Thursday, 15 September 2016
My beloved little sister and I share something. We both have MS. She has been living with the diagnosis since the tender age of 19, whereas the bomb didn't drop on me until the age of 42.
But there the similarity ends. My sister says that whilst she got the skimmed milk variety, I ended up with the full fat version of the disease. She has the relapsing-remitting form: I have the more aggressive primary progressive type.
Between us we have 50 years of experience in managing our MS symptoms and fatigue (34 years in her case, and 16 in mine). We have had to learn the art of working within our limitations, whilst still achieving our objectives and living a productive life. The learning curve has not always been easy. Many a time, we have been on the brink of doing something, only to be disappointed by a spell of illness at the last minute. In my case, the symptoms are constant, but slowly and steadily worsen over time. No sooner have I adapted to certain capabilities, then the goal posts shift, and I have to start all over again with a reduced set of circumstances. In my sister's case, the only response that is effective during a period of illness, is complete bed rest. Literally to stop everything and rest. This is difficult for her as she has a young son to care for. Meals must be cooked, clothes must be washed and a child taken to school. Life does not stop because mummy is ill.
The area of parenting is the only one where I have sometimes felt a sense of envy towards my sister, given our different illnesses. Whereas she has been able to stay at home and parent her child as she thinks fit, unfortunately I have not. I have had to leave my home and live in a care home, and watch ruefully from the sidelines, as their father makes repeated mistakes.
There are upsides though, to this situation. I get to enjoy their company without having to police their lives as a parent normally would.
Warrior women are my favourite kind of chick. I am extremely fortunate that both my sister and my daughter are this kind of woman. Gutsy, feisty and not afraid to fight for what she believes in, yet only punishing the guilty, never the innocent. It would be difficult to put into words how much I love, admire and respect them both.
I am very fortunate to have them in my life.