Washing and Toileting
Washing and toileting when you are severely affected can be really hard. It requires a large amount of precious energy without much to show for it.
Society makes us think that if we don’t wash or bathe at least once a day we are dirty and unclean. This simply isn’t true. The body has a way of cleansing itself and although it does not sound pleasant it is fine to go for at least a month, if not more, without washing your body.
Seeing this in writing will shock many people – it takes a lot to get over the normal mind set; but when regular bathing is causing you to slide further and further down the ability scale you have to work out your priorities.
Depending on whether it is possible to go without washing for over a month. If you have the energy in between times you can use facial cleansing or baby wipes. There are now deodorising wipes available; but they are scented and may be a problem if you are suffering from nausea. For a more thorough wash use a bowl of warm soapy water or alternatively use liquid soap. You can then wash with a flannel or sponge. Severely affected at a very low ability will find this impossible to do for themselves.
It can be very embarrassing for a parent or carer to wash you; but to minimise on this embarrassment use a towel, warmed on a radiator, to cover you up as much as possible. This also helps keep you warm. It’s a good idea to keep your top or T-shirt still on, on one side of your body, while washing the other side, so as not to get too cold.
Cream deodorants are a good idea – they can be cool but not as cold as spray deodorants and aren’t sticky like roll-ons. They also don’t smell too strongly.
Deodorant that can help with sweating armpits include Mitchum and Driclor. However some people find them painful and itchy.
If you can cope with scents then it can be nice to use different body sprays, to make you feel special.
If you are well enough to reach the bathroom make sure there is a chair for you to sit down on and that everything is easily in reach. There are special hoists for getting in and out of the bath – see your O.T, The Red Cross or Boots. Use non-slip mats in the bath. It may also be an idea to fit rails in the bathroom. There are also special chairs available for sitting on when in the shower. Always make sure there is someone around to help you when taking a bath.
Using the toilet
This topic is a very hard one to write about – society has conditioned us into feeling embarrassed about basic bodily functions. Even having been through this, it is still very hard to talk about; but it is a very important topic.
If you can get up but are unable to keep walking to the bathroom, then a commode beside the bed is invaluable. They are available from your O.T. or all good Care Catalogues and shops. They vary in price and design.
You may find you need help getting out of bed and sitting on the commode. To begin with it feels degrading; but you soon get used to it.
Sometimes you can put the commode right beside the bed and you may be able to use the handles to manoeuvre yourself on to it with your legs remaining on the bed. This can be helpful if you are unable to stand or it’s painful to put your legs downwards.
Keep a bowl of water and soap by it to wash your hands in. It is possible to wash your genitals whilst you are on the commode with a damp tissue or a jug of water.
You can get special moistened toilet tissue instead of having to use ordinary toilet paper or soapy water.
When you need to pass a bowel motion, place a layer of toilet paper or water on the bottom of the commode bowl – this makes it easier to clean. Anti bacterial or antiseptic wipes help when cleaning. After it has been emptied get a parent or carer to strike a match because it gets rid of the smell. It is advisable to empty the commode regularly, washing round with water and then adding some disinfectant that you can leave in the bowl. Sainsbury’s disinfectant is good, as it does not smell too strongly. Also use antibacterial or antiseptic wipes to wipe the seat and lid, both on top and underneath, every so often, leaving the lid off and the bowl out, to air for a while.
If you can’t get up to use a commode, then there are special bed bottles and pans that you can get. These can be used while still lying down. There are special male and female ones, available from Care Shops.
You can get Vernagel which turns liquid to gel, which will really help if you’re using it on your own.
Keep a commode nearby to put the bedpan in when you’re done if there’s no one to collect it. Have something to cover it up and baby wipes nearby.
Use plastic/waterproof sheets on the bed. Alternatively talk to your OT about Kileys, large washable pads, which can be used instead.
You can wear Staydry pants to avoid leaks, available from Boots.
At the very worst stages your doctor may decide to catheterise you. This proves a very good option for some people because it saves a lot of energy.
If you can reach the toilet, even if it is just occasionally, you can get a seat to go over the toilet, which raises it, and it also has handles to help you get on and off easily.
Some severely affected people experience constipation due to the lack of fibre in their diets. This can be very painful and it is worth contacting your GP or seeing a pharmacist about a gentle laxative.
Prunes are a natural laxative and can be bought from supermarkets dried, tinned or as juice. Figs are also a good option.
You can buy “Fybogel” to drink or add to food, which helps bulk up your diet without having to swallow large amounts of fibre. “Anusol” cream is available from chemists if passing motions is painful.
Periods can be greatly affected by severe ME. They may stop altogether or become irregular; but don’t worry they will return to normal as you get better.
The hormones released before and during your period can greatly affect your mood and symptoms, a combination of PMS and ME is incredibly hard to deal with; but don’t worry everyone has it. Unfortunately like everything else there is no simple solution. Some people find it useful to take the Pill for a while, so that they only have a period every three months or so, which helps their moods and symptoms. Talk to you doctor about this.
It’s a good idea during the time of the month to wear two pads overlapping from front to back so you don’t leak when you are lying down. Also place a dark towel on the bed, which can quickly be changed if necessary.
It is often important for men to keep shaving because their faces feel itchy. This feeling does go away once you get used to having a beard but psychologically it can be very hard to get used to.
Women also sometimes feel the need to remove excess body hair and both genders have to way up the pros and cons of shaving.
Shaving can be difficult especially if the severely affected person needs somebody else to do it for them. An electric razor is easiest but the noise might be a problem, so experiment with wet shaves. Approach a relative or carer for help and advice.
It is important to keep brushing your teeth when you are severely affected, otherwise you can develop cavities and painful abscesses, which will cause extra problems. If you are too weak to brush your teeth then get your carer to do them for you. An electric toothbrush is effective; but is also very noisy, so you may want to stick to having them done manually. Use a toothpaste and mouthwash high in fluoride, ask your dentist to recommend one.
Oral B Brush Aways are teeth wipes that are like a little finger glove that you slip on and rub over your teeth. They require no rinsing or water and you can wipe teeth, gums or tongue. They remove that ‘gritty’ feeling and can be used lying down.
If you do have problems with your teeth, it is your right to have a dentist visit you at home. If you need a filling they will probably put in a temporary glass ionomer one. It won’t last forever and may need replacing but will be easier to have done if you can’t go to a dental surgery.
Remember to explain your illness to the dentist. Also talk to them about a procedure called Ozonation. This is a new practise where the teeth have a small cup placed over them and are covered in a special gas which kills off any bacteria, slowing down the decay until you are ready to have proper dental work done. It is painless and the only problem is the noise the machine makes, which can be combated with ear plugs. The machine is portable so you can have it done from home.
Everyone’s familiar with how their hair feels if they have not washed it for a couple of days, that itchy uncomfortable feeling – it makes you long for shampoo! The amount of energy it takes to wash it though is too great for many Severely affected people. The only advice is to try and forget about it, within a couple of weeks the feeling goes away and you feel just like normal. Although your hair does look a little greasy, it’s more a sleek look, rather than the way it looks after just not washing for a couple of days.
Your hair might seem a lot thinner and will break easier; but don’t worry your hair is not all going to fall out! This can be a subject of great anxiety because everyday more hair seems to be breaking; but after a while this will slow down. No damage has been done to your scalp so it will grow back in time. Hair needs a good diet and exercise to grow properly, so it’s clear why you are having problems at the moment. Once both factors improve so will your hair.
You may find you have got little white bits in your hair – don’t worry it’s probably not head lice – this is a favourite trick of hospitals to get you to wash your hair! It’s more likely to be dandruff. Because you aren’t washing regularly, it stays in your hair. This too will go away when you start washing again.
If you do want to wash your hair whilst you are in bed here are a few ideas: Dry shampoo available from most chemists or a special inflatable sink can be used at the end of the bed – available from www.activemobility.co.uk .This is actually a lot easier than it sounds. Place the sink on a low table or a couple of stacked boxes at the end of the bed, or even directly where the pillows normally go; but make sure to use lots of towels. Then lie with a towel over the bed and one around your shoulders. You may want to have a plastic sheet on the bed and wear a toweling dressing robe to catch any drips. Also have a flannel you can put over you eyes to keep the shampoo and water out.
The sink has a plug and pipe that run off it and if you place the pipe in a bucket you can catch the water that comes out. Have two basins of warm water standing by and get your carer to use a plastic jug to pour water onto your hair. Go through the normal hair washing, possibly sitting up to put the shampoo on if you are able, and then rinse.
You can use natural bristle hairbrush which naturally cleans the hair by spreading the natural oils and removing the dirt from your hair. Available from www.kentbrushes.com you can just use warm water and not do it very often.
Going without a hair cut isn’t a problem for girls but can be hard for boys/men to accept. If it becomes a problem contact a mobile hairdresser and get them to do a quick, dry cut.
This whole part of the M. E. is incredibly unpleasant and degrading – it’s something that nobody should have to go through, but I hope that the above tips will make it slightly easier for you to get through.
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