The view from my wheelchair

 

It has been several years since I last contributed to the parish magazine. I am now able to resume writing again and thought that the first of these monthly contributions should be a brief account of what has happened in my life in the last few years since I was a sidesperson and active member of the congregation.

 

As some of you may be aware I have been diagnosed with Multiple Sclerosis, which is a disease of the nervous system that has three levels of severity. Most people begin with the Relapsing Remitting MS diagnosis which means occasional relapses followed by weeks, months or even years of remittance. For many, nobody realises that they have anything wrong with them as the symptoms can be hidden, and people can go on living normal lives and going out to work without the disease affecting them. They do not look unwell so people assume they are healthy.

 

The second level of severity is Secondary Progressive MS where the relapses get more severe and there are no more remissions. With this level the symptoms increase and you find yourself losing abilities and never regaining them. The third level of severity is called Primary Progressive MS where the primary functions gradually cease and you get much worse.

 

I was diagnosed with Relapsing Remitting MS in 1989 after two years of tests and numerous admissions to various London hospitals. In the same year, I became a mother and I an extremely glad that I ignored medical advice at the time and had my son. The advice back then was that the exertion of bringing up a child was not good when one of the symptoms of MS is a lot of tiredness. It is perhaps worth pointing out here that there are many different symptoms of MS and no two patients are the same. I have to say that yes, in those early years it was exhausting especially as I was a mother who wanted to be at home and spend time with my son. As he got older I sent him to nursery and later to kindergarten to begin mixing with others and learning to share as well as some simple lessons. I was able to return to higher education and am proud of the qualifications I have since gained. This was cut short when the MS symptoms made regular attendance and studying impossible.

 

Some of you will know I married Brian at St. Peter’s in June 2001, but few will have realised that my wheelchair was ready in the background as walking was becoming difficult. Later that year I received the devastating diagnosis that I was now in the Secondary Progressive stage of MS and would be using the wheelchair regularly within a couple of years. I was told to expect pain levels and medication intake to increase. Sadly that prediction came true; walking and climbing stairs became very difficult,

 

I had various aids and adaptations in the house to make daily life easier, including grab rails and a stair lift. I spent much of the next few years confined mostly to one room and seldom left the house. In 2004 this began to change when a close friend began taking me out and giving me things to look forward to such as theatre trips, walks/pushes in countryside round Anglezarke and Entwistle reservoirs, picnics and dinners all designed to get me out of the four walls.

 

My husband was grateful that someone realised that I needed to get out and enjoy the company of friends, giving him a break as he was looking after me every day and doing a full time job at the same time. This lasted until 2006 when he chose to walk away for someone who was normal, leaving my son to look after me with the help of friends. I had to move house as my landlord would not accept housing benefit.

 

Although the initial break-up of my once happy marriage was painful, it has proved immensely useful in one way, because it enabled my son and me to move to fully adapted housing where my wheelchair can move around easily. The house has a through floor lift which is far safer than the stair lift ever was. The move has also eased the worries of my close friends who continue to provide practical and emotional support, strong shoulders to lean on and genuine deep friendship as I learn to live with the worsening symptoms of MS and try to enjoy life as a single mother once again.

 

I am sure there are many at St. Peter’s who can relate to much of the above, but find putting it into words difficult or embarrassing. Admitting we have mobility problems, or need help with things we all once did easily is not something English people do. All too often we try to grin and bear it until it eventually becomes necessary to give in and get help. I do not think that this is confined to older people and it is just as hard whatever age we are.

 

Lynn Marsden