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SkulduggeryGOLD Member
Pirate Pixie Crew Captain
8,428 posts
Location: Wales


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 that’s 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 people’s 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. It’s 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. (That’s 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

Feed me Chocolate!!! Feed me NOW!


pricklyleafSILVER Member
with added berries
1,365 posts
Location: Manchester, England (UK)


Posted:
Probably best to go and see your doctor, especially as its basically causing you to suffer from insomnia. If hes (or she) is a good doctor, then they should be able to offer you practical advice without drugs if you don't want them, or refer you to a sleep clinic, or someone more specialised.

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


SkulduggeryGOLD Member
Pirate Pixie Crew Captain
8,428 posts
Location: Wales


Posted:
I'm happy to say that the dream has subsided. I still get it occasionally but I'm so used to it now it doesn't bother me so much. I think there is a reason I'm having the dream, it took me a long time to figure it out. Something someone said to me the other day just set me thinking and it kind of made me realise why it was happening. At first I was trying to look at it too literally but now I can see an obtuse angle on it and see a different message in it.



...and now for something completely different......



Does anyone know if you can start up a keep fit class without any Phys/ed qualifications and or public liability insurance? I was thinking about setting up a 'Hoop yourself fitter' class. I was going to aim it at 20-60 year olds looking for a fun way to take some gentle-ish exercise to keep themselves in trim.



What worries me is if someone claimed to have got injured in the class. Where would I stand? What other problems can you see there be in doing a class like this. All advice and ideas welcome. At the moment its just a pie in the sky idea, so I want to work out pro's and con's of doing it before I go asking the local leisure centre and village hall owners if I can book time to use their facilities.

Feed me Chocolate!!! Feed me NOW!


Gayle......!SILVER Member
Pooh-Bah
2,444 posts
Location: Bristol !!!!!!, United Kingdom


Posted:
i would advise against it. You can get sued big time if you practice unsafe movement and someone gets injured. If you have no qualifications you get in trouble. You'll also get in trouble for using music without a license.

You need the qualification, your insurance and your PPL.

You can quite easily get qualified but it takes money and time. It took me a year to qualify but i can teach anything that comes under the banner of Keep Fit.

If you take a qualification - i would advise one that looks at movement, A+P, regulations and the like.

Go to https://www.keepfit.org.uk/
and take a look.

come talk to me about it!

Gayle.....!


SkulduggeryGOLD Member
Pirate Pixie Crew Captain
8,428 posts
Location: Wales


Posted:
Ok hun hug Thank you for the words of wisdom biggrin

Feed me Chocolate!!! Feed me NOW!


KupschSILVER Member
Member
163 posts
Location: glasgow, United Kingdom


Posted:
Hey skulduggery i see that you've been given a lot of fantastic advise, so im not going to jump on the bandwagon too. However, I have a nutrition degree and a lot of everyons suggestions are excellent eg wheat free, dairy free etc, pm me if you want information on diet changes, plans and where you can get good nutritional advise. im happy to help. (free of charge!hahaha!)

SkulduggeryGOLD Member
Pirate Pixie Crew Captain
8,428 posts
Location: Wales


Posted:
Ok a new problem I want a few suggestions on.... yep I know I'm full of them ubblol





I've been feeling really nauseous for ages now and in the last few days it has got worse. I used to be able to control the stomach churning feelings by drinking ginger tea but now that's not helping and I've been vomiting a fair bit.





I've been to see my GP, but quite frankly his advice left me annoyed. I know I get like this when my body is tired. It gets past the stage where it can be bothered to digest food so it gets rid of it by making me vomit. He told me that he could give me an anti-vomiting drug. I explained that I had tried that before and had a reaction to the drugs and asked if there was anything else I could try. He went all huffy and told me "You either accept the drugs or you don't. I'm not here to discuss it. I've been a Doctor for 30 years and I am telling you those are your options!"



I wasn't impressed, so I left. My Doctor and I don't have a very good relationship at the best of times. Sadly he is the head of the practice in a small village surgery and despite the fact you should (in theory) be able to change doctors if you want to, in reality it's not going to happen unless I register with another surgery somewhere else.



So.... do any of you know any home remedies other than ginger?

Feed me Chocolate!!! Feed me NOW!


NYCNYC
9,232 posts
Location: NYC, NY, USA


Posted:
hug

I've no help for the illness... but, since you seem to have some heath problems that require some help I'd really think about registering elsewhere. It might take a while but I think in the long term you really want to end up with someone who is compassionate. When you're sick it's even worse when you have to deal with emotional crap of having someone who is not sympathetic. I had a bad experience last winter with an idiotic clinic and only got better when I went to see a better doctor.

Even if you fix this short term problem, you should look into a long term solution.

hug hug and... oh yeah... hug

Well, shall we go?
Yes, let's go.
[They do not move.]


StoutBRONZE Member
Pooh-Bah
1,872 posts
Location: Canada


Posted:
What NYC said......

Maybe your doctor is a little to "set in his ways" to explore other treatment avenues. Medical treatment is a highly personal thing which requires a decent working relationship with your health care practitioner and if you have to travel,, then travel.
hug

BansheeCatBRONZE Member
veteran
1,247 posts
Location: lost, Canada


Posted:
I have found that the wrist bands that press on the meridian running down the inner side of the wrist really work well for nausea. Cheap, safe, help a lot of people with sea sickness, or morning sickness etc. Are they available where you are? Have you tried them? I could send ya some to try if you want !

But more importantly, you have to get at the root of things, support and nourish your body so that it does not get so tired and weak as to reject your food.

I agree with the others,finding a medical practitioner/ nutritionist you can really work with would be very important. Preferably one that can handle both mainstream medicines when necessary, yet has training and understanding in supportive alternative therapies, even just open to basic ones like nutrition and massage therapy. It is hard for you, particularly when ill, to put all the bits and pieces of information offered together into some kind of reasonable healing/health/ maintainance plan all by yourself. A good medical practitioner should help with that.

So, make that your next mission, find a new doctor!
good luck,and I hope you feel better soon!
hug

"God *was* my co-pilot, but then we crashed, and I had to eat him..."


misscorinthianSILVER Member
old hand
784 posts
Location: Bristol, United Kingdom


Posted:
Ravehead said something to me before about a tea/spice infusion to stop throwing up.....the only bit of it I can remember is cinnamon...maybe with ginger as well...?

XLenX

Devoted although mostly absent owner of the 1, the original... Asena


DrBooBRONZE Member
I invented the decaffinated coffee table.
453 posts
Location: Cornwall, United Kingdom


Posted:
I just want to second everyone else's sentiments: ditch your GP and get another one, and a second opinion. You don't have to put up with that c**p.

As for preventing nausea, nibbling ginger nut biscuits can be helpful (I had both salmonella and campylobacter at the same time last year...I'd have been lost without Tesco's organic ginger biccys), ditto for ginger ale. And peppermint.
Acupuncture is meant to be good for nausea.
I also remember milk of magnesia being good when I was a child....

Hope you're feeling better soon, hun.



hug

Boo x

I intend to live forever - so far, so good.

If it costs "a penny for your thoughts", but people give you their "two-pence worth", who is getting the extra penny?


SkulduggeryGOLD Member
Pirate Pixie Crew Captain
8,428 posts
Location: Wales


Posted:
Thanks for the advice. I forgot about pressure point bands. I have some somewhere. I'll give them a go. Thanks andrealee.

Ginger is indeed very good at helping with Nausea as is peppermint. They just don't seem to be strong enough at the moment.

You all say I should ditch my Doctor and you are probably right, but the times I need the doctor i'm usually so ill travelling distances to see them isn't an option. So having a GP in the village makes it so much easier.

Most of the time I deal with having M.E. on my own as the medical profession don't seem to have any ideas how to help me other than treat any added problems, such as eczyma, mouth ulcers, infections, etc that I suffer from when the M.E. is bad. I tried lots of their wacky weird treatments back in the 80's/90's and got tired of being their guinea pig a long time ago. The prospect of trying to finding a new GP and having to travel back and forth on buses to see them when I need them doesn't fill me with any sense of excitement or joy. As I hope in the near future to be moving out of the area, I think I'll reserve my energy and put up with the Doc I have.

I know you are right and that I should ideally find a Doctor that can help me and will listen to me, but I just don't have the energy to do it right now.

grouphug I'll let you know if the bands help.

Feed me Chocolate!!! Feed me NOW!


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