Tag Archives: multiple sclerosis

“Disability is full of compromises and workarounds”

Edith was diagnosed with Multiple Sclerosis when she was 16. As her condition started worsening, it was essential that she found a social care package that met her needs.

In this blog, Edith writes about how finding the right social care package has enabled her to focus on the other important things in life.

Writing about my twice daily care visits feels like trying to describe brushing my teeth, or cutting my nails. It’s boring and I aim not to focus any great deal of time on it, it’s just an essential part of daily life.

A young woman smiles whilst sitting on a sofa, typing on a laptop
Edith sitting on a sofa with her laptop

I use a wheelchair full time, but the ‘book ends’ of my day are especially hard. Lying in bed overnight, my whole body stiffens up and takes a while to stretch out and co-operate. Come evening, fatigue has turned me to jelly.

Add in flare ups, temperature variations and colds or viruses. Each day is a surprise. My carer starts by stretching my legs in bed and helping me to a sitting position. Using a standing frame I transfer to my wheelchair, and in a subsequent set of routines I get dressed and ready for my day. The process is fairly cumbersome and long winded, but we go the fastest we can, totalling around an hour.

Night calls follow a similar set of processes, all made quicker and easier if I’m having a ‘good day’, but following a routine which we know well enough to follow without fuss.

It means I can focus on the rest of my life

My social care calls are crucial. Do I want to have company first thing in the morning? Would I love to get up and make a cup of tea then go back to bed for a few hours? What about those unexpected evenings out where one drink turns into many and you just re-adjust your 12 hour plan accordingly.

The alternative is being bed bound, in some residential home, or relying on my parents (while I can, then what?). So when it works, my social care support enables everything else.

With the essentials of personal care covered, I can focus on the rest of my life, the nights out, holidays, work, credit card bills… just life. To me social care is as necessary a part of my functioning as any of my healthcare, if not more so.

I’m frustrated by the wires I’ve had to untangle to get social care in place, the lack of transparency in funding and set up. It feels more vulnerable than the NHS and prescription meds, yet to me should be treated in the same way.

It’s all a part of my life I’d rather not have to incorporate, but fundamental for me to achieve, do, live or anything else.

Read more from Edith on her blog.

Half of disabled people feel excluded from society and many say prejudicial attitudes haven’t improved in decades.

We know there is still work to do until all disabled people enjoy equality and fairness, so we all need to work together to change society for the better. 

There’s something everyone can do to be a Disability Gamechanger so join the campaign today to end this inequality.

My experience on People’s Strictly, as a dancer with MS

Trishna Bharadia was a contestant on the People’s Strictly for Comic Relief.

Trishna was diagnosed with Multiple Sclerosis at age 28 in 2008. She works full-time as a translator for an information services company but in her spare time has collaborated with various MS and disability organisations, to ensure that people with MS are supported and their needs are understood within the wider community and by the general public. Here she talks about her experience on the show. 

Dancing out of my comfort zone

I’m someone who has always loved the idea of dancing but never had the confidence to do it. Being diagnosed with MS brought a huge amount of unBlack and white photo of Trishna in rehearsal with her dance partnercertainty into my life and changed the way that I viewed things. The nature of the condition means that I could quite literally wake up tomorrow and not be able to move my arms or legs. No warning. It can just happen.

This led me to taking the bull by its horns and I started to do all the things that I’d always wanted. Dancing was one of them. I took up Zumba classes, where I really fell in love with dancing. It taught me that actually you don’t need confidence or even a certain level of physical ability to dance, you just need a passion for it and to be able to think outside the box.

Trishna wearing all yellow, posing with her dance partnerI’m a big fan of Strictly Come Dancing and when my sister heard that they were looking for people to participate in the first ever People’s Strictly for Comic Relief, she knew she had to enter me.

There were over 11,000 nominations and just six of us were chosen. It was an honour that the producers believed my story was worth telling and that the work that I’d done with various MS charities since being diagnosed warranted me making one of my dreams come true!

Facing Challenges

Dancing with MS or other chronic conditions or impairments isn’t easy. While I was having the time of my life on the show, dancing with the wonderful Aljaz Skornajec, behind the scenes I was also struggling with fatigue and the uncertainty of my condition. The four months were physically, emotionally and mentally tough, Trishna wearing a white sparkly dress, posing in a dance move with her partnerparticularly as I was still working full-time, as well as filming and dance training.  Training was anywhere between 10 to 25 hours per week for six weeks.

Just a few weeks before we were going to do our final dance, my foot went numb and I was terrified I was having an MS relapse; one of my relapses had previously involved me losing the feeling down one side of my body. Turns out afterwards that I actually had localised nerve damage from poorly fitting dance shoes, but it served to remind me just how uncertain my condition can be.

The production crew, other contestants and professional dancers became like a family to me. I’m used to having a strong support network around me, which enables me to do all the things that I want to do. On filming days it was my new Strictly family that ensured I was able to get enough rest and that adjustments were made to ensure I was being shown at my best.

Aljaz was fabulous and there were parts of our jive routine that we adapted and adjusted to take into account my fatigue and wobbliness when my muscles started tiring!

Doing Strictly has helped me to appreciate further what I’m capable of physically and also allowed me to push myself and find Trishna and her dance partner giving each other a high fivenew limits. I would do it all over again given half a chance! I was supremely aware, however, that not everyone with MS would be able to do what I did. I was contacted by the Wheelchair Dance Sport Association (WDSA) and have since helped them to promote wheelchair dancing. I mean, who says that dancing has to be standing on two legs? Dance is a beautiful and challenging art form and disability definitely doesn’t have to be a barrier to people who want to give it a go!

Want to know more? You can connect with Trishna on Facebook or Twitter

Have you got a dancing story you’d like to tell us? We’d love to hear about it – just comment below.