Quality of Life – redefining the parameters

Getting the best Quality of Life is a big part of your life if you have MS, and it really varies from one person to the next, based not only on your disease progression but also personal circumstances. Quality of Life for a young mother who wants to care for and play with her children might be quite different than it is for me, for example.

As we all know, I’m in a wheelchair. I regularly hear people say that they “couldn’t cope” if they were in a wheelchair or that they “would have no quality of life” in a wheelchair. Today’s blog post from the team at Bart’s deals with exactly this, which you can read here. You can probably pick my response in the comments! I have never had any problems dealing with my wheelchair psychologically because there hasn’t been another option. I found it liberating rather than limiting.

I do feel that my quality of life has taken some major knocks over the last year. The progression of my cognitive fatigue means that I cannot be as involved in life outside my house as much as I would like. No concerts or even listening to music, and for a former music teacher, that’s hard. Eating out becomes a challenge, because of the noise and activity in a restaurant. Very limited access to shopping is not so difficult to deal with mentally(!) as I’ve never been a great lover of shopping, but it’s another job that my husband now does alone whereas we would have done it together. And one less thing for me to have input to. Fancy a meal based on something you see spontaneously in the grocery store? Doesn’t happen for me. Like shopping at the farmer’s market? Doesn’t happen for me. Need new clothes? Buy them online and hope for the best, or plan to wait for a “good day”.

I sort of feel like the beginning of the show “Without A Trace”. Each week, someone would go missing. In the opening of the show you would see them in the last place they had been seen before they went missing, then they fade away. I feel like I’m fading away from outside life. How to cope with that? Start this blog. Make the most of the opportunities I do have. Look for assistive technology to help me as much as I can. Redefine the parameters I live by.

The reason for this blog post was partly the Bart’s blog, but mainly from a situation that happened this week. A close friend’s mum has MS which is in a very advanced stage. She has no independent movement except for the fingers on one hand. On top of that, she has been diagnosed with cancer. The oncologist asked her to describe her day to day routines. Hearing the limits she is under, the oncologist replied that if that was her quality of life she wouldn’t treat the cancer. My friend and her mum were shocked. This lady is certainly not ready to die and wants to fight the cancer. For me, the biggest issue here is the attitude of the oncologist! Surely the question should have been to ask this lady how she feels about her quality of life, rather than to project her own feelings into a situation she has no ability to understand. Quality of life can only be judged by the person living it.

Attitude has a large part to play in dealing with your quality of life. I choose to see my glass as half full and to make the most of every challenge that comes my way, knowing that there are many others who deal with far greater challenges than I have. If they can do it, so can I.  It’s not easy and certainly I have times when it’s difficult, but for me, it enhances the quality of life that I have.

Photo of Stephen Hawking
My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Dont be disabled in spirit as well as physically


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Michelle in wheelchair with lightsaber fighting Dart Vader