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The Myeloma Beacon is a wealth of information with many regular writers. This is a copy o f an article and is a perspective on the skills required to individually manage myeloma….worth a read
One of the most important things a myeloma patient can do is to seek care from a myeloma specialist, but that speaks mainly to the physical needs of the patient. What about the psychological needs of everybody involved? What are the key skills for coping with myeloma?
I decided to discuss this topic with my husband, Daniel, who was diagnosed with smoldering myeloma in 2012. This column is our response to that question.
Skill #1: Adapt to and cope with change.
One of the best skills you can learn is how to cope with change.
Adapting to change is tough. Corporations spend millions of dollars teaching their employees how to recognize the need for change, cope with it in a healthy way, and adapt their skills to their new environments.
Myeloma patients and their families also deal with change. I have heard countless patients and their families talk about their experiences when they or their loved one was first diagnosed. All tell similar stories about how shocking it was and how irrevocably it changed their worlds.
If I could hit the rewind button back to 2012, I would tell myself what I should have known from my professional training: people aren’t born knowing how to cope with and manage change. It’s a skill that must be learned, like learning new operating software or starting a new job.
Too often, we’re in a daze when we are first impacted by major change. We just go from day to day, trying to deal with it as best as we can, like a pinball in contained chaos, bouncing off of strobe-lit flippers and sound-making bumpers, until we go down the wrong path and we have to start again.
It’s important to remember that the journey through change is a continuous learning process. Learning how to respond healthily to change makes all the difference between surviving change and thriving in the midst of it.
Seek out resources to assist you in strengthening change skills. Read books on personal change management, attend myeloma seminars, find support through the Beacon’s discussion forum or myeloma support groups in your community, and consider whether you need to speak to a qualified professional.
Also, don’t be afraid to ask your specialist questions, regardless of how basic they sound to your ears. Myeloma specialists have had years to study the disease, and they understand that patients and their families are getting a crash course in myeloma (that they never signed up for).
Most importantly, recognize that, like the acquisition of any new skill, adapting and coping with change takes time. The goal is to live with myeloma and not be controlled by it. The more you learn about your limits, your emotional needs, your trigger issues, and where you find your strength, the more you’ll get a sense that you are doing what you need to do to live with myeloma in a healthy way.
Skill #2: Compartmentalize your life.
Another skill that patients and their families need is the ability to compartmentalize their lives into manageable chunks, so that they are able to function normally.
Life doesn’t stop for myeloma. The circumstances of living with myeloma include some not so pleasant things, and if you are not careful, they can become the focus of each day, choking out the other aspects of life, until only the myeloma remains.
Focus on your work when it is time to do that. Focus on the things in your personal life that make you happy. When possible, minimize the things that take away from your joy. Enjoy your hobbies or, if necessary, find new ones that require less physical exertion. Celebrate birthdays and anniversaries, go to the movies, take the dog to the park, and visit with friends.
Myeloma will take enough of your physical and psychological energy. Don’t give it more than what is necessary.
For Daniel and me, we put some things on the shelf, to be dealt with at a later time. We concentrate on the present, to ensure that today is a good day. This may sound simplistic compared to the gravity that myeloma can bring to bear, but we handle issues as they arise, and we keep moving forward each day, seeking to prioritize and compartmentalize as needed.
Managing change is really more about managing transitions between what used to be, what is now, and what will be in the future. The past is past, and the future will happen. Today, however, is where we live.
Skill #3: Actively practice hope.
Lastly, I would urge you to practice being hopeful.
Hope can help you to recharge your batteries and give you what you need for that day. It shines a bright light into the doubt-filled corners that creep into your mind, and it can calm the anxious spirit. If I’m feeling a bit down, I focus on the things that I’m hopeful about, and before too long, my attitude improves.
Myeloma demands mental toughness from us all. There are times when it’s tough to be positive. That’s understandable. The beautiful thing about hope is that you can have it even when there isn’t a lot to be positive about.
Hope brings peace and comfort to the weary, and it stems the tide of worry. But, most of all, it strengthens us as we look toward the horizon for what tomorrow might bring: a cure.
Rebecca,
Interesting post.
The personal perspective of each one of us will be based on our mental and emotional ability to cope with change. Corporations etc. find change difficult because the ability to take a whole group of ‘diverse and agenda seeking’ others’ to ‘another place’ to function better is very hard unless leadership is very very strong and charismatic.
From my own ‘religious/ philosophical’ perspective I have long seen that the whole of life is actually one of ongoing change throughout life, but we do not notice necessarily these because of the continuity of our lives.. until that continuity is undermined.
Living as fully as possible in the present, (not the past or future which becomes the present at each movement of time), and appreciating what is good and joyful in our lives and making the best of our ‘changing circumstances’ is key to making the best of our life. Not always easy I realise when you feel unwell.
Some may benefit from professional help, others will get support from those they open up to and trust. We will all find what works for us ourselves. Fear of ‘what will be’ is the enemy to overcome in my view to living well in the present.
Dusk
Yes you are so right, I do feel tho it is a shame that we are not automatically helped with the armour to deal mentally with a cancer diagnosis. I have read a lot and thought I practiced “mindfulness” very well – “choosing” to react to things positively and choosing to do things that make me happy rather than get bogged down with things like work etc. However, recently I have begun to think that in doing so I have changed personality quite drastically – for me its for the better – but others think I have “shutdown” emotionally on some aspects that makes me not “the real me” anymore? I do not really get upset/angry about anything – if you relate things “in the great scheme of things” everything seems so “trivial” and not worth getting upset over. Sounds great but was accused it was unnatural and “Stepford wife” was mentioned! – serene, no longer short tempered, much more easy going – I like this new me but to some others this shift in change is hard to take and don’t think its normal? Which goes to show that even if we achieve the ability to adapt to change and evolve those around us may not be moving forward with us ) My husband is, naturally, much more stressed and fearful than I and I guess that is because when I am gone that’s it for me – but for him it is a future filled with the unknown and walking this path alon. Since diagnosis I like to collect quotes as I did read a lot of books initially -I still weekly flick through my quotes as they have all helped me through various stages of the game. Helen Keller said “When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has opened for us”. I am going to add that in my funeral speech (when I get round to doing it) to remind those who are left to seize life.
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