Mother of three, Jane, has lived most of her life with Type 1 Diabetes. So while her MS diagnosis came as a sudden shock, she feels that life has already prepared her for living with a life-changing condition. Here Jane shares her advice to those newly diagnosed with MS.
The best advice I was given
The first thing that I would pass on is a piece of advice given to me by my MS nurse and that is “don’t read or Google too much”! You’ll be learning to live with new symptoms daily and I found that reading up about my condition online was causing me to become really anxious. Try to work towards coming to terms with what is happening now before researching and getting caught up in the ‘what ifs’.
There is great support available
My local MS centre were really amazing, not just for me but also for my husband - Chris. A lot of time the information provided when you’re first diagnosed is about your condition and what you can do to manage. What is sometimes overlooked is that beside every person with MS is a partner, a family member or children.
This is where the MS centre were really great for us, as they went out their way to support Chris in the early days - when everything is new and scary.
You can also find great support in fellow "MSers" that are happy to share their experiences. I found this particularly useful as I was learning to adapt to my new life and to get an idea of what to expect.
One of the best peer support networks I found was a group called ‘Ladies with Lesions’. This group allows women of all backgrounds to share their MS journeys and ask questions. You can find them on Facebook or on their website at ladieswithlesions.co.uk.
Everyone is individual
We’re all given a diagnosis but our journeys are individual from the support we have around us to the treatment options that we chose to engage with.
For me making the decision around my treatment was one of my biggest hurdles. I was relapsing at the time and the cognitive impact of this made it especially tricky to make such an important choice. In a funny kind of way I wanted someone to make this decision for me. At the end of the day though, it’s a really individual choice - it has to come from within.
Putting the jigsaw together
You may start to realise that other little problems that you’ve experience prior to your diagnosis are the result of your MS.
For me it was issues with my bowel, in particular unpredictable bouts of constipation, as well as occasional UTIs. I’d experienced this for maybe 15 years before I was diagnosed. When I realised it was all connected it felt like I’d finished putting a jigsaw puzzle together and the picture was clear!
Since my diagnosis, I’m no longer just living with my bowel problems. I’ve been able to access treatment for my bowel as well as for MS itself.
What I wish I’d known then
At the time that I was diagnosed I wished I could have looked ahead with a crystal ball and reassured myself that it would all be ok.
Find your inspiration
It’s really important to find some inspiration to keep you feeling positive and focused when things are hard.
I have two quotes which I like to think of and they both mean a lot to me for different reasons. The first my husband had framed for me and it hangs by my side of the bed, this is: ‘Repeat after me: I am stronger than this challenge and this challenge is making me even stronger’.
The second one is from an author called Cathy Cassidy, who my daughter and I saw speak at the Cheltenham Literature Festival the first year after I was diagnosed. At the time she said - and wrote down for me: ‘Behind the difficult stuff is the magic, always hang on.’
A new MS role model
Finally, a recent inspiration for me is the actress Selma Blair. She spoke openly about her battle with MS for the first time at the Oscars. She walked the red carpet with her cane and even pointed out that canes are a cool fashion accessory! I think this is really motivational.
She is fab, she’s just so fab! She’s such a fantastic role model and an inspiration for anyone who might be feeling particularly down about their condition.
If you haven’t seen it you should go out and find her recent interviews as they are just great.