“Life is what happens to us while we are making other plans.” ~ John Lennon
Our time on earth is a distinctive mystery. We all use individual life strategies. Some cross their fingers. While others, like me, plan for tomorrow. But yet, I never saw this coming.
The other day I fell apart. The doctors put me back together with steroids, a breathing tube and bed rest. Intubation was required and the ICU became my new home.
My memory of that episode is stitched together by faded voices and blurred faces. The whole experience seems otherworldly. But a fly on the wall told me it really did occur.
And since that time, I’ve been scared. I wake every morning to face another graceless day filled with attempted wall walking and moments I’ll soon forget.
I spend my days recuperating in this bed. Dictating my feelings to my husband as he types my words into his iPhone. Trying to make sense of the scattered thoughts my weakened muffled voice is dribbling out.
Reading messages asking me where have I been?
In which I always answer, “I wish I knew.”
And unfortunately it seems my MS is progressing. Each medical challenge is more intense than the last. And all I have to show for it is debt and bedsores.
All day long my hospital bed swallows my frame within its thickness. Making me feel like I’m buried in a tomb. Restricting my body, thoughts and movements.
Every night I try to ignore the sounds coming from the rooms of other patients. I struggle to sleep while nurses are constantly invading my personal space. My mind aches, as I lay awake humming a goodnight lullaby. Hoping for a better tomorrow. Staring at the ceiling. Waiting for the reckless thoughts too stop attacking. Thinking about how many times I failed today at completing common everyday task. And no matter what I do, those concepts are always delivered to my head like a present from my worst enemy.
It just doesn’t seem fair. Healthiness is a helluva drug. And I’ve become use to it. So now I want more. I can’t stop myself from wanting more. I want more than thousand dollar wheelchairs, muscle relaxers and side effects worse than the original problem.
I want to feel “normal”. I mean normal all the time. Not just when my head is filled with dope. I’m on fourteen prescriptions and counting. I take medications junkies kill for. They use it to get high. But those pills don’t make me high. They help me make it through the day. It stops the sad songs from taking over my mind.
This whole MS thing just wasn’t apart of my life plan. I wish I could go back to the time when my mother told me stories of moons, cows and spoons. But I can’t. I’m here now. Facing my demon everyday.
But as long as I want more, I will never settle. So I guess I’ll start today by climbing out of this tomb and doing my physical therapy so I can leave this hospital bed behind.
I appreciated your kind way of knowledge.Great Stuff Here.I am happy to find such an informative post.hope more to come. Very informative and helpful article. it can be overwhelming. I tried to educate myself as much as possible, not just for my own knowledge, but I found the medical professionals were appreciative of my being so involved in my health.
Lots of love to you. MS is part of our lives, sometimes less but sometimes more. I understand that it is challenging you right now. I hope your will is strong to help you with your rehab. Warm thoughts from Sweden.
Nicole, were I by your side, I’d give you a big hug. I am progressing too. It is probably at the stage you were not too long ago. I keep readjusting or trying to taking deep breaths to calm myself to save myself from wasting energy I need to adjust. The new doc told me I have been progressive for some time and that she thinks I am relapsing progressive. Apparently, this isn’t common…but labels are for jars! I will label myself thank you very much! I am strong in the face of a demonic disease. I take less medicine because it was debilitating for me and causing insomnia. I had to figure it all out – my doctors are too busy to see the forest through trees.
If you like flowers, go to a greenhouse full of orchids and no chemicals smells, (Home Depot has inexpensive house plants but a huge selection of chemicals/poison for the lawns not 10 feet away (in our Natick,MA store). A greenhouse of a nursery full of geraniums (geranium scent imparts positive energy), try to use ginger in your food to lessen the inflammation naturally. I bought this pricey tea by Twinnings called Support for the immune system. It has cinnamon, white hibiscus, ginger, licorace root, cloves and lime (from zest). Add a bit of honey and I hope it helps you even a very little bit. We cannot give up just because good research can’t get funded, and many other roadblocks. I am hopeful of the research coming the the UK’s Cambridge University. I look to the UK’s MS Trust for new ideas and new research.
I also suggest going to a flower show, to the zoo, listen to music, make it a plan to listen to music every day and smile – you do that already beautifully – smiling is its own dose of neurological health – smile feedback lightens the neuro load somehow. Oliver Sacks wrote of it or perhaps a colleague – I forget. I read it in a journal eons ago and have never forgotten it. And to your husband, thank you for being by Nicole’s side through thick and thin. You both spread a healthy dose of hope to people like me and all the neighbors in the MS ‘village’.
Your resilience amazes me….every journey begins with one step. ❤️
You obviously don’t need me to say it, but keep kickin’.
Nicole, everyone at Tonic/Evoke sends our love and strength to you!
Nicole, Sending hugs and more hugs. Thank you for your honesty.
Thank you for sharing your life so that I can pray for you and your husband. I don’t know what to say but know that I care and hope you are discharged from the hospital soon but in the meantime; I wish for kind and funny nurses and a beautiful view from your room.
God Bless You ,
Hugs and kisses Nicole! Continue to focus on the love and support around you. I know it’s easier said than done and that I can’t possibly know what you go through on a daily basis. I’m am constantly in awe of your courage and coping skills and love you dearly. You have our support always!
Uncle Clifford and Auntie Pam
Keep writing for us
Oh my friend- it is not fail- absolutely NOT! I’m so sorry. You are beautiful inside and out as your beautiful smile reflects, inside and out. Sending you hugs and prayers for healing my friend.
Nicole, I am grateful you are in my life. Bless you and thanks for writing so eloquently.
I hope strength and courage will see you through to better days. Hugs from a loving stranger
Nicole, you are still as beautiful as ever, with that great smile of yours. Please maintain your positive outlook, as I always pray for you…
You have been on my mind so much lately, Ashley as well. I love you as a dear friend and pray for you always. Blessing and God speed healing.
Nicole, I have read your post a few times, and I just feel so overwhelmed for you. You have taken a very different path with MS than I have. I do not take any of the DMTs for MS. I have had MS 35 years and the first medication wasn’t developed until I had MS 10 years. By then I had been totally disappointed by neurologists and learned to question their advice. I listened to my body and learned to manage around this disease fairly effectively. I continued to work as a stock broker for 20 years, finished raising my two daughters, and learned to rest whenever I felt issues were starting. Heat was always my enemy. I could no longer do aerobic exercises without passing out, including riding the bicycle. I would become paralyzed in sunshine so I quit going out in the sun. I found myself completely dependent on air conditioning during summer months. I am describing this to demonstrate how I have had MS but I respected the limitations of the disease. Over the years, my abilities became limited, residuals of exacerbations slowly mounting up. After 20 years of MS, I crossed into SPMS. That is when I retired. The reason I am going into all this with someone who has lived the disease progression experience, is that I have gotten help. After 9 years of SPMS, I regained many lost abilities. It has been 6 years and none of the regained abilities have regressed. The following is a description of my experience:
I have had MS 35 years and crossed from RRMS to SPMS 15 years ago. I joined an MS study with Dr. Raymond Damadian, original inventor of the MRI, and Dr. Scott Rosa six years ago. After being scanned in the upright multi-positional MRI, I was non invasively aligned by Dr. Scott Rosa. He used an atlas orthogonal instrument along with image guided accuracy. I immediately felt tremendous relief in my neck and shoulders, and more importantly, got my peripheral vision back. I kept my head straight for 3 weeks, trying to make sure I held the correct cervical alignment. After this period, I could turn my head and not go into kaleidoscope vision, which was essentially blinding me at the time. I could drive again. Other abilities came back over the next year, including getting the feeling back in my fingers, recovering feeling in my abdomen (gone for at least a dozen years), could form a whistle (gone for 25 years) and I no longer get bladder infections (been over 5 years since my last one). What is so notable is that I have not regressed with any abilities regained…and it has been 6 years. Let me underline that I had been in SPMS for 9 years at the time I joined this study. Dr. Damadian and Dr. Rosa have observed that neuro degenerative diseases (MS, Parkinson’s, Alzheimer’s, ALS) seem to originate from head and or neck trauma. It can take weeks, months or years to be diagnosed. Falls, car accidents and sports injuries are common history of patients. These doctors are focused on the junction of the brain and spinal cord (C1 and C2) and have observed the blockage in the flow of CSF (cerebral spinal fluid) in the cervical spine. When it is blocked, it backs up in the ventricles in the brain, where it is produced. This creates the leakage of CSF from the ventricles in the brain, and depending on where it leaks, that is where the (MS) lesions are formed. What is unique about what these doctors are doing is that they can see the CSF movement and they can see the blockage as well as the leakage. Other imaging systems do not see the CSF (it does not image, much like air). Rather than looking for the mysterious virus or bacteria supposedly causing the body to attack itself, it is actually the CSF that is damaging the nerves. There is so much more to this story, like the increased CSF pressure in the brain due to CSF flow blockage (especially in the upright position) , the restricted blood flow in the brain due to the increased intracranial pressure as well as misalignment in the cervical spine, and the under performing micro lymphatic function in the brain due to its dependence on the CSF flow. It is no wonder that there are so many different symptoms with MS. The leakage of CSF in the brain due to the blockage causes it to stagnate, and is how the CSF becomes toxic. CSF contains many proteins, including a number of Tau proteins, and as it pools around nerves, and touches nerve cells outside the normal flow pathways, it becomes toxic and does the damage. That is why it is a bio physical event. If you stop the leakage by opening the CSF flow, you stop the progression of the disease. The medical community hasn’t seen the results of this study. My husband and his partners are working to get a couple of universities to do studies to validate the findings of these doctors. In the meantime, being aligned via atlas alignment is the most progressive treatment for patients with MS as well as other neurodegenerative diseases. Eating a non inflammatory diet is the logical approach to the inflammation (lesion forming) involved with MS. This is a more natural approach than using steroids. The good news is that it is non invasive, no surgery and no drugs. Let me also point out that these doctors are not claiming to have a cure for MS, but they have been able to help many people improve their lives. Let me ask you if you have ever had head or neck trauma? I really didn’t think I had…but when I was imaged, my atlas disc was diagonal and my C2 was rotated. I had scoliosis in my cervical spine and 4 blockage points in my CSF flow. After my treatment with Dr. Rosa my cervical spine was in perfect alignment. My CSF flow was opened, and improvements began. My friend, I have read your blog for years and have always been impressed with your writing, and I would so like to help you! I still have MS, my walking is challenged, but I have many abilities back.
Is this alignment from a chiropractor?
You have been through so very much Nicole. The last several months have taken a toll. Be kind to yourself. Recover. Just keep swimming my love. You are so very wonderful. Please do not forget that. I am so sorry that you are going through all of this.
You are beautiful ! I hate to hear of this latest episode and wish you all the very best with your recovery. Never stop sharing your eloquent and expressive prose, you offer so much to so many. Thank you.
Hugs my friend. The way you put things going on with you, your MS and your life is just heartbreaking but heartwarming at the same time into words on type is just amazing. You and your hubby are in my prayers as always.
Nicole, I am so sorry you are having to deal with this!!! You areca strong and beautiful person. It just doesn’t seem fair. I pray for my ms friends everyday, but there will be a special prayer for you you from now on!
Nicole, I don’t know you personally. But I know enough to know that you are truly a good person with a giving, open heart. I cried while I was reading this; I cried for you and for me, as I see your reality as my future. I’m still crying as I type this. This just sucks. Anyone who says this is God’s plan and that God never gives us more than we can handle never had progressive MS. I wish you peace and joy. And that is just the minimum of what you deserve from this life.
Thank you for sharing, Nicole. I am praying for good days ahead for you. God bless!
Nicole I have been reading your posts for I think years now. I feel like we are old friends that just live far apart. My heart breaks for what you are going through right now. I don’t want to give you platitudes about your positive attitude or how things will get better. But know that I am here to talk if you are bored or feel lonely. good luck in PT.
Coming back from my ocrevus infusion at the hospital in Basel, Switzerland, still being able to travel on my own, I read your post. I am so sorry for the setback. Words fail to describe what you have to go through. Sometimes things get better, I wish this will happen to you. All the best from far away Europe. Katharina
Nicole, thank you for another honest and eloquent posting about your recent bump on those twisted roads to health and recovery! I look forward to reading your future messages and applaud all your efforts. You help us all to be strong with your insight and integrity.
I’m so sorry this happened to you Nicole. I know you are strong and will do your PT and go home soon. As you do well put it, MS wasn’t in our life plan. We have to just keep trying everyday. I wish you the best my friend.
So sorry for the setback, Nicole. Again, thank you for sharing so eloquently what so many of us feel. Love you/