The protective factor of forgetting

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I felt disheartened when I found out that an old spinal cord lesion has reappeared. Coupled with some new symptoms it was looking like a little relapse had snuck up on me. My Neuro and I agreed to scare it with some steroids so off Dan and I went to the local private hospital for three days of IV steroids.

How bad can steroid treatment really be? I knew that I recovered eventually last time.

I had forgotten…

The vile feeling of coming down from the high dose of methylprednisolone leaves me feeling hungover, beyond tired, emotionally unstable and trapped in the memories of how sick I had been back at that early diagnosis time in 2017.

Suddenly I was back to feeling emotional, uncertain and not being able to remember what wellness really feels like. My thoughts go wild, my appetite disappears and the ups and downs are relentless. I really had forgotten what was on the way.

As usual in the midst of this there have been little bright spots, a new friend visiting and bringing lunch, a friend bringing dinner over for our family, an extra long yoga/ meditation session and the time to stop and rest. I am so grateful again for my recovery, my lounge room full of flowering orchids, our sunny deck to lie on and the peace that the days bring.

I will not push myself to get back on track this time. I will be gentle and kind to myself. I will walk and swim and do what I can when I can. I have been getting in and out of bed for days. Up and down- I feel OK so I get up and do a few things and then I hit the wall and head back to my room. My next dose of Tysabri is just around the corner next week and there is some more recovery that needs to happen here before I can be ready for the next medication hit.

The long days are back. Staring at the walls or out the window, not being able to concentrate on a book or a story or even a TV show storyline. Feeling emotional and getting teary when watching an episode Kath and Kim because my emotions are so wobbly. The dark thoughts that float back in and the bewilderment of how, what, when did this all happen?

Tired, sick, sad. What a way to finish the week.

 

 

And then, slowly there was a shift and ten days after the last dose I have now had two days in a row where I haven’t needed to sleep during the day. I was back for Tysabri today and so glad that there was time to let things improve in their own time.

As they always do.

 

Thanks for reading,

Simonne XX

 

Two years of life with MS

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August 11 2019:  The 2 year anniversary of (knowingly) living with Multiple Sclerosis.

If I knew back then what I do now, I could have been more confident in my body’s ability for healing. I could have had more trust in myself and allowed myself all of the time I needed to get well again without judgement.

Those early weeks and months are still a blur but I have some very fond memories of conversations and clarifying moments that I had with others. I will always remember the genuine responses of friends as well as the disappointment I felt when I was let down by people that I hadn’t expected would respond in the way that they did. I have said it before -MS in my life has been a mixed bag and for sure has been my best enemy.

The uninvited arrival of MS in 2017 came at a time where I was ready to focus on new things and was welcoming some happy changes in my life. It was also a time where I was physically unhealthy- carrying extra weight, not sleeping and with a relationship with wine that was bordering on obsession. I was working excessive hours each week with no plans to slow down and my life focus had gotten all muddled with ridiculous goals and expectations for myself. While I knew in theory about balance and self-care, I was not very good at reflecting on or changing my own choices.

My days now have come to a manageable pace with a nice balance that I often reflect on with much gratitude. I would never have predicted this switch but I am grateful everyday for where I am now, the people I have met and the lessons I have experienced along the way. The gentle balance of working a few days a week with the very important job of maintaining my current health and wellbeing seems to be working. My exercise and stretching routine takes a couple of hours each morning and then my meal planning and ensuring that I hit nutrition targets takes some more time. The rest of the day finds me reading, resting, walking, working and scrolling (often more than I planned too!). I have regular physiotherapy, exercise physiology and psychology sessions and it is reassuring to have professionals keeping an eye on my progress.

Over the past month I have realised that there have been more improvements with my health- I haven’t been sleeping during the day and I can stay awake later at night. This morning I slept in until 8am for the first time in forever. I still find myself very fatigued mentally and this is so frustrating. I appreciate the positive physical changes but I struggle with the ongoing cognitive challenges. Forgetting, confusion, getting muddled and the weird unexplainable things I do continue.

My last few MRI’s have shown stability and no evidence of disease progression and I do not take this lightly. The uncertainty is real but my hope is strong. I have regular contact with amazing people living with MS who encourage and inspire me. My family are here with me on our rollercoaster ride and at the moment the ride is gentle and none of us are covering our eyes or throwing up.

Thankyou for reading and thankyou to all who have checked in on me, asked my kids how they are going, spent time chilling with my family or have sent loving thoughts and kindness our way.

Simonne XX

Momentum

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I move all day every day. I walk and walk and I rarely sit still. I walk fast and I just keep going. When I was out walking a few days ago I was aware of how much easier it is to keep going once the momentum kicks in.

I think that this is an excellent description of how I am living my life at the moment. If I stop there is a risk that it will be harder to get moving again so it easier to go with the forward flow. I feel like I have created this flow and I can pinpoint many times where it would have been easy to stop and not put the effort in. So many crossroads I have navigated so far.

 

I cut my hand recently and needed stitches. It’s OK now and has healed well but those first few days were challenging. It didn’t hurt but I knew that I needed to keep it dry and protected and when I had the dressing changed every few days the nurse reminded me that I wasn’t meant to be using it. At all…..

She even saw me in the supermarket during the weekend holding my shopping list in my hand- written on a single piece of paper, and was surprised that I had thought that this was included in the ‘not using it’ instruction.

 

So the week where I was bandaged and incapacitated was a challenge. It helped me to realise that I am terrible at sitting still and letting other people do things for me. Which in turn motivated me even more to keep moving and making sure that I am doing everything I possibly can do to stay healthy and mobile. I’ve recently added Physiotherapy and Pilates into my health and wellbeing regime and I also got back in the local pool to swim laps again.

 

I had my six monthly Neurologist appointment last week and Dan and I were happy to realise that we didn’t really have anything that we needed to talk to him about. For every other appointment I had taken a list of questions that we needed answers for. This was a great reminder of how far my health has come.

 

This must be what stability with MS is like. It sure has taken awhile to get here!

 

Thanks for reading,

Simonne xx

It’s official- it is MS. What next?

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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!!

Twenty Four Hours

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What a difference a day makes.

 

Sitting here on the lounge, it’s 5pm and I am in my PJ’s but I am awake. Yesterday at this time I was curled up in the hammock in my work clothes having a snooze and a little cry.

 

I have just finished my second (and last) work day for the week and I am feeling good. I did not feel good at 5pm yesterday.

 

I had had a day where I felt like dementia was setting in. I was tired, confused and having trouble remembering the simplest things. It had started earlier in the day and I noticed it while I was walking Daniel to school. I was frustrated because I had realised that I had forgotten to do a simple thing on Friday afternoon. I had meant to go back to the chemist to pick up a script that I had dropped in earlier that day. I know that this seems like a little thing. Something that everyone does now and then.

 

When I do something like this it instantly starts the anxiety about disease progression and possible cognitive decline (also the risk of PML but I won’t let myself dwell on this). I am scared about the things that I am not remembering or noticing that I am missing.

 

Driving home from work yesterday was hard work. If I have ever wished for a Tesla self driving car it was then. Getting home from work was hard work and the evening stretching in front of me before I could go to bed felt like an impossibility to cope with.

 

Today I feel fine. I had a great day at work where I was able to juggle more than one thing at a time, I chatted happily with work friends, I managed to string sensible sentences together and I even cracked some jokes.  I popped out for a coffee with a work friend in the afternoon and told her a little bit about these different days I have had.

 

Yesterday I stayed fairly quiet as I was busy concentrating on looking like I was holding it together, I was taking extra time processing information and my attention span was a little dismal. I got through my day but I knew that I was slower and less switched on than usual.

 

I will try to remember for next time that a lot can change in 24 hours. It’s the nature of the beast that is MS.

 

I can do this.

 

 

 

 

Kindness Counts

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I have met so many people over the past 16 months and no matter what their expertise is or their knowledge or the possible impact of these for me, the most important thing is their kindness.

From my beautiful GP, Dr G, when she provided the initial diagnosis, to regular blood tests, ringing up to make appointments, popping in to pick up a script, sitting in a hospital ward for treatment, having an MRI, having a chiropractic adjustment, to going to a therapy session. The most important thing is the kindness shown to me. I will never forget these moments of connection when someone has taken the time to just be kind.

This whole thing is scary and while I look so brave I am often shit scared and the kindness counts.

From my first meeting with my Cardiologist, Dr S, where he listened to my story, did some initial examinations and lined up more tests. As we were leaving he hugged me and said “leave the heart worries with me- the MS is enough for you to worry about”.

To Dan who realises that my silence in the car driving to another MRI appointment means that I’m really just not looking forward to the lonely 90 mins ahead of me in the tube and that taking me out for coffee afterwards will restore some sense of normality.

To my Psychologist who gives me the space to talk through whatever it is that I need to process in the session- just sharing her wisdom, some balance and kindness as needed.

To my Chiropractor and his awesome receptionist who show genuine care for how I am going and who keep an eye on my progress with return to work and in turn share a little bit of their lives with me.

To my OT who gives me amazing arm massages while checking in with me about the ongoing saga of my right hand, associated strength difficulties and the flow on impact on my posture and general strength.

To my Exercise Physiologist who is helping with the flow on effect of my hand difficulties on my posture. She helps to develop new strengthening and stretching activities each session- remembers my stories from previous sessions and asks for updates. The kindness, the care and our laughter make these sessions super cool.

I have read lots of books about the connection between medical specialists and patients and there is such a strong link between having a positive relationship and better outcomes.

I am a huge believer in my own professional practice in learning from people who are actually experiencing the difficulty. My Neurologists could learn so much from me (and their other patients) if they just asked and listened. I am often told- “that isn’t MS” or “that isn’t from Tysabri”. Yet my Instagram friends report similar symptoms and experiences. So while maybe not evidence based or from a journal-  it is instead from real life, from people battling this crap day in, day out. We are the experts really.

 

Since meeting my GP, Dr C- whose office is walking distance from our new home, we have developed a great working relationship. In one of our first appointments she told me that I am the expert in managing this MS and that she will always listen to what I say is going on and will help me to work it out- and she has. She reassures me with the weird health niggles and listens when I bring new information about the Overcoming MS program, she comments when I’m looking well and gives care and kindness when I turn up looking like I have been through the wringer.

 

Kindness counts and can really be the main thing another person needs from you today.

 

Thanks for reading,

Simonne XXX

Be still my beating heart

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Christmas  2017

I was in contact with some of my friends in my MS community during Christmas Day and also sent messages to my siblings. I was pleased that they all responded-  this is the first Christmas that I haven’t seen any of my own family.

 

I called my Aunty Heaven on Christmas Eve and it was positive talking to her. They will all be staying locally in January and we will catch up with her and my cousins and their children in this time. She has been an excellent support to me this year and I appreciate the strong connection between us.

 

My friend Leah visited with her son on the weekend before Christmas and we had a deep conversation (as we often do) over a glass of wine. She brought me a gift that she had seen and had felt guided to buy. It was a metal butterfly and she and I have had many conversations about butterflies representing my Mum for me.

 

 

Christmas Day

I had such a good Christmas Day- it was my little family and Dan’s parents and Dave  and Kirsten (D and K) and our kids and it was a relaxed and happy day. We shared lots of bottles of expensive bubbles over the day and I’m sure this contributed to my feeling so chilled.

 

Thomas had driven the kids home after their family celebrations with their Dad on Christmas Eve and he stayed here ready to wake up and open his gifts from Santa with his siblings. He popped back in on Boxing Day to have lunch and was able to help Daniel sort out his PS4 and new games. I love watching them talking together. Daniel looks up to his big brother- so cute.

 

I woke up at 4.30am on Christmas morning feeling energetic and ready to start the day. I spent time meditating and then went out early for my walk. It was very quiet on the lake track -most of my usual friends must have slept in for Christmas. Oh the serenity!!

 

During the day the kids went out in the kayaks and took bikes out along the cycleway and the ladies went for a nice walk up to the ski park in the afternoon. Dan and I have talked about how happy we are that our house can be enjoyed by others and that it seems to expand to fit our visitors comfortably.

 

Dan cooked mud and blue swimmer crabs in a szechaun sauce for dinner and it was an experience we shared with D and K sitting for an hour slowly eating our way through the bowl of crabs Dan had caught in our backyard. It was a great end to a busy day.

 

Boxing Day

The girls went out shopping this morning and bought me my favourite Clinique products that have been out of stock for months. I am proud that they are learning the benefits of surprising someone with a spontaneous, heartfelt gift.

 

I had woken up at 1am this morning feeling awful. My heart was racing and I felt really weird (weirder than normal!). After an hour of lying quietly and then walking around the house I turned the light on and woke Dan up. Then I started shaking- this is a common side effect for me a few days after having a dose of Tysabri. Even though I started to realise that it was something that I had experienced before I was convinced I was going to die. I was rueing the decision to keep drinking those bubbles all day and I was convinced that I had poisoned myself drinking so much and so close to a Tysabri dose.

 

I have been thinking lately that when I die it will be Mum that comes to take me with her. I can picture her sitting and waiting for me and then quietly taking me away with her. I was so convinced that I was going last night I went into the lounge room to see if she was waiting in there. I kept thinking “this is it- this is how it ends”. I went in to kiss Daniel but didn’t want to freak Mikayla and Nicola out so didn’t go into their room.

 

After a while it started to settle and I dozed and eventually fell back asleep. I didn’t go out for my morning walk the next day and didn’t have much of an appetite. On the upside- I have slept on and off today and hopefully will catch up on some of the sleep I have missed over the past few crazy days.

 

When Dan and I talked about it he said that my breathing had been quick too and I am wondering if it was more anxiety related and that the combination of drinking alcohol, being tired and not drinking my usual water all day had impacted this.

 

Anxiety and managing the instant impact that this can have is so new to me. It comes out of nowhere (last night I was asleep and dreaming when it started). I realise that if you don’t recognise what is happening you can start to think that it is medical rather than psychological and that starts a spiral effect. During the day if I notice that I am starting to feel unsettled I start a mediation if I am at home or I focus on some positive thinking and calm breathing if I am out. I have found that catching it quickly has worked so far.

 

I am feeling very relieved that I was here for Christmas and that it all went well. Dan and I have had more and more happy experiences with Christmas over the past few years and these have started to restore our ability to enjoy the day when it arrives.

 

This was my first non-meat Christmas and I survived and at no time was I tempted to eat anything off my Overcoming MS (OMS) program. I even experimented with dairy free salmon dip and vegan gingerbread. I don’t feel like I missed out on anything and it is a reminder of how seriously I am taking all of this. I was always someone who ate a lot at Christmas and who happily tried everything. It is funny to now need to be a fussy/ particular eater. Dan and I had gone out for breakfast on the weekend and after finally finding simple toast and tomato on the menu I had to send the first plate back to the kitchen because they had buttered the bread. I had a moment where I had to laugh again while I drank my decaf latte on almond milk- Who am I and how did I get here?

 

For the record – the butter free toast and tomato were delicious. I wasn’t even tempted to taste Dan’s egg and bacon roll!!

 

I have said to Dan that I am grateful that he has been very supportive of my dietary and lifestyle changes. My whole family have been and I wonder now what they would do if I sat in front of them with a plate of meat or something deep fried. All good guys- not going to happen!

 

I accept that these are lifestyle changes that are here for a long time. As I also plan to be.

 

Thanks for reading,

Simonne XXX

 

Coming up in future episodes:

We meet the Cardiologist because those heart issues go on and on,

I have a run in with anemia,

we meet the new Neurologist,

and the NDIS ball starts rolling and the next bumpy ride starts…….