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

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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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