I had to say no. Again.
I didn’t feel good about it, but I knew it was the best decision at that moment. In my head it was clear. If I were to accept the very lovely invitation from my husband to go out for dinner and a movie, I would pay the price later.
I live with MS, and because of Uhtoff’s phenomenon, the heat of the late summer’s day meant I was experiencing more fatigue and pain than usual. So when my husband came home to extend the invite and I had to say no, I ended up feeling even worse.
This is one example of the many decisions I have to make in my daily life living with MS.
When MS gets in the way
I have learned to acknowledge that sometimes the reality of living with a chronic condition means that you just can’t manage certain things. Whether it’s an invitation to a dinner or cocktail party or shopping with your girlfriend (the nice stuff), or not being able to clean your house (less nice, but necessary), sometimes you have to say no. My MS symptoms mean that I have to do things step-by-step and I, like many living with MS tend to spread my to-do lists over several days.
Often, I wake up in the mornings and ask myself: “What’s the most important thing I have to do today?”
“Will I be able to get to the grocery store to refill the fridge without any balance problems?”
“Will I be able to do the laundry, or should I rather focus on cleaning the bathroom?”
And then I have to choose my battles. MS requires this kind of decision making, day-after-day.
A new level of complexity
I am not the only one – decision-making is a hot topic in the MS community, and often we discuss long-term decisions that will an impact on our future. Things like accepting a new job, moving to a new town, or planning a family are important, life-changing decisions for everyone, sick and healthy. But MS adds an element of unpredictability that brings uncertainty and clouds the potential outcomes.
When making these decisions, you have to take so many things into account, and always weigh up the pros and cons of every outcome. There’s also a greater need for negotiation about practical things such as income, treatment, local MS support programmes etc. Researching and analysing every option so that you can make the right decision can feel like a full-time job.
On top of this and in my experience at least, other people often want to weigh in or influence your decision-making process. No matter if I’m making a decision about my medication or whether to learn a new skill (like taking up journalism for example), parents, siblings, partners, and friends all may want to add their two cents.
They may mean-well and try to give advice from an objective standpoint, but do they really understand the reality of your situation? Do they have a holistic view of your circumstances? Are they really able to help and give practical advice?
Tips for making good decisions
In my years living with chronic illness, I have come to use the following tips when making decisions, both important and less so:
- List the pros and cons: Sit down and think about your own needs and wishes and make a list of all the positives and negatives that might arise from your choice.
- Ask for help from a professional: Seek advice from your neurologist or nurse as they will understand your situation and symptoms the most. There are also other healthcare professionals including psychologists and coaches who can support you through the decision-making process.
- Explain your situation to your loved ones: Discuss the way you are feeling with your family and friends to help them better understand your situation.
- Do what YOU want to do: You might make a decision with the help of your partner, but you don’t have to involve the whole world. You should do what you want to do and never live your life by others’ expectations.
- Trust yourself: If you’re convinced you want to do something, do it. Sometimes you have to trust your gut and throw yourself in at the deep-end. After all, life is there for making mistakes.
Decisions must be made carefully and consciously. And they must be made by ourselves.
As the people who are living with MS, it’s us who know what we can and cannot do.
However you make decisions, it’s never easy and will probably bring some sleepless nights with it. But we have to do it and sometimes a neutral person, like a life coach or a therapist could help you make a valuable decision. This is something I do if I struggle with decision-making, and it helps.
UK/MED/19/0291 November 2019