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DEALING WITH THE HIGHS AND LOWS OF HAVING A SERIOUS ILLNESS

By Kayla Giacin
Wednesday, September 11, 2013

Whether you’re a current patient, long term survivor, or close family member or friend dealing with a serious illness such as a brain tumor, you have no doubt experienced very strong emotional highs and lows regardless of age, support system, or current health status of dealing with this on a day to day basis.

There are many reasons that people have such extreme highs and lows.  There’s the obvious fact of having to deal with issues related to your diagnosis.  One day you may feel very tired and the next you feel much more energetic.  Of course, the day you or a loved one gets diagnosed will cause a great deal of grief and when you are following up with treatments or MRI’s, you may suffer from anxiety.  Alternately, going to the doctor and finding out you have a clear scan can make you absolutely elated and grateful for everything that has gotten you to that point.

There’s also the physical part of what causes emotions.  Many brain tumor survivors suffer from emotional difficulties because of the location of their tumor and the treatments that damaged the part of the brain responsible for regulating emotions.  Unprovoked mood swings are not uncommon and are difficult to deal with.  Side effects and changes in medication can cause moods to change and they can also become difficult to regulate.

These ups and downs can also be difficult to predict.  For me, it can be set off by something small.  Spilling a cup of coffee when I go to put the lid on or fumbling and dropping a pen due to a minor tremor I have can put me in a bad mood for the rest of the day.  It can act as a reminder of things that are wrong or not the way they are “supposed to be”.

You can’t necessarily control when these changes in mood will happen or what will cause them to occur, but over time – I’ve come up with some coping skills that help me to deal with them the best that I can:

1. Keep a journal.  I actually keep two.  One is for me to completely release in any way I feel like at the time.  I write poems, short stories, sometimes I draw, sometimes I write in a stream of consciousness that might not even make sense.  The other is much more structured and I use it to help me medically.  If I’m going through a medication change or am noticing changes that I think might be caused by something being out of whack, I note what these changes or moods are, around the time I’m noticing them, what I’m doing when they happen, etc… This is a journal I can take to my doctor to help us figure what where the problem could be stemming from if it isn’t in the range of what should normally happen on a day to day basis.  Both are very effective for different reasons.

2. Exercise.  Of course, being physically in shape is beneficial for everyone, but I do this for the emotional benefits as well.  I actually don’t believe in the phrase “no pain, no gain”.  If your motivation is training for a sport or achieving a high level of fitness, then this might work for you but I believe to achieve the best mental benefit, you have to like what you’re doing. It’s also important for a person with a chronic illness to listen to their body and know what makes them feel better and when they should back off.  I find that exercise can help to clear my mind and make me feel accomplished despite challenges that I have and let’s face it, if I’m having anxiety or feeling angry – letting it all out on a punching bag can be a great relief.

Survivors and patients who have more severe physical limitations can benefit from rehabilitation or from classes that focus on exercise for people with disabilities.  Every year at the Heads Up Conference in Montana, there is a yoga class taught by a woman who focuses on adaptive yoga which takes traditional poses and makes them so they can be achievable and beneficial for everyone.  She began teaching it when her son was born with cerebral palsy. This type of yoga gives survivors who depend on wheelchairs the ability to participate based on the accessibility of the poses she uses.  Personally, I have tried many types of yoga and even without physical handicaps, have found this to be the most mentally beneficial for me.

3. Know who your supports are.  When I’m having a bad day, I know there are people I can call to put me in better spirits.  Knowing what kind of supports you need can also be beneficial.  For example, when I need solid advice or someone to back me up, I know I can call on my mom.  When I need to have things put into perspective or be reminded that “this too shall pass,” I know to go to my dad.

4. Unleash your creative side! Creativity can be a great expression of what you’re feeling.  Similar to how I feel about exercise, this isn’t about being great but how it makes you feel when you do it.   It can serve as a distraction or a healthy way to get out negative feelings and anxiety.

5. Know that it’s OK to have a bad day! This one took me a while to figure out.  A bad day doesn’t have to be forever and having the time to process negative emotions can be therapeutic in the long run.  Sometimes all I need is a day to decompress, watch movies or TV and not go out and the next day I am ready to get back into the swing of things.

When it comes to the emotional highs and lows that comes from having a serious medical condition, it’s important to recognize that these can often be unavoidable but they can also be dealt with in a very proactive way.  You need to know your triggers, what helps to keep them at bay and that it might not be caused by anything in particular expect for having an off day. Also, knowing that everyone has a bad day, brain tumor or not, can help keep things in perspective.  

Being more aware of all of these things can help because once you have this awareness; it puts you in the driver’s seat so you can deal with them in a way that will help you best.  

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