This month, new statistics were released by the MS Society outlining the reality of Multiple Sclerosis in the UK. Over 130,000 people are living with MS in the UK which is more than 20% more than previously thought. Crutches, walking sticks and MS are a common partnership, whilst having to use mobility aids is often unavoidable with MS, we understand the importance of finding the best walking sticks & crutches which are comfortable, silent and most importantly safe.
One woman who is only too aware of the reality of living with MS is the wonderful Jane Felstead. Best known for her role as Mummy Felstead on Channel 4's Made in Chelsea alongside her daughter Binky, Jane has lived with MS symptoms since she was 30 years old but sadly only received her formal diagnosis at the age of 65. Currently sporting our Leopard Print Cool Crutches, we were lucky enough to catch up with Jane to hear her experience of MS, her top tips and how she maintains her faultless smile, contagious sense of humour and overall positive attitude for the future.
My first experience of MS symptoms was when I was 30 years old, I was experiencing extreme exhaustion both physically and mentally. After seeing a number of different doctors and specialists, I was diagnosed with Fibromyalgia and Depression. In hindsight it was clear I was living with MS, from exhaustion, to going blind in both eyes with optic neuritis (thankfully not at the same time) and suddenly losing the strength in my arms to lift a saddle onto my horse, the signs were all there. For 15 years I tried every drug the doctors threw at me but of course, nothing worked. I was so exhausted once I even remember having to pull myself up a street by the railings to get myself from A to B, it was horribly depressing but following doctors’ orders, I took the drugs they prescribed and I got on with it.
Many years later, at the age of 65 I was on my way out for lunch with my children when I collapsed, my legs just gave way. I had suffered these symptoms for 35 years but that day prompted me to book an appointment with a private neurologist at Queen Mary's Hospital. After a number of tests including an MRI, a brain scan & a lumbar puncture (BUPA must love me), the doctor came to give her diagnosis. Whilst she was looking at her computer trying to gently explain white lesions on my brain, I quite bizarrely interrupted her asking 'It's not MS is it?' and she replied 'I'm afraid it is'. My aunt lived with MS so it's in the family and I do have some knowledge of it. I very quickly told the neurologist I was fine and that was everything I needed to know, she wanted to explain more but I wanted to get out. The shock can be terrifying and in hindsight my advice to anyone newly diagnosed would absolutely be to try and not be too scared. I really do believe that despite the scary stories, the brain is an amazing thing and a positive, strong mental attitude is incredibly powerful in its promotion of self-healing.
Living with MS - The Highs
Yes there are positives!
Having close friends and family on hand, in particular my children, is an enormous help – knowing to only really jump in if I ask. Having said that some of my friends know better, especially women my own age who often say 'don't be so stupid, let me help you!'
People are different and their reactions to diagnosis are different as a result. Mine was powerfully protective of my independence and dignity. This isn't necessarily a good thing as I'm scared to accept help in case it renders me unable to cope alone. Silly I know but I am learning.
The reaction from strangers is also sometimes overwhelming. I live in the middle of Fulham in London. People tend to think Fulham is terribly smart and it can be, but it's also filled with proper old Londoners and a wonderful Cosmopolitan community. These people are the ones who rush to help me across the road, or with my shopping, or to open my car door for me, or offer support in so many ways that makes me feel really humble and tearfully grateful. MS has taught me so many lessons but the reality of how kind human nature can be is by far the nicest.
Living with MS - The Lows
The lows are undeniable, by far the worst thing about MS is not knowing how I'm going to feel on any given day. Whilst I can plan, I can't guarantee I will have the energy to follow through with those plans. Some people have it worse than me as they wake up with a whole new range of symptoms without warning. Whilst I don't have this, I do get terribly tired and as a result really struggle to motivate myself.
The other thing I really struggle with (and it's not really talked about) is that people without MS really don't understand. You can look normal, sound normal, force yourself out of bed to do things as normal so people think 'I know you've got MS but get a grip, your skin is fantastic, you look really well, it can't be that bad'. This I do find difficult and it's at times like this when I wish even my nearest and dearest could have just one day in my body.
Finding a Cure
I 100% believe we will have a cure for MS in the future and I think we are getting pretty close to it now. The people I've met in the MS Society and for all the fundraisers who work so hard it must be so rewarding for them to see it all coming together. I just know the end is in sight.
The Best Resources for Those Living with MS
The MS Society is fantastic and the MS Register is also an enormous help. Whilst new stats show the NHS is getting better at diagnosing people, I am more than aware thousands living with MS are not being given the vital support they need. If you are living with MS yourself it is hugely helpful for you to sign up to the MS Register as it collects and uses data from those living with MS to provide a clearer picture of the support which is needed day to day and over time to drive research and influence change.
Choosing and Using Mobility Aids
Sadly people treat you differently when you're on crutches, walking sticks, or using a scooter. Their tendency is to let their eyes slide over you, embarrassed I think. Twice last week I was pushed out of the way in a queue by people claiming to be in a rush - so annoying and made me want to rugby tackle them, very badly brought up!
I chose Cool Crutches because I'm keen to change the perception of people with disabilities and remove the stigma. Anything unusual and wacky appeals to me and I'm certainly not into subtlety! People who notice my Cool Crutches (I use the Leopard Print ones) make wonderful comments and it makes me feel much better about my day. We may need to use walking sticks or crutches, but we can still paint our nails and wear wonderful sunglasses and flamboyant shoes so why not have sticks to match?!
Getting Out of Bed in the Morning
What does it? Literally, my cat. Only seven months old and he's developed a horrible habit of biting my toes! Sadly first thing my legs don't work that well, so I find it difficult to escape.
What a woman! Thank you to Jane, we could not be more proud to have you as an ambassador for Cool Crutches, showing the world you are a seriously stylish fighter with the best attitude and sense of humour anyone could wish for.
For more information and support about Multiple Sclerosis please visit https://www.mssociety.org.uk.
To shop Jane's Leopard Print Cool Crutches click here.