Dear Mary,
You have finally gotten an answer.
There is a very good reason why you fall so much, why you are so exhausted, and your brain is so muddled. Why your body hurts and that relentless leg pain you have had for the last two years won’t go away. All the money, time, and energy you’ve spent on the medical profession to get an answer, any answer…now you have it. You’ll get a phone call at 5.20pm on February 14th, 2012, “Mary, you have Multiple Sclerosis.”
You really thought it was a brain tumour, the brain fog was so bad. The last thing you ever thought would come knocking at your door was MS. You will be shocked, you will think the worst possible scenarios, you will spend endless hours googling it. You will become so overwhelmed, challenged and you will quickly be on a roller-coaster ride of tests, appointments, and medications. While on this ride, you will also have to make momentous decisions. Like which treatment to start.
There are going to be demanding times; there will be days, weeks…months of pain, months of challenges. You will begin to feel the physical effects of the disease and it will begin to impact on your life.
Hopefully you won’t get caught up in the vicious cycle of trying to fix your pain and symptoms with prescription medications… but then you will, because you will try anything and everything to ease the pain. It is a symptom of this disease but 11 years ago it wasn’t accepted as part of the disease. You will get so very frustrated trying to get your fears and symptoms understood, symptoms you can’t even find words to describe. And you will learn to fight, to advocate for yourself because if you don’t, who will? And over time, you will learn to choose your battles.
As a mother and wife and daughter and a sister, you will struggle with enormous guilt especially if it impacts on your daily life. You’ll have to learn to depend on people when it used to be the other way around. When you have to finish with work, how do you keep being YOU? MS is taking things away from you that you had taken for granted, parts of your independence, pieces of you….
You’ll try to navigate what’s right for you and what’s right for your family. You do not want to find yourself in a place where you have second-guessed all your decisions, you want to be as independent as possible for as long as possible. You, YOU want to be the one who decides when YOU stop driving (if ever!).
You will try and run away from this diagnosis, like Pandora you will try to put the lid back on the box by pushing your body beyond its limits to try to keep everything as normal as possible. But you can only do that for so long before a price is paid.
If I could reset to that faithful day 11 years ago, I would hope someone living longer or older than me living with Multiple Sclerosis would say to me over a cuppa that…
It is possible to live and be ill at the same time.
It is possible to have an illness and work.
It is possible to have an illness and look good all at the same time.
To lower the bar on myself and stop demanding so much from myself.
That when my emotions are so low, and everything looks bleak, don’t fight it. Sit with your thoughts; sit and they will soon pass.
Reach out to someone you trust and talk.
When your pain is high, and you see no end in sight, remember this is where it is at now. Tomorrow is a new day, and this too shall pass.
Don’t be afraid to talk to the professionals, they are a safe place and listen without judgment.
No matter how many times you fall over, physically, mentally and emotionally, you will get up more times than you fall. You will learn to adapt and change and in time create new possibilities. As St. Paul’s letter to the Romans, verses 3-5 says: “Sickness brings Patience. Patience brings Perseverance. Perseverance brings Hope”.
Yours truly,
Mary, the older lady now living with Multiple Sclerosis