The MS Society held a brilliant event in Swansea yesterday, ‘Living with MS’, which I persuaded my long-suffering boss to drive me to with the lure of Welsh cakes and a nice lunch.
The event was interesting and engaging and was also a celebration of how far we have come in our understanding and treatment of MS since the Society’s inaugural meeting sixty years ago.
To put this into perspective, just twenty years ago there were no disease modifying treatments for MS. Today, there are seven, with four more on the horizon.
The talks and flow of information at the event were fantastic, but what I enjoyed more than anything was the support and sense of belonging. MS can be a very isolating illness affecting every area of life. As a single parent (yup, get the violin out), there are long evenings when I am alone with my fears and jumbled thoughts, without someone to rein me in and help keep things on an even keel.
To be surrounded by other people living with MS is comforting. I feel accepted and less alone. Sharing stories and laughing with each other in the face of MS is balm for the soul.
I went to a workshop about ‘Looking after yourself’. Listening to other people speak reassured me that my thoughts and fears are not unique to me – we all struggle in some way or another, whether we are newly-diagnosed or have lived with MS for decades.
Lunch was an opportunity to catch up with old friends and spill coffee down my top, just in time to sit on a question and answer panel about family life with MS. As this was at the end of a long day, I was ever-so-slightly tired and I’m sure I rambled incoherently about MS and The Teenager and how we had adjusted to life with MS.
We rounded the day off with donuts and more coffee before heading home. I took away the thought that even though each of us with MS copes in our own way, we all know we are in it together.
I too regularly spend long evenings in thought, often about my fears, for what lies ahead and what might have been, also with no one to jolly me out of it.
My husband on the other hand, spends his evenings chuckling in front of the likes of Dad’s Army – oblivious to how I am spending mine!
It is most definitely handy having a man about the place for certain things I can’t manage, but emotionally – nothing. He is pretty clueless about ms and has shown no sign of changing that.
Your day out sounds wonderful and I am glad you felt less alone. I hope that once my dx is officially confirmed I will be able to join a local group and spend time with others who understand what I am going through, I really need that right now, and I hope that I can offer something in return.
I have a 3hr mri coming up so hopefully will learn something very soon. It is encouraging to learn that treatment options are on the rise.
Hi Julie,
So sorry to hear to feel alone. I can really understand how you’re feeling and it can be pretty darned lonely and soul destroying.
Please, please go to your local group NOW!!! I joined mine way before I was officially diagnosed. I knew it was inevitable and although some people were a bit sniffy as I hadn’t been diagnosed, it was a great way to find out about all the support that was out there.
I spoke to many people during the whole diagnostic process and they supported me and gave me information. So much so that by the time I was actually diagnosed and invited to a Newly Diagnosed Information day, I felt I was way past the point of needing to attend.
Honestly, there is a whole load of support out there. Are you on Twitter? That’s a brilliant community full of people at all stages of the diagnostic journey and beyond. The MS Society also has an online forum for people in Limboland, which I used a whole lot. Brilliant for information and reducing loneliness.
X
p.s. feel free to email me if you need any further info!! You are most definitely not alone going through this.
Oh thank you, you are very kind. I haven’t been on twitter before, I may take a look. I’ll definitely visit the forum though, that sounds just the ticket.
There is a local ‘newly diagnosed’ group I have been putting off till it’s official, though both the neurologist and stroke doctor have told me it’s ms, but I am told this scan coming up should tick the last box for a dx.
Thanks x
You’re more than welcome – I went through a really bad time and honestly, the forum was a lifesaver for me. No question was too ‘silly’ or small. Look out for answers from Rizzo on there (hope she’s still there!). She knows just about everything and is really helpful. She took a lot of time answering my questions.
I really do think someone needs to publish a booklet explaining the diagnostic process in much more detail. I have had a wee look at the info I have and they do seem to skim over it somewhat. I never knew what the McDonald criteria was and why my neuro couldn’t diagnose me until I had another ‘official’ relapse.
Twitter takes a bit of getting used to, but stick with it. I held off for ages, thinking people just tweeted about what they had for dinner, but it’s much, much more than that. It’s a brilliant, bang up to date source of info and support.
I really hope you join the group. Not all groups are great and some are downright depressing, but with a bit of time, you’ll find a niche that suits you. See if your local MS Society is running an event and you can get to chat to some people who can let you know of other groups in your area.
Good luck with the mri and keep in touch!!
X
I’m sorry you feel alone as a single parent. I’m pretty sure feeling alone and scared are part of this journey and certainly are not eliminated by being married. Not that it isn’t wonderful too, but marriage is hard stuff and further complicated by the dependency and emotions of a chronic illness. The daily communication required is necessary, but often intense and painful. You can’t fight DNA, and learning to work with it is an art with a steep learning curve. I hope you both find the love and support you need. Forums and events and blogging=great stuff.
Hi Kerri,
Thank you for your comment! Looking back on the time I was married, I’m now not sure which was lonelier, lol. It’s been a good part of the journey for me, to be alone and work out my thoughts. Everything has changed in the last two years and am still working through it!
Sometimes though, it would be nice to make dinner with someone or have a chat about my day. The cat is bored of listening to me. Who knows what the future holds?!
X