A Life on Edge

Multiple sclerosis (MS) is the breakdown of the nervous system which affects more than 2.3 million people worldwide. This neurological condition can appear in different formats: relapsing-remitting, secondary progressive, and primary progressive. Living with MS is not easy as many people may know. It can disrupt your day-to-day activities and have an effect on your immune system.

My dad was diagnosed with relapsing-remitting MS in 2012. This type of MS can cause people to have attacks of symptoms that may partially or completely fade away. My dad can have various symptoms that affect his day-to-day movements: numbing in his forearm, lesions on the brain, balance, and being unable to walk. One relapse affected his vision to the point he had six months off driving. My dad is a lorry driver. He can also get migraines and become fatigued. Another relapse left him without being able to walk, as it affected his nerves in his leg. He can also have mood swings that can affect his relationships. He is constantly in pain where he has nerve damage on his chest and has open raw nerves that can be agonising.

"It can make me feel tired. I am always in pain and I am always trying to find various ways and coping mechanisms to make the pain bearable. I Cannot walk very far because it feels like I have a dead leg but when I cycle for 30- 40 miles it has no effect. It releases the pain. At present I am in a lot of pain."

My dad is currently going through treatment to restrain the MS. It is not a cure but it allows his relapses to become less frequent and more bearable. This treatment is known as Lemtrada. It is a disease-modifying drug. It is given over two treatment courses with 12 months apart from each. My dad has already completed the first course of treatment. This treatment is considered to be like chemotherapy as it breaks down the cells in the body. During this treatment, my dad was not very well. He did not go back to work for six months as it affected his whole body. He had no immune system and all of his symptoms attacked his body at once. He would spend most days in bed and did not have an appetite or even the motivation. At one stage, the doctors thought he was having a heart attack because of the medicine they were providing him. This treatment took place over five consecutive days at the Queen Elizabeth Hospital in Birmingham.

My dad is currently waiting to begin his second course of treatment. This will start in June 2018. It will only take three consecutive days but it will be more intense. Hopefully, he will not need to go back for a third treatment. This will only happen if the other two treatments were unsuccessful.

In order for my dad to keep himself active and fit, he will cycle to release pain. He does not feel pain when he is cycling. He also is trying to keep fit before his treatment as it can speed up the recovery time. After his treatment, he will need to go to the hospital once a month for the next ten years for blood tests. This is a long, drawn-out process but it will allow my dad to live a full life.

It is National MS day on May 30th, 2018. Let's hope that this blog can raise awareness and give people more of an insight into the experiences of people with this condition.

MS Society