The sliding scale

So, since being diagnosed I have been asked on several occasions to rate my quality of life in various ways using a series of questions on a scale of 1 to 5… I am sure you are familiar with the questions I am talking about.

They ask about things such as

  • how you generally feel about your health
  • how you feel compared to a year ago
  • how much you feel your health limits your daily life
  • how much your health has affected you emotionally
  • how much pain you have experienced and how much it has impacted on you
  • how you feel about your sex life
  • how much your health impacts on bowel and bladder functions

Interestingly, they also directly ask you to rate your quality of life from 0 being the worst possible to 10 being the best life possible.

When I was first diagnosed, I know that I rated the quality of my life really low down giving myself a 2 or 3 out of 10. If you asked me today I would probably say that I am around an 8.

What’s changed?

Apart from feeling slightly better due to being medicated now and so being more stable and having less relapses than I was early on in my diagnosis, I don’t think that the reason I rate the quality of life as higher is a physical thing. I have been thinking about this and I believe it comes down to two main things

  1. Acceptance of having MS which has come with time and understanding of the new me
  2. A change in expectation and a sliding of the scale to find a new normal

So what do I mean by that?

Well, I think that it has taken me at least 4 years to fully accept that I have MS and be ok with it. I suppose getting into writing this blog is part of me fully coming to terms with having the disease and being ready to share that openly with the world. I still have the same pain, weird sensations, bladder issues, debilitating fatigue, memory issues… (endless list…) –  but I have accepted that those things are just part of me. I don’t like having MS, but it is here to stay and I have to work with it and not against it. I am not sure that you ever fully accept that you have MS, but I think I am as close as I can be to that. Also, there are some things that have happened as a consequence of having MS that were really great, and I doubt that they would have occurred had I not been diagnosed… more to come about that in future blogs though.

Secondly, I have had a change in expectation. So, this is where the sliding scale comes in – what was previously a 3/10 (where I would consider MS as the biggest factor in my life)  is now a 7 or 8. Things that would have lowered the score significantly before, such as pain, fatigue and mobility problems are now part of my normal. Having those in the background just become part of the everyday, if I feel better one day – brilliant, if I feel worse the next – that’s pretty pants. I would say that I really enjoy my life in spite of having MS. Over the past 5 years or so, the scale has slid upwards due to this readjustment, and the fact that it is only a part of who I am, and how I value my life.

What’s the problem with this?

So that’s all great but it does have it’s drawbacks. When you are assessed using these questionnaires, it can lead some of your physicians and medical support team into a false sense that everything is ok, even when you still need more support in place, or you do start to have a rough time. Having a background of symptoms that never go away, I often forget to mention these to my support network even if I am really struggling.  I have noticed that I don’t always recognise when I need to ask for help because my scale has re-adjusted (I am always comparing how I feel now to how I have been at my worst)

Anyone else find this? I would love to hear your thoughts 🙂

For the full series of questions asked to assess Quality of Life, visit: Multiple Sclerosis Quality of Life Questionnaire and for supporting information visit the MS Society

2 thoughts on “The sliding scale

  1. I fill these out as part of a clinical trial I am on. My nurse thinks it hilarious as I refuse to be positive, as I think they are such ridiculously phrased questions. The ones asking what I think of my health especially. Well, gee, let me see, I have a chronic neurological condition with no known cure at present. I guess that is a no. It makes me wonder about the thought (or lack of it) of the people that compile the questionairres.

    Like

  2. Great blog Zoe. I just finished Jo Brand’s book Born Lippy. She keeps advising to ’lower your expectations’ in order to be happier. In a really funny way. I identity with a lot of what you say in that I no longer try to fight my MS. I also hear you about readjusting how we percieve our symptoms. Keep writing! Enjoy your weekend x

    Liked by 1 person

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