Wednesday, 3 February 2016

How I manage M.E/CFS

Here are some tips that I have found have helped me to manage my chronic illness (ME)  through the years. *Please bare in mind that everyone is different and what works for one,  might not work for another.

ENERGY SUPPLY and DEMAND

To help prevent relapse you want to make sure that you supply your body with more than is being demanded of it.

DEMAND - physical activity, pain, stress, emotions, bereavement etc
SUPPLY - rest, relaxation, healthy diet, sleep, pleasure, achievement.

When energy levels are low it's common to find that you've prioritised the necessary tasks to be done, leaving no energy left for pleasure. Doing something you enjoy and that you find pleasure in can in fact help you to feel better as it releases endorphins, which can counteract depression too.
To enable yourself to not take so much away from your energy levels it is essential that you are able to deal with stress. It is a necessary part of life and it's up to you to choose how to deal with it.
Write down your thoughts, this will help you to see them clearly so that, if necessary, you can find an alternative viewpoint.
Put your relaxation into practise, breathe deeply to calm yourself quickly. Make sure that each day you do something you enjoy!




Breathe properly. It is important that you don't breathe from your chest as this produces short, shallow breaths and uses a small percentage of your lung capacity. Instead, breathe gently, but deeply, making your stomach rise. Breathing like this helps you to relax more and panic less.
Maintain a good posture and good core muscles. With inactivity causede, muscles become de toned, which can lead to back problems. This does not go well with the muscle aches and pains that are symptoms. Working on your posture can encourage the core muscles which strengthen your back and help it to work. Here is more information on the importance of good posture.
Postural exercises-
Sit comfortably on a chair with your back right against it. Place a rolled up towel in the small of your back.
Keep your legs uncrossed and your feet flat on the floor.
Lift your chest over your breast bone keeping your shoulders over your hips.
Then pull the lower part of your shoulder blades down and in very slightly.
Tuck in your chin then lift your head whilst trying to keep your chin in that position.

Gently tighten your pelvic muscles (imagine you are trying to stop yourself urinating or passing wind) without changing your position and don't hold your breath. Hold them and count to ten. This might not be possible at first, but the more you do it the better you will get.


PACING
Pacing is an important practise in ME  to stop you from over exerting yourself and following a 'boom - bust' pattern. I have found it so useful in managing my energy levels so that I don't over do it.
Pacing requires you to learn to listen to your body. Stop activity when you come to the point where your arms or legs begin to feel weak, or where you feel unwell or sick. When you feel these signs it is a good time to stop and rest. To be safe, it is recommended that you do half of what you think you can do, as frustrating as that might be.
If you have done something particularly exhausting and find you are severely affected, then you should rest for as long as necessary, whether that be one day or a week.
You might find it useful to keep a diary of your activity and symptoms you experience following the activity.
You might also want to record what food you have eaten and your responses to it, plus any stress (physical or emotional) you might be under.  A diary can aid you in identifying the triggers that exacerbate your symptoms.

Prioritise your activities so that if you are unable to finish all of them you got the important things done first.
Don't be afraid to ask for and accept help until you are well enough to do it yourself.
Understand that you might not be able to do the things you need or want to do at this moment. If you feel you want to try doing more, give it a go, but be sure to listen and watch out for the warning signs your body is sending so as not to push yourself.




RELAXATION
When relaxing make sure that there are no distractions. Take time out from other people. Turn off the tv, computer and your phone. Put your book down. Make your environment as peaceful and quiet as possible, enjoy your own company. Then follow the advice below.
Deep breathing
Lie down on your back. Put one hand on your chest and the other on your stomach.
Breathe in through your nose. The hand on your stomach should rise. The hand on your chest should move very little.
Exhale through your mouth, for as long as you can whilst contracting your abdominal muscles.
Continue to breathe in through your nose and out through your mouth. Count slowly as you exhale.

Breathe deeply from the abdomen, getting as much air as possible in your lungs. Taking deep breaths from the abdomen, rather than shallow breaths from your upper chest, ensures you inhale more oxygen. The more oxygen you inhale means the less tense, short of breath, and anxious you feel.
Visualisation
Visualisation  involves imagining a scene in which you feel well , at peace, a place where you can let go of all tension and anxiety.
Whilst lying down, breathing deeply, close your eyes and let your worries drift away. Imagine a time where you were well and happy. Try to picture it as vividly as you can. This works best if you incorporate as many details as possible.  Remind your body what it feels like to be healthy, fit and pain free.
For example, you may remember a time you enjoyed a walk in the countryside. Remember what it felt like to breathe in the fresh air, To see the nature around you, to smell the flowers and trees and country air. Remember how light your body felt without pain, stiffness or heaviness.
Enjoy the feeling of deep relaxation that envelopes you as you explore your place of wellness. When you are ready, gently come back to the present and open your eyes.

Depending on your levels of activity you also need to learn how to relax whilst accomplishing the tasks in hand. Prioritise the things that you need to do and do them one at a time. By doing this you will feel less stressed. The struggle to do more things at once makes relaxation impossible. Most importantly, enjoy doing what you have to do. If it is a job you hate doing but have to, make it enjoyable somehow. If its cleaning, do it to music.  Ultimately, you can choose how you respond to your tasks. Choose not to worry about it, practise deep breathing and think of more pleasant things.
Laughter can take the stress out of any situation and help you to relax. Be around family and friends that you can be yourself with, that uplift you and help you to see the brighter side of life.
Don't worry yourself with what the opinions of others might be. Subconsciously trying to please others makes it impossible to relax.  Relaxation can only happen if we aren’t thinking about what others are saying or doing.




CONCENTRATION and MEMORY

Brain fog can have a huge debilitating effect on your life. Some tips that have helped me combat this symptom are:
Use diaries, organisers, alarms etc.
Establish routines and make sure everything has a home eg. A special place for your house keys or wallet so you always know where to find them.

Try reading again. Start with magazine articles or short stories, children's books (I particularly love the Harry Potter series!).
Play simple games or do a jigsaw.
Keep up your hobbies even if only for 5 minutes a day (or however long you can manage).




RELAPSE
There are many reasons why we might experience a relapse. Over doing it, illness, stressful times etc.
It is important not to let these setbacks worry you as this will only add stress to the situation.
It is possible to manage our relapses and gain control so you recover more quickly. Some helpful tips are:
-Think positively, as how you think affects how you feel.
- Adequate Rest and Relaxation. During a relapse you will need to rest and relax more than usual, refresh yourself on the relaxation techniques to get the most out of this time.
- Prioritise what you will spend your energies on, placing the most important first.
- Indulge yourself with a relaxing massage or bath, or a cheerful visit from your favourite person.