It’s official- it is MS. What next?

dan and i canoe

Early diagnosis: That time when a whirlwind met the planet’s craziest rollercoaster and then together they headed to topsy turvy land.

I’ve got a few ideas to share!!

Read everything.
I googled everything- every new medical term, healing and recovery stories and healthy lifestyle tips. This was how I found the Overcoming MS program in those first few weeks.
I have read about celery juice, flaxseed oil, happiness, mindfulness, my spirit, the China study, how brains heal, changing my thinking, magnesium, how not to die and so many different diets which all totally contradict each other. If you read widely then you can make your own informed choices.

I watch lots of documentaries, listen to online meditations and keep my ears out for interesting new research and information.

I still listen regularly to one of my favourite meditations for healing that I found on YouTube. It takes me back to those earlier days where everything felt so uncertain and it was a relief to be listening to a strong message about having the power over healing in my body. It is bliss to lie down, chill out and soak up those positive vibes.

 

Ask lots of questions
Be prepared for your appointments (there will be lots of them and most of them will cost lots of money!). I take a list and I stay there until I have been able to tick everything off my list as have being answered. Dan often prompts me to keep asking my questions as it can feel exhausting and infuriating- especially if your persistence is met with resistance from professionals.

 

Explore other options if your current situation isn’t working for you
If there is a time in your life where you need to feel a personal fit, this is it. I recognise that I need to feel a connection with individuals and to feel that my professional team are working with me on achieving my personal goals. I started to feel like I was banging my head against a brick wall in my appointments with my Neurologist so I found a new one closer to home and made the switch.

This also applies to your work situation- are you expecting yourself to stay with a full time position that is hard enough to juggle with family life when you are well and with all cylinders firing? Can you make adjustments to have flexible attendance, reduced hours or different duties? Can you arrange accommodations to help to have your work role suit where your health is right now? Don’t be scared to ask for changes. One of the best things that my work place has done for me was to give me access to a car parking space near my office. After the mind frazzling drive to work in the mornings, not having to look for a car space before heading in to start my day has been magic.

 

Work out your why?
Why do I want to stay healthy? Who is important to me? What are my goals- now and in the future? How am I going to keep going?
Write your thoughts down, make lists, mindmap your ideas. It can be very reassuring to be able to look at these reminders on the days where everything seems so hard.

 
Be kind.

This is so important that I have written a whole blog post on it!  At the end of the day everyone has a job to do and we never know what others have been through just to get to being in front of you in this moment. Be polite and say thank you- often!

 
Get your support crew sorted
And stay committed to seeing them. There may be times where you don’t feel well enough or don’t feel like you have the energy to stick to plans but sometimes this is when you need it the most. Tell your friends and family what works for you and ask for help when you need it (also then accept the help. This can take some practice!)

Facebook and Instagram can be a great way to connect with other people like us, who are living with MS everyday. These are important forums for support, care, advice, information and a sense of connection.

 

Take time out for recovery
Depending on how your body and psyche have taken the hit from MS, this takes time and patience. I kept feeling so frustrated that my body wasn’t getting better to the timetable that I had set. It wasn’t until my Neurologist finally explained that for me it was like recovering from a car accident where I had sustained a traumatic brain injury. Aha! That’s why tying my shoelaces and thinking about more than one thing at a time was such hard work. I took the pressure off myself and let those months of recovery roll along.

Rest when you feel tired. Stay in bed when you feel like you have been hit by something hard and unrelenting. Eat a piece of fruit if you don’t have the appetite for a whole meal. Being gentle with yourself now will payoff in your journey to recovery.

Tomorrow is a new day.

 

 

Thankyou for reading,

Simonne XX

 

PS. This photo was from one of our first adventures out after I had spent months on the lounge recovering from August to December 2017. It was such a relief to be out on the water. Some freedom!!

Author: boulevardedreaming

My journey through diagnosis with MS and the first years of living positively every day.

One thought on “It’s official- it is MS. What next?”

  1. Wonderful and helpful hints for those seeking understanding of what is happening in their lives.
    As I read I could visualise you sharing with your colleagues to help us understand. All your reading and research you have certainly used to your advantage.
    Keep on keeping on my dear friend

    Like

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