Devices that help save energy so you can do more to take care of yourself
When you are trying to stabilize your symptoms and recover, the focus is on using your energy and muscle training for what you have set as your priorities for the day. Then, you set priorities for what needs to be done and find an easier way to do the other things you need during the day.
There are many assistive devices or equipment you can get that will help you with your daily activities. People who have started with Chronic Fatigue Syndrome (CFS) or have more severe POTS or NMH may be spending more of their time in bed. The devices here will make things a little easier to do things and to recover - like an electric bed!
REMEMBER THE GOAL - The goal is to keep you doing what you can to take care of yourself. If an assistive devices makes that possible - get it and use it!
A physical and occupational therapist can evaluate your situation, your abilities and your home. They can make suggestions and help get prescriptions. They also can give advice on devices or where to get them. However, not all therapists have the same experience and understanding of the challenges you are dealin with. Suggestions for things to consider might help you get the things you need.
For some of the devices, you can get a prescription and your insurance might pay for them: electric bed, wheelchair. For others (sitting support, bedside table, shower chair, sponge on a stick), a prescription would support its medical use and need as a medical expense for tax purposes. Check with your tax advisor or the IRS/state guidance documents.
Toothbrush - electric or battery operated. It takes muscle strength and endurance to be able to hold your arm up to brush your teeth. It can also trigger orthostatic symptoms because you are pulling blood up to your arms. If they don't get enough, that will make them tire easily too.
Sitting up in bed. For some people who have become significantly affected by orthostatic intolerance and spend a great deal of their time in bed, this is a major challenge - and an important issue. Part of recovering from OI is to retrain the blood pressure receptor cells in the neck - to get them used to being upright again. This means, it's important to not lie flat all the time. However, if the muscles of your abdomen/back, the muscles that help with posture are weak from prolonged bedrest, sitting up can be a challenge, it can give you orthostatic symptoms (like a headache on the top of your head or the back of your head/neck), and you can get tired quickly. If you have been on prolonged bedrest, you may not be able to sit up for long - for more than a couple of minutes. It may take you some time to retraining and strengthen those muscles again. The answer is not to keep lying down. The answer is to find ways/things that help you sit up easier.
There are pillows and other devices that can be used in the bed to help sit up. However, some are big and bulky. They take a lot of energy to move them into and out of the bed. An electric bed may be the best option. It allows you to sit up for short times and do it repeatedly throughout the day.
Other options - a recliner. These can be helpful because you can change position pretty easily - from sitting to partly lying down. They also allow the legs to stretch out in front. That will bring the blood pressure up/pulse down.
Bedside tables. These are the bedside tables they use in the hospital. They can be adjusted so they are at the right height and close to your body so you can have good posture when sitting up. They can be found online and some local pharmacies, especially those that handle 'durable medical equipment'. They come with different options. Wheels are helpful - so it can be used in bed and in chairs. The height should be adjustable - measure your bed and favorite chair to be sure it will adjust so you can use it for both. Some have tray tops that can be flat or tilt. It can help to hold a book for reading, however, they are more expensive and can have more problems. There are other devices that can be used to hold a book, like a wooden rack they have for cookbooks!
Electric beds.
These can be life-saver if you are bedbound, spend most of your time in bed. They get you started sitting up more often - which is very important for the BP receptors in the neck and aorta (Baroreceptor cells). They don't require getting out of bed to raise the head of the bed or asking someone to come raise or lower the head, when you've only been sitting for a few minutes.
Wheelchairs. Regular Wheelchairs - These are very helpful if you need to do more walking than you are ready for. Many places, like shopping malls and clinics have them available at the door. If you go places where they are not available, you may want to get one (get a prescription).
Wheelchairs. Reclining Wheelchairs - If you have been bedbound or your blood pressure/pulse are not very stable and you get symtoms pretty easy sitting up, a special wheelchair may work better. The back of the chair can be lowered and they ahve a headrest, so you can be halfway between lying down and sitting up. There are longer leg rests that can be raised up so the legs are out front. This helps keep you from getting orthostatic when you are up/out. They are very helpful for longer visits to the doctor or to visit. However, they are longer than the regular wheelchair. They can be tricky to get into elevators when you are all stretched out. They do come apart so they can be put into a car for transport.
References
- Personal experience of author as physician and caregiver since 2004 as well as recommendations from physical and occupational therapists seen in consultation.
Author: Kay E. Jewell, MD
Page Last Updated: July 6, 2012
The Orthostatic Intolerance (OI) Center