As there is no known cure for MdDS, symptom management is key. As with any chronic health condition, there are many tools and resources one can use in order to ‘help’ oneself better manage a condition such as MdDS.
PLEASE NOTE : Any advice/suggestions given here are NOT meant to replace those given to you by your medical professional
The list of symptom management tools is by no means exhaustive but should include what we have featured in this section.
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TOOLS & RESOURCES
Breathing Techniques – Relaxation
Working With Health Professionals
Help for Friends and Family
Many of us assume that the symptoms we are experiencing are only due to MdDS. It is important to remember that each of these symptoms can themselves feed into other symptoms and can all make each other worse and feed off each other. For example, fatigue from MdDS may lead to depression and social inactivity, then onto anxiety and stress. Can you see how it may become a vicious cycle? Which will only get worse unless we find a way to break the cycle.
By understanding the Symptom Cycle and how each symptom contributes to the others, we can learn how to break the cycle at various points.
Our mind can have an important influence over our body. It is a very powerful tool. There are several techniques we can use which involve using our mind to help manage our symptoms. These include activities such as distraction and positive thinking. All of these can be used when we are expriencing MdDS symptoms and also when we have troubling thoughts or difficulty sleeping.
EXAMPLES DISTRACTION ACTIVITIES
- Watching a movie
- Listening to music
- Talking to a friend
- Doing something you enjoy – such as cooking
- Or even something as simple perhaps thinking of the name of a bird for every letter of the alphabet!
As previously mentioned, the mind can influence the way we feel. Therefore, if our thoughts are negative, they can lead us to feel and act negatively. This can lead to low-self esteem, depression and anxiety. All of which can contribute to exacerbating our MdDS symptoms.
If we can change negative thinking into more positive thinking, we can better self manage our MdDS symptoms.
STEPS TOWARDS POSITIVE THINKING
- Write down self defeating thoughts. An example maybe ‘I’ll never be able to that, its too much!’
- Change these thoughts into helpful thoughts about yourself. ‘I can do a little bit each day’
- Create a Gratitude List
Remember this takes practice! Especially in the beginning. It maybe useful to have some ready made affirmations to use. Examples of these could be ‘I am a competent person’, ‘I am a kind person’.
A Gratitude List something we write down identifying those things for which we are grateful. The do not have to be big things. Examples may include the flowers in your garden, friendships or even just the hot water for the shower!
Breathing Techniques – Relaxation
Having MdDS can cause an great amount of anxiety. The anxiety in turn heightens symptoms which in turn increases our anxiety. Once again heightening symptoms.A perpetuating cycle is born.
We can use breathing and relaxation techniques to assist with reducing anxiety /stress and hence reducing MdDS symptoms – thus breaking this cycle.
The easiest technique to use is what is known as pursed-lip breathing. This assists us to empty our lungs of used air by exhaling slowly and completely through the mouth.
Diaphragmatic breathing is another way to reduce anxiety / stress. It is known as such because you contract the diaphram (the muscle below te chest) upon breathing in.
- Sit comfortably, with your knees bent and your shoulders, head and neck relaxed.
- Breathe in slowly through your nose so that your stomach moves out against your hand. The hand on your chest should remain as still as possible.
- Place one hand on your upper chest and the other just below your rib cage. This will allow you to feel your diaphragm move as you breathe.
- Tighten your stomach muscles, letting them fall inward as you exhale through pursed lips (see “Pursed Lip Breathing Technique”). The hand on your upper chest must remain as still as possible.
- It should take you twice as long to exhale as it does to inhale. If you feel lightheaded, you are breathing out too fast.
Using a BODY SCAN technique is another useful way to reduce anxiety /stress. The Body scan ai a way to get in touch with the body, let go of feelings of needing to get things done, and release pent-up emotions.
The body scan alternates between a wide and narrow focus of attention; from focusing on your little toe all the way through the entire body. The body scan trains your mind to be able to move from detailed attention to a wider and more spacious awareness from one moment to the next.
You can begin the practice by lying on the floor, or a mat, or your bed. Basically, you can begin by focusing your attention at the top of your head and then move down the body, or vice versa. It’s good to start with a guided practice to get a sense of how to move your attention up or down the body. You can find these easily on the Internet. One useful site is Freemindfulness
Being physically active means you move and are active during the day. An exercise program means that you set aside times and choose specific exercises to do.
How physcial activity and exercise help us with MdDS?
- Reduces stress/anxiety
- Assists us with working through difficult emotions
- Reduces fatigue
- Provides us with more energy
- Provides better sleep
- Decreases depression.
Remember to always work within your own limitations in regards to exercise and seek advice from your medical professional as to what type of exercise is best for you.
Getting quality sleep on a regular basis can also help manage our symptoms. As we sleep, our bodies scete hormones that help the body heal by repairing the wear and tear that has naturally occured during the day. This is even more important when it comes to MdDS. Our bodies are under more physical stress than normal in an effort to remain balanced. Our minds are also affected with stress, anxiety and often depression.
Some ways to get a good night’s sleep include:
- Go to bed at the same time every night
- Get up at the same time every morning
- Avoid caffeine (including chocolate) 4 hours before retiring
- Avoid alcohol
- Use earplugs if you sleep lightly
- Do a body scan prior to bedtime
- Use relaxing breathing techniques
When we managing a chronic condition, such as MdDS, good communication is important in all our relationships. These include family, friends and our medical professionals. It allows us to keep informed about our condition and thereby keep others up to date not just with our symptoms but how we are feeling.
Good social relationships are important. Without the use of effective and healthy communication, MdDS may become even more difficult (leading to a rise in symptoms) and problems such as social isolation may arise.
A good skill to learn for expressing the way we feel is the use of ‘I messages’. These allow us to express concerns or feelings such as frustration, anger without blowing up, appearing to blame others or promoting defensive behaviour.
I messages provide feedback safely, as they avoid putdowns, judgement or assigning blame. There are three types of information when providing effective feedback to someone about their behaviour. These are:
- describing the behaviour,
- the feeling the behaviour creates and
- the effect that the behaviour has.
A simple example
“I feel like I’m not being heard” is better than “You never listen to me!” –
Can you see and feel the difference between the 2 statements? Even though they are conveying the same message?
‘I messages’ allow the real problem to be expressed without presenting blame. Thay make it possible to find a solution to a problem instead of leaving another person with hurt feelings.
For more information on ‘I messages’ visit: http://www.encouraging-appropriate-behaviour.com/free-stuff/how-to-use-i-messages.html
Listening is another part of good communication. There maybe times we are so anxious to respond that we don’t really hear what others are saying. Try waiting a few moments after the other person has finished before responding. and always ask for clarification to ensure you understand the other persons message.
Healthy eating has many benefits and may assist with managing MdDS symptoms.
- Being less tired and having more energy
- Helping maintain weight
- Maintaining the chemical balance in our body
- Assist with depression
- Help prevent side effects from medication
- Help control blood pressure
Healthy eating means
- Eating a variety of foods
- Eating meals and snacks regularly. Low blood sugar levels can exacerbate MdDS symptoms
For more information on Healthy Eating visit https://www.eatforhealth.gov.au/guidelines/about-australian-dietary-guidelines
Understanding and Dealing with Emotions
As an MdDS patient, you may experience many difficult emotions. These may include anger, fear, worry, sadness, anxiety and stress. These feelings are common and normal.
We may feel a loss of control over our health, worry about the future and our relationships with other people.
Many of these emotions can feed into MdDS symptoms, exacerbating the sensation of rocking and swaying, thereby making us more limited in our day to activities. This in turn amplifies our stress and anxiety, making MdDS symptoms worse. So a cycle is set.
It is important to idendify the cause of the emotion, rather than the emotion itself.
An example of this maybe:
- ‘I feel sad (the emotion) because I can no longer do as much as I used to (the cause)’.
Here are some suggestions to deal with these emotions.
- Physical activity/exercise (within your own capability)
- Call a friend or talk to somebody
- Post on the MdDS Australia Facebook page – there is always someone there to help
- Get out of the house – perhaps visit a nice park
- Do something nice for yourself
- Write your feelings down.
- Think about the positive things in your life / what you are grateful for. These don’t have to be big things.
If you wish, you may want to explore your feelings further. Writing down thoughts and feelings about different areas of your life, particuarly those you have never addressed before. It has been found by psychologists, that this practice helps you feel and cope better with your emotions and problems.
Working With Health Professionals
We all experience difficulties getting good health care. The main 2 problems are the health care organisation itself. The other involves working directly with your health care professionals.
In regards to the health care organisations, problems we may encounter include:
- Waiting time in the reception area
- Trying to get an appointment to see a specialist may take weeks/months
- Not given enough time when we are finally seen
Probably more importantly for those of us with MdDS, we encounter more problems directly with out health care providers.
MdDS is a rare neurological condition. Many have been misdiagnosed. Fortunately this is changing as awareness of MdDS grows. This has been the aim of MdDS Australia since May 2013. One only has to look at the statistics. https://vestibular.ong/news/02-16-2016/mal-de-debarquement-survey-results
It is important that we convey to our medical professionals (whether that be a GP or a specialist) that they
- listen with patience
- explain technical terminology
- explain any medications prescribed – side affects etc
If they don’t, it is your right to ask!
Help for Friends and Family
We have a Facebook Community Page for family and friends affected by MdDS. There you will also find other useful information.
Please visit our Community Facebook Page HERE