When MS Comes Later in Life

This week Mary Devereux shares her experience living with multiple sclerosis, after being diagnosed later in life.

No two people with Multiple Sclerosis have the same symptoms, the same pain, the same cognitive difficulties or mobility issues. They may be similar but they are not the same.

And not everyone that gets a diagnosis of Multiple Sclerosis in later life thinks like me.

This is me

Is there ever a ‘right time’ in to be given life-changing news? I don’t think so. Whatever we have had or done at whatever age, when it’s taken away or has to be changed, not by choice, but because of necessity, you try your best to get on with it. But anger and fear will rear their heads just when you least expect it.

I was 44 years old when I was diagnosed with Primary Progressive MS (PPMS). My life was good; l had a great job, two beautiful children and a great husband.

We had worked hard to get were we where.

In terms of getting diagnosed, it wasn’t that long a process. It took two years and seven consultants until I had an MRI done. That MRI told its own story and it would have still been the same story if it was done two years before. I knew there was something wrong with me but I didn’t know what. I thought possibly Alzheimer’s or a brain tumour.

But a disconnected voice over the ‘phone at 5.20pm on Valentine’s Day told me I had MS. I got such a shock… my whole world rocked.

I ran away from my diagnosis and kept running for the next five years. I kept running until it caught up with me. It took a further three years before I had to walk away from my job.

The guilt is overwhelming and MS consumed ever minute in my head, every conversation. If I wasn’t catastrophizing, I was ruminating. It was endless. All the ‘what ifs?’ and the ‘whys?

They say what you’ve never had you will never miss but I had it all and by god, do I miss it.

  • l miss being the earner.
  • I miss my job.
  • I miss my car.
  • I miss my independence.
  • I miss the life my husband and I had planned going into our old age.
  • Most of all l miss me.

My children miss the old me. They didn’t grow up with a sick Mum. I remember a medical person said to me that it was good they had me growing up without the illness but on reflection, I don’t agree. They were used to me dropping and collecting them, running around like a headless chicken and all the other things we do as Mums. Now that was gone, and they had to learn a new way of life and that isn’t easy. 

They didn’t grow up with MS but now in their late teens, they had to find a way of dealing with massive changes, like they did with my hospital admissions or every time a new aid came in to the house. The stick, the rollator, the scooter. My husband had to deal with a whole new way of life; he was suddenly in charge and that didn’t suit him or me.

There is no good or bad time in one’s life to be given a life sentence of any long term chronic illness. If I got it in my 20s, then my family would have grown up with it versus in my mid-40s, where what they were used to, was turned upside down and taken away from them. Don’t get me wrong, I still have a good life, if somewhat different.  Every day we are learning to adapt to the new us.

My own personal thoughts- I am glad I didn’t know earlier that MS may have been there. But then, if I hadn’t had all those things I wouldn’t have missed them and I do miss them dreadfully. My car, my job, material things I know, but they gave me a purpose; they gave me independence and freedom. I had an identity.

MS has taken my ability to have a decent conversation without losing my thoughts every few minutes. It has taken my ability to jog, to run, to clear my head…so much that I could do but now, I cannot.

With all that said, yes, I am glad I didn’t know that I had MS any sooner because once that door was opened there was no going back.