In case you missed my last blog – I mentioned that the next four blogs released will be from my friends Dee, Grace, Joan and Kirsty who will be sharing their own experiences of living with MS. Although I love sharing my experiences with you, one of the things that I found most comforting when I was first diagnosed was hearing that other people felt the same and had been through similar experiences. All three of my friends lead incredibly different lives and have really unique experiences of their MS journey.
This week, I would like you to welcome to Dee, London. I met Dee through a charity that we both volunteer for and although I have never met Dee face to face, I feel as though I know her really well. I would love to meet her face to face soon though. I would say that through our social media connection, we are able to provide one another with support and opportunities for non MS related chatter. Whenever I feel blue, I know Dee will have something funny that she has found on YouTube or BuzzFeed 🙂
When were you given your official diagnosis of Multiple Sclerosis?
I was officially diagnosed in 2003 but unofficially in 2002.
Did your diagnosis take a long time?
Yep. And it was ridiculous. Because this whole thing started the Summer that I was about to start uni, my address changed. One department had my mum’s address and another one had my new address, so some genius decided it would be best if they didn’t send my MRI results to either, and just leave me hanging for a year.
It actually took months of letters and phone calls to get an actual diagnosis and they were just really blasé about it. At this point, I was failing uni but couldn’t get any support because, officially, there was nothing wrong with me.
What sort of symptoms did you experience before your diagnosis that led you to go and seek medical attention?
I initially went in because I just woke up mostly blind in one eye. I was 17 and confused but figured seeing the optician would sort it out. The optician told me that my eye was fine – with which I obviously disagreed – and sent me to the eye hospital because he suspected that something was up with my optic nerve.
What tests did you have to get to your diagnosis?
At the eye clinic, I was seen by the doctor who would end up being my consultant for the next decade. He examined my eyes and asked me questions about stuff like spasms and pins and needles. From my answers he said that we might be dealing with multiple sclerosis and requested an MRI and further eye exams.
In a document that I didn’t see until over a year later, he wrote down that my prognosis was MS -from day 1. I barely thought about it – I was more concerned about my eye, going to Reading Festival and uni – but he knew right away.
What was your initial reaction on hearing the news that you had MS?
By the time I got the actual diagnosis I was more relieved than anything: there was something wrong with me and it had a name. I was angry at the hospital but spent more time consoling my family than I did processing my own feelings.
What sort of symptoms do you experience on a day to day basis now?
Right now, it’s difficult to untangle which things are MS and which are something else. In hindsight, Depression was always a thing in my life and now I can see that the MS and Depression have been in cahoots for a long time, just tag teaming me.
There’s always fatigue (I’m in the sunny garden right now and kinda just want to go get back in my bed), bad balance, problems with my eyes. I also have foot-drop, so I have a tendency to fall on my face in the street. I’ve had a few urinary accidents, this year, so not happy about that.
Which of these would you say are the two symptoms that bothers you the most?
Although I have to use walking aids because of multiple relapses affecting my right leg, I’d say that fatigue and cog fog are actually my biggies, day-to-day. The stick is the most visible thing to other people but feels like it has less of an impact because my mind was always my best asset and losing that knocks me through a loop. I struggle to concentrate, am worn out by doing laundry and my memory is inconsistent as hell. My life plan involved me being some kind of writer but I couldn’t tell you the last time I was actually able to sit down for half an hour and write words.
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 was initially on Avonex, and that lasted 9 years. Now, it has been about a year since my second round of Lemtrada (alemtuzemab)
Have you noticed any side effects from your DMT? What is your experience of your DMT?
The Avonex was icky but it seemed to do the job until it didn’t anymore. The day after injection was pretty much a write-off because every bit of me was aching – eyeballs and bones, included,
Lemtrada sucked all of my energy out of me for quite a while and my appetite still hasn’t recovered, not that I’m complaining about the 3 stone that I lost! I wasn’t best pleased with my hair thinning at the front, though – having your dad’s receding hairline is not a great look.
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’ve always found the diets and protocols that claim to fix MS to be contradictory and slim in evidence, so I’ve never followed any particular diet. I am intrigued by recent findings about intermittent fasting and autoimmune disease, and it isn’t a huge departure from how I already eat. I try to not eat after 7pm but am not religious about it, particularly not when I’m being social.
I supplement a fair bit, partly because there’s no way that I get enough nutrients in my diet. I take a general multivit, omega 3, evening primrose, iron, biotin and B3.
I’ve been really slack with exercise this year. When I’m on the ball, I use my Nintendo Wii and Youtube to workout at home, and add more Pilates moves to my physio routine.
I meditate with Headspace pretty inconsistently but have been doing it for years and recommend it to everyone.
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?
The only proper aids that I use are for my mobility. Over the years, I’ve grown a little collection, so I have my choice of walking stick, foot-up or F.E.S on any given day. Mostly, I just use gadgets or switch up what I buy to fit around my changes. My fingers often become a bit difficult, particularly when cold, so switching to electric toothbrush, buying my garlic and ginger -pre-crushed, using a mini food processor instead of chopping are just small things that make my life easier.
My Nintendo Wii is also really good for exercise when I’m not really feeling up to anything heavier. I like brain and language games to keep the cogs turning, and bullet journal and smart phone keep me able to somehow function.
What is the worst thing about having MS?
For me, it’s the uncertainty. Anytime I feel something different, I question whether I’m having a relapse. I don’t make plans more than a year into a future because I don’t feel I can commit to things that for ahead because I don’t know how I’m going to be doing. Even now, not being able to do all of the things that I could maybe a year ago is tough so I don’t take anything for granted. It probably means that I’m not milking enough out of my *ahem* youth whilst I can but I’m pretty careful.
Is there anything positive that has come from having multiple sclerosis?
It changed my perspective a lot and made me more conscious of which things I prioritised. I was still pretty much a child when this all happened, so most of the stuff that was happening to my mates and people around me now just seemed like noise or comedy. Letting that stuff fade away opened up this door to figuring out who I really am and what I actually find important. I’m still on that journey, but can’t picture who I’d be if I’d never started it.
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?
Take a breath
…And keep yourself as close to happy as you can– stress is such a huge factor when it comes to my relapses, so I’ve come to really value self-care and relaxation. Whether it’s meditation, a candlelit bath or a massage, it’s really important to make that extra bit of effort to check-in with yourself and give yourself a bit of a mood boost. There are many apps like SuperBetter
Figure out what works for you
Whether you want it or not, there will be no end of people who have an opinion on what you should be taking or eating or drinking or thinking, and many of them have some kind of bias or agenda. Even those who are generally well meaning can be really pushy and preachy. Try things out and see how you do: I think it makes sense to defend ourselves from every direction that we can, but there’s no one method that totally works for everyone, and no correct way to have MS. You’ll figure it out as you go along.
You are not alone
When I was diagnosed, I didn’t really want anything to do with MS support groups or communities because it just seemed like miserable circle-jerk, and I really didn’t want the MS to become more of a focus in my life than it needed to be. But things are no longer like that, and there are forums that can connect MSers of all ages and levels of experience who can share tips, advise, recipes, gossip, fashion tips, or absolutely anything. MS I the thing that we have common but doesn’t need to be the only thing that we talk about: it’s just nice and comforting to be able to just have a conversation with somebody who gets what you’re going through without you having to explain everything or deal with the pity.
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?
Awareness and education are a good thing – almost every first conversation that I have with a new person involves me defining and explaining what MS even is, so it will be quite nice if we ever get to a point where people just kinda know.
Mostly, my problem is that MS narratives in the media generally follow a very narrow, well-trodden path, completely missing the individual variation unpredictability of this stupid disease: your MS might look nothing like mine, which might be totally different from somebody else. That lack of nuance does really frustrate me, sometimes, so I’m usually not that interested in watching MS storylines.
Thanks for reading guys, if you have any questions or comments, please do get in touch. I always love to hear from you. Next time we will be hearing from Grace, another MSer who lives in Switzerland.