.A.F - had joined the Air Training Corps as a kind of preperation, but the onset of M.E had brought all that crashing to the ground around him. The death of his dreams was a hard thing for him to handle. At one point he seriously considered suicide. Thankfully he told me as much in time for me to talk him out of it and show him that life was still worth living. At times he still gets dips and lows but with his parents support and mine he comes through.

He too has had Doctors dismiss his situation. The worst was when he was too ill to work and had to go for a medical to justify getting benefit, and when he mentioned he had M.E, he even had one tell him "I'll be the judge of that" - even though my Brother had suffered from it since his school days! (He is now in his thirties). That same person with whom I do not wish to share my lembas bread incidentaly, then turned to my Mother -who had accompained my brother because he was so bad - and had the affront to ask "and why are you in a wheelchair?" !!!

Even today there is an incredible dismissive snobbery in the medical profession. lt is getting better, but there are still far too many jerks out there who make life for my brother far more difficult and stressful than it needs to be. Unfortunately such swine tend to have influence and power.

For years my brother struggled with work. Luckily for him he is a very intelligent and talented fellow and he always proved his worth, but he has also always had a lot of sick days. Naturally there have been times when that has become a problem. Fortunately he now works for a very understanding and tolerant boss, who allows him to arrive late and leave early if need be - or take complete off days as and when required - all so long as the work is done by a certain time. This arrangement makes all the difference for my brother and for the first time that I know of he is happy in his work - though as I said, it still takes all he has and more to hold down.

I sympathise completely with you Sally and wish you all the best in your ongoing struggle. All my best Wishes,
Scutatus
: Re: M.E. ....What it means
: libertee May 21, 2010, 03:02:38 PM
I am sorry to hear about your brother, it is a condition i would not wish on anyone and unless you experience first-hand it is really hard to fully grasp how debilitating it is and how it can vary literally minute to minute.

Since Salute i have been falling asleep between 8 and 8.30 most nights as well as napping the majority of days between 10am and 2.30pm but i just cant shake the exhaustion.  Stress with staffing and postal issues caused by (mainly) the volcano adds a new dimension to the exhaustion as somedays i literally have so much chaos to sort out that going to sleep is a luxury.

At least here on the FOD i know i can say "sorry guys i feel sh**e right now i need to sleep, sorry i havent done X, Y & Z today i will do it tomorrow" and i know most people will understand.

I have found over the years that the medical profession is getting more understanding gradually and my current GP is very good, she keeps on board of any latest developments and i quite happily play "guinea pig"...lol!
: Re: M.E. ....What it means
: Scutatus May 21, 2010, 03:09:54 PM
:)  I'm glad you have found a good Doc. It isn't easy. Hope the Guinea Pig Trials pay off.

Hang in there, you do so well to keep on keeping on, with everything that you have to cope with, and of course we'll understand if things don't always quite go to schedule. Every new release, every new attendance at a trade show, every new post right here to your adoring public, is an achievment in itself. To hell with schedules! :D

So if you need to rest you go right on resting! We'll still be here after. :) I don't think I speak too out of turn if I use the Royal "We" here. Ahem.

Bless you Sally. :applause:
: Re: M.E. ....What it means
: sagunt September 07, 2010, 12:16:22 PM
Sally, Radio Scotland is running a segment now with the director of the Young ME Sufferers' Trust.  I'll send you a link to the interview and online resources offered in connection if you want.  PM or email.

This is as close as I'll be able to get you to it.  http://www.bbc.co.uk/programmes/b0079mr1

The dates of programmes are on the left.  It should be up as an archive (available for 1 week) starting today at 1pm.

a'best,

s
: Re: M.E. ....What it means
: gi6ers September 07, 2010, 03:03:31 PM
http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884

quite a small study though TBH...
: Re: M.E. ....What it means
: libertee September 07, 2010, 06:20:08 PM
http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884

quite a small study though TBH...

that link took me to a total of 3 videos, thanks Matt. 

Eric, I shall try and get to listen to the longer I-Player ones later when the kids are settled, thanks also.

An interesting point about the white bloodcells being damaged as every blood test that i have done routinely every few months since 1997 has shown that my white cells are damaged, also i have anti-bodies to Epstein-Barr at permanently quite high levels.
: Re: M.E. ....What it means
: RogerB September 07, 2010, 09:11:51 PM
I'll have to have a look at those vids when I get back to the UK (flying back tomorrow).
: Re: M.E. ....What it means
: libertee September 15, 2010, 10:21:51 PM
a few more reports that had slipped under my radar, worth reading Roger if you havent already seen them.  I also got referred/recommended to a new book http://www.amazon.co.uk/Overcoming-Chronic-Fatigue-Mary-Burgess/dp/184901132X/ref=cm_cr_pr_product_top

although this one is my bible...i have got an edition from 2000...perhaps i need a new one! http://www.amazon.co.uk/Thorsons-Health-Chronic-Syndrome-practical/dp/0007333552/ref=pd_sim_b_5

http://www.erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf

http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf
: Re: M.E. ....What it means
: RogerB September 16, 2010, 09:30:09 AM
Thanks, Sally.  Right now I'm fighting jetlag on top of it all...ugh.  I want to sleep at the right time.