It’s a funny old life with multiple sclerosis and I write about whatever’s on my mind, no matter how trivial or random, and not always about MS.
After starting my blog in 2012, it’s now read in over 150 countries, so a huge thank-you to everyone who has supported us over the years.
Originally from Scotland, I now live in Cardiff, South Wales and my son, The Teenager, is at University.
I was diagnosed with MS in May 2012; I had my first course of Alemtuzumab (Campath/Lemtrada) in the summer of 2012 and had my second in 2013. In Autumn 2015, I had a third course.
I was dismissed from my last job for having MS – I won the tribunal – and I’m now working for my friend’s company and enjoying every minute as a building site project manager, muddy boots and all.
I’m chuffed to say that I was a finalist for the MS Society’s MS Digital Media of the Year 2013 award and again in 2016. I was also a finalist for the MS Society’s Campaigner of the Year 2017 and my boss was a finalist for Employer of The Year in 2018.
In the meantime, I completed an MA in Creative Writing at Cardiff Metropolitan University and was awarded a Distinction as well as the MA Humanities Award for Academic Excellence.
As of Autumn 2018, I started a Research PhD, with the focus firmly on MS – click here to see my research profile, then click on my name, Barbara Stensland.
I am delighted to have been accepted as a member of the National Union of Journalists (NUJ) in 2018 and hope to expand my professional writing alongside the PhD.
My book, ‘Stumbling In Flats’ was short-listed for The International Rubery Book Award 2015. My MA dissertation story, ‘Who Cares?’ was short-listed for the 2017 Exeter Story Prize.
In Spring 2016, I was asked to be the MS advisor for the short film, ‘Spoon Fed’, starring Lesley Sharp (Scott and Bailey, The Full Monty) and Joseph Mawle (Game of Thrones), and I also had a walk-on part, an interesting, nerve-wracking and illuminating experience.
As well as taking part in academic research for several organisations as a patient representative, I write for numerous websites, including Sanofi Genzyme (as a Committee member), Teva Pharmaceuticals (as a content adviser), the UK MS Society and many others and I have been interviewed by BBC Wales and BBC Radio Wales on the topic of disability discrimination. Aside that, I speak at conferences across the UK and Europe, most recently in Hungary, Athens and Copenhagen.
I am also an #IAmEmbolden Ambassador for Disability Wales, focusing on encouraging more deaf and disabled women and girls in Wales in to further education.
I like croissants (especially almond), newspapers, a good discussion over a cheap bottle of wine and expensive candles, gift shops in museums, the London underground and sparkly flat shoes. The Teenager enjoys winding me up, pizzas protein shakes (things have changed since 2012) and expensive t-shirts.
I live in the states (NJ) and was just diagnosed in June with MS. I’m 46, female, married no kids. Have tried two different drug treatments but have stopped both. Side effects were worse than the MS and have had more success with diet (low fat, lots of fruit and veg, lean meat – also Gluten free & Dairy free)and exercise. It’s a pain in the arse but it really seems to help. Thank you for your humorous and uplifting blog. So many MS bloggers are NOT uplifting OR funny. It’s nice to see that there are others that also have a sense of humor about this diagnosis. I’m subscribing to your blog. Thanks, again!
Hi Carla,
That’s a really nice comment, thank you! You’ve hit the nail on the head. When I first got diagnosed back in May, I found it soooo depressing that most of the blogs were just endless lists of depressing symptoms, doom and gloom, etc. I wanted to show that yes, it’s hard, but can also be pretty humorous (I think!).
Glad the MS diet is going well, I keep meaning to try it but am so undisciplined, lol.
Keep in touch!
X
Hello old hand here in my 25th year still up and , tried lots of drugs only one taking at me aftershave years of pushing from family is chill pill low dose.
They help a little my body at tingling all over stage and driving me mad leg work one day then maybe not the next.
3 children 2 dogs 3 cats lovely bungalow xx
Lovely husband been married 25 years so this journey been spent with himat my side or picking me up,
We like to raise penny’s for ms society my hubby doing sponsored slim at min Philip Martin all who read welcome to pop a penny to help research they will get one day when they get funds as other illnesses do 🙂 well that me hope you and you blog fans all having a good day Chris
Hi Chris!
Thank you for your comment. Nice to hear from an old hand! Sounds like you have a great support network.
If you ever fancy writing a guest blog post as someone with a lot more experience of MS than me, please drop me a line – would be good to get a different viewpoint!
Take care,
X
Aftershave ? After several
I knew exactly what you meant, lol. x
Lovely thanks for that reply
I would love to do that for you anytime.
Chis
Hey Chris,
Will send you a private email in a mo!
X
Hi there! I was just recently diagnosed with MS 2 weeks ago. In my search for information, support and whats out there I stumbled on your blog. I have to say I am so thankful for what you write. As I sit here in my steroid induced hives and muscle cramps it gives me perspective and a laugh at times. I have read other blogs as well that have been great but yours takes the cake! I just want to say thank you!
Hi Becky,
Thank you for the compliment! So sorry to hear you’re newly diagnosed and hope you have a lot of support around you. There’s loads of goodwill on the internet too!
MS can be pretty crappy, so it’s good to have a laugh as well as talk about the more serious things.
I hope you get the full range of treatment options to choose from and lots of good information. Information is power!
Take care of yourself and please stay in touch.
X
Hi,
I was diagnosed with MS in July, 2012 and am extremely tired of the roller coaster of life. I have a wonderful husband of almost 16 years now, 2 boys (11 & 4), 2 dogs, and 2 cats. I stumbled on your blog researching Uhthoff’s Phenomena. I have started calling my eyes, my “special eyes” after my boss called them that with a question she had about some of my work. It was all in fun and I love it. Thanks for the laughs, I guess that is all we can do at this point is laugh at ourselves.
Thanks for the inspiration!
Lisa
Hi Lisa,
Lovely to hear from you! Uhthoff’s Phenomena is awful. People just don’t understand how debilitating it can be!
And you’re right, sometimes it’s best just to have a laugh. The alternative is too awful to contemplate. Not saying I don’t have my down times, but I’m trying to outweigh them with the funny and good!
x
I was diagnosed in 1994, aged 31. Aside from minor symptoms, I was fit until I had to go to Denmark on business (I was a journalist) aged 36 and suddenly needed a cane to walk. Thank goodness I’d had 3 kids in my 20s when I was healthy. A steady decline in my early 40s saw me in a wheelchair to this day. As for disability equipment, I’ve spent £7,000 on wheelchairs, £5,000 on a stairlift which has now been replaced by a through floor lift at £13,000 – and that little lot is just for starters. I re-married after 2 years as a single parent to 3 kids aged 12, 13 and 17, I am thankful that I sold my business one year before MS finally floored me.
Sorry to sound like such a harbinger of doom.
Hi Jon,
Thank you for your comment. I’m glad too that I had my son before all this started, as the thought of having a baby/toddler now would fill me with dread. No energy!
x
Just happened across this.
I’m Keith, bother since 6 yoa, dx 2003.
I managed to circumnavigate with the Merchant Navy before”IT”(in my head) landed, or even worse.Whatever the outcome I knew something bad was going to happen.
However I was truly gutted to be dx as I kinda thought everybody had what I had. I shit you not thats what the wee boy thought. ie he knew no other way.
1999=married my queen in Cancun
2002=first son
2003=dramadrama call the dx polis dramadrama
2005= My wife and I didn’t want to let MS ruin or rule us. We tried for another kid and we got b+g twins.
2011=Bungalow alloted.
2013=sitting here wondering about growing my own veg.
Oh yeah, I still haven’t told my parents about the early years. I’m 39 lol.
xx
Hey there,
Same age as me! MS is crap. Really crap. Especially as it hits us pretty young.
I guess we just have to make the most of it?
X
I hadn’t realised that your diagnosis was the same year that I became ill. X
I think I was ‘lucky’ to get a diagnosis within 10 months of first official relapse. Although looking back, I think I probably had MS for a good few years before that.
x
I guess I should explain that my official diagnosis at the moment is aggressive cns inflammation. I have 4 very active areas of inflammation. I was hopefully going to start on Tysabri but unfortunately it has not been possible to completely rule out Neuromyletis Optica so I’m between a rock and a hard place … Either Ms or NMO
That must be pretty stressful for you? What is it they need to confirm before they diagnose you either way?
x
I’m so happy I found your blog. I also have MS and blog about it. I find most MS blogs are rather boring and depressing. You have a great spirit and I will definitely be reading. I also followed you on twitter…because i’m a stalker. 😉
Thank you! Couldn’t agree more with you – some of them just make you want to jump off the nearest bridge. Can I adopt your ‘mucho special’ phrase please?!
Your blog is fab.
x
Finding your blog was an unexpected bonus today, and I have only been up an hour or two 🙂 It’s great to have blogs like yours redressing the balance a bit and showing that a disability or illness doesn’t have to define you as a person, or stop you being a normal human being.
I too am useless with makeup, wear flat shoes and don’t have much energy, but for different reasons – general ineptitude, broken ankle and natural sloth, but not necessarily in that order.
You look gorgeous, by the way, and I suspect it isn’t just the slap!
Hi there,
thank you for your lovely comment!
I suspect I am also a natural sloth, cunningly disguised by MS, lol.
Thanks for reading!
x
Hi I had official MS diagnosis in Oct 2012, though had symptoms for some time but have had Crohns Disease for 10 yrs so thought it was connected to that. Reading your blog was a fantastic find & I look forward to reading more after just subscribing. Whilst laughter is the best medicine, Copaxone injections can be funny at times too, as squirted one up the wall the other day, lesson learnt is that you can’t multi-task at injection time! I am 46 yrs young, 2 babies (22 & 21 years old), 1 husband, 1 cute black Labrador, 1 full time job & 2 interesting health conditions but 1 glass which is half full most of the time! Thx & look forward to your next blog . Heidie
Hiya Heidie,
Thanks for comment and for subscribing! So good to hear you can find the funny side to serious situations – definitely the best medicine.
x
Thank you for your courage in writing your blog. read your article in the ms trust magazine today. people like you keep me positive, unlike the world of neurology which has felt very dark. I am lucky I can do homeopathy and diet and that helps. Was turned down for medicine by the hospital but the complementary therapists keep me out of mischief! Diagnosed 5 years, probably had it longer. Currently trying to access “lost” medical records of my diagnosis. Best of luck with your work situation and you are courageous fighting against discrimination. Katharine
Hi Katherine!
Thank you for your lovely comment. Funnily enough, I trained as a homeopath for four years! There’s a lot that can help people with MS, especially emotionally. Would be interesting to hear more about it from your perspective?
x
Hi, Not sure whether I’m amazed, shocked or surprised that so many people are dx with MS in the last 12-18 months. The trigger for my wife’s MS was shingles back in 84. She had relapsing remitting which over the years became secondary progressive, what ever you call IT, IT is still a nasty disease. I read in my local paper yesterday a lad of 17 has MS . I don’t have MS, I had MS in the last 28 years of my life, it brought me closer to my wife, not sure if its a good thing, but it opens up a new way of life and adventures, I use a wheelchair and it has become my legs I can play and run with my granddaughters. I like the mallet idea, everyone keep writing the blogs. David
Sounds like you guys have a healthy approach to life!
I recently heard that a lot of people with MS had been in a car crash, which I found interesting as I had a major head injury in my early 20’s from a car crash. Also, I think stress is a trigger? All I know is that 4 years ago I went through a horrendously stressful time. Who knows??
Glad you like the mallet idea! It helps keep me sane…
x
Hi as you know I don’t have MS, but lived with it for 28 years, would it be ok for me to write a guest blog. I would like to share Vicki’s and my experiences.
Also how do you feel when I mention the outcome of MS, or should I not.
because if I had SPMS or PPMS I would want to know the outcome, let me know what you think.
David x
Hi there
That would be lovely, but not sure what you mean by outcome? My dad had PPMS and I wrote a post for the MS Society about it, mentioning he died of MS related causes aged 35. I got a bit of a backlash, saying that was depressing, miserable, etc.
Anyway, email me what you fancy writing to barbarastensland@hotmail.com
Posts are usually 400 words and send through pic and short intro you’d like?
x
Hi you understand the final stages of MS, I have found that some with MS don’t want to know.
Its only since my wife passed away in March this year that some class it as terminal MS, it is still upsetting.
David x
Very true, I think a lot of people with MS don’t want to know. I’m so sorry to hear about your wife, it must still be very raw for you.
I don’t mind what you write about, just not too dark as the blog is supposed to be more on the light-hearted side?
Perhaps a post about the perspective of a carer for someone with MS?
x
Yes will keep it from the dark side Luke, sorry thinking of star wars.
It will be a bit of a novel start from the beginning and progress on, the fun times and not so fun times, we had a good life its just the end that’s wrong.
Will compose the first one soon, do you want in word?
x
Move away from the dark side!!!
Sounds brilliant – word or just on email is great. Look forward to it.
x
Me too had this for 25 years and they change my diagnosis , all the Tim you have rr you have progressive so what’s going to happen ???
Got no idea, sadly. I mean, how do they exactly know when you move on to the next stage? Also, I have highly-active RRMS, very different to standard RRMS, with relapse after relapse. New category perhaps??
x
Hi, I have just found your blog and I have been reading all afternoon! I was diagnosed with MS, aged 15 (first problems at 13), am now 35, married with two kiddies, aged 3 and 5. I had been pretty well until last year with mild RRMS, now I think I have SPMS. Due to see consultant next month to confirm. I have been pretty ‘head in the sand’ as it didn’t really affect me day to day, but it does now. It really helps me reading about others with MS, as no one around me truly seems to understand. Everything that I am going through. Thank you so much 🙂
Hi Jenny,
Thank you so much! Glad you enjoyed reading.
So sorry to hear your MS is progressing. Must have been hard to be diagnosed at such a young age? But you sound pretty chipper. Hope you’ve got lots of good support round you 🙂
X
Thanks for the reply 🙂 i reckon I am pretty chipper (on the outside), but, at the same time, I feel like I am only just going through the diagnosis stage (again) as I have been well for so long until now. My husband is great, he has been behind me all the way since we have been together, even though it has been difficult for him. I have tried to take on board a healthier lifestyle (diet, exercise etc), so hopefully that will help xx
I hope you get all the answers you need! Your husband sounds lovely. Must take your example and try a healthier lifestyle, lol. Had a last batch of steroids in July and am hoping that’s the last in a long while! I seem to whack on the weight with them, meh. Not a happy bunny!
x
Hi, I’ve just stumbled across your blog (no pun intended!)and its flipping brilliant! Funny and honest, and you have a lovely writing style – looks like you’re gonna nail that MA! I was conveniently made redundant and I too am on the hunt for a brand new career path… for me its jewellery design. So here’s hoping that grit and determination to combat all the rubishness can bring success!
Lucy
Hi there!
thanks for the lovely compliment! *blushes*
Jewellery design sounds fabulous. Always good to be open to new ideas 🙂
X
This time last year I lost ~ 10 lbs…….. Ok so I put a bit more weight back on again but…. the trend is definitely downwards…………NOW WHERE ARE THOSE SUGARY SWEETS?
I’m totally with you on that one!!
x
Thank you so much for writing your blog.
I’ve been reading it (from the beginning) for several weeks. Just over a week ago I was diagnosed with RRMS. I’m 27. Trying to make sense of this has been so hard. The changes that might need to be made and thought about the future terrify me! I don’t have children but imagined it’d be something I’d do in the next few years. I’m lucky enough to have a wonderful partner who says he’s going nowhere. However dealing with the 18 month puppy we have and full time work is exhausting at the moment. I can’t even imagine how I’d cope with a child!
Anyway the positive attitude of your blog, even with all you’ve been through, makes me think it’ll all be ok.
Thank you!
Hi Rebecca,
thank you so much for your lovely compliments and for having the stamina to read the whole blog! Really nice to hear from you.
So sorry to hear about your diagnosis but with a great partner by your side, hopefully things will be a lot better and you will be well supported. There’s also a really nice bunch of us with MS out there – so if there’s every anything you’re unsure of, just give us a shout!
I hope you have a range of treatment options, if you need them and you have access to MS nurses – makes all the difference.
Thanks again, you made my day!
Bxx
Diagnosed with r/r Dec 2001. Tried Betaseron, Novatrone (chemo)and Copaxone..no effect. Tried LDN nope didnt work. Did two CCSVI procedures…now I am SPMS..we must learn to adapt with life. we must find the beauty, the love, the laughter. We must go easy on ourselves when we have moments were we break down as tears are the stress relievers for the heart.Someone once told me I had the perfect personality to have a disease. At the time I thought they were insane, but now I think I do. Thank you for your brilliant blog. Life with MS does suck quite a lot of the time but living life does not have to grind to a halt, and we dont have to always frown.
Thank you so much!
I’m loving your attitude and I totally know what you’re saying. Brilliant!
x
Many thanks for your great blog which I have only recently discovered by chance! I live in Berlin, Germany, and my husband was diagnosed with MS in March 2004. Being a UK citizen I prefer to read blogs and info in English. In Germany there is not enough info and support available for MS sufferers. We have been through all the usual medication over the past 13 years, Rebif, Copaxone and now Gilenya and to some extent they have helped him and the progression has been somewhat delayed. He is now 55 years old and can still walk short distances and at home he can still manage stairs! I agree that the most important aspect not to lose is a sense of humor – in the past we have had to cope with some very tricky situations (i.e. him collapsing at the airport but still managing to board the flight to Gatwick!). At the time it was dreadful but on looking back some aspects of it were also quite hilarious!!
Continue the good work and I look forward to the regular updates on your blog.
Hi Carina!
So lovely to hear from you. I absolutely love Berlin so am very jealous!
Thank you for reading my blog and it’s great to hear that your husband and you are keeping your sense of humour. Where would we be without it?!
X
Hi Carina!
So lovely to hear from you. I absolutely love Berlin so am very jealous!
Thank you for reading my blog and it’s great to hear that your husband and you are keeping your sense of humour. Where would we be without it?!
X