Battling with MS

“Wake up and go buy milk and bread for breakfast. Hurry up! I am getting late for work!’’ yelled my elder brother who was housing me at the time. This was late 1979.

“But it’s still dark and shops are closed,’’ I answered politely.

“What!  It’s 9am in the morning and you are…” I sensed him coming closer to me then suddenly, he exclaimed, “Charles, you can’t see!! Looks like you have lost your sight!” 

Well, I thought it was a bad joke since I had watched TV the previous night. I went to bed feeling ok. I had no health issues. My brother drove me to Kenyatta Hospital where I was admitted.  After two weeks, I regained my sight and was discharged. Life went back to normal, or so I thought.   Little did I know that this was the initial symptom of a disease that would turn my entire life around – Multiple Sclerosis (MS).

Sudden blindness

Three years after that scary experience, I got weak and became paralyzed. The doctors operated on my back. A laminectomy, whatever that means in medical language.  After five months in hospital, I started walking again. That was 1983.

In 1994, I went through the same ordeal. I was paralyzed and underwent the same surgery again. After a while, all was well again, and my life resumed.  

In 2007, MS struck again. I had to go in for what doctors told me would be my last laminectomy surgery.  I was also put on steroid drugs

After a lot of discussions and counseling from my doctor, he told me about my condition and how to manage it. The strand of MS that I have is neuromyelitisoptica. The disease manifests in different ways but the attacks are similar in some ways. 

The challenges

Much as living with MS is often painful, I have taken it as a challenge; a very rough challenge.  Over time as it progresses from bad to worse, I just want to be on my own with some entertainment like music or TV where I can relax,and try to forget about the pain and frustration I endure.  

The pain of being different from other human beings is enough to put you down, no matter how strong one is. Nevertheless, I have to try and face each day as if it was my last as no amount of painkillers can really reduce the MS pains. God forbid if you get a bacterial infection of some wound! It can be unbearable.  At these times, the support of loved ones is priceless – that unconditional love and concern. To walk with you through the challenges that come with MS as you lose control of your body.

Just as the name describes, the disease multiplies its ugly performance with each attack.  It might manifest with changes in walking style, to use of walking aids like walking sticks, wheelchair and eventually being bedridden. I personally cannot get a better word to describe what we go through with this condition.

At times I get angry, and bitter – but then to whom do I direct my anger and bitterness? And for how long?

The chronology of the disease can only be better explained by people like us who are directly hit and affected by it. Yet, it’s a story that at times we feel like keeping to ourselves as it has bitter pains and frustration that is better known by our own selves. It’s only fair for us to also understand what our care givers, spouses, siblings, and friends go though in trying to make our lives a bit comfortable as we strive to come to terms with ourselves and these challenges (not forgetting our very helpful employers).

Prayer

The doctors do their best to help in managing our condition, but one has to accept the situation. Be positive in living with it and most of all, be prayerful. Only God knows what I am going through and has His reasons for my existence. He gives only that which we can handle. I  thank God so much for seeing me this far and I believe He alone has our destiny.

Yes, the disease may rob me of my dignity, self-worth, friends and all the joys of the world, but it cannot rob me of my strong faith in God. It may have endless pains and frustrations, but I cannot give up the fight. God will not let me down in time of need like now. I have seen my share of trials but it is during those times that I also see God’s glory. For example, He gave me wonderful kids who rarely let me down. I can always depend on them to lend a helping hand and keep encouraging me to keep going. My older sons help to ease my financial pressures as they continually assist in ensuring their younger siblings fees are catered for. They are constantly in touch despite the physical distance. God’s grace has kept me alive for over three decades since I was diagnosed with MS – I am now a grandfather.  (I am hopeful I will see more grandchildren).

Family support

I have a strong bond with my siblings, which has strengthened over time. They have been there for me and my children. My siblings ensured that my older boys were visited in school when I was unable to commute to their schools. When they were in university, my brother ensured that they were able to complete their studies. Most times children play a role and are a source of encouragement in coming to terms with MS. Our good doctors also try as much as they can to help and encourage us to move along, we really appreciate them very much.

To win the battle with MS, avoid stress by all means. You have not bribed God to give you good health, so each day if you and your family are in good health, thank God. Do not take it for granted.

I sincerely thank all those who have stood by me, understood and encouraged me. Those who have misunderstood and judged me, I sincerely forgive you.

 Author’s bio

My name is Charles Mochoge. I am 57 years old. I was born in 1958 in Mosocho, Kisii County. I have had MS for over 35 years now. I am still battling with it. 

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