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World MS Day - Putting caregivers at the heart of caring

Today, 30 May is observed as World MS Day. MS stands for multiple sclerosis, a disease of the brain and spinal cord that affects the central nervous system. A potentially disabling disease, the signs and symptoms vary.

My Invisible MS, that's the theme this World MS Day, the aim being to raise awareness about the invisible aspect of Multiple Sclerosis, which affects people differently depending on the extent of damage to the central nervous system.

MS affects not just the patient, but also the quality of life of the people around him/her. This includes family members, friends, caregivers, all of whom have to cope with the invisible effects of MS in a long term manner.

In MS, nerves that carry signals from the brain to the rest of the body are damaged. The protective covering around the nerve cells is slowly destroyed by the immune system weakening the communication within the various parts of the body and brain. There is no cure for multiple sclerosis at present.

People with MS live with invisible symptoms such as severe fatigue, pain and weakness. Dealing with them is a challenge as much for patients as it is for those looking after their needs. Most caregivers tend to ignore their own health and well-being leading to mental health issues like depression, negative thoughts, anxiety, exhaustion etc. This can make life extremely stressful.

Vishal Mittal , a caregiver, says it is important to remain emotionally and mentally strong to be able to help a person with MS. "First and foremost, understand the agony that a person with MS goes through. Being positive and keeping them motivated is vital to avoid falling into depression, both for caregivers and the patients".

Some days, says Vishal, can be worse than others. "It can lead to resentment and frustration making some days more challenging". He emphasises the need to stay focused and important.

In many cases, caregivers tend to become isolated from others as their duties keep them busy. This in turn affects their quality of life and quality of care they offer.

You cannot look at a person with MS in isolation, it is caregivers that actually play a very important role in their lives. As a caregiver I have experienced mental health problems that are associated with providing long term care to someone with MS. Symptoms such as fatigue, depression and anxiety are not limited to person with MS, they actually transcend directly into the caregiver. - Renuka Malaker, National Secretary, Multiple Sclerosis Society of India

Looking after a loved one is a demanding engagement that takes a toll on the health of a caregiver. There are feelings of exhaustion and guilt and the worry of looking after a loved one. They can also become too hard on themselves, causing more damage than good to their own health and mental state.

Here are some ideas for caregivers to stay positive

- Avoid overdoing your work and follow a set a pattern that involves less stress.

- Accept your mental and physical limitations and make the best of them.

- Don't compare yourself to others, everyone has their own path to follow.

- Keep yourself informed and educated about the condition of the care getter and help them accordingly.

- At times it's alright to feel low, angry, frustrated or upset. Accept the emotions and don't feel ashamed.

- Take support from others, there is no harm in getting help when you need.

- Take care of yourself and then only you will be able to help others.

- Join a support group and socialize.

Anil Agarwal 's wife Sneha was diagnosed with SPMS in 2007. "Initially, the family was shocked as we had never heard of such a disease. There are so many invisible symptoms and conditions that as a caregiver I understand better than anyone else and this gives her much needed confidence and mental support".

Remember that as a caregiver the patient needs and relies on you the most for confidence and support, so it is important to stay mentally and physically strong. As Anil points out, "caregivers plays a crucial role especially in a medical condition like MS where the patient's capacity to cope with the situation is unpredictable and difficult to sustain".

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