Try, Try, Try. Period.

“If you can’t fly, run. If you can’t run, walk. If you can’t walk, crawl. But, by all means keep moving.” ~Martin Luther King Jr

Image Source: http://projectlifemastery.com/

Sometimes it takes digging deep – really deep – to keep getting back up and trying. Has anyone else noticed that?

I have been going through an exacerbation of my MS symptoms, with old symptoms returning with a vengeance. To complicate matters, my peri-menopausal flare-ups are adding new symptoms that I am trying to wrap my head around, as well. Combine the two – and well, we have a pretty fatigued and worn-out Carolyne on hand.

Last week was a particularly busy week at work, and I had to be on-site at the main office for most of the week. My MS symptoms were flaring pretty badly before the week had even started, with MS Hug episodes taking my sparkle down to a dull “splat”. Then, the 2nd day into the busy week I was hit by what I am now calling the dreaded peri-menopausal period. My fatigue and pain got so bad that one of the days I actually left the room full of people I needed to be with, headed to my office, shut the door, and lay there doing the yoga “legs up the wall” pose for 20 minutes…just breathing and trying to meditate to reduce the pain and fatigue and brain fog. (I think someone may have come into my office during that time…but left when they saw how busy I was!)

My synchro swimming was also affected in that my coach could tell right away that something was not right. She could see my fatigue and my balance was way, WAY off.

SO…this peri-menopausal period stuff seems to be becoming quite the deal-breaker for me lately. Cramps worse than when I was a teen. Fatigue like a sledge hammer. Brain fog galor.  Is this normal for someone with MS, or for anyone?? I really don’t know. Doctors don’t like to say anything for sure, though some websites do mention that hormonal changes can affect MS symtoms. I am here to say that when my period comes these days, it is like I have been hit with the Fatigue Hammer of the Gods! Holy crap! I can’t think straight; my pain levels skyrocket; and my fatigue takes me down to the ground. So…seeing as I am my own science experiment…I would say that my observations are telling me that my peri-menopausal menses and symptoms are prone to exacerbating my MS symptoms greatly. And I don’t like it!!!

But – no matter what, crushing pain or no, I have a family to take care of…so I gotta push through the pain, fatigue and brain fog and just keep tryin’. When I came across the song and video by Pink, it resonated with me…and to me, it inspires the will we need to keep trying.

“But just because it burns
Doesn’t mean you’re gonna die
You’ve gotta get up and try try try
Gotta get up and try try try”
~Pink

So that’s what’s been going on with me. I am getting up. I am trying. Period.

So what’s going on with you?

Namaste.

Carolyne

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Seeing the Light at the End of the Tunnel: Builiding your Resilience

“Continuous effort—not strength or intelligence—is the key to unlocking our potential.” ~Winston Churchill

(Photo Credit: http://www.babaloud.com)

Sometimes it can be tough to see the light at the end of the tunnel. That’s where personal resilience comes in. Resilience can help you know that even if you can’t see the light right now, you are confident that you will at some point.

If you google resilience, a Wiki definition comes up for resilience as:

Resilience in psychology refers to the idea of an individual’s tendency to cope with stress and adversity. This coping may result in the individual “bouncing back” to a previous state of normal functioning, or using the experience of exposure to adversity to produce a “steeling effect” and function better than expected (much like an inoculation gives one the capacity to cope well with future exposure to disease).^[1] Resilience is most commonly understood as a process, and not a trait of an individual.^[2]

Resilience is different for every person. When dealing with a chronic illness, resilience can mean the difference between life and death sometimes, or so it would seem when you feel like you have hit rock bottom. Resilience is what helps you find the strength to get back up one more time, try again once more, reach for the rope that you know is somewhere just out of sight.

Sometimes, people surprise me by saying to me: “How do you cope with it all? Shouldn’t you be a basket case by now? Why do you keep pushing forward? How do you do it?”

Honestly – I could not tell you the details of how I bounce back all the time, for the most part. Statistics often can say that a person who has dealt with multiple childhood traumas and multiple health issues should be having a really tough times surviving and living a good life. I just know that I do bounce back – to me there is no other logical choice but to keep trying, no matter what life throws at me. When you are down, rest, but look for the silver lining somewhere – no matter how small. Baby steps at times; sometimes, big leaps of faith.

My youngest son noticed this “bounce back” ability and surprised me one day by saying “Mom, no matter what happens, you are always happy and positive. Most people aren’t happy – but you always are. You are a very positive person. That’s interesting.” He noted it because he found it interesting that he does not think the same way as me, but that his older brother does more so, in terms of positivity and jumping in with both feet. (Both of my sons are absolutely brilliant, but my youngest is particularly deep, and often sees things in life in a very unique and clear way. He fascinates me!)

So how does one build resilience, if it is not instictive? Here are some tips…(reference source: Mayo Clinic)

• Get connected. Building strong, positive relationships and support networks. Do volunteer work, get involved in your community, or join a spiritual community.
• Make every day meaningful. Do something that gives you a sense of accomplishment and purpose every day. Set goals to help you look toward the future with meaning.
• Learn from past experience. Think back on how you’ve coped with hardships in the past. Consider the skills and strategies that helped you through rough times.
• Stay hopeful. You can’t change what’s happened in the past, but you can always look toward the future. Accepting and even anticipating change makes it easier to adapt and view new challenges with less anxiety.
• Take care of yourself. Exercise daily. Get plenty of sleep. Eat a healthy diet. Practice stress management and relaxation techniques, such as yoga, meditation, deep breathing or prayer.
• Take personal control – Be proactive!  Don’t ignore your problems or try to wish them away. Instead, figure out what needs to be done, make a plan and take action. Although it can take time to recover from a major setback, traumatic event or loss, know that your situation can improve if you actively work at it. This is one of the biggest keys to building your resilience, because perceived control is critical.

Once of the biggest helps to build your resilience is your perception of control in your own life. That’s where changing your perception to be proactive, and take control of the things you can, can make all the difference in the world. There are many things in life that are totally out of control – but take control where ever you can to help improve your situation in some small way. Many small steps eventually get you down the road, too.

“Act as if what you do makes a difference. It does.” -William James

namaste y’all!

Carolyne

Related Posts: “The Value of taking Time for Laughter and Rest”

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Balance in all Things – even your Passions!

“To think in terms of either pessimism or optimism oversimplifies the truth. The problem is to see reality as it is.”
― Thich Nhat Hanh

Balance. It’s all about finding the right balance even in the weirdest circumstances.

I have recently been giving a lot of thought to what exactly defines my personal balance, especially in appreciating the hilarity of my “new” medical status: fascinating, complicated, and unusual and confounding.

I saw my new seizure specialist, who works with my MS specialist, and they ran my case file in front of their monthly hospital specialists case presentation (House team equivalents). They are all stumped by my medical situation – I likely do have MS, but on the other hand my “brain mass” is deeply embedded in my left temporal lobe and hasn’t changed so it may be mild or benign MS. My spinal tap shows MS signatures – but even that test is not a specific test to “prove” MS. The brain mass may or may not have been in there all my life, but it’s too dangerous to biopsy so we’ll likely never know. Even with all the tests I’ve had, apparently it could have been “missed” by earlier technology. My seizures have epilepsy signatures and the placement of my “brain mass” in my temporal lobe is often a typical cause of seizures, but I also have signatures of something called non-elliptical attack seizures disorder (NEAD – which medical science does not understand at all right now). I endured severe childhood abuse, which is a factor lending to NEAD. They want to keep monitoring me until they can figure out what my diagnosis “should” be. Is it MS? MS and Seizure? MS, seizure and something else? All or none of the above?

My doc’s recommendation: stay the current path of MS & seizure disorder balance. In other words – keep doing what I am doing with teleworking etc; avoid stress as much as humanly possible; keep doing yoga; stay on the seizure meds – and keep an open mind! Because I have no warning he said I will likely never be able to drive again (unless they can actually diagnose me or discover an actual trigger). He also recommended I do not take baths (showers only) and that I do not handle power tools (WTF??).

That is the part that made me laugh until tears poured down my cheeks – My son already says “Mom, step away from the drill”. Now he has a doctor’s recommendation: his mom is not allowed to use power tools! (Hmmm…that could be a really good thing… do “power tools” include a stove for cooking dinner?

There is always humour to be found – even in the seemingly darkest parts!

One of my seizure triggers may be a delayed reaction to overwhelming stress – overload of either positive or negative stressors. So for me – I really need to stay aware of my personal balance. The people who know me, generally see me as a very positive person who takes on life with enthusiastic passion. Sometimes, in my enthusiasm and passion, I take on too much. I push myself to accomplish more, keep commitments that I made despite my personal energy levels: do, Do, DO. Even if the endeavors are completely personal and fully enjoyable – it can lead to a seizure if I do not monitor my fatigue levels.

Balance. It’s all about finding the right balance even in the weirdest circumstances.

“Life is a process of becoming. A combination of states we have to go through. Where people fail is that they wish to elect a state and remain in it. This is a kind of death.” -Anais Nin

Namaste

Carolyne

It’s all about Communication

“More important than the quest for certainty is the quest for clarity.” -Francois Gautier

Communication (noun): Intercourse by words, letters, or messages; interchange of thoughts or opinions, by conference or other means; conference; correspondence.

Communication. Such an amazingly simple concept, yet an amazingly difficult thing to achieve. We are a world surrounded by so many means of communicating…but is anything being heard?

I was recently reminded of how fragile communication can be. Communication fragility comes in many forms, such as when an e-mail is misinterpreted, leading to a hurtful misunderstanding between old friends; or when a text message is sent incompletely, leaving a confused recipient wondering what that was all about; or when there is no information at all shared, and communication is stopped, leaving a void to be filled with false assumptions, hurt, and resentment.

Sometimes, the misunderstanding can start from the perception of a simple phrase or word. Take the phrase “Good for you”, for example. To me, that phrase indicates support, well-wishing, and positivity. I recently ran across someone for whom that phrase meant insult, criticism, and implied a condescending intent. Whoa! How can two people see three little words so very differently? The answer, my dear: Personal perception…

Personally, communication is a big passion of mine – good, clear, open, honest communication. Unfortunately, sometimes my own MS cognitive impacts kick in, and communication can become quite an interesting endeavor! Words become difficult for me to find, and sometimes I substitute other words in my search – not always with the intended results! Luckily, when I am speaking to someone face-face, I can throw my hands around while I search for missing words, and the people who know me can fill in the gaps when I can’t find the word. I have learned that humour makes these cognitive lapses much easier to handle – for everyone! (Especially if I am in the middle of a situation where I really need all my faculties, including my ability to clearly communicate, such as on stage or in a board meeting!) Unfortunately, this does not translate as well in written forms of communication, such as e-mail. I have noticed that incomplete sentences and the wrong choice of words can lead to un-intended misunderstanding and confusion, rather than understanding and clarity. Oops. My bad!

“Be gentle first with yourself if you wish to be gentle with others.” -Lama Yeshe

When managing a chronic illness, such as MS & seizures or anything else…communication becomes critical, in that the medical team needs a full, clear picture of what’s happening in my life to be able to treat me in the best way possible. I personally have no problems being open and transparent in life, mainly because I grew up with so many hidden secrets in my family that I abhor any form of “skeletons in the closet” mentality. Not everyone is like that, I know. But I have found, especially with the medical teams over the years, that you have to be willing to mention the “unmentionable” sometimes, or they don’t have the big picture and cannot accurately treat you. For example – if you suffer from pain on a daily basis, but out of pride won’t admit to any pain or minimize how deeply the pain is affecting you, for fear of some kind of perceived judgement, your doctor cannot know how to accurately help you. Or if you suffer from depression, but neglect to mention to the psychologist that you are going through job-loss or marital break-up, well the doctor can’t make a correct assessment and advise you properly. Or, if you are experiencing sexual difficulties, but never bring it up – well, you can end up with more than just sexual difficulties! I still remember the first time I brought up sexual symptoms of MS to my neurologist, and was faced with a very uncomfortable doc and no clarification. Later however, an MS & Sexuality seminar was created by that doctor’s clinic! What does that mean? It means that enough people asked the tough questions so that the need for information was clearly communicated, and the need was filled by clearly communicating to patients via the seminar.

When it comes to sharing and communicating with family and friends, that is a critical part of managing any chronic illness – they are your primary support system. I am not talking about a daily whining session, complaining all the time about what’s not working. Nor am I talking about taking out frustrations by unproductive rumination over perceived losses. I am talking about sharing personal truth, in as positive a way as possible – openly, honestly, non-judgementally, including the good, the bad, and the ugly, in an effort to maintain clarity and authentic understanding. I am talking about clearly communicating any necessary information to enable them to help you, and vice versa.  I am talking about being vulnerable, and listening to not only your own words, but the words of those you love.

And when you do have instances when your communication skills were not as polished as you would normally like – that’s ok. You are only human, after all! Learn from the experience, remedy or change what you can when possible, and move on.

“To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others. ~ Tony Robbins”

Namaste

Carolyne

The Trials and Tribulations of Getting Diagnosed!

“Worry never robs tomorrow of it’s sorrow. It only saps today of it’s joy.” -Leo Buscaglia

Navigating the medical system while getting diagnosed with anything can be an interesting journey into the trials and tribulations of worry, anxiety, fear, confusion, and uncertainty. Even when you get a diagnosis, you sometimes get un-diagnosed then re-diagnosed when you see new specialists! For some wild examples, see my previous blogs about being undiagnosed by a different neurologist then re-diagnosed…then again this year…my MS diagnosis was questioned by a new specialist, and re-confirmed by my regular neurologist.

You see…I have MS – no, now it’s a brain tumour. No, wait – Now it’s MS. No, wait – now it’s possibly MS and more, maybe still a brain tumour, maybe a genetic tumour disorder. No, wait – Now it’s MS and a seizure disorder…but it’s complicated.

Frankly, I feel blessed that I have a scientific side to me that allows me to question doctors and medical specialists with no fear, no apprehension, and all the confidence of a know-it-all science geek. Geeks rock, eh! A lot of that confidence I have learned through some pretty hard knocks over time, and some very real frustrations, but that is part of this journey we call life.

Recently, I had the dubious pleasure of undergoing a sleep study to determine if I am having nocturnal seizures. Quite the experience to be hooked up to electrodes and straps and clips, then “tucked” into bed as you are plugged into the wall. Then a quick “nighty-night” and the door is closed, leaving you staring in the dark at a little red light – the camera that is watching you. (I swear, if anything weird turns up on You Tube…)

Will that help further my diagnosis? Well…maybe. Maybe not. Right now, my epilepsy neurologists think I might not have MS due to my atypical brain scan, but that I do have a seizure disorder and maybe something else that looks like MS. Meanwhile, my MS neurologists say “P-ffft” to that…that I do indeed have MS as confirmed by the spinal tap results, symptoms, and brain scan. (A possibly quick way to let the docs settle the academic question of MS or not MS would be to let them biopsy my lesion…but, I think a needle in the brain is a bit of overkill for academic reasons, don’t you?)

I don’t care whatcha call it – just let me get on with my life, eh? I’m busy living here!

You see – that is often the hardest part of waiting for a diagnosis: getting on with your life. I have learned over the years to just let the medical teams battle it out on their own while I get on with the business of living my life. Whether you are awaiting a diagnosis for something small or big – the wait can be very difficult.

How to get through the long Diagnosis:

1. Know that no one is better qualified to know about you than you.

2. Gather your own information. Read. Surf the ‘Net. Knowledge gives us a sense of personal control – if nothing else that helps you manage your reactions.

3. Practice patience. There will be set backs, successes, frustrations, little glimmers of light at the end of the tunnel.

Yes – doctors know alot of stuff. But doctors are only human – and they are just as prone to human foibles as the rest of us, including making mistakes or incorrect assumptions.  Nobody knows you better than you do. Keep that always at the top of your mind. Be willing to ask the uncomfortable questions, both of your medical team and yourself. The answers may surprise you.

“If you worry about what might be, and wonder what might have been, you will ignore what is.” ~Unknown

Namaste

Carolyne