Author Topic: M.E. ....What it means  (Read 29209 times)

Offline libertee

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M.E. ....What it means
« on: 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 :)
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline libertee

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Re: M.E. ....What it means
« Reply #1 on: 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?

A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline Kradlo

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Re: M.E. ....What it means
« Reply #2 on: 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.

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Re: M.E. ....What it means
« Reply #3 on: 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?

Offline Thantos

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Re: M.E. ....What it means
« Reply #4 on: 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.

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Re: M.E. ....What it means
« Reply #5 on: 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.

Offline weareblind

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Re: M.E. ....What it means
« Reply #6 on: February 09, 2009, 09:39:42 AM »
My best wishes too, Sally. What a terrible thing... some cure at the horizon?
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Offline Hasslefriesian

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Re: M.E. ....What it means
« Reply #7 on: February 09, 2009, 09:43:47 AM »
No. None.
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Offline weareblind

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Re: M.E. ....What it means
« Reply #8 on: February 09, 2009, 09:45:51 AM »
No. None.
:blub:
Carry on - my congratulations for your will.
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Offline libertee

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Re: M.E. ....What it means
« Reply #9 on: 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.
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline gi6ers

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Re: M.E. ....What it means
« Reply #10 on: February 09, 2009, 11:20:51 AM »
 :grrr:

Offline Avicenna

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Re: M.E. ....What it means
« Reply #11 on: February 09, 2009, 12:46:51 PM »
 :whaaa:
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Offline weareblind

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Re: M.E. ....What it means
« Reply #12 on: 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?
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Offline mcfonz

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Re: M.E. ....What it means
« Reply #13 on: 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)
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Offline grekwood

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Re: M.E. ....What it means
« Reply #14 on: February 09, 2009, 01:46:03 PM »
  :( some people are just nasty  :shrug:

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Re: M.E. ....What it means
« Reply #15 on: 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.

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Re: M.E. ....What it means
« Reply #16 on: 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.
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Offline libertee

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Re: M.E. ....What it means
« Reply #17 on: 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
A bank is a place where they lend you an umbrella in fair weather & ask for it back when it starts to rain. 

most mornings i wake up grumpy.   sometimes i just let him sleep.

my life consists of brief snatched moments of living my life hidden deep among chaos, confusion& the  going crazy, every night i go to sleep filled with hope & enthusiasm for the new day coming.  then i wake up & think "here I go again" & just aim to survive.

Offline RogerB

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Re: M.E. ....What it means
« Reply #18 on: 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:

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Re: M.E. ....What it means
« Reply #19 on: 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

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Re: M.E. ....What it means
« Reply #20 on: 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
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Re: M.E. ....What it means
« Reply #21 on: 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:
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Re: M.E. ....What it means
« Reply #22 on: 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.

Offline lizcam

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Re: M.E. ....What it means
« Reply #23 on: 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.

Offline DRAGON

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Re: M.E. ....What it means
« Reply #24 on: 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:::
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