#MSAwarenessWeek

[omsdoortodoor]

Blog Extra - MS Awareness Week 22nd April to 28th April 2024

This week is UK MS Awareness Week and this year Overcoming MS is running a campaign called #MSUnfiltered.

As part of the campaign, OMS is working with MS Society UK, MS Together, Multiple Sclerosis Trust, MS-UK, Neuro Therapy Network and Shift.ms to survey over 1,400 people in the UK living with MS. The survey results showed us that:

When I was diagnosed the first thing I did was to check out the MS charity websites, as recommended by my neurologist.  When I read the long list of symptoms

I was appalled because I had virtually all of these symptoms to some degree or another. 

Here is the list of symptoms combined from the MS Trust and the MS Society websites:

Fatigue

Strange Skin sensations (numbness tingling, pins and needles, a crawling)

Balance and Co-ordination

Vision Problems

Walking difficulties

Thinking & memory difficulties (brain fog)

Bladder & bowel issues

Temperature sensitivity

Low mood, emotional problems, depression, and anxiety

Pain

Sexual issues

Sleep problems

Speech and swallowing problems

Hearing difficulties

Tremors

So when I read the list not only was I dismayed, I was also rather confused.  Because, some of those symptoms I had been putting down to my age.  So how do I know is it my MS or an age thing?

But I’m really hear to talk about the #MSUnfiltered campaign and what we don’t usually talk about.

While I have been very open about my MS diagnosis, there are some people who chose not to tell their employer for fear of being judged and side-lined at work. And when I chose to give up work, I didn’t tell my clients the full reasons behind my decision.  Which were, that I no longer trusted myself to build an accurate spreadsheet of financial projections or that it took me three times longer that it should to write a simple report due to my brain fog and reduction in manual dexterity at the keyboard.  The reduction in my ability to hold complex ideas in my mind undermined my confidence in my own abilities.  I wanted them to remember me as someone capable of doing everything that I used.

Sometimes I get so overwhelmed by outside stimulus that I struggle to think straight or to express myself properly.  All I can manage is a grunt because I can’t get the words that I want to say out.  I come over as inarticulate and I worry people will think I am rude because I only use a few words and need to go and lie down.

Up to 50% of people with MS have poor mental health – this is something I am comfortable talking about and I am happy to fly the flag here.  However, when I went on an MS retreat in November and started to talk about how MS affects my mental health, not one person had the courage to talk about their own issues. Even though there were 40 people in the room, and we were in a ‘safe space’.  If the stats are right at least 20 people in that room must have experience of poor mental health. For a moment, I felt a bit embarrassed for raising the topic, but only for a moment.  What I really felt was sympathy that no one else had the courage to share.

And finally, my closest friends will know that I use the loo A LOT. I now have a RADAR key but I haven't had to use it YET.

#MSAwarenessWeek #MSAwareness #MS #MSDiagnosis #OvercomingMS #OMS #MSSymptoms

[retrofromscratch]

Don’t judge a book by its cover

From April 22nd until April 29th it is Multiple Sclerosis (MS) Awareness week. To help raise awareness and £500 for the MS Trust, I have made some limited edition notebooks!

This is really important to me as I was diagnosed with MS in 2009, a year after temporarily losing the sight in one eye.

When I was diagnosed, I’d had heard of MS but I didn’t actually know what it was. I was adamant not to ‘Google’ it, so I turned to the MS Trust. They provided me with free leaflets and a newsletter which gave me the help and support I needed, and still need today.

I was given a large number of old books which were going to be thrown away, and I thought that although the covers would plain compared to my normal style, their covers would still make beautiful, sophisticated notebooks. 

I wanted to give something back, so I contacted the MS Trust to see if they would support my fundraising idea. I can't run a marathon, or do a sponsored silence (I talk too much!) but I know how to make a notebook.

The notebooks, are £10 each and come in a variety of bright colours, each containing a different anecdote from my 10-year experience with MS. £5 from the sale of each notebook will be donated to the MS Trust.

I want to raise awareness of MS because some people are afraid to ask what MS is, what it does, can it be cured, etc ... or they make the wrong assumptions about you, and the disease. People tell me how positive I am about having MS, so I just wanted to help reassure people and break some of those boundaries.

MS is a disease which affects the nervous system. Almost three times as many women are diagnosed with MS than men, and in the UK approx. 110,000 people have MS.

My notebooks are available to purchase online now, I really appreciate your support! Thank you.

Becky x

Related Material: https://www.mstrust.org.uk/ms-awareness-week-2019?gclid=EAIaIQobChMIsPLY5v3M4QIVxeF3Ch1_Yg8GEAAYAiAAEgJSpfD_BwE

[buggedoutnyc]

#FBF to the Bugged Out kiosk at Bryant Park Winter 2016! Did you know that Bugged Out gives a portion of every sale to Multiple Sclerosis research to help find a cure? 🐛🦋🐞🐜🐝🧡💪🏻 #buggedoutnyc #giftswithpurpose #cutecritters #kidsfashion #nycclothing #organiccottonbabyclothes #babyonesies #kidstees #onlineshopping #fungifts #msawareness #msawarenessweek #msawarenessmonth (at Bryant Park Winter Village) https://www.instagram.com/p/CbPjnQsuJQo/?utm_medium=tumblr

[musicvsms-blog]

This week has been MS awareness week, so I have decided to bite to the bullet, and open up about my experience of living with MS – which, for a number of reasons, is something I have never really spoken about. However, having had some time to reflect while in lockdown, I believe that living with MS for the past 10 years has stood me in good stead for staying positive in more difficult times.

I was originally diagnosed in 2010 after a year of tests. I was 25, had just moved to London in a time of recession, and finally got a dream job working as a concert promoter. Just a few months into the new job, I started suffering from headaches, and then numbness in my arms and legs. I knew something wasn’t right but didn’t want to let it get in the way of my new career. While I waited to be put through the NHS system, I looked at alternative ways of managing the uncomfortable sensations, and would go for acupuncture in my lunch break, which alleviated the symptoms. I think the first time that I felt scared was when I went to see a neuro-physio who knew my Dad. She asked me to close my eyes, and put a set of keys in my hand. She then asked me what it was but I couldn’t tell her. I had lost all fine sensations in my hands.

After numerous appointments at Moorfields, and Queens Square – eye tests, scans and a lumbar puncture – I was told I had Multiple Sclerosis. It was incredibly hard to get my head around as no one in my family had ever had it: so why me? The causes are still unknown. The consultant at the time suggested I started treatment, which would be a daily injection, but I decided that I would try to manage it without. I was young, had caught it early, and didn’t want to be on medication for the rest of my life.

I told a few people at work and my close friends at the time, because they knew I was going for tests, but I kept it pretty quiet. I needed to get my head around it, and, in hindsight, I was probably in shock for a long while. The only thing I knew of MS was that some good friends had lost their mum to the disease when they were teenagers so was worried about how best to tell them. Perhaps I didn’t want to be a burden. I definitely didn't want the disease to define me or get in the way of my dreams, or for people to think I wasn't capable. Something I felt I needed to especially prove, being a (young) woman in a very male dominated industry!

For years I lived symptom free (or maybe I had just become so accustomed to certain strange sensations that I could ignore them) and wondered whether I had been misdiagnosed. I went on to achieve more than I could have ever dreamed of in my career, working with some amazing artists, and seeing them go from playing their first shows in the back room of a pub to selling out arenas. The day after my 30th birthday I had an interview with AEG Live, one of the world’s leading companies in live entertainment, and was offered a job and the title of Vice President of Live Music. Having spent years working all hours for no money, and almost giving up on numerous occasions along the way, I was finally appreciated. I launched Goldenvoice in the UK and promoted tours for artists including Sam Smith, Ellie Goulding, The xx and alt J amongst others. An incredible job but since my diagnosis I always knew it wasn’t sustainable. Fatigue is a common symptom but I would just put being tired down to the late nights and busy lifestyle!

Then, two years ago, I suffered a relapse that could only be as a result of the MS. I couldn’t feel my feet which also affected my concentration at work. It was a particularly busy time, as we had just launched a new festival – All Points East – which I was booking, alongside promoting tours, being out at shows most nights and dealing with personal issues. I went for more scans and was told that they were showing more lesions in my brain and spine than the last scans eight years prior. I didn’t take any time off at the time though; it’s hard to explain that ‘I can’t come to work because I’ve got numb legs!’. Booking a festival had been my ultimate dream and I had booked a lot of my favourite artists to play, so I wanted to see it through, but knew things needed to change after that.

Although I may have been living in denial for all those years, I do believe that the diagnosis spurred me on to achieve more in my career. However, at this point, I felt ready for the first time, to put my career on hold and look after my health. I finally accepted that I was living with a disease and that I needed to take control of it or it would take control of me.

Having worked in the music industry since the age of 18, working my way up from putting on mate’s bands in pubs in Brighton, I left my job not knowing what was going to be next. Some people thought that was a brave decision (maybe stupid) but I am used to taking risks, not knowing what’s next, and going with my gut had gotten me this far. Although I loved parts of the job, I knew I couldn’t keep working at the same pace and my workplace wasn't able to offer me the flexibility I felt I needed at that time. I had been working in a basement office with no windows, and when reminded by the consultant how important it is to take a high dose of Vitamin D, I thought: why not get the real thing, so headed for sunnier climes.

I had never travelled, as I had started working straight from school. I had an A-level in Spanish and always loved the language and culture, but not spent much time in Spain since. I decided to use the time to improve my Spanish, and headed to Barcelona where I had friends, and where the skies are always blue.

I had only recently passed my driving test, and had heard that you need to drive 10,000 miles before you’re a competent driver, so I picked up my car from London and then drove around Spain and Portugal. My oldest friend was working on a retreat in Portugal, so drove to her via Barcelona, Valencia and Andalusia, and then back up to northern Spain. I met my mum in Santiago De Compostela and walked a bit of the Camino – something I’ve always wanted to do and I plan to do the whole thing one day. I caught the ferry back, just in time for All Points East at the end of May, with 9,988 miles on the clock and only a few bumps and scratches!

During my time off, I realised that music is still my passion but I need to do things differently. I am back working for AEG, but on my own terms, working across the festivals. My old boss was hugely supportive and offered to bring me back in as a consultant so I can work from anywhere. I am back in London for now, but try to get away for some sunshine during the winter months. I hope to one day be living in the hills in Spain but for now London is my home, and I am feeling hugely grateful for this amazing weather we’ve had recently. I am back doing Spanish lessons with my teacher from Barcelona which wouldn’t be possible had Zoom not become the ‘new normal’.

I am not currently on treatment, despite being advised to by the consultant. It’s hard to seriously consider taking drugs when you feel perfectly healthy. I am always learning about diet and alternative therapies, and feel lucky enough to have a support network of amazing people, and the funds to do it my own way. Who knows what the future holds, but all I know is what I can do on a daily basis to stay healthy and keep my body and immune system strong for now.

I have learned so much from living with MS. It has taught me how to cope in times of uncertainty, as we all are now, and I feel grateful for that. It’s not easy, and there are challenging days, but all you can do is focus on what is within your control and take each day as it comes. I feel positive that I will get through this and beat MS. We will all get through these difficult times and I believe it will only make us stronger.

#livingwithms #multiplesclerosis #msawarenessweek

[gavingiovannoni]

Tweeted

triMSonline: Have you ever wondered how https://t.co/XKkNoowsIf was born? In celebration of #MSAwarenessWeek why not read all about our award-winning virtual event series and how the #triMS team strive to raise awareness of this often-invisible diseas… https://t.co/pRi1y3YPZG

— Gavin Giovannoni, aka Prof G (@GavinGiovannoni) Apr 28, 2022

[limejuicer1862]

#MSAwarenessWeek Multiple Sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel. Have you written unpublished/published work about MS? Have you made artworks about MS? Please DM me, or send a message via my WordPress site.

#MSAwarenessWeek Multiple Sclerosis (MS) is a condition that affects your brain and spinal cord. In MS, the coating that protects your nerves (myelin) is damaged. This causes a range of symptoms like blurred vision and problems with how we move think and feel. Have you written unpublished/published work about MS? Have you made artworks about MS? Please DM me, or send a message via my WordPress site.

[buggedoutnyc]

Shop in style! Stock up today on Bugged Out reusable tote bags! A portion of every sale goes to Multiple Sclerosis research. 🌍♻️🐝🌳☀️🌸🌿🌀🧡 ✅bugged-out.com [link in profile] #buggedoutnyc #bringyourownbag #byob #gogreen #noplasticbags #savetheplanet #bringyourownbag #reusereducerecycle #msawarenessweek (at Worldwide) https://www.instagram.com/p/CbH0q1fO51L/?utm_medium=tumblr

[gavingiovannoni]

Tweeted

triMSonline: #triMS is dedicated to creating an inclusive environment for all of those involved in the study and treatment of #MS. Listen to our free podcast series, which can be accessed anywhere in the world: https://t.co/l7H2xlTv7a #triMS #MSAwarenessWeek #MS

— Gavin Giovannoni, aka Prof G (@GavinGiovannoni) Apr 27, 2022

[letterstothrive]

It's MS (Multiple Sclerosis) Awareness week!

"Keep Calm and Celebrate Ladies with MS"

[gavingiovannoni]

Tweeted

triMSonline: To celebrate #MSAwarenessWeek take a read of the international consensus statement and PLS on the management of #MS during and post the COVID-19 pandemic, published by the #triMS Scientific Steering Committee and other expert leaders in #MS … https://t.co/5rjJ172E1W

— Gavin Giovannoni, aka Prof G (@GavinGiovannoni) Apr 26, 2022

[agreatbigworld]

This week we’re turning ORANGE in support of finding a cure for Multiple Sclerosis. Visit msconnection.org to learn more, fundraise, donate, and advocate.

[buggedoutnyc]

Did you know that Bugged Out gives a percentage of all sales to #msresearch @tischms? In honor of #MSAwareness Week we will give 💯 percent of all Bugged Out sales March 8-14 2020 to ms research. Spread the word! 🦋☘️🧡🦋☘️🧡🦋 Together we will bring awareness to #multiplesclerosis and #endms #msstrong #mswarrior #msfighter #supportmsresearch #msawareness #msawarenessweek (at New York) https://www.instagram.com/p/B9OykFvnDBH/?igshid=1xbfdhx2jvn4z

[gavingiovannoni]

Tweeted

triMSonline: One month to go until our sixth #triMSonline conference. To find out more visit our website: https://t.co/7etOzEScaU #triMS #MS #MSAwarenessWeek https://t.co/MCMJxR8FMz

— Gavin Giovannoni, aka Prof G (@GavinGiovannoni) Apr 26, 2022