Sitting or Lying in Bed
Getting comfortable in bed is very important. It will take time and a lot of experimentation to find what works for you.
The likelihood is you are going to need more than one pillow especially if you are trying to prop yourself up. Feather pillows are easier to mould into a comfortable shape (if you are not allergic to them), use a variety of thicknesses to get the desired height. Always make sure you are properly supported, a stiff back or neck will only make matters worse. If lying in bed use pillows under your knees to support you. If you are sitting up in bed you can use a ‘V’ pillow or alternatively use a stack of pillows with a beanbag on top – the more pillows you use the more you can increase the angle at which you are sitting. This is a good way to build up to being able to sit in a chair again. You can buy foam wedges to put under your pillows available from Boots or an inflatable pillow with an electrical pump from an Occupational Therapist.
You can get a range of pillows in different shapes, sizes and materials. V-shaped pillows and pillowcases are available from
www.thewhitecompany.com and www.toysrus.co.uk Argos and Rosebys.
Also recommended are full-length body pillows. Available from www.safefoam.co.uk and www.dreamgenii.com
For organic body pillows www.madeinwater.co.uk Cushtie pillows are soft and easily mouldable. www.firebox.com
Chillow Pillows are pillows which act as cooling pads. Fill them with water which is fully absorbed into the foam core, leaving it completely dry. Once activated, it will keep on working, so it's always ready for use whenever you need it. It does not use power and is allergy free. Good for hot flushes, fevers, night sweats, headaches, eczema, muscle/joint pain.
A lot of people with M.E. find the pressure of the blankets whether sitting or lying is too much for them and causes their legs to ache. Frames are available from your GP, OT or medical suppliers e.g. Boots, Disability Living etc.
Pressure can develop when you lie in the same position for a long time. This is due to lack of blood flow to the affected areas. They can be sore and painful; but are preventable.
Try to change position every two hours, even if you need somebody else to move you. You can buy special pressure relieving mattresses, available from Care Shops. Alternatively there are motorised beds, which can be raised or lowered to change position without you having to move. These are also good for gradually increasing the angle that you are lying at, which helps when you are trying to get back to being able to sit in a chair. The only problem is the motor noise may be too much for those with noise sensitivity.
Be aware of any numbness or reddening or darkening of the skin as these are the first signs of a pressure sore. If you act immediately by taking the pressure off you can prevent them developing any further.
If the skin becomes broken you will need to have it dressed, contact your local nurse.
For minor redness and soreness use “Sudocrem” available from chemists. This can sting to begin with; but the pain soon wears off.
For more advice visit the Tissue Viability Society at www.tvs.org.uk
If your pressure sores get infected or you are continually developing them, seek medical advice.
If you have problems raising yourself into a sitting position, rope ladder bed hoists are available from Boots. These are strong nylon rope and white plastic runged ladders, which fasten to the end of the bed legs and lie over the top of the bed, enabling you to pull yourself into a sitting position.
In a sitting position you might find it easier to prop yourself up on either side with pillows, so that you can then rest your elbows and arms on them. Sheepskin rugs are advisable covered with a folded pillowcase, to stop pressure sores developing. It’s advisable to use a moisturising cream on your elbows as this stops the skin drying out and breaking.
Going from lying to sitting
If you have been confined to bed for a long time, constantly in the same position, then you may suffer from dizziness when you try to change the position that you are used to i.e. if you have been constantly lying down and you try to sit up or alternatively if you have nausea and have been propped up all the time when you try to lie down.
The best way to overcome this is to gradually practice sitting in the new position for as long as you can manage. This may only be for 5-10 seconds at first. Try each day sitting or lying in the new position and gradually the time will increase – don’t try to push it! It will come in time.
Lying in bed means the muscles in your legs aren’t being used and so they will waste away. Some people try to have physiotherapy regularly or practise gentle exercises so this does not happen. Many people will tell you that you should do this; but it isn’t the solution for everyone. Even gentle exercise can be too much. Don’t push yourself, it’s not worth having muscles that work when you are too ill to get up and use them.
Another concern is that you may develop Osteoporosis if you don’t keep walking around. As yet there has been no research on this in ME patients. Don’t let this possibility worry you as there are more important factors to think about at the moment. When you are able try to eat calcium rich food.
If you do decide to have physiotherapy make sure you find someone who is sympathetic and understands ME. NEVER let anyone push you into doing anything that you are unhappy about doing. It’s your body and you know what’s best for it.
If you are too ill for physiotherapy don’t worry. When you start to become mobile again your muscles will gradually return. The most important thing is to slowly build up your activity level over a period of weeks and months.
Whilst being severely affected it is more important to be comfortable and relaxed – any unnecessary stress/pressure will only make your condition worse.
Fully supported resting positions By Kate Sweeney
Physiotherapist at Westcare ME charity (0117 923 9341)
No. 1 Crook Lying
Lie on your back with your knees bent, use as many pillows to support your knees as you feel you need. This puts the lower back in a comfortable and well supported position. Support your head with one or two pillows.
Place each arm on a pillow giving support from behind the shoulder along the length of the arm, wrist and hand.
No. 2 side lying
Use as many pillows under the head as required. To support the arm which is uppermost, put a doubled pillow underneath. A pillow is then placed along the length of the back and 'tucked in' a little underneath you. This prevents you from rolling backwards. One or two pillows are placed between the knees and this puts the hips and knees into a position of comfort and prevents the pelvis from rolling forwards.
No 3 Long Sitting This is the position that people sit in when sitting up in bed. Put as many pillows behind the head as you need to support the head so that the muscles of the neck and shoulder girdle can let go. To further support the shoulder girdle, lace one or two pillows across the front of the chest with the arms rested over the top of these pillows. One or two more pillows will be needed to support the length of the back. Beneath the knees, it is important to have the support of some pillows. If the knees are left in a straightened position in long sitting, it can stress the muscles at the back of the leg.
No. 4 Chair sitting : Sit in a high back chair with arms. Ensure that the head is fully supported using pillows or cushions if necessary. Some people find a small roll in the lower back supportive, which can be made by folding an 8" cushion in half. To support the shoulder girdle, place one or two pillows across the front of the chest with the arms resting over the top of them. The forearms may be rested on the arms of the chair or lightly placed on the lap. Ensure that your feet are comfortably rested.
InterAction Issues 35- 40 2002 p18 - 20
ACTION FOR M.E. P.O. BOX 1302, WELLS, BA5 1YE, UK
From the CFS Team at Havering Hospital
NHS Trust and BUPA Hartswood Hospital
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