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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:I need a bit of help.

As some of you already know I have M.E. I've had the condition since I was 19 and am quite used to dealing with the symptoms it throws at me. Basically I suffer from the relapsing form of the condition. I can go for month feeling fine but then due to stress or an infection BAM! Its back. For about 6 years I stayed relatively healthy and only had minor relapses, which I contained and recovered quite fast from. I have found in the last year though that I'm suffering from so many relapses I'm find it hard not to slip into a "why me?" kind of attitude. I hate when I feel this way and it most definitely doesn't speed my recovery. I'm not telling you all this to get a lot of "oh poor you" replies. I think that would just make me wallow in my depression more ubblol What I'm looking for is some hints and tips on how to deal with some of my more annoying symptoms and ways to stay positive.

The most annoying symptom I have at the moment is twitching muscles. They twitch so much they end up with cramp. Does anyone know of ways to stop them twitching without resorting to some kind of muscle relaxing drug? I want to do as much as I can without drugs. I take painkillers to relieve the cramp pain but thats not curing the problem its just masking it.

Memory loss. I just can't remember anything at the moment. I feel like I have to write everything down lest I forget. My long-term memory is fine but my short-term memory is shot to pieces. Any tips on how to improve my recall of peoples names and words? I start sentences and then can't think of the word I need to finish it. People tell me their name and before they have finished their last name I can't remember the first one ubblol

I want to stay positive as I think it helps recover but at the moment I'm finding that hard. My mind won't stay still it zips about from one thing to the next without ever really thinking about any of it. Sustaining concentration in anything is getting harder and harder. Its getting me down. How can I get back control of my head?

Sleeping I can do but when I wake up I feel as if I haven't slept at all. Does anyone know how to make sleep more refreshing?

I don't intend this thread just to be about my M.E. and me and I don't intend it to be me fishing for hugs and pity. (Thats the last thing I want)
Please feel free to ask for advice and tips on problems you have. As a Community we are large and varied. The people out there must have some suggestions and help for most of the problems others of us face.

I wasn't sure where to place this thread, here or in the help forum so if I got it wrong I'm sorry. I chose this Social Discussion forum because I foresee people discussing the pros and cons of the help and tips people come up with.



Thank you in advance for anything you can suggest as solutions. hug


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_Clare_
_Clare_

Still wiggling
Location: Belfast
Member Since: 22nd Oct 2002
Total posts: 5967
Posted:hug anyways, because hugging is nice smile



Omega oil is apparently quite good for helping with your memory - maybe you could go to a healthfood store and get some capsules?



As for staying positive and happy... well, I find the only way to do that is to stay as busy and distracted as possible. I don't know how possible this is... but can you get out of the house and go on little missions to places?



Missions are great... plan them out. Maybe a short walk through the park, a trip to the cinema, even local touristy attractions you haven't been to in years. Keeping active might even help with the muscle cramping (and fresh air helps you to sleep) - I'm not sure though, could be horribly wrong smile



Bring someone with you if you're not confident going by yourself... but just keep trying one day at a time lady skully, and know that someday it will get better - and you have to be strong so that when that day comes you will enjoy it to its full.



hug

tongue


Getting to the other side smile

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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Thank you Claire hug

You are right about the missions. I find setting myself small goals helps a lot. I have to take care not to set goals that I can't attain though because that can just make you depressed when you fail. I think you also have to learn to be happy at just attaining the small goals and not pooh poohing what you have achieved because everyone else could do it with ease in one tenth of the time.

hug


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fluffy napalm fairy
fluffy napalm fairy

Carpal \'Tunnel
Location: Brum / Dorset / Fairy Land
Member Since: 12th Dec 2001
Total posts: 3638
Posted:Trying to focus on one thing at a time really helps memory and concentration. I know it is a very obvious comment but many people forget they can't do everything at once and end up not being able to do anything. I don't have any experience with M.E but I do with memory and concentration problems. Here are a few things that have helped me and others close to me for various reasons:

When remembering people's names, say them aloud as soon as you are introduced. Make a joke of it if it helps! " I'm Ros etc....." can easily be followed with "aha, hello Ros..." which will help cement it in your mind. Repetition is definately the key with remembering facts such as names.

If you are finding it hard to remember a lot of things (such as appointments, plans etc) Stick to one, then two and slowly build up. If this means missing out on some stuff in the meantime then it'll be annoying but slowly you will be able to tackle much more, more effectively and successfully.

Don't make huge long mental or physical lists as they will become confusing/overwhelming. Start with just the most important/essential things and take a break win between completing them.

Once one thing is achieved, make a note of realizing the achievement and mentlally and physically remove it from your plans/list.

Concentration is relative to distraction. If you are trying to juggle a lot of things then there are potentially a lot of distractions. Allocate time in which to tackle each thing on it's own. Try to always take a break BEFORE you find yourself becoming distracted. Go outside if you can. Short breaks, often, are by far most productive. Then apply yourself again. You will reach your goal without becoming frustrated with having been distracted.

Again, once the goal is reached, make a conscious note of it and take a break before moving on.

I hope you find some of this useful smile

And have one of these hug cos I like giving them biggrin


Geologists do it in the dirt................ spank

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fluffy napalm fairy
fluffy napalm fairy

Carpal \'Tunnel
Location: Brum / Dorset / Fairy Land
Member Since: 12th Dec 2001
Total posts: 3638
Posted:One other thing that has to do with HoP and distractions........ rolleyes

Turn it off when you are applying yourself to any task. When you have completed the task, or are in a break, have a 10 minute play and relax/reward yourself. But then turn it off again. I know this sounds uber-silly but I htink a lot of people are very very easily distracted by this wonderland and that's not a good thing. If you use it in between productive periods the overall feeling is one of 'wow look how much I've achieved' not 'Oh bugger I've been procrastinating again.......'.

(NB - this may not apply to you at all, but it does to me so I thought it might help. Back to revision - see you all in an hour ubblol )


Geologists do it in the dirt................ spank

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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Thanks Ros.... those are good tips. hug

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Birgit
Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh
Member Since: 27th Jan 2005
Total posts: 4145
Posted:Hey Skully!

Sorry I don't know much about ME, just about the "why me" attitude which I've had often enough about my own "unseen disability". The answer to "why me?" is simply "because that's the way it is and you can't change it, so make the most of it". Which is what you seem to be doing, and you're not one of those people who constantly moan about their problems, so I wish you best of luck. I know a very nice girl here in Edinburgh who has ME, too, if you want I can find out her phone no or email so maybe you can give each other some advice?

The only thing I can recommend are hot baths just before going to sleep, maybe with some herbal stuff in them, cause that's both relaxing and (for me) makes the sleep more effective.

:trieshardnotto hug skully:


"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)

Owner of Dragosani's left half

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ben-ja-men
ben-ja-men

just lost .... evil init
Location: Adelaide
Member Since: 12th Jun 2003
Total posts: 2474
Posted:for the cramps the way ive had it explained to me is that the muscles are basically in need of oxygen so exercise is good and so is massage as both increase blood flow and oxygen levels to the muscles. actupuncture can also be good working on a similar theory to massage but being highly local and working by stimulating the nervous system to get the desired result.

for the memory loss id suggest talking to a dr about what salts etc you need in your diet for memory and where your body can get them naturally.

As for names a visual image about the persons name ie some sort of association so if someones name is john visualise a toilet on their head, or if their name is micheal visualise them taking the piss out of micheal jackson etc etc

with the sleep being refreshing make sure your not oversleeping set your alarm (hehe says he who gets up after noon each day)

for energy in general id suggest doing a detox, lexy and i are doing one at the moment and even though it has some adverse inital reaction im feeling really really energised at the moment. the foods a bit crap and not being able to eat chocolate is horrible but im semi considering eating healthly all the time after i finish just because it feels really good, its hard to explain even with the adverse affects they dont bother me so much because i know how good it is for me.


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The Tea Fairy
The Tea Fairy

old hand
Location: Behind you...
Member Since: 2nd Jul 2004
Total posts: 853
Posted:hug
I don't have experience of ME, but my friend's mum used to have the relapsing kind so I know it's very hard, her mum used to get very depressed and irritable with her kids when she was having a bad week.

I don't know how easy it would be for you to do this, but have you tried yoga/meditation exercises? OK, I'm biased towards Yoga, but it does help with focus, concentration and memory as well as more general physical control and body-awareness.

There are many gentle exercises that condition the muscles and nerves, which should help with the twitches and cramps. Meditation and deep relaxation exercises have massive physical and mental health benefits too. The problem with this approach is that it takes time to yield results, and results depend on the amount of time and effort you can put into it.

Even 10 - 20mins a day of deep, focused relaxation should have a positive impact on the rest of life. It's all about making a bit of time just for the body and mind to let go of everything and reset.

I can PM you steps to go through in your mind to get to a deep level of relaxation if you would like to try and see if it helps at all. It will definitely help you sleep deeper! If you are interested in how other aspects of Yoga may help, your local Yoga instructor (if properly trained) should know exactly what exercises and techniques would benefit your symptoms.

hug PM about deep relaxation on it's way soon.


Idolized by Aurinoko

Take me disappearing through the smoke rings of my mind....

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Anna-pananna
Anna-pananna

Thinking...
Location: Oxford
Member Since: 13th Sep 2003
Total posts: 179
Posted:SLEEP: I have found lavender oil to be really helful in quietening my mind before bed- especially when there's lots of buzzy thoughts flying round my head...helps me to sleep and wake up better.

CONCENTRATION: Making sure you drink lots and lots of water can help with concentration because your brain's well hydrated.

Not sure about the twitching muscles thing, but I should think massage would help. My mum who's a bit of an amateur herbalist thinks that there must be a herbal remedy that would help with it and suggests you speak to a trained herbalist. Have you tried homeopathy? There's a discussion going on about that somewhere else I believe!

A couple of my friends have M.E, but with different symptoms from you. One of them constantly feels tired, headachey, and nauseous. He gave up wheat for a while, but found this made no difference. He also tried cold water treatment- basically he'd have a cold shower every morning (for 30 secs-1 min, after a warm shower) and go outside and spin staff whenever it rained! He did find that this helped, but then his symptoms were different....perhaps it would help with the twitching muscles though, as it improves circulation. Since getting ME, my other friend has tried to plan his daily routine very carefully- he's a guitar player so spends lots of time practising, but within a carefully worked out schedule which includes periods of physical excercise, rest, eating, playing guitar, seeing people, etc. He's found this to be helpful, because it keeps him motivated whilst not exhausting himself.

Apart from the M.E itself, is there anything in your life which is troubling you in particular? Perhaps this is contributing to your symptoms, and if you can identify and deal with it you may be able to overcome some of your symptoms a bit?

Look after yourself. hug
A xxx


Practice as if your hair was on fire...

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onewheeldave
Carpal \'Tunnel
Location: sheffield
Member Since: 28th Aug 2002
Total posts: 3252
Posted:To remember names, a good method is, when first encountering them, incorporate their name into a vivid and bizarre mental scene; the more outrageous (and memorable) it is, the better.

For example, with 'Matt', create an image of coming home,opening the door, and seeing Matt laying on the floor, where you proceed to use him as a door-mat, walking over him and wiping your feet on him.

Ideally work some distinctive facial or personality feature in there too, so you can connect the name to the person.

For example, you may meet a Billy, and notice that he has a goatee beard, so there's obviously lots of scope for working him into some image involving a goat.

--------------------

Writing things down is good- I come across as quite focused and organised, but, in reality, I have many of the same problems you do with memory etc.

For many years I just couldn't be organised and it had a bad effect on my life, particularly when it came to getting stuff done etc.

Writing down what you need to be doing and having some kind of schedule is really helpful, and, if you're serious about getting stuff done, is essential.

Try to focus on taking it seriously ie, don't just scrawl stuff on small bits of paper that can get lost- buy a file and some A4 sheets.

Don't feel that writing stuff down is a sign of weakness; basically, as far as I can see, most people who appear to be organised and focused are so precisely because they write stuff down.

Written by: Skulduggery


My mind won't stay still it zips about from one thing to the next without ever really thinking about any of it. Sustaining concentration in anything is getting harder and harder. Its getting me down. How can I get back control of my head?




This could be a good time to start regular meditation practice.

I've just posted a new thread entitled 'Christian Meditation' with a quote of a very simple meditation practice.

You don't have to be christian to use it (I'm not for example), but it's a pretty standard form of 'mantra' meditation that is used in many differing traditions; it's here: -

http://www.homeofpoi.com/ubbthreads/show...fpart=&vc=1


"You can't outrun Death forever.
But you can make the Bastard work for it."

--MAJOR KORGO KORGAR,
"Last of The Lancers"
AFC 32


Educate your self in the Hazards of Fire Breathing STAY SAFE!

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Pooh-Bah
Location: Bristol
Member Since: 6th Jan 2005
Total posts: 1785
Posted:Although i don't have ME the docs say what i have is very similar and i found accupuncture really good for sorting out muscles that keep twitching or spasming (sp?). The acupunturist that i go to was a GP who had trained as an accupuncturist and its helped lot. he stuck the needles into the problematic muscles and it felt really wierd, like a 'twang' followed by imense relief. Obviously its something that you need to have regularly. I'm having it once or twice a fortnight and it seems to really help.

One thing that i found really helped with concentration was cutting out yeast and doing a course of treatment for candida which is basically just a pro-biotic treatment similar to actimel and those other dairy based bacterial drinks. I used to get really bad 'head-fog' where i couldn't think or read for more than a few minutes at a time. Thinking seemed to physically drain me, where as now i'm a lot more alert and i can actually concentrate on things a lot more.

One thing that my doctors always say to me but i'm useless at doing is, if you are having a good day, don't push yourself too hard and do too much, try and only do 80% of what you can do so that your body has a chance to work on your recovery. I'm useless at this, i had a good day yesterday and spent hours spining and today i haven't been able to get out of bed!

I wish i could give you some sleep advice but i'm having the same problem at the moment. If i find anything that works i'll let you know!

let me know of you want to know anymore about the yeast/candida thing and i'll get the info off my mum about it.

ubbrollsmile stay positive biggrin


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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Thanks everyone for the advice.

I feel at least today by posting this up I have achieved something. So I'm glad I did it. I wasn't sure about it and wavered for a long time over the continue button.

I've had a look in the local paper (for local people) and there are meditation classes in the local community centre. I've decided I'll go along and have a look and maybe join.
That way I
:-have to remember to go.....which will hopefully exercise my memory.
:-get out of the house and meet new people..... which should help me to stop turning into Eeyore and be a test of my memory as to if I can remember any of their names.
:-give me a goal to attain of getting there once a week. (yes I know for most people a once a week commitment to being somewhere is no big deal but trust me for me right now it is)


The massage idea maybe good for some but I've found that muscle massage for some reason makes everything 10 times worse. I think its because it releases too many toxins into the blood stream at once and my body can't cope with it. I've found after massage the muscle twitching gets worse. I try to exercise as much as my body is able so that I don't lose muscle. Rest is important but too much is bad.

I have Fatigue all the time but to be honest I've had it so long I kind of don't notice it that much any more because thats just how I normally am. I know the answer to "why me?" is "thats just the way it is" but sometimes it doesn't stop you asking it ubblol

I want to add to all this that having M.E. hasn't all been doom and gloom for me. Having M.E. has taught me a huge number of valuable lessons. I wouldn't be who I am today if I had never have had it and the honest truth is I like myself much more now that I did before I got sick. Illness doesn't have to always be a bad thing. There are many positive things to take and learn from it. So I guess all in all I'm kind of glad I got it(maybe glads not the right word but I can't think of a better one right now). If I could have learned the lessons another more healthy way I guess I would swap for that but if its a choice between not learning them or having M.E. I'd have to say, knowing what I know now, I'd opt for the M.E.

grouphug Thank you everyone


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Birgit
Birgit

had her carpal tunnel surgery already thanks v much
Location: Edinburgh
Member Since: 27th Jan 2005
Total posts: 4145
Posted:Written by: Skulduggery

I know the answer to "why me?" is "thats just the way it is" but sometimes it doesn't stop you asking it ubblol




I didn't mean to sound patronising there redface sorry!! I completely agree with the "good sides" of being sick and getting taught lessons about one-self and life etc, though personally I think I'd go for the being healthy instead if I had the choice ubblol


"vices are like genitals - most are ugly to behold, and yet we find that our own are dear to us."
(G.W. Dahlquist)

Owner of Dragosani's left half

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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Written by: Birgit


I didn't mean to sound patronising there redface sorry!! I completely agree with the "good sides" of being sick and getting taught lessons about one-self and life etc, though personally I think I'd go for the being healthy instead if I had the choice ubblol



I know you weren't trying to be patronising hun. I'm sorry if thats how it looked when I replied. Its good to be reminded sometimes when you feel low that moaning about it isn't going to change it. hug Thank you for reminding me!


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Pooh-Bah
Location: Bristol
Member Since: 6th Jan 2005
Total posts: 1785
Posted:skully, i was wondering if you have tried the graded exercise programs and pacing as suggested by the website that you linked to.

My doctor has suggested it for me and it would be nice to know if anyone had tried it and how it worked.

Hope you're feeling a bit better today ubbrollsmile hug


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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:I've done a form of it, but for me it was not really any good. It went against all my normal behaviour.... anyone that knows me knows I'm quite an impulsive person and I found the structure of it all quite depressing. I'm not the greatest at sticking to any kind of plan. If you are an organised person and like regimes I can see how it might help, but for me it just re-enforced the idea of me being sick and how depressing that was. I did it when I first got M.E. mind, and my out look on life has utterly changed since then, so maybe if I tried it again I wouldn't find it so depressing. I've learned to self regulate my energy quite well but my problems start when I become stressed out or if I catch some other illness like the flu or a cold. It just triggers off a downward spiral, where my body goes back to being a pain in the butt and refusing to work correctly.

My brother, who also has M.E., chased so many promised 'cures' and was let down by all of them. He tried every fad and latest craze reported and joined all the support groups. None of it did him any good. I tried a few 'cures' but very quickly came to realise that most of them were a crock of sh*t. I also found the support groups no help because they were all full of depressed people bringing each other down.

I've found the biggest help to me and my condition was just to finally accept that this isn't something that can be cured or will go away. I feel it will always be there and that its just a part of who I am. Like I have blue/grey eyes and funny shaped toes. Once I accepted it and just got round to learning how to live with it, and still have fun in my life, things got a whole lot better.

This latest relapse is, I think, the first time since I accepted its just part of me that I've started getting depressed about having it. Thats why I asked for some ideas. Depression is way worse that having M.E. and I don't want to go there again.

My suggestion to you, which you might find frightening right now, is embrace the condition and accept that this maybe just who you are at this time. I'm not suggesting to you that it will never go away because in your case it may very well do. I just think you have to accept who and how you are on a daily basis. Try not to look too far into the future because its pointless and was usually what triggered me off into bouts of depression. No one, healthy or otherwise knows what will happen to them tomorrow so don't worry about it and live for the moment. If today you wake up and find you can only lay in bed and listen to music, pick some music you love and revel in it! Don't worry about if you will still be stuck in bed tomorrow or the day after. Do whatever you can do in each day and make sure you enjoy it.

hug


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Nate
Nate

Groovy ga watashi no namae desu!
Location: Oxford, Oxfordshire, England
Member Since: 5th Aug 2004
Total posts: 1530
Posted:my dad has m.e he deals with it by doing alot of the above

my mum's is rather spiritual(the only way i can think of putting it right now) and is open minded to all religions etc

she does meditations at full moon meatings, and helps alot of people there who have m.e deal with it through meditation, when she's around i shal;l ask her how to deal with some of the things that have come up here

back to my dad, lol, he meditates when he feels himself getting more fatigue, so i guess it works whenever you feel the need for something to lift you in that way

also try to eat as much fruit as you can, just to give you that extra boost, especially in the mornings, fruit smoothies are always good

hope this has helped


I like Languages.

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quiet
quiet

analytic
Location: bristol
Member Since: 15th Sep 2004
Total posts: 503
Posted:as far as depression goes, cognitive behavioural therapy can and does work . . .

ture na sig

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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Ok I have another problem you might be able to help me with. For the last 3 nights I've been woken up several times by the same recuring nightmare. Does anyone have any ideas how to get rid of it? Its a bit gruesome so I won't recount it here for fear of upsetting people but it ends with me sitting bolt up right shouting the same thing out loud. Its set in the village I live in but I don't know any of the other people in it so its not like its me working through things as I sleep to do with my own life.... well not in an obvious way. Its getting so I don't really want to fall asleep.

Any ideas on how to get rid of it?


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polarity
polarity

veteran
Location: on the wrong planet
Member Since: 16th May 2005
Total posts: 1228
Posted:Hmmm, you either need to find out what real life stress is stimulating the dreams, and work around it (or just acknowledge something that you're hiding from), or learn lucid dreaming so you can take control of what's going on. Unfortunately that means doing something repeatedly all day, so you get used to doing it all the time, like looking at your watch to check that the numbers are in the right place. When the numbers aren't in the right place then you're dreaming, you realise it, and can do what you want.

I've got the same problem doing anything that's in a regular pattern. When I can't concentrate (most of the time), I'll try and make myself eat some proper food with plenty of carbohydrate. The energy seems to help. It's not easy, as eating meals is something else I'm supposed to do regularly, and I completely forget some days.

I'm not going to say anything about neurological conditions, unless specifically asked. I don't want to end up looking more opinionated than I already do:(


You aren't thinking or really existing unless you're willing to risk even your own sanity in the judgment of your existence.

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pricklyleaf
pricklyleaf

with added berries
Location: Manchester
Member Since: 7th Mar 2005
Total posts: 1365
Posted:firstly the nightmare thing, I have been known to have very strange and urgh! don't want to say the most recent and disturbing one (cringe). But the thing about dreams is they are your unconsciousness (sp?) making sense of the world around you, which I guess you already know, even if its in a way you don't understand. If the people are faceless,you can't recognise them, its usually a because of insecurity and anxiety.

I'd say try reading a book when you go to bed, something that you can really get into, and than concentrtae on that when goign to sleep (but having said that, depending on the book you might still have nightmares, but at least different ones!). The more you worry about the dream, the more you'll engrain it into your mind and the more likley you are to have it. Maybe try having something incredably familiar and comforting close by that you'll instantly recognise when you wake up to help you get over the, was I dreaming or is it real phase of waking up.

About the ME, my flatmate, friend and uncle have it, and all of them have found cutiing wheat out of their diet helpful, maybe that would make a difference, and a good diet is essentail. I don' really know much more about it than that I'm afraid but I do have a lot of the short term memory experience as I am dyslexic (only just found out).

In fact, thanks for all the learning names tips guys, as I find this a huge problem. It might be helpful to work out how you recognise people. I recognise people by their hair,which is a big problem as most men have the same hair, and women even, so if you recognise people in this way too, try and force yourself to focus on another feature as well.

Also invest in a really nice filofax diary type thing that is really nice to make you want to use it, you can get 'to do' pages with little tick boxes which are great, you can put the smallest things on it and then tick it off and its a great morale booster, I even write things in that I've already done to make me feel like I've achieved something.

good luck and sweet dreams! hug


Live like there is no tomorrow,
dance like nobody is watching
and hula hoop like wiggling will save the world.

What lies behind us and what lies before us are tiny matters compared to what lies within us.

Ralph Waldo Emerson

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Pooh-Bah
Location: Bristol
Member Since: 6th Jan 2005
Total posts: 1785
Posted:Written by: Skulduggery

I've done a form of it, but for me it was not really any good. It went against all my normal behaviour.... anyone that knows me knows I'm quite an impulsive person and I found the structure of it all quite depressing. I'm not the greatest at sticking to any kind of plan. If you are an organised person and like regimes I can see how it might help, but for me it just re-enforced the idea of me being sick and how depressing that was.



You managed to put into words exactly what i have been trying to say to my doctors/physios/consultants!! Everytime they talk to me about pacing and graded exercise programs my mind goes all wha?!? I couldn't imagine being able to structure my day that much and monitoring every single thing that i do. They just keep saying i'm stubborn and don't want to get better! ubbloco I'm glad i'm not the only one who thinks that its would just be depressing. My doctors have a great way of making me feel like its my fault that i'm still ill because i don't want to do this whole oraganised/structured thing.

*tries not to get started ranting about doctores!*

I just take each day as it comes and if i'm feel like i can do something, i do it, rather than not doing it incase i make things worse for the next day. I don't think there is any point wasting my life waiting to get better, i'm just embracing life and doing everything i can to enjoy it!

Thanks loads for all your thoughts on it hug

I wish i could offer advice on the dream thing but my way of dealing with bad dreams normally involves a spliff which tends to help but i obviously wouldn't encourage it!! rolleyes


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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Pricklyleaf you need a new name hug You are far from prickly

Thank you for all the advice. I already have cut out wheat from my diet because I'm intolerant to it and did find that it made a difference to some symptoms, mainly the headaches and stomach problems. I'm thinking about cutting out dairy products too, because if I eat a lot of cheese or drink milk they make me feel fuzzy headed and cause me to get pain in my sinuses.

Polarity wave I don't think I've said a proper hello to you yet...... so ..... welcome to HoP.

Thank you also for your ideas. I really can't figure out what this dream has to do with whats going on in my life. I just find it very disturbing. The people in it are not people I recognise and I end up feeling like I'm getting nowhere fast with any of them. I've tried to guide the dream off in other directions but they just pull back to the same end and there I am again awake and yelling out the same words. Its very odd.

I'm off to find a good book and see if I can trick these people into finishing the dream my way.

hug Sleep well all.


Feed me Chocolate!!! Feed me NOW!

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polarity
polarity

veteran
Location: on the wrong planet
Member Since: 16th May 2005
Total posts: 1228
Posted:I tried the wheat free thing for 6 months (gluten and casein from milk actually), and it can take up to 3 months for it to be fully flushed out of your system. It takes a lot of effort, as they put wheat products in absolutely everything, and don't always label them clearly.

For me the effects were pretty staggering for the three weeks after I was completely clean. After this your body becomes more sensitive, so even the tiniest amounts of wheat can have you feeling rap again, and it gets harder to stay clean. Even the traces of wheat in shampoo can set you back.

Gluten and dairy free is supposed to be very effective for autistics, but the chemicals they produce in the body are very addictive, so it's agony giving them up. I had migranes and nausea for the first few weeks after stopping, and had cravings for cheese and ice cream throughout. I had to give up in the end as the food was disgusting, b|oody expensive, and I was dying for a pint.

The definitive book on GF/CF (gluten and casein free) diet is 'A User Guide to the GF/CF Diet for Autism, Asperger Syndrome and AD/HD (Jessia Kingsley Publishers, 2002)'.

I'm not sure if what applies to autism applies to other neurological conditions, though they are closely related.

I think the food allergies may be a form of MCS.

Oh rap, now I've gone and done what I didn't want to. Time to go and do an introduction I guess, so I can explain why I'm so wierd.


You aren't thinking or really existing unless you're willing to risk even your own sanity in the judgment of your existence.

Green peppers, lime pickle and whole-grain mustard = best sandwich filling.

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Anna-pananna
Anna-pananna

Thinking...
Location: Oxford
Member Since: 13th Sep 2003
Total posts: 179
Posted:Hmm, I reckon Harry Potter is a good effortless read, where you can get lost in the story and take your mind off other things (although some of it can get a bit scary!)...and children's books in general...aah what about Jaqueline Wilson books (oh the memories, I loved her stories)!
Also, I wonder if falling asleep with some soothing music would help?
I used to get recurring nightmares, but haven't had them for years now, so I'm not really sure how to get rid of them.
Probably not good to watch a computer screen just before you go to bed either! It seems to frazzel up my mind a bit and then I can't sleep properly and get strange dreams...


Practice as if your hair was on fire...

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.:star:.
.:star:.

Pooh-Bah
Location: Bristol
Member Since: 6th Jan 2005
Total posts: 1785
Posted:skully..have you tried cutting out yeast? I'm not sure if you saw my first post in this thread, we seem to be posting at almost the same time! I found it helped LOADS!!

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pricklyleaf
pricklyleaf

with added berries
Location: Manchester
Member Since: 7th Mar 2005
Total posts: 1365
Posted:offtopic

OK have changed my title!, but not my name I am named after a bush with prickly leaves.


If you liked Crouching tiger then you will love Across the nightingale floor by Lean Hearn, I'm currently reading the sequel, Grass for his pillow, they're great books to loose yourself in. biggrin


Live like there is no tomorrow,
dance like nobody is watching
and hula hoop like wiggling will save the world.

What lies behind us and what lies before us are tiny matters compared to what lies within us.

Ralph Waldo Emerson

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polarity
polarity

veteran
Location: on the wrong planet
Member Since: 16th May 2005
Total posts: 1228
Posted:Terry Pratchett's b|oody good, if you like witches, wizards, fairy folk etc. all mixed up in a twisted reality parallel to our own. Oh, and the humour goes way deep, you can read his books several times over and still miss a load wink

Just finished Hat Full of Sky, the 30th in the Discworld series, and they just keep getting better.

I'm saving The Battle Royale novel for a special occasion smile

Oya-sumi everyone!


You aren't thinking or really existing unless you're willing to risk even your own sanity in the judgment of your existence.

Green peppers, lime pickle and whole-grain mustard = best sandwich filling.

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Sethis
Sethis

Pooh-Bah
Location: York University
Member Since: 16th May 2005
Total posts: 1762
Posted:Like when you want to INDUCE nightmares??
tongue

Music is good, anything quiet and soothing. Coldplay is good, but your tastes might run in different directions. Try making a CD with a buch of your favourite "gentle" tracks on it so you don't get woken up by any "noisy" ones.

Books are also good, Terry Pratchett is one of the best, but whatever takes your fancy.

Have you tried having a bath or shower just before you go to bed, with nice oils and stuff? My mother says that helps her loads. Also you can get bean bag things to go under your neck when you sleep. You microwave them to make them warm, and they smell of lavender. Good for sore necks, backs and blocked noses but could help with the relaxing ambience.

All I can think of at the mo' and I really hope everyone's suggestions helps.


After much consideration, I find that the view is worth the asphyxiation.
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I may disagree with what you have to say, but I will defend to the death your right to say it.

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Skulduggery
Skulduggery

Pirate Pixie Crew Captain
Location: Wales
Member Since: 12th Aug 2004
Total posts: 8428
Posted:Ok this dream isn't going away in a hurry. I'm sleeping so little now I'm starting to hallucinate. I've tried discribing the dream in detail to people in the hope that will break the hold it has on my head but that didn't work. I've tried reading, listening to music, meditating, taking a warm bath, Lavender, inducing different things to happen in the dream........ in short I've tried all the suggestions and nothing has worked. HELP! Before I start believing the pixies are real and that I can fly.

Feed me Chocolate!!! Feed me NOW!

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