Tag Archives: Symptoms

MS Whammy: The Raw Emotional Impact

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God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. ~ Reinhold Niebuhr

Well, I have been “off-line” for a few weeks, you may have noticed. Why? A bunch of things…but suffice it to say the bottom line was because of an MS back-handed WHAMMY!

In recent weeks I have been trying somewhat unsuccessfully to juggle my health management needs, family needs, and work-related needs. As is my wont, I pushed myself much to hard to meet a deadline at work for a high-profile opportunity (which was successful, by the way). At the same time I was dealing with a teenager’s confused and volatile life-searching angst which had direct repercussions on how I manage my household, and dealing with a new “complication” related to my MS. All this combined to bring me down to a state of total disengagement and “cocooning”. I was bone tired. I was at a level of raw emotional pain that literally had me keening in the fetal position in my shower almost daily. Basically – I needed to check out for a bit – from work, from tech, from everything…and simply rest. Rest, rest, rest.

Have I ever mentioned that it is hard for me to “slow down” and actually rest, despite a chronic illness that requires it?

With all the stuff going on, my self-identity took a direct hit, leaving me wondering what my life would be like without MS & seizures. Would major decisions have been different had I never had that seizure that forced my car accident all those years ago? Would my family have been better cared for if I had died in the accident? Did I do enough for them despite my MS? What is my life purpose? Why can’t I stop crying? Who am I? I felt angry as hell at my health situation – angry that maybe it was a main reason behind the teenage angst I was seeing.

What was all this? Grief.

You see, grief that is associated with living with a chronic illness can back-hand you at the most surprising times, and in any of its various stages. The past month I was feeling deep grief and anger and depression – triggered by a decision made by a family member. That in turn made me more ill with a flare of MS symptoms and more despondent, especially since I was already at a low ebb due to giving everything I had to teaching a professional workshop.

I am crawling out from under my rock now. But these past few weeks have served as a strong reminder to me that the grief of living with a chronic illness such as MS sometimes lies much closer to the surface than I am willing to admit.

But it also shows me that there is always a light shining somewhere when that rock is moved away.

“Life is a song – sing it. Life is a game – play it. Life is a challenge – meet it. Life is a dream – realize it. Life is a sacrifice – offer it. Life is love – enjoy it.” ~ Sai Baba

Be gentle with yourself. Namaste.

Carolyne

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Chronic Illness and Mental Health: Ghosts We Fear to Discuss

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The moment in which the mind acknowledges ‘This isn’t what I wanted, but it’s what I got’ is the point at which suffering disappears. ~ Sylvia Boorstein, Happiness is an Inside Job

Did you know that today, February 12th, is mental Health Awareness day? It’s a day for talking about what most of society wouldn’t talk about in the past. The stigma is HUGE.

Well, by now most of you know how I feel about stigma!

Depression is one of the “side effects” of a chronic illness, like MS… a struggle with maintaining good mental health. Personally, I call my own struggle as a struggle with the Ghosts of Lifetime Past. Let me explain…

What I have noticed over time for myself is that as my MS has progressed, so has my own awareness and understanding of myself – but in ways I never could have seen coming. For example, PTSD (Post Traumatic Stress Disorder) is a fact of life for me now…for various reasons and at various levels of complexity. When my symptoms of fatigue and pain pull me down, I tend to feel like a burden to family and friends. (Rationality has nothing to do with it!) I then can tend to feel depressed and even more emotionally exhausted…and I want nothing more than to “escape” from this burdensome-ness by disappearing somewhere, anywhere. I understand now that this comes from past emotional trauma from a very young age in which I was the oldest child of an alcoholic parent who would insist that our entire family would end up living on the streets without a home nor food and in rags if I, as oldest child, did not “shape up, do more to take care of the house, and be more responsible for my siblings“. I was 8 years old when that particular burden began being laid on me regularly. (This typical “burdening of the oldest child” usually came after my parents fought over my father’s alcoholism and my mother was ready to kick him to the curb.) So for me – I can begin a cycle of feeling very depressed when my symptoms flare up and create change or havoc in my life. I feel like I am failing at keeping the family together, happy, fed, successful. These are literally ghosts of my past – being exacerbated by symptoms of illness in my present.

But – Why do I understand it now? Because I talk about it. Because I look into myself. Because I seek self-awareness everyday.

The thing is – everyone has old ghosts. And chronic illness can raise these ghosts in the strangest ways and at the strangest times. It can create new ghosts. The changes brought into our lives by chronic illness can also make us go into hiding as we avoid talking about painful emotions, fears…depression.

If you are feeling depressed – talk about it. Now. Tomorrow. With a friend, relative, professional…with whomever you feel most safe. Just talk about it.

Namaste

Carolyne

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Try, Try, Try. Period.

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“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

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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When Ego interferes with Maintaining Balance in Chronic Health Management

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“The value of identity of course is that so often with it comes purpose.”  ~Richard Grant

Sometimes, I have an ego problem. My ego sometimes fools me into thinking I “am” my job. It fools me into thinking that all the responsibility rests on my shoulders and that it would be selfish or irresponsible of me to say “no” to anything. It fools me into thinking that I am handling everything just fine, when in reality, maybe – just maybe – I am not handling things as fine as I thought. Maybe – just maybe – I am pushing myself too hard to please everyone, trying to maintain some standard level of effort, with a perceived or imposed criteria. Maybe – just maybe – I am not seeing the forest for the tress, and not recognizing that I need to let go of a few things at some point in order to re-establish a healthy personal balance.

For me, part of this issue stems from my training as a meteorologist. We are trained to intake significant amounts of data, make sense of it, and issue a report (i.e. forecasts and warnings) about that information within a certain time frame at set deadlines. Because of my health situation, I no longer work the operational desk, and have moved into management positions…but my training still applies. I still give it my all to make deadlines. My ego as a scientific professional will allow me to do no less than my very best. Therein lies the very problem with my ego.

You see, my ego doesn’t always align with my ability to maintain the balance in managing my chronic health. When there are urgent deadlines at work, and requests coming my way for “just one more thing”, my ego always rears its head and has me hopping to the task…even though my body is simultaneously giving me strong signals to slow down soon, or it will take me down. Part of this also stems from a form of “survivor’s guilt“, in that my directors accommodate my health so willingly, that I can often feel awkward/guilty/wrong not pushing myself to the limit when we have important deadlines – even though I know it is dangerous to my health. WTF?!?!?! Why do I do this??

One of the signs for me that I am reaching the critical breaking point is when I find myself so exhausted that life becomes a blur of falling out of bed in the morning, trudging to my workstation in my home office, logging in to work …and sitting in a fog, staring at the screen in a fugue, paralyzed as to what to tackle next. By the end of the day, I feel like my to-do list has grown significantly, and my ability to tackle it has shrunk. I then get through dinner in a fog, with no energy to do much but lie in my darling Mike’s lap while he strokes my hair. Then I go to bed (usually by 9 PM) and sleep like the dead, dreading that I have to start the whole thing again the next day. Basically – I only exist, as opposed to live, when I am pushed too far out of balance. I become irritable, and my patience shrinks considerably. I find myself less able to be around people as my energy drains to zero in seconds – and as an extrovert, that is telling! (Sometimes I even tell my cat to leave me alone…all that loud meowing! I swear, the more out of balance I become, the more he meows for attention – like he knows I need to take a break and rest! LOL!)

Once I recognized (yet again) the dangerous slippery slope I was sliding down, I took steps to combat it by letting colleagues know that my limits are reached and that I cannot handle more than I have on my plate. It can become tiresome and increasingly stressful though, always advocating for yourself and trying to enforce your balance boundaries when people in your life and work around you operate at a faster pace…often verbally nodding heads in understanding, but expectations of output not jiving with that verbal agreement. And living up to my own “high achiever” reputation does not help that balance battle! (See – ego again!)

Recently, someone sent me a link to the Lazy Song video by Bruno Mars…and it hit a chord. The Lazy Song (with Leonard Nimoy) is very funny. And, sometimes it is simply the best advice for when your balance has taken a hike!

Taking a cue from that video, and steeling my own personal balance backbone once again, I dove into strengthening my balance by reconnecting more deeply and singularly into my yoga practice. I began doing restorative yoga alone, with native american shamanic drumming as background music, going with the flow my body wants…taking my ego completely out of the equation. I gotta say – I am loving my time alone and with my ego as silenced as I can get it!

What about you? Does your ego sometimes get in the way of maintaining balance in your health management? (Or is it just me??? ;)

“When we get too caught up in the busyness of the world, we lose connection with one another-and ourselves.” -Jack Kornfield

Namaste

Carolyne

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Lifestyle Changes due to Chronic Illness and How to Deal with it

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“We must embrace pain and burn it as fuel for our journey.” ~Kenji Miyazawa

Image Source: nickomargolies.com

A chronic disease like Multiple Sclerosis (and many others) comes with a lifestyle change. It may be a noticeable lifestyle change – like going from walking to rolling; or from seeing to not seeing. But, it may not be immediately noticeable, as it may mean little tweaks here or there to diet, new or adjusted medication(s), accommodating fatigue, etc. It may be immediate, or it may change slowly as the disease progresses. No matter the pace…lifestyle changes due to MS or other chronic illness are usually faced at some stage.

One of the biggest fears is the uncertainty associated with a chronic illness such as MS or seizure disorder or other chronic illness. The condition may be sporadic (such as in a seizure event, in my own case), lasting only a short while. Or, it could be permanent, gradually worsening over time, such as in most of us dealing with MS.

Chronic illness can force us to face and deal with many potentially stressful lifestyle changes, such as giving up favorite activities, limiting social engagements, adapting to new physical limitations and special needs, and paying for what can be expensive medications and treatment services – or even choosing not to pay for these services due to resulting  financial changes. Even simple day-to-day living may be difficult. It can hit you like a sledge hammer, or creep up slowly over time. Over time, the stresses and anxious or even negative feelings can suck you dry of the emotional energy necessary to move forward. Lack of progress in your recovery or worsening symptoms can trigger negative thoughts that heighten feelings of anxiety and sadness and even anger, often leading to depression.

For me, the biggest sledge hammer was the loss of my driver’s license as a result of uncontrolled seizures. It was a huge lifestyle change – not only for me, but for my family, and even my ex husband! It necessitated a move, and a new working lifestyle and accommodation. It forced me to look at my lifestyle from a completely different perspective, and figure out how to accept all the change and move forward.

So how do we deal with it all? Well, for sure I can say that coping is highly individual. Adapting to your condition or feeling good about the future may seem impossible at first, but it can be done. (Seriously! And the good part? It gets easier over time as you develop your “happiness muscles”!) I wish I could say that there was a special techique, or a good recipe that always works. My own experience as shown me that even as an individual, one has to learn to roll with the changing changes…and that the look of that “coping” changes depending on the situation at hand. Does that mean it’s a hopeless cause trying to cope with lifestyle changes due to chronic illness? Nope – it just means there may be more interesting challenges than previously anticipated!

Here are some suggestions for coping with chronic illness:

  • Stay connected socially. It is so very important not to “turtle” for too long, leading to self-isolation. Establish and maintain quality relationships with friends and family. Join or form a community of positive support. Join a positive self-help group – and recognise that one size does NOT fit all. You may have to search around a bit. These groups will not only aid your own well-being, but also provide rewarding opportunities to help others.
  • Take care of yourself first. Don’t allow worries about your illness to get in the way of eating property, getting rest and exercise, and having fun. And don’t feel guilty for putting yourself first and saying “non” if there is too much on your plate or you simply need rest.
  • Maintain a daily routine of work, errands, household chores, and hobbies as much as possible. Include 15 minutes of daily meditation and/or yoga. These will help you sustain a feeling of stability amid the chaos and uncertainty of your illness.

(Reference: The American Psychological Association )

“A bend in the road is not the end of the road…unless you fail to make the turn.” -Unknown

Namaste

Carolyne

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