Paula was diagnosed with relapsing remitting MS 10 years ago, after years of experiencing strange symptoms and trying to be taken seriously by her doctor. She tells us how she has turned to mindfulness over the years to help her manage both her symptoms and her anxiety.
Looking back I think my first symptoms started just after my daughter was born. That must have been around 14 years before my actual diagnosis as my daughter is 24 now. After having both my daughter and my son I had periods when I couldn’t lift my arms and my husband had to help me get dressed and undressed. I also had strange sensations such as burning, electric shocks, numbness, the list goes on and on. When I was finally diagnosed I was almost happy and relieved that it wasn’t all in my mind, my experiences were real!
There is a history of auto-immune diseases in my family such as Lupas, Shrogans and arthritis so in a way multiple sclerosis was just another one to add to the family list. My husband and children were all obviously concerned but I felt that they didn’t really understand what it meant to me to have this diagnosis. I remember feeling quite angry towards them for their lack of understanding.
Following my diagnosis I felt quite alone. I had to make choices about medication or no medication, which felt really huge. Initially I tried Avonex and also Copaxone but neither agreed with me. After a year of trying medications, I was in a dark place. I had become Paula with MS. My whole life was about the disease, what symptoms I was experiencing, was I having a relapse and what medication should I be taking. It was a bad time for me, my mood dropped and I was consumed with my diagnosis. I wanted to try a more holistic route, but felt there was very little support available for that type of approach, which made me feel more alone.
I realised I had to take matters into my own hands, that this was no way to be living, I actually felt like I wasn’t living at all. I went back to my meditation practice, which had dropped away following my diagnosis. I started taking it very seriously, almost like it was a medication to be taken daily. I also improved my diet, and made sure I could get out and about more walking in nature.
I first discovered mindfulness 19 years ago when my doctor suggested I look into it for my depression, I was very resistant to the idea but in the end I think I hit such a low point I thought I could give it a go, even if it was just to shut my GP up (in the nicest possible way!). Mindfulness gave me the insight to really be aware of my body and what was going on with it. It’s the main reason I started to notice all the strange goings on in my body. I dipped in and out of the practice until a year after my MS diagnosis where I decided I really needed to find a way of living with this disease instead of it consuming me.
Mindfulness has helped me to get my life back. It’s allowed me to identify when my mind is over thinking things and I’ve got myself caught up making stories up about the future. It also offers me a way to be with my symptoms and pain. I realise I cannot change my diagnosis and what could happen in the future, but I can recognise how I’m responding to these thoughts and come back into the present moment. I am much calmer these days; I have learnt that things are not always how I want them to be, but how I meet those moments is really important. MS is a difficult disease to live with especially as the symptoms are hidden. I still have down days but I definitely surf these moments much more skilfully now. My increased calmness also has the benefit of rippling out to those around me.
I moved to Norfolk just after the first lockdown, my husband lost his job so we decided to take a leap of faith and start a new more relaxed way of life. Just before I moved I spoke with my MS consultant, who said when you move just ask your GP to refer you to a new consultant. Well it hasn’t been as easy as that, I have now been here since October and still have no MS consultant or MS nurse, and only the GP for help.
My mental health has been up and down over the last 12 months like so many others, but my practice has held and supported me through the harder days. I had a relapse just after Christmas which I’m still having some symptoms from, I had no access to help other than the GP who was amazing. When I feel my mind getting out of control, I take to my meditation stool, which I feel is more like my medication stool, after I sit I’m aware of the impact it has on de-stressing my body and slowing the whirlwind of thoughts down. It doesn’t make them go away, but it allows me to calm them down, I liken it to putting a snow globe down and watching the snow settle.
Mindfulness has helped me become more resilient. I can sit and observe clearly through my practice the content of my mind, I feel I have much more insight into the helpful thoughts and the not so helpful, offering me the choice of which ones I’m going to run with. Mindfulness has literally saved me from my over thinking mind.
The practice offers me a technique that I can call upon, I find that what I learn on the cushion is definitely taken out into my everyday life. Through awareness I am able to identify my sabotaging behaviours. Mindfulness has offered me the ability to see the silver linings in situations and a real sense of gratitude for my life and my body. However ill or broken it may seem my body is still trying to do its best for me.
Mindfulness is an alternative therapy which has been shown to have benefit for people with MS. It is a meditative technique that involves learning to focus attention on emotions, sensations and thoughts in an accepting and non-judgemental way. By focussing fully on the present moment rather than on regret for the past or worries about the future, mindfulness helps to break the cycle of negative thoughts and emotions. Some people with MS have suggested that mindfulness helps them to be kind to themselves and put MS into context. Mindfulness is a well-established therapy, with considerable research based evidence for its effects on people with MS. Getting the most out of mindfulness will involve a commitment to regular practice, but you may find significant improvements as a result.
