MS Awareness Week: Insider Advice For A Quality Life
MS Awareness Week: Insider Advice For A Quality Life
MS Awareness Week 2020 began on Monday 20th April and finishes on the 26th. This week is a chance to raise awareness of Multiple Sclerosis or MS, so I’m sharing information about what MS is, the symptoms and how it affects those living with this invisible chronic condition.
This is the first of my awareness blog posts that I’ll be sharing regularly with you. So why do I want to start with MS? As a young adult one of my best friends cared for her mother who had advanced MS. I remember the last day I visited clearly as she passed away soon after.
Our friendship gradually drifted apart but I’ve had other friends who’ve had a parent with MS and I’ve seen first hand some of the amazing fundraising efforts. Now I have a few friends (some of the first friends I made as a chronic warrior) who are fighting their own battles with MS.
This one’s personal so I’d love it if you share this blog, visit the blogs I recommend or look out for #ThisIsMS or #MSWeek on social media. I want to do what I can to help spread the word and would be thrilled if you too pass this on? For more details click here to visit this MS Society Awareness Week page.
This MS Awareness Week the MS Society wants to raise awareness of life with MS. They want to show how someone may be feeling on the inside, when from the outside they ‘don’t look ill’. For all of us living with chronic invisible illnesses, we may struggle with anxiety or stress so I’m giving away my free grounding exercises for anxiety at the end of this post.
If you just can’t wait, grab my free grounding techniques guide now. You’ll get this and all my free resources to help you develop your own coping strategies for your family well-being/living with chronic invisible illness. Click the button to download this guide from my VIP Resources Library now.
An Overview of MS
MS or Multiple Sclerosis is a disease affecting the central nervous system (the brain and spinal cord) and is a chronic or life long condition. Everyone affected by MS will experience it differently and will have varying degrees of symptoms across the three main types of MS.
Approximately 130,000 people in the UK have MS, with nearly three times more women diagnosed with the condition than Men. Approximately 100 people are diagnosed each week, with most of these in their 20s and 30s, making it the most common Central Nervous System condition in young adults.
Our central nervous system consists of the brain and spinal cord and plays a vital role in the control of most bodily functions. Nerve cells exit the brainstem and spinal cord, processing information and sending messages to and from different areas of your body.
In MS patients, the central nervous system is attacked by mistake. The immune system attacks myelin, a membrane that insulates your nerves, causing lesions. These cause MS symptoms, due to the damage stopping messages from the brain travelling smoothly.
When new MS lesions develop, you may experience a relapse. In the earlier stages, the body naturally repairs most of the damage and symptoms go away but eventually most people develop symptoms that worsen over time.
What are the symptoms of MS?
MS Awareness Week 2020 wants to raise awareness of more than the physical symptoms that are experienced during an MS relapse so this is a short list of symptoms. If you wish to know more about symptoms and relapses then visit this section on the MS Trust’s website.
Common symptoms around the time of diagnosis:
Fatigue
Pins and needles or numbness
Pain
Problems with eyesight
Memory problems
Walking difficulties e.g. tripping, stumbling, weakness or a heavy legs
Dizziness and vertigo
Other possible symptoms:
Muscle stiffness and spasms
Bladder and bowel problems
Difficulty swallowing
Sexual difficulties
Migraines
Seizures
Speech problems
Hearing loss
Mood changes
MS Awareness Week 2020
This MS Awareness Week, the MS society wants to focus on raising awareness of the hidden side of this invisible illness, by asking people to share their stories of living with MS. They’re asking you to share what MS means to you, how it impacts your life and makes you feel.
If you’re struggling due to living with a chronic illness and need support to cope with anxiety then please grab a copy of this free guide to grounding exercises for anxiety. It helps you to explore 5 simple exercises and learn which you want to recall during an anxiety or panic attack.
If you want to join in head to Get Involved MS Awareness Week for more details on how to share your story. If you want to read these stories then use the hashtags #ThisIsMS and #MSWeek on Twitter, Facebook or Instagram this week.
To help raise awareness I’m sharing my favourite articles about living with this condition by my top 5 MS bloggers. MS has many symptoms but not everyone will experience all of them, so I’m sharing stories from bloggers who experience a range of symptoms.
The main message of MS Awareness Week is to show what is going on beneath the surface. As I can’t explain this to you myself, I’m going to leave that up to these 5 MS advocates. I hope you get an increased understanding of the impact MS has. This is MS...
5 Experts Share A Behind The Scenes Hope - MS Awareness Week
https://stumblinginflats.com - Barbara from Stumbling In Flats is an established writer, author and blogger. I first came across her as a fellow Teva Life Effects contributor. She lives with ‘The Teenager’ in Cardiff and has been diagnosed with MS for 9 years. Her book, Stumbling In Flats, was short-listed for the International Rubery Book Award 2015.
‘We’ll Do What We Do Best’ seems like the perfect blog post to share for MS Awareness Week. She writes about how the MS community has come together, at a time when MS patients are ‘shielding’. This post has definitely made me think.
Her observation on ‘doling out advice to normally-healthy people stuck at home, climbing the walls’, is familiar as I feel like I’ve been training for lockdown. Everyone is getting a glimpse of our lifestyle but we wish the many resources, like theatre at home, were available for us all the time.
2. http://trippingthroughtreacle.com - Jen’s award winning blog - Tripping Through Treacle is about her attempt at a healthy lifestyle, parenting, mental health and more. She’s had MS for over 25 years and tries to stay positive with support from her family and friends.
I recommend Jenny’s post - ‘Bravery’ in Chronic Illness which talks about both points of view on being told you’re brave, amongst the chronic illness community. I feel that I’m just living the hand I was dealt but I do understand how some feel like people are pitying you when they tell you you're brave.
Others take it as a compliment, feeling like it gives them strength, especially on those days when they feel anything but brave. Jen observes that there’s actually a spectrum of opinion on how being called brave makes people feel.
Personally I don't feel that people are pitying me, rather that they cannot see themselves in my position so cannot envisage how they would cope. I struggle more with being called ‘inspirational’, for similar reasons but that’s a post for another day.
3. https://www.anempoweredspirit.com - An Empowered Spirit is an award winning blog written by Cathy, who’s been living with MS since 1986. She wants to empower, inspire, and educate her readers so they can live a healthy and informed life while living with MS.
As this year’s MS Awareness Week is aiming to raise awareness of the invisible side of MS, I’ve chosen to highlight her blog about relationships and MS. She writes of how having a support network reduces anxiety and stress but sadly many people lose this, after a chronic illness diagnosis.
After my diagnosis, my husband and I took action and asked for support. Through this we found how, as a family, we needed to work as a team. It’s made us all more resilient and empathetic.
I agree with Cathy when she says that successful relationships require learning how to voice your feelings in a caring way. Having this skill is vital to how we cope as a couple and as a family, with the strains of chronic illness life.
4. https://www.lifeonaseesaw.co.uk - Kat from Life On A Seesaw is also a contributor to Teva Life Effects. I recently saw that she lived near me so I messaged her and discovered she lives in the same village we moved from, just before I was diagnosed.
Kat lives with her husband and young son and was diagnosed with Multiple Sclerosis in 2016. She loves photography, writing and being in nature. Her message is that we are much more than our diagnosis and hopes to provide empowering articles.
I recommend reading her Just Diagnosed? Tips For Patients post. She says that “When you are diagnosed with MS, so is everyone in your family.” Her post is intended to answer some of the questions Kat had when she was diagnosed.
Regardless of how you come to be diagnosed with MS, Kat say that it’s still a shock. She talks about you and your loved ones all needing time to digest your diagnosis. I feel this is a universally important tip for anyone diagnosed with a life changing condition.
5. https://fightmsdaily.com - Alyssa from Fight MS Daily is an award winning, inspirational chronic illness blogger. She has been diagnosed with MS for over 19 years but still pushes the barriers that MS puts in front of her. She says “In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times!”
I recommend reading her post Fight the Battle & Win the War! She acknowledges that although life with a chronic illness with painful symptoms is not easy. However she has vowed not to let pain win the battle.
She comments on the things we can do to fight the pain we may feel, acknowledging that what works for her might not work for anyone else. For example, she finds that her pain lessens if she keeps moving, despite that not making much sense to her.
MS FAQs
I hope, as do the writers of the blogs above, that you’ve found this information useful. I also hope that by signposting these blogs for you that you get the answers you need and the support that we as bloggers, hope to provide you with.
I’ve added FAQs to the end of the blog for those of you looking for a quick answer to your questions. However if you want non-urgent medical advice, please visit these sites for support:
https://www.nationalmssociety.org
Is there a cure for MS?
No there isn’t a cure for MS, but there are treatments for some of the physical symptoms and medications which reduce the amount and severity of relapses.
What causes MS?
It’s still unknown what causes Multiple Sclerosis but it’s being actively researched. There seems to be a number of different factors that when put together, trigger MS. Genes may make up around half the risk of getting MS.
Can I treat myself by eating healthily?
It is really important that you take any medication prescribed by your physician. There are complementary therapies that some people find helps reduce the severity of relapses.
It’s also thought that a lack of sunshine or exposure to some viruses, smoking, obesity and long-term solvent exposure may be a factor. Being healthy is a good choice but it cannot replace your medical treatment plan.
Can I have children?
“MS rarely affects a woman’s ability to get pregnant, carry a child or give birth. A woman with MS is less likely to have a relapse during pregnancy, although the risk of relapse increases during the six months after the birth.” It is important that you discuss this with your doctor because of the risk that some medications could have on a foetus.
Is MS hereditary ?
Some genes do make it more likely but this on it’s own is not enough to trigger the condition. The risk of another member of your family getting MS is small. The cause of MS is a vital area of research and it’s thought that a number of factors come together to trigger MS.
Will I become disabled?
MS may impact your ability to do certain things in the future and you’ll need to adapt with these changes. MS can cause disability, however, most people won’t need to use a wheelchair permanently.
What is the prognosis?
MS is a lifelong condition but it’s rarely fatal due to advances in treatments but as everyone has a different experience of symptoms,cno-one can predict how MS will affect you. Most people with MS have a long life, with an lifespan estimate of six years less than the general population.
Final Thoughts
By writing this blog, I’ve learnt that you wouldn’t know someone was experiencing almost all the symptoms of MS. Therefore we must all remember that we never know what someone is going through underneath the surface, so please choose kindness. In light of this, if you feel that you aren't coping well with anxiety or panic attacks, please head to my blog post - How To Develop Easy Strategies For Coping With Anxiety.
Just a reminder that this MS Awareness Week, the MS Society wants to raise awareness of life with MS. They want to show how someone may be feeling on the inside, when from the outside they ‘don’t look ill’. Help make sure that no one has to suffer MS alone by sharing your story on social media using the hashtag #ThisIsMS. Find out more detail by visiting the MS Society’s MS Week page.
To help raise awareness for MS, please share this blog and look out for #ThisIsMS or #MSWeek on social media. If you'd like me to see it then please tag me in it (see my links below). I’d love to hear from you in the comments if you visited any of my 5 blog recommendations or if any of this spoke to you
Thank you so much to the ladies who kindly let me share their blogs with you today. If you have MS and are shielding or in self isolation now, I send you my best wishes and positive energy to help get you through.
Stay Safe,
Laura 💜
P.S Don't forget to download my grounding exercises for coping with anxiety free guide from my Strong Mum's Resource Area when you sign up to my mailing list. This guide will help you develop your own coping strategies for your own and your family’s well-being/living with chronic invisible illness.
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