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Me at my 66th infusion with my cuddly cow mascot, ‘Moofusion’

Living with MS and mental health conditions

Liz Sheils

I’ve lived with a few mental health conditions for a number of years now, which started before my MS diagnosis.

With the combination of mental and physical health symptoms I struggle to manage them.

Here’s why…

Day 1: I feel awful today

It’s like I’m locked in a dark room with no way out. I feel incredibly low, anxious about everything, and angry at being stuck here. Nothing can brighten the room.

I close my eyes but I cannot sleep. My thoughts are racing. There is no peace. I can only hope that tomorrow feels better.

Day 2: The door of the dark room is open

I can step out into the light. My anxiety feels manageable and my mood has lifted a bit. I look around and feel hopeful about the day ahead

As I take a few steps forward I notice how bad my balance is and how unsteady I feel. Perhaps I’ll use my wheelchair today. I sit down but self-propelling does not feel like an option. I am exhausted. My body aches. My legs feel like they are on fire.

I accept the challenges of my body today and decide that I will lie in bed and read. However, my vision is also affected today, my book looks blurry and each page has a double. I don’t feel like reading each page twice!

Perhaps I will try to sleep, only my physical pain makes it difficult to relax. There is no peace. I can only hope that tomorrow feels better.

Day 3: The worst day so far

I’m locked in this dark room again but this time my physical symptoms are trapped in here too. I am imprisoned by my mind and body. What can I do?

Everything feels pointless and unmanageable. As I lie here in this locked room I crave peace. I can only hope that tomorrow feels better.

Looking for a way to manage difficult symptoms

Each of the example days above are difficult. On day 1, I am struggling with my mental health symptoms, day 2 brings a mountain of MS symptoms, and day 3 is a toxic mix of both mental and physical.

What I need is ‘day 4’, where my mental and physical health are feeling okay. I’m not seeking perfection but something manageable.

However, all these symptoms are so unpredictable which makes it impossible to know when ‘day 4’ will arrive.

Finding the right approach for me

To date, I’ve tried five different anti-depressants over the past seven years but rather than helping me they frequently caused more side-effects.

I’ve also had some therapy but this has always been hard to access and time-limited. My most recent attempt to find therapy has been exhausting and unfulfilling. I often feel like a ping pong ball that gets batted from one service to another with little help.

So, what am I left with? How do I cope with the above?

There is something that has no side effects for me, or waiting lists. It’s free, it’s legal, and we all have it. Sound mysterious? It’s breathing, mindful breathing in particular.

What is mindfulness?

Mindfulness is not about having an empty mind – this is not possible! We all have thoughts, and although we cannot stop them, mindfulness helps to change our reactions to these thoughts.

I may think “I am so unhappy” and more often than not this thought will end up cascading into many other thoughts. Before I know it I am feeling extremely sad and anxious. Mindfulness helps me to notice the thought, “I am so unhappy”, and to try to let it go by.

Leaves on a stream

One practice that I find helpful for this is imagining myself sitting by a fast-moving river. As I sit there I notice leaves floating by down the river. Each time I have a thought I place the thought on a leaf and let it go.

Even if the same thought comes back I put it on another leaf and I may do this again, and again, and as many times as necessary. Here’s a good 3-minute YouTube video which explains this leaf practice

I find this leaf activity a good way to relax and to calm my thoughts down.

Thoughts can be so powerful and distressing but it is important to remember that thoughts are not facts. If I think I am a banana it does not mean I am one!

Helping me focus on the present

Mindful breathing helps you focus on this moment, right now. You don’t need to think about what has happened or what may happen in the future. You focus on now. This can help us to reduce re-playing the past or worrying about an unknown future.

Mindfulness is a tool which I use each day and it goes a little way to helping me manage both my mental and physical symptoms, and brings day 4 a bit closer to reality.

Read more about mindfulness and MS

Looking for emotional support? Contact our MS Helpline on freephone 0808 800 8000 or email [email protected]. We’re here Monday to Friday, 9am to 7pm except bank holidays.

 Picture: Liz at her 66th Tysabri infusion with her mascot, ‘Moofusion’