When I was first diagnosed with MS in 2008, it was like I’d stumbled into darkness. It felt like suddenly having to fend for myself, but in isolation and with no context. I read like crazy about this new disease I’d adopted, but there never seemed time to absorb enough information to make good decisions and embark on this new life with a sense of control.
Unfortunately, I wasn’t offered any workshops at the time. I knew that there were local meet-ups, but given the vast range of MS symptoms, the different stages of the disease, and the spread of ages within a group, I was concerned I might not find one that was appropriate to me.
So, what to do? Optimising my chances of slowing down my MS and minimising its impact required a plan that fitted with my symptoms, my lifestyle and my motivations. It meant ensuring I was aware of the latest policy recommendations, because I knew that these were not reaching all health care professionals, and that service provision was drastically underfunded and sparse. I felt that I could go it alone, though, because I was a scientist and could understand the science and policy discussions behind the decisions I had to make. But it didn’t quite work like that.
The personal touch
I began collating all these ideas and research findings in my head, ready to put them into practice, but that’s where I got stuck. How could I implement all this when I was already trying so hard to hold down a full-time job, maintain my relationships, be there for friends and family, keep my finances in check, search around for better deals for my car insurance…? You get the gist.
My techniques for dealing with stress weren’t going to cut it anymore, and I could never seem to put my evidence-based lifestyle interventions into practice. But then I started reading blogs by people with chronic illnesses. These were open and honest writings, covering trials, tribulations, and successes - all from personal experience. The writers talked about the impact that stress had on their bodies, and the techniques they use to manage it. They talked about the importance of self-care, of making time for yourself and your hobbies, but also about the realities of prioritising this when surrounded by commitments, responsibilities and a societal belief system that measures worth in terms of constant ‘productivity’.
I knew about the research behind these lifestyle interventions. That regular mindfulness practice has been shown to literally change the structure of your brain, enabling it to tone down its ‘fight or flight’ response. That working with a counsellor can be a crucial step in reducing stress, anxiety and depression, giving you the tools to navigate your new path. But, crucially, the blogs added the personal touch I needed to implement them myself.
Forming new habits
I have been on a journey since my diagnosis. I’ve gone through long-term disability leave, moved to home-based working, and reduced my working hours several times. I’ve pushed to escalate my MS treatment, been active in using services, and appealed my PIP award at tribunal. And these experiences taught me that, without forming new habits, I would never lead a life where I felt in control.
It’s been shown time and time again that being in a peer group improves your chances of adopting new habits. But MS is such a varied disease, because each of us is unique in our symptoms and stages. On top of that, we are all individuals with our own personalities, motivations and opinions, so the fact that we may share a symptom or two does not mean that we will automatically have a connection.
However, the boom in MS blogging means that now there is likely someone out there we can each ‘click’ with. Also, forums can be great sources of help and support, precisely because they are so diverse. MSers have so many tips, suggestions and experiences to share among themselves, and many forum members offer priceless support and friendly accountability, all from a place of personal experience. I found places online where people talked about the problems I was experiencing in a way that worked for me. As a result, I was able to become much more accepting of, and confident in, my new life. I started working with rather than against my MS.
At the beginning of this year, a few ingredients came together, and my own blog was born. I’d been exposed to a multitude of topics on MS forums, plus I had my own experience of living with MS for nine years. I had my scientific eye, and had amassed knowledge from reading research articles and policy recommendations over the years. Charities and organisations were calling out for help in spreading awareness and up-to-date recommendations, and I felt that my natural inclination to consume and pass on information needed to be put to use.
The catalyst came when I was approached by two people for advice within the space of a week. A newly diagnosed friend was distressed as to what to do when she was ‘over’ her cold symptoms, trying to work, but still feeling tired and run down. Another MSer needed help with her PIP appeal. Offering them accurate information with background experience gave them the tools to make independent but well-informed choices. I’ve always believed that knowledge is power and for us MSers, it can be life changing. The result? I made a promise to myself to start blogging.
So here I am, and I’m loving it. MSers in the community never cease to amaze me with their strength, knowledge and empathy, and I’m proud to be able to contribute.
Using social media can truly enable you to self-manage and self-advocate. In the neurologist’s or GP’s office, it can give you confidence to know your choices, to ask about things that you need and have a fruitful interaction. It can empower you to make lifestyle choices that really can improve your health. It can give you the knowledge you need in order to access services or benefits. I invite you to investigate what’s out there and become a more active participant in the management of your life with MS.