Notices 2004

To reply to a notice on the board, click the 'Email Webmaster' at end of each message and also place the word 'Notice' and date of the notice, as it appears next to the message, into the 'Subject' line. Thanks

25.6.04

Hi everybody,

What I thought was a worsening of the symptoms of my ME over the past 2/3 years has turned out to be late onset Diabetes. I wanted to warn people not to just assume that a worsening of symptoms is always down to the ME.

I would like to hear from anybody who suffers from ME and Diabetes because I had a very bad reaction to the medication I was prescribed for Diabetes . I have been prescribed some more but am very wary about taking it. The Health Professionals just brush the fact of my ME aside and are not taking it into consideration when treating me.

I really would appreciate some feedback.

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27.7.04 - SEE REPLY IN 'NOTICES 2005'

Can anyone let me know if they have had the same experience as me and how they coped with it. I have had M.E. for 12 years-severe, but since last December I have been having these "turns". I have been checked out by doctors, hospital etc. but I am still having them, even though I am on medication which has helped and they are not as severe. I still have them and it seems that I also have them at night too. For years since I've had M.E. I have also had fainting attacks, these seems to be getting worse and sometimes I feel so depressed with what's happening perhaps someone can share their experiences and feeling. I try very hard to keep laughing and trying to carry on as "normal" but it really gets me down at times. Thanking you

Email Webmaster

REPLY TO MESSAGE 27.7.04

"My wife Tanya has had M.E. for 16 years, the last 3 have been very severe. She's been unable to stand or sit up, unable to eat, and unable to tolerate light or sound. For the last two years she's been stuck on her left side and unable to roll over in bed because she blacks out. She has bad reactions to pretty much all chemicals and odours, as well as a few other medical conditions. She's had some horrendous experiences with doctors and medications too.

She feels very alone in her situation and asked me to check the 25% Group notice board to find out if anyone else in the world is going through the same thing. Just to know she's not alone in this would really help her" Tom Freebairn - South Australia.

REPLY TO MESSAGE 27.7.04

Hi there,

I just wanted to write to reassure you that you aren't alone. Other severe sufferers get fainting attacks, epileptic type seizures, etc.

Here are some things which have helped me :

Keep your blood sugar levels up. I can't always digest food, so have to keep a jar of runny honey on the bed to boost my sugar levels - particularly during the night. It's important to avoid going into a cold, shivery, shock state. Think of these sweet things like a medicine, and only use them when you have to. When you can eat, choose protein rich, easily digested food like eggs, and eat often. Chocolate is rich in protein too, and I find it very useful if I can't eat anything else.

Keep your salt levels up to avoid faints due to low blood pressure.

Keep your fluids up - drink water at room temperature or warmer. Only drink cold water if you are seriously hot and need to cool down quickly. You may need to use a commode in order to boost your fluids,

Keep your body heat even. In winter have the central heating on all the time. In summer, invest in a tower fan from Argos to keep you cool. Hot and cold drinks are the quickest way of changing your temperature. Make this a high priority for carers. If you go out, always take water, hot water bottle, blanket, gloves, etc.

Chinese ginger tea is wonderful for boosting the body when it's going into shock/getting cold. My carers keep a constant supply ready made in the fridge. To make it, place 15 slices of root ginger in a large saucepan of water and boil for 20-30 minutes. It will keep in the fridge for around a week - leave the sliced ginger in and it'll get stronger. This Chinese ginger tea enabled me to transform my quality of life from dire to bearable.

Avoid Tv, radio, fast music, bright flashing lights and noise. Ear plugs and dark glasses are helpful. See only one person at a time, and limit the length of visits by being firm with visitors. You may have to become more assertive or even aggressive in order to have these needs met - try not to feel guilty about it.

Aromatherapy oils are great. Rosemary boosts the blood pressure, and peppermint stimulates too, so they can help you to avoid passing out. Use them in emergencies only. You can get them mail order from ISO - phone 0131 662 5101.

Finally, to keep your spirits up, here are some little things I've found which helped me :

Go for a walk in your imagination
Find a "sounds of nature" tape and play it very quietly - imagine you're sitting beside that stream, or shoreline.
Drink Chinese green tea and chinese white tea and remember that with every mouthful, you are helping your body to fight illness and recover.

Keep a diary of all the nice things that happen and read it when you feel low.
Use the nicest nighties / pyjamas and bedlinen you can
Make a linen spray to scent your bed from a little vodka, a nice aromatherapy oil and a lot of water. You could make a body spray the same way.
I use perfume, or spray myself with rose or orange flower water to make me feel good.

String all the cards you get from loved ones on your wall
Buy nice boxes, or bags to keep your stuff in beside your bed
Make up a big frame filled with photos of people you love
Indulge yourself
Tell yourself "Every second of every minute of every day, the healing power in the universe is available for me to soak up, and I receive it now"

Indulge yourself as much as you can with attractive things. I use light, bright beautiful picnic sets when I eat, and pink and orange straws when I drink.
Make plans - I got books from the library housebound service even though I couldn't read them - I liked looking at the titles.

One day I was feeling blue, I made a list of everything blue I liked - butterflies, balloons, blue poppies, sparkling blue water etc... I felt much better after that!

I hope there are some things here that help.

Best wishes for improving fortunes

Kirsteen Niven (feel free to get in touch if you like - my details are in the contact list).

18.08.04

I am bed-ridden and hyper-sensitive to noise.

I would love to have a kind of acoustic hood to go over my head (obviously open at the front for breathing).

It must be light as my carer is 80 years old.

No acoustic engineer in our area could help. They all wanted to insulate the whole room.

Can anybody offer any tips as to where I could get such hood or how to make one so as to cope in particular with the fireworks in November?

I was put on tranquilisers and sleeping medication 2 years ago and sleep-inducing anti-depressants. Every 3 months the dose has to be increased and I am now taking a massive amount of as my body needs more and more of them.

Is there anyone out there with the same experience, or can someone offer tips on how to stop the trend or at least reduce it?

Thank you very much.

Replies C/O

Claire Morisse at:

clairemorisse@tiscali.co.uk

21.09.04 - Wanted - Portable Electric Bar Fire

Wanted: Portable electric bar fire, radiant heater, in good working order. Must be suitable to stand on floor. Top price paid.

If you can help

Contact: Christian Moore on: 01624 834681 (Please call between 1pm and 10pm only)

12.10.04 - WANTED RECLINING WHEELCHAIR

Does anyone know where I can buy a second hand reclining manual wheelchair? Please reply to 25% ME Group e-mail address.

Please Quote: Ref:BH/9.10.04

Email Webmaster

28.3.05 - Can you help?

Severe ME sufferer with dental and neck problems, would like to hear from others who have similar difficulties.

I am having treatment, but am often too weak and have had many antibiotics this year.

Contact via webmaster at following link: Email Webmaster

Please quote: - 28.3.05 - Can you help?