Sensitivities
When your body is so sensitive to everything even the slightest stimulant can seem unbearable. Sometimes it is impossible to cut these out of your life completely; but you can cut down on them
Light Sensitivity
It is advisable to use a combination of the following tips. You may still need dark glasses, even in a darkened room.
Noise Sensitivity
Noise sensitivity can be very hard to live with because even the slightest noise like the rain or someone talking in another room, can be too much. It is often hard to cut out all noise, especially if it is coming from outside; but there are ways to reduce the problem.
If you can cope with a little soft music, you can put it on to block out surrounding noise; but listening takes energy so try and have periods of complete silent rest. It is an idea to use headphones because they contain the sound, making it more confined. Try using earphones; but just in one ear because it reduces the amount of stimulation you receive.
Touch Sensitivity
This is a very difficult symptom to live with and there is little that can be done. The main approach is to reduce contact with the affected areas.
Smell or Chemical Sensitivity
Sensitivity to smell can be very hard to live with as it is hard to cut out all smells, whether they are from the garden or come in on people’s clothing.
Make sure people who come into the house use non-scented products like those made by Simple or Avon. Ask them not to wear perfume or aftershave. This can be difficult if you have lots of people coming to the house e.g. carers but try to explain the problem to them.
An air purifier can help with allergies, including hay fever and also remove smells. They are available from Kelkoo and Argos.
Keep doors and windows shut to keep smells out of the person’s room and in the room they are coming from. Open the windows within the room to air the smell out before opening the door and allowing the smell to penetrate the rest of the house.
Keep the kitchen door closed to trap cooking smells and always keep lids on pans. Have a window open to extract the smell. Try to cook things that cook quickly and don’t give out a strong smell.
Wash new clothes and bedding before using to remove the chemical smells. Lakeland do a Wash-It Laundry ball. This is a washing ball for the washing machine, which cleans without using a detergent.
There are a number of shops which now stock eco-friendly and chemical free products, great for people with sensitivities.
The Healthy House sell products which are good for people with smell, chemical, electrical sensitivities, S.A.D, allergies, asthma and eczema, including a range of cleaning products which don’t smell, air purifiers and non-smelling. www.healthy-house.co.uk
Alternatively try Ecover cleaning products, wash powder, washing up liquid etc and E-cloths with water to clean glass/mirrors. Available from some leading supermarkets.
Bio-D cleaning products are chemical free, Faith in Nature Shampoos and Jasons toothpaste, face cream etc, all available from http://www.honestycosmetics.co.uk
Non perfumed deodorants without chemicals can be found at health shops and Lush www.lush.co.uk
Green People have a range of products. www.greenpeople.co.uk
Marks and Spencer’s have also brought out a natural range. www.marksandspencer.com
Natural odour free paints can be bought from www.eco-paints.co.uk
Light Sensitivity
It is advisable to use a combination of the following tips. You may still need dark glasses, even in a darkened room.
- Thick curtains with blackout linings
- Blinds – Venetian ones are particularly good for increasing or decreasing the amount of light. Some people have found the cheaper ones from China can have a strong chemical smell, so this is worth considering when buying. Alternatively stick opaque paper over the windows.
- Dark glasses – these can be normal sunglasses; but many people have a problem with light coming in round the sides – a solution is wraparounds or specially designed sunglasses from SolarShield
- You can also have blue tinted glasses, like the ones used for dyslexics. Irlen UK 0207 736 5752 www.irlenuk.com. Also available from opticians.
- Eye masks - these are material masks with a dark lining, which are attached by elastic round your head and are good to help you sleep or just to cut out all light when resting. Some people find the elastic round their head hard to get used to; but after a while the elastic relaxes a bit and it feels less tight.
- Using a torch – this may be easier on the eyes than normal room light and allows you to look at things in more detail e.g. cards and letters etc.
- If you can cope with a small amount of light then you could have a dimmer switch installed, so you can gradually increase/decrease the light in a room.
- Soft lights like lava lamps in pale colours can be nice to watch if you can cope with the movement. If not place them out of view; but still allow them to light the room softly. Some people get so weak that they are unable to open their eyes at all because their brains cannot cope with even the slightest stimulation. As with everything this will go away eventually.
Noise Sensitivity
Noise sensitivity can be very hard to live with because even the slightest noise like the rain or someone talking in another room, can be too much. It is often hard to cut out all noise, especially if it is coming from outside; but there are ways to reduce the problem.
- Foam Ear Plugs – these can be bought from any good chemist and also from displays of travel aids in supermarkets or large stores. Try different brands to see which are most comfortable.
- Alternatively you can buy noise-cancelling headphones. You can switch this on without having to plug them into a stereo. They are sold mainly to cut out aircraft noise when flying. severely affected people have found they work well to reduce sounds such as hoovers, lawnmowers and drills but don't reduce all types of sounds. They can be good if you find ordinary headphones and earplugs exaggerated body sounds through bone conduction. The Bose headphones are lightweight and extremely comfortable to wear. There's a slight white noise hiss but some find this quite calming. www.bose.co.uk www.iheadphones.co.uk
- Ear defenders are another option, although sometimes the plastic ones can pick up motor vibrations and make them worse.
- If you live in a semi-detached house or flat and noise from next door is a problem – then put heavy furniture, thick rugs, carpets and curtains round the room to absorb next doors’ noise.
- If there is space in the house to change rooms many people find this is the best solution – this is obviously influenced by the routine of other members of the household.
- Ask family members to keep the noise down, get them to talk as quietly as possible, and as far away from your hearing because it is extremely difficult to switch off from surrounding sounds when you are resting, no matter how quiet. They may have to resort to whispering or writing things down.
- Put plasters over doorknockers and disconnect outdoor bells to avoid loud interruptions. Put up messages for deliverymen to leave parcels in a specific place, so they don’t need to knock.
- Turn down the noise on telephones. You can get a special service from BT, which means you can turn the ringing off and an automatic answer phone takes messages, which can be picked up at a convenient time. You can also set it so that the phone only rings for a short time before the answer phone switches on.
- Suggest that people listen to music or possibly even the television using headphones. You can get special ones without leads. Make sure you explain the problem to them, so that they understand you are not just trying to be awkward.
If you can cope with a little soft music, you can put it on to block out surrounding noise; but listening takes energy so try and have periods of complete silent rest. It is an idea to use headphones because they contain the sound, making it more confined. Try using earphones; but just in one ear because it reduces the amount of stimulation you receive.
Touch Sensitivity
This is a very difficult symptom to live with and there is little that can be done. The main approach is to reduce contact with the affected areas.
- Wear as few clothes as possible, keep the heating turned up all the time.
- Use a blanket cradle to keep bedclothes off the body.
- Holding severely affected's hand, although comforting can get very tiring and painful. Allow the severely affected person to place their hand on top of yours.
- If you have carers in, draw a diagram of wear the severely affected person can’t be touched due to sensitivity. Do this for both the front and back of the body.
Smell or Chemical Sensitivity
Sensitivity to smell can be very hard to live with as it is hard to cut out all smells, whether they are from the garden or come in on people’s clothing.
Make sure people who come into the house use non-scented products like those made by Simple or Avon. Ask them not to wear perfume or aftershave. This can be difficult if you have lots of people coming to the house e.g. carers but try to explain the problem to them.
An air purifier can help with allergies, including hay fever and also remove smells. They are available from Kelkoo and Argos.
Keep doors and windows shut to keep smells out of the person’s room and in the room they are coming from. Open the windows within the room to air the smell out before opening the door and allowing the smell to penetrate the rest of the house.
Keep the kitchen door closed to trap cooking smells and always keep lids on pans. Have a window open to extract the smell. Try to cook things that cook quickly and don’t give out a strong smell.
Wash new clothes and bedding before using to remove the chemical smells. Lakeland do a Wash-It Laundry ball. This is a washing ball for the washing machine, which cleans without using a detergent.
There are a number of shops which now stock eco-friendly and chemical free products, great for people with sensitivities.
The Healthy House sell products which are good for people with smell, chemical, electrical sensitivities, S.A.D, allergies, asthma and eczema, including a range of cleaning products which don’t smell, air purifiers and non-smelling. www.healthy-house.co.uk
Alternatively try Ecover cleaning products, wash powder, washing up liquid etc and E-cloths with water to clean glass/mirrors. Available from some leading supermarkets.
Bio-D cleaning products are chemical free, Faith in Nature Shampoos and Jasons toothpaste, face cream etc, all available from http://www.honestycosmetics.co.uk
Non perfumed deodorants without chemicals can be found at health shops and Lush www.lush.co.uk
Green People have a range of products. www.greenpeople.co.uk
Marks and Spencer’s have also brought out a natural range. www.marksandspencer.com
Natural odour free paints can be bought from www.eco-paints.co.uk
Recovery
Light Sensitivity
I was in a darkened room 24/7, eye mask, dark glasses, blackout curtains. The works. I didn't try to force myself into the light. Forcing bad! Small, gradual increase - good.
I knew I wanted to start looking out my window so I started by just opening the curtain the teeniest, tiniest amount. My bed was by the window and I had a large crystal I used to prop open the corner of the curtain. I didn't look outside or stare at the light and I kept my dark glasses on.
I did that for weeks and weeks before opening the curtain a little more. It was slow, gradual and on bad days I didn't do it at all.
I started to peep out at the birds, just a few seconds and then eye mask on. Rest.
The length of time I could look out increased and the amount of light I let in got larger until I could pull them back a sizeable way.
One day I forgot to put my sunglasses on when I looked out and it wasn't a problem straight away. The moment I realised and it was too bright I put the glasses on.
I started to build up to not wearing my sunglasses at all.
Slow, steady, gradual.
By gradually getting used to the light in my room, I could eventually go outside without needing my sunglasses. I still use them whenever it's bright out or sunny but things are much better.
If you can't prop the curtain open like I did you could get someone to do it for you.
Lighter curtains that open too far? Use clothes pegs to keep the majority of the gap closed and just a tiny bit open at the bottom.
I knew I wanted to start looking out my window so I started by just opening the curtain the teeniest, tiniest amount. My bed was by the window and I had a large crystal I used to prop open the corner of the curtain. I didn't look outside or stare at the light and I kept my dark glasses on.
I did that for weeks and weeks before opening the curtain a little more. It was slow, gradual and on bad days I didn't do it at all.
I started to peep out at the birds, just a few seconds and then eye mask on. Rest.
The length of time I could look out increased and the amount of light I let in got larger until I could pull them back a sizeable way.
One day I forgot to put my sunglasses on when I looked out and it wasn't a problem straight away. The moment I realised and it was too bright I put the glasses on.
I started to build up to not wearing my sunglasses at all.
Slow, steady, gradual.
By gradually getting used to the light in my room, I could eventually go outside without needing my sunglasses. I still use them whenever it's bright out or sunny but things are much better.
If you can't prop the curtain open like I did you could get someone to do it for you.
Lighter curtains that open too far? Use clothes pegs to keep the majority of the gap closed and just a tiny bit open at the bottom.
Music / Sound
I missed music so much! It was something I took for granted and I was desperate to get back to.
I started by getting my brother to put on music in a room at the far side of the house. I listened for as long as I could with just one ear plug in and my head on the pillow so the sounds were filtered through the pillow. When it got too much (about ten seconds the first time) I put the other ear plug in and blocked it all out.
Over time I increased naturally, allowing my body and energy tell me when it had had enough.
It wasn't every day, it was just when I felt up to it. When I could listen to more I started listening to music in my room, turning it off when I had enough.
Slow, steady, gradual.
I started by getting my brother to put on music in a room at the far side of the house. I listened for as long as I could with just one ear plug in and my head on the pillow so the sounds were filtered through the pillow. When it got too much (about ten seconds the first time) I put the other ear plug in and blocked it all out.
Over time I increased naturally, allowing my body and energy tell me when it had had enough.
It wasn't every day, it was just when I felt up to it. When I could listen to more I started listening to music in my room, turning it off when I had enough.
Slow, steady, gradual.
Claire Wade. Studio 17659, PO Box 6945, London, W1A 6US
This site is written by someone who is severely affect with ME and is compiled as a result of personal experience and research of other people with ME and their families. It is intended for information and guidance only. It is not intended to replace medical advice. Readers are strongly urged to consult a professional medical practitioner for a proper diagnosis or assessment before trying any of the treatments or medications outlined. As with all medications, always consult your GP, specialist or pharmacist and tell them about other medications or herbal preparations you are already taking; always read the label and patient information leaflet.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.
The contributors to this website are not medically trained but all live with or have significant experience of ME. The tips may not be suitable for everyone. No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author.
No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise), except for personal or non-commercial use without the permission of the author.
Claire Wade has asserted her right under the Copyright, Designs and Patents Act of 1988 to be identified as the author of this work.