Burden on the family

As the cooler weather approaches, and autumn is in the air, the ever changing seasons bear witness to the shifting circumstances when living with a degenerative disease. It would be so easy to just "give up" and let Parkinson's take over, devour me, allowing the symptoms to dictate my life and end up as just another statistic. Unless you are chronically ill, you'll find it hard to imagine the huge effort and strength of spirit required in fighting two diseases each day, and trying to live a normal life as possible. I take great strides on my part to maintain some semblance of a regular family household, hence I am often told off for doing too much and over-taxing myself. However my intention is not become a burden on my family, therefore I try to do what I am able without asking for help, whilst remaining positive and cheerful. I hate asking for help, always have done, and probably always will. It's part of my character. I can cheerfully and willingly ask for help with no problem if it's for someone else, but asking help for myself, well that's entirely a different matter.

I came to the upsetting realisation the other night, that I have already become a burden to my family, and to be honest with you, this came as a huge shock. Why is it the people we love the most seem to be the ones who end up suffering. I wish I could magically be cured overnight, and wake in the morning free of these two diseases that rule my life, and be everything my darling husband and daughter rightly deserve from a capable loving wife and mother. But in reality, Gaucher and Parkinson's aren't going anywhere any-time soon. This is clearly my destiny and I cannot change it, but why can't things be better for my family? How can I improve a situation that I have little control over? I am devastated, now fully aware of the strains and complexities encountered by my family in spite of all their smiles and good humour. Life simply isn’t fair.

But what holds us together as a family when the threads of life are so fragile, one wonders how they can barely take the strain? What binds us as a married couple despite great adversity that stares us in the face each day? I would have to say it's love that ties us together. Maybe in the words of John Lennon "All you need is love". Take a moment and read my latest article on The Huffington Post is called "What does love feel like?".