This week is Multiple Sclerosis Awareness Week and with so many of our wonderful customers living with the condition, we want to use this week to help raise awareness of MS.
For this reason, we are so happy to be able to share an interview with the brilliant Scarlett, a poet who has used her Skulls & Roses walking stick since her diagnosis but most importantly was willing to share her story with honesty, grit and positivity.
When did you first experience symptoms of MS and when were you given your diagnosis?
MS is described as a ‘snowflake’ condition, because the symptoms vary so widely from person to person and each case is so individual. Due to this I didn’t know I was experiencing MS symptoms, but the first onset was when I was 26 and my right arm suddenly went numb from my shoulder to my hand. I lost sensation and mobility, but I just thought it was a trapped nerve. After a while it went away and I didn’t experience anything then for another couple of years until I was 28, when my legs went numb from the hips down. Then I would get crippling spasm pain in my neck and shoulders, and the ‘MS hug’ which is a term to describe the tightening of muscles around the upper chest. It’s so important to raise awareness because the symptoms can disappear and you are tricked into believing nothing is wrong, until they get worse. I have Relapsing Remitting MS which means I will have ‘flare ups’ or ‘attacks’ and then recover again - but because it’s a progressive disease I will recover a little bit less each time. Before my diagnosis I just thought I had a tendency to get trapped nerves, but that was before my big attack at the start of 2022.
Can you talk us through your diagnosis?
As a result of the ‘MS hug’ I misinterpreted it as breast pain, and so lots of examinations and conversations were about the possibility of it being hormone changes. One doctor told me it was just my periods playing havoc, so I was sent home with some naproxen for my numb legs. I then started to get awful brain fog and speech problems (totally unlike me, being a poet as my job) which I thought was the medication, but it was actually a lesion pressing on my brain. I noticed my handwriting became child-like, and then I suddenly deteriorated very quickly. I was experiencing my first ‘flare up’ and my husband had to carry me to A&E when I lost my ability to talk, walk and swallow within a few hours. It was then I had an MRI scan which showed all the scarring inside my brain and spine. I was in hospital for the better part of a month with a feeding tube and a catheter while I was recovering. Because my first relapse was so sudden and violent, it was very clear I had MS, but before that event I wasn’t really taken seriously by doctors and sadly now know it definitely should not have been as bad as it was before it was spotted.
What was your reaction to hearing that you have MS?
When I was told, I had just come round after being unconscious for 4 days, so my memory is a little fuzzy around that time. I remember my husband sitting by my hospital bed and I just cried. I hadn’t heard of it before and it’s such a scary title - I thought I was going to die. My saving grace was hearing of stories of people who recovered from their relapses and went on to live a ‘normal’ life. They say your first relapse is the worst, but it left me feeling terrified. Since then I’ve regained my strength and try to tackle it with a determined attitude. I won’t let it steal my life from me.
What sort of symptoms do you have or have you experienced?
Brain fog, memory problems, and speech slurring or stuttering are probably the most frustrating. I do also experience night-time muscle spasms which are painful and exhausting, but the medication and CBD oil rubs have helped a lot with that. I get tired very easily, and I’m always terrified I’ll ‘lose my swallow’ – when I’m tired it becomes a conscious effort to swallow. The 'MS hug' is a strong symptom which is a tightening of muscles around my ribcage which also makes it difficult to take a deep breath, but there are exercises to stretch these muscles and it comes and goes. The biggest symptom is numbness. I’m lucky enough not to have experienced sight problems as this is a common symptom with many people living with MS experiencing temporary blindness in one or both eyes.
Have there been any treatments, lifestyle changes, alternative therapies or products which you have found have helped you in particular?
I’m still at the start of my journey, so I haven’t yet received my treatment, but there is a Disease Modifying Drug option which knocks out your immune system to stop it eating your nerves, and I’m starting that this Summer. I’m taking a huge amount of vitamins and eating much more healthy now. I take 4000iud of vitamin D, K2, C, flaxseed and turmeric supplements to reduce inflammation of my spine. I also take CBD supplements to ease the night time muscle spasms and I’ve found the Holland and Barrett CBD Muscle Balm to be great! I’m lucky enough to own a horse so the gentle exercise of working down on the farm carrying hay and getting back in the saddle has strengthened my legs so much.
Do you have a personal approach which you think has helped you cope?
I own my own poetry publishing company Fawn Press, and I’ve found that absorbing myself in my work helps me not to dwell on the melancholy feelings I sometimes get. If I start to feel down I think to myself ‘what a waste of time’ and try to absorb myself in reading or writing or another enjoyable activity. It’s easy to get lost in the feelings of futility that come with the inevitability of deterioration thanks to a progressive and incurable disease, but spending the time I have right now and being mindful of the things I CAN do rather than what I CAN’T do is a really good way to refocus your attention to the present moment.
What advice would you give someone who has just been diagnosed with MS? Are there any things you would tell yourself at diagnosis with what you know now?
It’s okay to take things at your own pace. Every day will feel different, and it’s frustrating when one day you’ve done loads of exercise but the next you can barely take a shower. Don’t beat yourself up, your worth is not defined by what you can do. Love yourself enough to know you deserve breaks. Chronic fatigue is so difficult to deal with, and remember It’s okay to ask for help!
What is the worst thing about MS?
It's the knowledge that things are definitely going to get worse. It’s the inevitability of it, knowing that in 10-20-30 years I’ll be unable to walk and won’t be able to ride my horse ever again. Sometimes I just cry because I have no control over it. I worry how my husband will still be attracted to me or whether I’ll become a burden. I think it’s good to be honest about this though because others will be feeling it too. I just have to remember to bring my focus back to the here and now.
Are there any positives you feel you have experienced or felt which you may not have done if you didn’t have MS?
It has definitely made me appreciate my family more. My husband and I were going through a rough patch in the 6 months before I got admitted to hospital, we were both working all the time on weekends and evenings and never seeing one another. Now we are so grateful for one another, it’s important to us to protect our time to spend together.
Do you believe we will see a cure for MS in the future?
I really hope so. There are advancements happening all the time. We have to stay positive!
Is there any one thing or things friends and family can do at diagnosis and ongoing to help ease the day to day?
I’m so lucky to have amazing friends who are patient with me if I don’t have the energy to reply to texts for weeks on end. I would say just please be patient, Ms’ers might not have the energy to make every date you set, and might be embarrassed to ask for help. I’ve apologised loads to friends for forgetting to reply or simply not having the energy, really all we want to know and be reminded of (well me anyway), is that you love us!
Do you think people treat you differently when you’re using crutches or walking sticks?
I’m very lucky in that I have experienced a lot of kindness and offers to help through doorways etc, although I do sometimes get funny looks when going into the disabled toilets because I’m otherwise a young and fashionable ‘able’ looking person. I once had a shop worker demand to see ‘proof’ of my disability when I asked for a sunflower lanyard (which for the record is in fact illegal). That sucked. Disabled people come in all forms, and just because you can’t SEE my numb leg doesn’t mean it’s any less of a tripping hazard for me.
What gets you out of bed in the morning?
My pets are hungry… or I’m hungry…food basically! Joking aside, I have a real longing for my writing to be remembered even after I’m gone, and for my work within the poetry scene to make a long-lasting impact so really that's what drives me.
Why did you choose Cool Crutches and Walking Sticks and have they changed your view of mobility aids?
When I was allowed to come home from hospital I was very weak, my right foot drooped and I would trip all the time. It was suggested to me that I got a mobility aid, and that in itself was quite a scary thing. I think I had some hidden internalised ablism to overcome because I was so worried that a cane would make me seem somehow lesser than my previous self. However when I was googling “cool crutches” the brand Cool Crutches literally popped up, and I felt so grateful that I would have a sassy alternative option that I could style to my personality and quirky way of dressing. It wasn’t about trying to hide the fact that I was suddenly disabled, or in any way embarrassed – it was the opposite! I felt like it was a cool fashion accessory that I could style with my outfit the same way that I could a handbag. I saw pictures on their social media of girls who looked like me, young, with tattoos and piercings and dyed hair – I felt seen and represented and that mattered a lot to me. It somehow softened the impact of my diagnosis. My life had been turned upside down overnight it seemed, but I could still be myself. I’m so grateful to Cool Crutches for that!
A huge thank you to Scarlett for sharing her story with us, as grateful as she is to us we are enormously grateful she chose to use our walking sticks and feel very proud to have such a talented poet and lovely woman in our midst.
To find out more about Multiple Sclerosis, please find a number of brilliant resources below:
MS Society UK - https://www.mssociety.org.uk/
MS Society Helpline - 0808 800 8000
MS Trust - https://mstrust.org.uk/
Shift MS - https://shift.ms/
To find out more about Scarlett, check out her instagram via https://www.instagram.com/scarlett.ward