Mindfulness / Mental health
MS takes a heavy toll on your mental health and sense of self. My care team in St James’ includes a psychiatrist and psychologist. As a result, I now take antidepressants to help my mood and have taken lots of mindfulness courses. I speak to my therapist regularly, which helps me to sort through the mess of thoughts that go through my head.
So, what would I like younger me to know about this? I would like to tell her that understanding your own mind is vital. Taking time to contemplate in a positive way is never a waste of time. Be open to speaking about your illness and taking advice from others. Try to be in the moment and enjoy the little things. Appreciate being able to go for a coffee with friends or talk to someone on the phone.
Also, antidepressants are not a shameful thing, they are helpful when you need them like a painkiller when you have a headache. Don’t rule them out because of negative preconceptions.
Sense of purpose / meaning
I have struggled with this issue for years. It is so hard to imagine a sense of purpose for yourself when you don’t fit into societal norms. I recently read “Man's search for meaning” by Victor Frenkel. I’m not trying to compare myself with someone suffering in a concentration camp, but he suggested that people in the direst of situations can find meaning and gave the example of bearing your suffering with dignity. This really resonated with me. I can go through life with MS, but I don’t have to be defined by it or be miserable.
I have looked at what is important to me and that’s the people in my life. I can still be a good friend, partner, daughter, and sister. I can be a support to others with MS and share what I have learnt.
My advice to younger me would be to read that book earlier! You are useful and meaningful just by being you. Stop clinging to what you thought you should be and accept who you are.
Value and nurture relationships
MS isn’t the end of your life, it’s just different now. The most helpful advice I can think of is to engage with people. Be open and vulnerable with the people in your life. Talking to other people reminds you that it isn’t all about you. It actually helps to hear about life from other angles. Everyone has difficulties, being there for someone else will make you feel good and remind you that your problems aren’t all there is in life.
MS has given me the opportunity to be part of a wider community of people who understand. We care for each other, offer support and share experiences.
Stay active
If at all possible, stay active, this doesn’t always have to mean physically active. Exercising the mind is just as important as the body. Join online classes and groups to keep engaged. I have a Spanish class and book club to keep my mind going and a positive side effect is the lovely people you meet while doing these things.
Being physically active though is extremely important. I know you will take part in any available classes but please try to leave the house every day. It is a slippery slope, once you stop going out or being physically active it is incredibly difficult to restart the habit as it becomes difficult and scary.
Be proactive with medication
Don’t be passive about your health or care plan.
I was under the misconception that I should wait to use the heavier drugs until I really needed them. This wasn’t entirely my fault as the prevailing strategy for MS medication when I was diagnosed was to start on first line drugs and move on to second line when they stopped working. This thinking has changed. Rather than allowing MS to progress and to possibly accrue disability it is now believed that we should treat the disease hard and fast from the beginning.
I was slow to change to Tysabri when it was first suggested. Maybe making the move earlier would have slowed progression, but who knows.
Accept help
Stop second guessing when people offer to help. If you saw a loved one struggle you would be happy to help, so let them help. It’s not really about you, they will feel good that they could do something for you so you’re making them feel good really!
To sum up
My last piece of advice I would like to pass on to younger me is to stop stressing. You’ve got this. You didn’t have any of this knowledge or insight before, but you got us to where we are now and that isn’t bad at all. Just be you, be open, inquisitive, and inventive. This is a difficult situation. Just keep doing your best and thanks for that.
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