Exercising With Chiari 1 Malformation

Exercising With Chiari 1 Malformation

I often refer to my short life time as, pre Chiari life and post Chiari life. The things I used to do and the things that I can no longer do. And I say that I can no longer do, because of the physical limitations I have now since my Chiari + Syringomyelia – a congenital diagnosis. It’s baffling to know how much a diagnosis can be the result of so many life changes. The most simple things can now take so much effort and energy – not to mention can bring on some unwanted physical pain.

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My pre Chiari life, the married life, the stay at home mom life with kids included in particular enjoying lots of the outdoors. My days consisted of going outside daily. I especially loved to run, so I would get the littlest ones in the stroller while the rest peddled beside me in their tiny bicycles. We had a daily schedule that included the outdoors, after breakfast we went outside with the ball and spent sometime breathing in some fresh air and after lunch, right before their nap time, I’d get us all ready so that this mama could get a nice jog. So, simple, so refreshing, something the children really looked forward to.

My life post Chiari includes a lot of doctors appointments – from regularly visiting the neurologist and primary, to regular MRI’s to CT Scans, medications – most on trial run to ‘see’ if they help with the pain, what pain you ask, back pain, neck pain, head pain, anything from vertigo to headaches, imbalance and sensitivity to light from the sun to headlights, just to name a few.  My weight with all this going on has – understandably has been fluctuating and now being at the heaviest. Aside from the obvious and that is the pregnancies I’ve had, Chiari isn’t much help in this area either.

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When it comes to exercising, Chiari can really feel like it’s holding me back. I know what you may think and I’m really trying not to be ‘Negative Nancy’ but, with the physical pain I have, it’s hard to get outdoors. My goal is to lose the weight but not break my back in the process – literally.

Here are some helpful tips I’ve found while researching safe ways to exercising while having Chiari Malformation.

  • First and foremost speak to your doctor. The doctor can provide an exercise program to get you started and give you the OK to begin.
  • If you’ve been through Physical Therapy, do you remember the exercises you would do with your therapist? They test you to know how well you can bend, walk around, balance, reach, check your heart rate while you’re active, all these go hand in hand with the exercising that you should and should not be doing.
  • Choose an exercise based on the symptoms and extent of the malformation.
  • The right exercise can ease the stress on the neck.
  • There are low impact exercises that you can try such as walking, swimming and pilates
  • Walking, be sure you’re wearing comfortable walking shoes.
  • Pilates, strengthens your core, abs, obliques and lower back, it helps keep your body balanced and stable. It keeps the spine stable and safe. This one is recommended by the department of neurology at the hospital where I was operated for Syringomyelia but they also specialize in Chiari Malformation.
  • Chiari Malformation patients have problems with the vertebra and disc in the cervical spine resulting this area to be unstable. So, many exercises including lifting weights could potentially be dangerous.
  • Lifting weights is not recommended as this can put pressure and strain on the neck. Straining can increase CSF pressure and if there’s an obstruction, this can lead to problems. What is CSF? It’s the medical abbreviation for ‘Cerebrospinal Fluid’ which is a watery fluid that is continuously produced and absorbed and that flows in the ventricles within the brain and around the surface of the brain and spinal cord.
  • Find a gym or classes in your area that offer programs for people with disabilities.
  • Speak to your doctor before beginning an exercise regimen and if you’re going to change it or begin a new one. Your doctor will know if your condition will allow for more activity or will recommend you keep your exercise light.
  • And finally, always listen to your body, never overexert yourself and don’t over do it. If you begin to feel weak, dizzy or light headed, stop right away.

If you have Chiari – or know of someone, and are doing an exercise regimen, let me know in the comments, I’d love to know what it is.

Hope you have a great day.

-A

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Patience – ‘Three Days Three Quotes’ Nomination Day 3

The last day for ‘Three Days Three Quotes,’ thanks again to the wonderful blogger over at Reveuse.

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AND don’t forget to visit my nominees ….

To you three ladies, I’ve followed you three amazing women since day one of my blogging journey and have – and continue, to learn so much from you! I see your strength and vulnerability shine through in each one of your writings! Please know that you are loved, appreciated, that I admire you and continue to enjoy following your journeys!

HERE ARE THE RULES:

Thank the person who nominated you.

Post a quote for 3 days andexplain why it appeals to you.

Nominate bloggers each day!

MY THIRD QUOTE:

“Patience is bitter, but its fruit is sweet” Aristotle

I was so intrigued to find the proper definition for patience, that I Googled it. Patience is ‘the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.’

If you’ve followed my journey you know that I have chronic pain, not from time to time, not every other day, but daily. D-a-i-l-y. I like to say, I don’t have ‘good’ days,’ I have bad days and I have even worse days. And I’ll be transparent and allow my feelings to be shown through your screen. It’s my reality, anyone living with a chronic illness knows that we have to practice patience every single day. And I’m not talking about having patience for your spouse, children, co-workers, family, etc. no! You see, we have to be patient with ourselves, be loving to myself, my body and mind, not to get upset or angry as that can trigger other symptoms like the infamous frustration, that can ultimately make things much worse.

I am my worst enemy. I beat myself up for not being a ‘normal’ woman – because who wakes up daily with pain?! I beat myself up for not being able to stand for long periods of time – because my legs get so weak I’m a risk of falling. I beat myself up for allowing the everyday things ‘bother’ me – you see I am sensitive to noise, light, you know the sun is the worst for me, yes, how do shut off the world in order for me to feel ‘good.’ I beat myself up for not being able to meet others expectations – they’re just too high for me to meet. I beat myself up for not being able to get in the car for long periods of time – you see with Chiari Malformation + Syringomyelia I get nauseated in the car when riding for too long and require I keep medication on hand and bags in the car in case the need arises to regurgitate, Disney trips are as daunting as they are lovely for the children. I beat myself up for having anxiety – you see I can’t have last minute invites, last minute guests in my home, etc. my anxiety will go through the roof, I can’t do things on a ‘whim,’ I can’t do things like the ‘average’ woman can, like go to the grocery store without feeling pain run through my body, I can’t get last minute notices from my children’s teachers for a school event, my agoraphobia will prevent me from being present.

I need to have patience with myself, patience to love myself as I am and not want to change a thing about me, pain and all. I remind myself that I am me and there’s no one quite like me. I am beautifully made by the most high that has made me in His image. I am here to live with Chiari for reasons I am too stubborn to understand. I am doing the best that I can and I am as best of a mother as I can be. As this wonderful quote says, ‘patience is bitter, but it’s fruit is sweet.’ Yes! It’s so bitter, it’s harsh, it’s a pill too hard to swallow at times, it’s a tough reality too many times hard to accept, to face, to know! To know it’s there staring back at me …

Yet, yet! It’s fruit, it’s a message, it’s an everyday motivation to keep going, to keep walking, to stand on my weakest days, this makes patience so sweet! It’s as sweet as they come, to be taught to have patience from such a horrible illness is the sweet reminder of the strength that lies within me.

NOMINATIONS:

1. Magic In The Everyday

2. Simply Chronically Ill

3. Discovering Your Happiness

If you’ve missed any of the other two days of the quote challenge, you can read Appreciate Life Day 1 and Forgiveness + Hope Day 2.

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Hope you all enjoy doing this unique challenge and I look forward to reading the quotes you’ve chosen!

A-

Forgiveness + Hope – ‘Three Days Three Quotes’ Nomination Day 2

In continuation with the ‘Three Days Three Quotes’ I will not do ‘Nail File Fridays.’ I was nominated by the wonderful blogger over at Reveuse.

AND don’t forget to visit my nominees! They are such amazing women. I absolutely love following their blogs, they’re so interesting and inspirational!

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HERE ARE THE RULES:

Thank the person who nominated you.

Post a quote for 3 days and explain why it appeals to you.

Nominate bloggers each day!

MY SECOND QUOTE:

“Forgiveness is giving up the hope that the past could have been any different” Oprah Winfrey

I have kept this quote so dear and near to my heart – I mean how can I not?! I grew up in a single-parent home, my mother raising three kids on her own, working two to three jobs at a time, trying to make ends meet. I was the youngest of three. I was about 5 years old when I quickly realized I hated did not like the weekends with my father. I also disliked anything related to Father’s Day because at school I would be obligated to participate in making Father’s Day cards and such things. It wasn’t for any particular reason other than this meant being away from my mother – they were divorced for about 11 years, reconciled and have now been married for about 15 years. All thanks to Him. So, this quote among other things have helped me see that my father was not one, in any way a monster two, a cruel man or three, the enemy – he made mistakes because of the weakness that lies in man. We have recovered our father-daughter relationship that was once non-existent and have healed what was once broken.

Also, my Chiari Malformation + Syringomyelia Diagnosis – it’s incredibly exhausting just thinking about it! I have begun therapy which has been a great source in my journey to healing. I go back and forth thinking of the what-if’s, what if I was born different and not with Chiari – there is no such thing as having been born ‘normal,’ what if I hadn’t gotten married and maybe this wouldn’t have happened – Chiari was inevitable because I was born with it, what if I was stronger – I am as strong as I need to be, what if I could be like these other school moms without a care in the world and living pain free – looks are deceiving and I may have physical chronic pain however these other school moms I so ‘admire’ are battling other life pains.

This quote reminds me that giving up the hope that Chiari if not present in my life today things could have been different, is a lie! I am not Chiari rather I am living with Chiari. It’s given me the strength I never knew I had and that is worth not hoping my life could have been any different than what it is today.

NOMINATIONS:

1. Four Jordans

2.

3. A Disney World Adventurer

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Hope you all enjoy doing this unique challenge and I look forward to reading the quotes you’ve chosen!

A-