All of a sudden, I’m finding it hard to write about this topic. I am surprised. I guess I feel blocked. For as long as I could remember, I’ve seen myself as a person who has discipline both in my personal life and my work. Five years ago my life changed. I was diagnosed with Multiple Sclerosis. I now live with fatigue. This fatigue impacts all aspects of my life including my ability to work a “normal” work day. On a good day I can manage working a 3 to 4 hour stretch. I was self-employed before my diagnoses so I’m grateful I can work from home.
As I share my experience with you I can feel my energy drop. I guess writing about this blog piece is much harder than I expected. It brings up feelings of shame and sadness.
I used to work 10 hours days and be fine. Not that I want to live my life like that any longer, but the reality is that even if I wanted to, it is no longer an option.
I’m learning, I say learning because I’ve not yet been able to master not beat myself up or calling myself lazy because I work less and accomplish less most days than I wish I could.
It’s hard to be a motivated, goal oriented person and just not get to the finish line as fast as I used to.
It is painful for me to completely let go of my past abilities and fully accept my current life situation. Sure, if I had a pile so money, maybe I would worry about supporting myself but I think there would still be a longing to do something meaningful in my life. Something where I feel I am contributing to society. Something that I feel helps other people and brings relief, understanding, care, and resonates with others.
So, right now I’m starting redefining many “labels” that once defined who I am and how I operated in the world. One of those labels I am discipline.
These days, discipline is not only tied in with my work and personal goals, it’s tied in with what I need to do to take care of myself.
I am discipline about shaping each day so there is time to take a nap. Taking a daily nap is essential to my well-being that it is pretty much a non-negotiable.
I am discipline about allowing myself to change my course of action during the day if I am struggling to have the energy to function or feel physically uncomfortable.
I am discipline about hydrating myself by drinking ample water throughout my day.
I am discipline about working less than 5 days a week unless I have a project I am really pumped up about.
I am discipline about sitting down at my computer and getting work done even if it’s only a few hours a day.
I am somewhat discipline about doing a daily spiritual practice, yet I give myself permission to skip a day or two.
I am discipline about having down time so I can enjoy my life beyond work. If I put all my energy into my work then there would be nothing left for all the other parts of me.
I am discipline about allowing myself to say “no” to something I committed to, even if I feel I really won’t manage it. At the same time, if I am really struggling, I am discipline and determined to keep my commitment to doing speaking engagements. I will show up and do my best and then go home or to my hotel room and collapse. This is one area of my life I want to continue to say yes to even under difficult circumstances because it feeds my soul.
Today I woke up with stomach issues and a headache I know these things will pass at some point so I allow them to be there. I acknowledge them and then ease my way out of bed and ask myself, what is the first think I’m going to do today that will help me to feel good about myself and my day.
Today, it’s writing this blog post on redefining discipline.
If your life has changed and you have struggled to find your new normal, you are not alone. I imagine you are dealing with redefining what discipline looks like for you too.
There are so many of us in the world that are faced with a huge change to our life situation that has impacted us on so many levels – trying to navigate big life changes and find our way.
If you were to redefine discipline in your life, what would that look like for you?
Once I was able to get to a place in my life where I realized I could not simply wish away the MS. Wishing thinking right? For the first year or so I need think I could make it go away and then I realize that wasn’t possible.
I am not complacent about my sitation. I am proactive about making sure I rest and have learned how to pare back my schedule to fit wiht my “new” lifestyle. I am grateful I have a natural gift to plan because living with MS requires planning. It requires me to think about my day and what I can manage on that way and what I can’t. It requires flexiblity. This less comfortable for me, however I am finding my way and have really had a chance to practice this over the past three plus years.
Do I still feel grief? Absolutely. I comes and goes. Being around people who are really active and lead busy lives can be a deep reminder of the loss I feel yet I am more at ease with this and I hope it will continue to be less painful for me over time.
In the beginning everything felt so big and scary. I thought any sign of a health issue meant I was going to have a relapse. I was terrified. Now I can see that is not the case. This is why I have labelled this blog post Thickness and Thinning. As I get more comfortable with my new life and accept how it has changed I feel less sacred and less worried.
The last little speed bump of vertigo only lasted at its peak state less than a week. Although I was fearful about how it would unfold there was also a calmness because vertigo has become familiar so it is not a tragedy. It’s like a little mini storm that may last a day or my turn into a flood but knowing it can go either way means it possible it won’t set me back to far for too long. That means there is space for hopefulness in my life. I am grateful to see it through this lens.
I waited as long as I possible before getting into a new relationship once I started living with MS.
That was partly because when I was diagnosed, I freaked out about my life and wasn’t able to find the words attached to my emotional pain. So as a result, my relationship at that time ended suddenly. I wanted it to go away because I was exhausted and didn’t want a daily reminder of the gaping hole of what I thought my life could have been if I was MS free.
For this reason, I could not be in a partnership at that time because my life felt out of control, I felt out of control. I was not functioning well emotionally, physically or spiritually. I was like a tornado that came tunnelling through town but never left, destroying what was around me and destroying me in the process. The guilt and shame of this scarred me so deeply for several years as I’m sure they did the woman I was with at that time.
Now I have opened my heart again. It took two and a half years. It was a big surprise to meet this lovely, interesting and understated woman while snowshoeing up a mountain during an evening on a full moon. I went to this event with a friend with the intention of reconnecting with and building community. The magic and power of the full moon that particular evening guided me towards a meaningful conversation and connection unexpectedly.
Seven full moons later, we have continued to get to know one another, find closeness, develop a deeper connection and growing love. I am again face with a tornado that for the most part have done my best to keep at bay. It’s a different one because my life is more manageable and the relationship feels mutual, yet what I didn’t work through the last time is still omnipresent – the reminder of what my life is now. Everyday I am assessing and weighing out what I do based on my level of energy. I suppose all people who are really in tune with themselves do this, especially those who have an ability to love and nurture themselves. Yet, I haven’t arrived to that healing place at this point – can’t access a place of full acceptance of my situation. I toggle between acceptance and disappointment, discouragement and frustration. The little one inside of me sometimes tantrums and feels it’s just not fair while that adult self makes calculated decisions around energy management and seriously moves into automatic pilot, especially when the only variable is me.
I’ve had three years to find my way and it seems to work okay for the most part. I think the well of grief in me is still reconfiguring my personal GPS around navigating through the pain and being okay with what is. I see the resistance to acceptance simply brings greater pain. I have witnessed this not only in myself but in others who struggle with daily fatigue.
I am reminded I am no longer the person who is capable of filling up my schedule so full. In the past, I had no idea how to find enough alone time. I was almost bursting for it. Now, I crave it. Partly because I am aware of how restoring it is and I know it’s best to spend time in solitude when I am at risk a slight tornado eruption. The truth is, I worry that the disturbance would be too great and case too much the damage to recover from. Of course, this is a fear based on past experience. Part of me wants to walk away from this fear and allow myself to show vulnerabilities fully yet I am very attached to the safety of containment.
There is an emerging part of me who has gotten used to living with deep pain. As a result, I am more willing to walk into my fear and embrace it. Not necessarily in the moment when I am containing the eruption but after the darkness starts to shift slightly, when intensity of its energy is less, then I can stand up and be accountable and show my messiness.
I was hoping I would have been past all of this by now, by the time I opened my heart again. I was expecting that of myself. Now I can see, life is not so cut and dry. It hues are present and I remind me of what my limitations are all the time. It’s possible I will experience this for the rest of my life. It’s this realization I want and need to come to terms with and find acceptance in. Reality is reality. Right now I wake up making conscious decisions of how my day will look based on my capacity. Then I make decisions throughout my day. The planner in me maps it all out the best I can to make sure the breakdowns or the fall apart happens as rarely as possible.
Then there are the rays of sun jetting down to provide clarity and hope. Most importantly, it’s a powerful learning that has unfolded from this new love.
It’s the discovery of how important it is to check in and see where both of us are at. This is vital because through sharing found clarity in seeing we both have energy dips, emotional dips, disappointments, discouragement, frustration and resistance to coming face to face with all of these in a way that requires self care. I certainly don’t want our connection to be all about my struggles with fatigue. What I didn’t consider before was the idea of knowing and hearing about how drained and exhausted other can get frees me up from so alone, so solitary, so isolated in the world.
I am so used to the habit of rallying to do more than I can because I wish I could rather than allowing myself the right to stop. I imagine that is because I am so afraid of missing out or being left behind, instead of living from a place of what I have done is more than enough for this moment, hour, or day.
The truth is, this process and the learning I am experiencing regarding living with fatigue goes well beyond MS. It’s deeper. MS is the catalyst for facing the deepest of all my fears head on. I am grateful and lucky to have found myself in a relationship where I get to continue doing this life work while being in relationship a wonderful loving woman who is willing and open to being on this adventure with me.
Friday night I just didn’t feel right and didn’t know why. Then I woke up with early Saturday morning hoping the nausea I felt was the flu and not a MS relapse. Sounds strange right? How many people wish for the flu?
I would much rather have puked my guts out for a few days and be done with it. Then Sunday morning rolled around and I could not live in a place of denial any longer. I felt green and it had nothing to do with the food I was eating or a flu bug. Vertigo was hanging out in my body.
As unpredictable as MS can be, it makes unexpected visits with no real explanation. I decided at the moment of realization, I would try a different approach. I would love and embrace the vertigo. So I have put down the welcome mat. Although I would like to set some guidelines for this visitor, I know she will stay as long as she wants to and leave when she is ready. I have no idea how much of a roller coaster ride she will take me on. I will have to take that hour by hour and day by day as she will have her dormant times even if they are only for a few minutes, they will be there. I have already witnessed them within the past two and half days.
The part of this which seems to get easier is the familiarity I have with this new visitor. Her siblings have visited one by one. Each is unique yet, like raising children, it’s often most challenging with the first one, after that it less of shock and gets easier because the newness is less.
I trust eventually based on the past sibling visitors that this one will leave. I have a track record to prove it.
I also recognized, the more welcoming and less hostile I am, the easier it will be for both of us. Maybe I will even find some beauty in her appearance unexpectedly.
A grief wave is nothing like the wave of the ocean for me.
I remember reading in a book in the past year or two since I was diagnosed with MS that there will be waves of grief. This was one of the most helpful pieces of information I have read in a very long time. I think if I hadn’t read this about the waves, I would simply equate that thinking I was going in and out of states of insanity.
It took me 1.5 years to figure out how deeply I was grieving the concept and symptoms of MS when I was told in September 2010. When I experience the most challenging relapse since my diagnosis at the end of May 2012, that’s when I realized how grateful I was for reading that small passage on grief. Because, it was at that time, I witnesses how having a revisiting health crisis spike could great a crashing, side wiping wave of grief. The grief seemed to soften over time as the recovery started to take place. Then once the recovery seemed close to 100% – the grief turned from loss, depression, anger and sorrow to gratitude, joy and euphoria.
What I didn’t realize at the time and was either yet to encounter or simply not in a conscious state that it had already taken place in the place was the ideal that I would experience a wave of grief without having a relapse or health issue.
A grief wave could creep up on my unexpectedly in ways I never expected. I the act of kindness a woman I know shared with me a medication that helped her client MS symptoms dissipate. This information was shared with me. The platform from which I stand on and hold myself together on a daily basis – this hopefulness that is usually is in so alive in me, all of a sudden had this extra layer. I was cautious about this new information. I’m not sure why, I suppose because taking this mediation was only a possibility, and on top of that, there was no guarantee that I would benefit from it they way this other woman did.
When I asked my neurologist to support me by prescribing this drug, she said this medication would be better suited to my regular doctor’s knowledge. She was encouraging so I remained hopeful. Then I went to my general doctor. She was angry my neurologist “put this onto her” as responsiblity to have to say “no” to me.
Truth is, I hear was “no”. Within a second of the know, I didn’t realize it at the time, the wave of grief came along and smashed my spirit. I went from feeling this great sense of hope to feeling deeply hopeless. I tried to stand up against the wave, yet I just haven’t been able to find my ground. I can still breath and so it’s an odd feeling. I can still walk and talk and laugh and smile yet I don’t feel the same. I am having a very hard time finding my way back to the emotional stability I so diligently found for the most part.
I feel unravelled further by things that normally would not put me off. This to me is a friendly reminder the grief wave is present. What’s funny is one day it feels like the wave is dormant and I feel a sense of relief, yet the wave is like a looming shadow that waits for an opening and then it smashes in again.
This is the part I am trying to understand. How can I allow my self to be vulnerable right now when I know the wave is going to pounce as soon as this opening is ever so slightly present? In some ways it feels like more than I can manage yet I know I have been faced with unbearable grief so great I felt I was dying so in the context of this reality, I know in my heart – this grief is just a wave washing over me. Like the aliveness of the ocean, it may be alive in me for another day, a week, a month, a year yet at some point it will pass for a minute, an hour, a day, a week, a month or a year. There is comfortable knowing that at the very moment I am writing this blog post, there are others just like me who are experience a wave of grief too. For whatever reason their wave has arrived, we are one.
Tomorrow is a new day and so I will leave it at that – I will find out tomorrow if it is a waveless day or a day fill with a series of waves as it was today.
Despite low energy today, I feel compelled to get back to writing this blog again. I’m too tired to head out side into the sun right now so I will bask in it from the inside.
A topic that has been on my mind since I showed up at my the first MS support group meeting I attend was regarding self-esteem. I noticed that I number of woman in the support group really struggled in this area. I can see how one’s self-confidence could feel knocked down or blindsided due to dealing with significant losses as part of living with MS.
It seems that those who are not able to work at a full or part-time job any longer are the ones who suffer from a lack of confidence and low self-esteem the most. I would imagine that if my life shifted to not be able to work part-time as I do now, I would be greatly impacted by that decision.
I believe having a life person is critical to ones happiness and joy whether it is a purpose associated with making a living or not. There is a woman in the support group who does not work, yet is actively involved as a volunteer for several organizations as well as she is a writer and artist. Although her and her spouse face stress around money, she is alive with passion in her live on many levels.
I know for myself. I have lived with issues around self-confidence all my life so being diagnosed and living with MS may have touched these feelings on a deeper level when I experience a relapse.
I don’t think generally dealing with MS in the present, now that I have come to a place of greater acceptance, impacts my self-confidence and self-esteem. Other emotions or sensitivities do like fear and grief. Both of these emotions in themselves can be very paralyzing.
I can see how living with fatigue would impact others lives to have energy to fulfill their passions. Fatigue has played a role in what I have the time and every to do and the level of passion I am able to bring forth.
What I am grateful for is my will to remains strong most of the time. When it doesn’t, I know it is time to surrender to what is. Although this can really suck at times, it has also be restorative for me.
As humans, whether we are challenged with the critical illness or not, our levels self-esteem and self-confidence will be impacted by past triggers and present circumstances. This is how we as humans can all find common ground no matter what our path is.
Do you know how many times I nave wanted to write a new posting over the four months?
Actually, part of me has and part of me hasn’t. It’s taking a long time to heal from the last relapse which lasted three months. On the heals of my body started to bounce back, I have acquired a sinus cold that at times makes my head feel like a rocket ship. The sinus thing is hanging on for its dear life as my acupuncturist diligently needles me every week hoping there will be progress. I feel hopeful until my head blasts off again.
Have you noticed how every physical discomfort when there is MS in the body feels way more intense? Too bad it wasn’t that way for in the physical pleasure department:).
The power of relapse #3 since I was diagnosed in two years ago is how it impacts my decisions about how I do my life. This part of things isn’t so bad, in fact it’s good. Why is that? Well, because I am more in reality with my life now. I am more true to myself now than ever – for better or for worse.
I’ve really had to look at what is important to me. It has nudged me to ask for help more often even if it goes against my independent, I can do it myself nature – aka fear of rejection.
My life situation has helped me to appreciate what I do have in my life more and do my best to let go of what is not working for me like paying more than half of what I make post taxes towards my rent, live alone and feeling isolated when I feel crappy and when I feel at my best.
It’s confirmed that crying is freedom and part of the essential nutrients of life. This includes tears of joy as well as tears of sadness. That Friday night at home alone start of lonely but then I usually get over it and get on with my night. By the time I go to bed, I feel like I have done something to nurture my spirit. Right now I am enjoying a bowl of homemade soup which I started making at 5:00 pm after coming home exhausted with a bunch of groceries. As part of that event, I watched a movie and listened to a CD I haven’t cracked open in years – The Smashing Pumpkins – Adore.
So what are my big decisions? Well, I am moving into a great house with a woman who I get along famously with. The townhouse is surrounded by nature which feeds my soul. I will have a roommate to share daily events with when we are both around. I am created an online course so I can work from home – I even have a few students already signed up for it.
Because I am presently single (by choice), I go to bed when I want, I nap or rest when I need to and listen to music I want to. Some of this may change a little when I move into my new living space. I will be on new terrain. It will take time for me to find my way. You know what, I am looking forward to that too.
Hopefully everyone who reads this post has a big dream or two they wish for and are working towards. For me, it’s the dream of living episode free. It’s possible. I know of others who do. It didn’t happen right away. It was a long road, yet somehow through letting go of resisting their life circumstances finding a way to make favourable choices that their heart, body and soul responded to, they have been able to stabilize their body and calm their system so it could restore itself.
This meant things like not working, resting, changing their diet, exploring alternative healing options and loving themselves more fully.
I would equate it to a restoration or the likes of a self rebirth. Life as it is never stays the same yet when something drastic happens its impact can be great. Scary. Life changing in unexpected ways.
I have to admit, the unexpected has rarely be my friend of past. With the coming of MS there is lots of unexpected experiences. Disappointments and discouragement. Out the outside the world shrinks as the abilities shrink. What I have discovered is if you let it, the world expands. It times time, it’s not an overnight journey or a long weekend get away. From my experience the grief had to get to a place where I felt literally crazy first before my world could own. All I could see is how narrow it was becoming. I was scared shitless.
I still enter back into the dark narrowing world – I think that is normal – yet I am learning how to access the expanding inner world. This is the part that I would like to celebrate with you.
I didn’t realize how intense my grieving process was until I started to move through it. I knew the grief was there but until it major started to shift, I wasn’t aware of how crazy I really felt inside.
In the beginning and for some time, I though I was going to die. After talking my ex-partner and recently making amends around how I dealt with our break up, I became clear that there were times where a felt crazy. I apologized to her for being a crazy monster at during our 10 month break up. I didn’t remember some of the things I had said in my process to push her away. We were both in a state of trauma and so it is understandable that we both felt very triggered not only by my diagnosis of MS, the fear of the future and my health, but also by the fact that nothing was making any sense to either of us. It’s like we were treading water indefinitely.
It’s been less than two months since I noticed the shift in my grief. I have to admit I still feel sad about not having my ex-partner in my life. Maybe some day that will change or if it doesn’t then maybe someday the sadness will lift and it’s importance that I hold presently will shift to simple acceptance.
I realize that my life will go on no matter what. It may change form, I may be able to do more or do less. I don’t really know. What I know right now is I feel more optimism than I have in a long time. Yes, I’m still scared. Scared about being able to support myself, scared I won’t live the dreams I had before I was diagnosed, and scared about the unpredictablility of having MS in my body.
Yet I know that I am loved and people – both friend and family would help me if I was in need. I will always have a home even if it’s not what I imagined. There is comfort wedge between each fear. Truth is, I do my best not to think about the fears or when I do, I try my best to acknowledge them and then move on.
Do you ever wish you were the one?
Well I guess it depends on what context this question is being asked to you. If you were the one to have to flee your house because it’s on fire or if you got fired from a job knowing you had no money that would really suck.
I think Spence Diamond’s knows how to sell jewelery. Their radio commercials and bus shelter ads speak to women who want to feel they are “the one” and encourages their partner to take the big leap for fear of losing “the one” if they don’t present the woman they love with an engagement ring:)
Often people will say “I have a cold” or “I have the flu.” What they are saying is that in that moment they are experiencing a cold or a flu. They are not saying it is part of their identity because they know it is temporary.
If I say ” I have dirty dishes,” I am basically telling people I need to wash my dishes. Yet when I hear people say “I have MS” or “I have Cancer,” it somehow, at least from my perspective places ownership on the dis-ease, like my identity is “I am diseased”. So “having it” becomes who they are. I imagine for many this story works and they feel validated by expressing it this way.
I on the other hand, I feel differently. Although I catch myself occasionally thinking or saying this to myself for others, I consciously making the choice to not express my experience of MS in this way. I believe it creates and keeps a story alive in me that I am ill and broken. I already have enough old baggage around these types of messages that I do not need to add MS to the pile of brokeness or as an excuse to not live my life fully.
In the early stages of my diagnosis, the first six months to be exact, I was in denial. I just wanted whatever was in my body causing new and big problems like severe fatigue to leave immediately. I was told my a healer at that time that this was possible. I wanted so bad to believe this to be true. If I just followed her advice, I would be healed. I was so vulnerable and raw – she was going be my saviour. I thought a saviour will take away all my pain and suffering so I can be whole again.
Yet the biggest gift in that journey was that when the healer defected from my life, I then had to deal with my truth. At that time, my truth was that MS had entered by bodyand was impacting my life in a big way. I could no longer deny this fact. By wishing it away, it was actually bringing me more suffering and prolonging all the suffering I already felt.
When I finally got my butt to counselling to deal with my grief around the diagnoses, it was my therapist who helped me to see how I could acknowledge the MS when I felt its presence in my body, yet not take ownership of it like it was “ME” and I was “IT” – rather to see it come and go like a visitor who comes over for tea or an overnight visit and then says goodbye. Okay, at this point I can’t see the visit as tea buddy yet. Although I feel the MS is with me more than not, it is not always with me. There are times when I don’t notice it or feel its absence so in this way, the MS is a visitor.
By making the statement “I have MS” would mean it never leaves, it is always there. Then it becomes part of me and who I am. I want to be bigger than the MS so it doesn’t because ME.
The MS society does great work but one thing I don’t care for is their campaign to “fight” MS. This is the opposite of acceptance and allowing what is. This message is a message of resistance or fighting against what is. In my opinion taking that view is detrimental to my health and well-being. The last thing I feel like doing is fighting. First of all it takes way too much energy and I’m more of a make love not war person than a fighter.
Secondly, waiting for a cure is a load of crap. The pharmaceutical industry makes way to much money of the injectable drugs to find a cure. It cost the average person $20,000 a year for the drugs supposedly “suppress” MS.
I am not waiting for a cure. I am living my life now. I am not fighting or resisting. I am living my life now. Some days I feel like crap and I am living my life with these limitations knowing the next day could be different but right now there are things I can do and things I feel better not doing.
When the MS visits me I am learning how to embrace it and say “hello”. I am doing best to learn to love me as I am whether I have a visit or not. I am learning to allow myself to be how I am without feeling sorry for myself. Or if I do feel sorry for myself, I give myself permission to feel sorry for myself knowing it won’t last forever it never does. In five minutes, I ‘m going to thinking about how hungry I feel and what I am going to eat for dinner.
It really come down to the choices we make about how we choose to label ourselves without being in denial where we are at right in this moment in time.
How do you label yourself these days?
memsandmylife 