As you all know, I’ve been doing the Up Close & Personal series of blogs, interviewing several of my MSer friends about their own experience of MS and what it means for them in their lives. We are all so different, and I wanted to know about their journey to diagnosis, their symptoms and things they struggle with, anything positive that’s come from being diagnosed and what medication they take. MS is such a varied disease, there will always be someone who knows what you are going through and will be sharing the same symptoms as you somewhere.
One of my weirder symptoms was the feeling of a red hot poker being shoved up my bum… it came/comes on out of the blue, is super intense and passes really quickly. When it first started happening, I remember feeling really embarrassed and quite ashamed that I was having these unusual feelings… I felt quite alone in my symptoms. Anyway – I went to MS Sessions, which is actually where I met Kirsty… and I met a guy (I won’t mention his name) who said he had exactly the same issue as me! It made me feel so much better about my shooting bum hole pain.. and he felt the same.
I’ve kind of been hoping these blogs with other MSers will do the same for some of you.
So back to Kirsty… Kirsty is a pretty crazy Scottish lady, and she was diagnosed when she was younger than most. In my mind that means that she’s pretty experienced in the world of MS. I feel pretty lucky as we both have the same medicine, so I know I can always ask her questions about it if I am unsure about something and want to know if she has experienced something. Like i mentioned, I first met Kirsty at MS Sessions, a seminar/conference thing in Prague for young MSers to come together, make new connections and learn more about their illness. We had connected beforehand on social media and then we met in the airport in Prague for the first time.
To say it was a blind date would be an understatement – the fact we didn’t know what each other looked like resulted in us walking around the airport looking for a random stranger for about an hour!! We had agreed to meet by a massive Christmas tree near the entrance… both of us were by the Christmas tree, and neither of us could see one another. When I look back and think about it, it must have been like something from a comedy scene.
Anyway – after some confusion we managed to work our we were in completely different terminals!! Why we had never considered this – Heavens only knows.
I feel lucky to know Kirsty – I feel like we’ve gotten to know one another pretty well despite living really far apart. She’s always up for some banter, and is never one to hide what she thinks!!
So thanks Kirsty for taking part in the blog ☺️
When were you given your official diagnosis of Multiple Sclerosis?
2010, just after I moved to the mainland and started uni! Good timing!
Did your diagnosis take a long time?
No, it was super quick because my Dad was friends with a neurologist so he snuck me in for an appointment. It was very handy!
What sort of symptoms did you experience before your diagnosis that led you to go and seek medical attention?
I lost the feeling and use of my arms and hands and I lost the feeling in my legs. I threw a bowl of super noodles all the way up a wall and over all my desk when I was in halls because I just lost the use of my arms. It was pretty scary! And then I left halls for about two months and came back and the noodles had gone all crusty. I sometimes still find bits of noodles on my jewelry!
What tests did you have to get to your diagnosis?
I just had an MRI! My brain was so messed up I didn’t need any lumbar puncture, thankfully.
What was your initial reaction on hearing the news that you had MS?
I was pretty glad that there was an actual something wrong and not just me being dramatic! My Dad was glad that I didn’t have a brain tumor.
What sort of symptoms do you experience on a day to day basis now?
I experience fatigue, pain, and brain fog on a day to day basis. Brain fog is the worst one because it stops me being as organise and proactive as I would like.
Which of these would you say are the two symptoms that bothers you the most?
Brain fog is the worst one, with fatigue a close second. It’s hard to do things when you have either of these symptoms. I want to be super organised and on top of things, but my brain won’t let me.
What disease modifying therapy are you on? If you are not on a disease modifying therapy, please can you explain why you have chosen this route to manage your disease.
I am on Tysabri, I have been for 6 nearly years now.
Have you noticed any side effects from your DMT? What is your experience of your DMT?
Not really no! I love Tysabri, it keeps me well and it doesn’t have side effects for me. I like that I get to have one day every six weeks where I have to just relax and take it easy. I am on a six weekly program because I am JC+ and so I am required to space my treatments out more and have more frequent MRIs.
What other things do you do to keep yourself healthy? (Do you follow a particular diet, do exercises, take supplements, meditate, go to any groups etc.)
I take a lot of vitamins! I don’t really do much else to stay healthy to be honest, which is terrible. I would like to be ablebl to exercise more but I’m always so tired after work/uni work.
What is the worst thing about having MS?
The worst thing is the brain fog and also not being able to exercise properly. I would really love to be able to go for big long bike rides or go climb Munros or go do water sports. I know I could so those things if I built up to it very slowly, but it’s a bit of a pain in the tonsils and you have to start from scratch or you are set back by illness or a busy period or a holiday or whatever.
Is there anything positive that has come from having multiple sclerosis?
I have met lots of lovely friends through Shift.ms, and I have gotten to go on holidays to London a few times and also once to Prague!
What are your top three tips to someone who has just been diagnosed with MS? Or, what would you say to yourself if you could go back to the day when you were just diagnosed?
I would say that they should join Shift.ms, honestly that’s the first thing I say to newly diagnosed people. I would say don’t believe everything you read on the internet or that people tell you. And I would say don’t give up on your plans/goals/dreams just think of a way to achieve them that incorporates MS.
MS has been in the media a lot recently, with stories in soap operas and the news coverage of Selma Blair. Do you think this is a positive thing for people living with MS? Why or why not?
I am.not sure, I think that when a person with MS dies or has a terrible life on a soap opera it’s not great for MSers because then people just worry about you more. I think Selma Blair is a badass though, so is Jack Osbourne. I think Jack is an especially great MS role model because he travels the world and goes on adventures and doesn’t let his MS stop him.
Do you use any disability aids to help you with day to day living? What are they and can you recommend any to people who might be reading this?
I don’t really use any, I just wear really good boots and have to have a very comfy bed!
Right peeps – that’s it for the Up Close and Personal – let me know what you’ve thought. Please share your comments & feedback. I do let the guys I’ve interviewed know what you’ve commented and pass on any questions, so get in touch.
I will not be posting for a couple of weeks because I will be swamped with personal things over the new few weeks and won’t have time to write. Catch up soon. Z