“Love the people who see you when you are invisible to everyone else.”
We all know that having a chronic illness like Parkinson’s disease makes dealing with all other aspects of our lives much more complicated. Handling our personal, social, emotional and financial situations can turn into a bigger challenge, if we don’t learn to recognize and deal appropriately with the symptoms others can’t see like pain, anxiety, irritability, and depression. In turn these issues can lead to more serious problems of isolation, strained relationships and agoraphobia.
Learning to live and cope with all the ups and downs of a chronic illness takes skill and a great deal of support from our friends and loved ones. However, sometimes is the invisible symptoms which cause us a great deal of pain and hardship especially if we are not in tuned to these problems as a family or person living with PD.
I don’t know about you; but sometimes besides not feeling well physically I just wake up angry or sad for no apparent reason. When this happens not only is it tough to deal with being off mentally, but also having to act and carry on activities of daily living like nothing is wrong. So what happens? Either we take it out on our loved ones by becoming extremely irritable making it hard for others to get near us or being on edge and exploding at the slightest provocation. In this scenario everyone hurts and suffers. Best way I have found is to isolate myself for that time as to avoid hurting anyone’s feelings. Sometimes a good cry for us women is all it takes. But, in my experience, this is a sign that something is amiss with our bodies and brain function such as our levels of dopamine have faltered or we have an underlying problem such as a cold, urine infection or dehydration. Meditating, listening to happy tunes if sad and faking a smile till you feel it always works for me. Sleeping is also another wonderful remedy for when things are not going well or seem out of sorts. Once you wake up from a good nap, things always look brighter. Otherwise feeling irritable can create much friction especially if you have children or other people who depend on you for care. Hug your children, spouse and loved ones this also eases the irritability.
Other times irritability comes from being in pain. Sometimes we can barely stand being inside our own skin much less deal with any outside factors or demands. Don’t be afraid to talk to your doctor to provide adequate pain medication so it does not turn chronic. Many times increasing the levodopa is all that is needed to handle the pain. However, if pain is due from dyskinesia’s causing strain on your neck or back then the opposite is required with possible DBS and other treatments to manage symptoms.
If we are to avoid having strained relationships with those who matter most, we must learn to communicate our feelings without projecting on others our frustrations and disappointments. Since pain tends to color our perspective and alter the way we view things – we have to tell our loved ones “I am in pain right now and having trouble dealing could I have some time to myself or can we not make any major decisions at this moment.” Tell them you appreciate their concern but need alone time or time to heal without blaming them for what is going on your bodies. Unfortunately, many divorces and break ups have occurred because not only do we take out our frustrations on those closest to us when we hurt but we feel that they are not doing enough to help us. However, must remind everyone that it is about us not them. If you are honest and open they will understand and give you the space you need. If you do this and they still leave because you are not dedicating 100 percent of your life to them, then they do not belong in your life. Let it go and move on. Embrace the people who love you and stand by your side unconditionally.
The other thing that happens is that as we begin to have physical problems with PD like freezing resulting in falls and injuries, experience loss of conscious due to orthostatic hypotension, someone looks at you funny while on the floor rather than helping, or says something because you are too slow,or shaky making you feel no bigger than the size of an ant. instead of hiding from the world the rest of your life to avoid feeling this way again, let us find ways to improve the symptoms cause so much social anxiety which could lead to agoraphobia if not treated properly. This sometimes can be a subconscious reaction to having several bad or traumatizing experiences in public in which you felt publicly humiliated. So the mere thought of venturing out and having another episode occur in which you feel helpless induces anxiety and downright panic. I have had a mild experience with this early on when I was dealing with issues of orthostatic hypotension and disequilibrium. I fell down one too many times and was stuck unable to get myself off the floor when alone that for a while I would not phantom the possibility of going anywhere alone much less on a plane. this was devastating in so many levels. As with any fear, the key to conquering and overcoming is baby steps into that which causes the anxiety; sometimes medication is required and other times behavioral therapy might also be warranted. The main thing is not to let the fear and anxiety take over your life. Find a way to get back to doing the things you love independently or if needed a friend that will reassure you to continue being active.
Even though, most of us have experienced all or some of these at one point or another in our illness, the key is to recognize them, talk to your physicians about them asap and also with your loved ones to prevent them from robbing you of your happiness and peace of mind.
It’s time to remove our invisibility cloaks and be seen for the wonderful women and men that we are!
all rights reserved by Maria De Leon
Lately, like so many of you, I too have been feeling distressed- not being able to show up on time to events, or able to attend prior commitments. I used to be the life of the party and a person who could make plans months and years in advance and always able to keep all my commitments. I know that some of you out there living with chronic illnesses and Parkinson’s for a long time know exactly what I am talking about. I have heard many of you complain about the disappointment and distress felt when you or your loved one are no longer included in invitations to parties, gatherings, dinner etc. because you are also unable to always show -up. It’s rather an unnerving feeling knowing that people don’t count on you any longer or even expect you to show up.
While trying to get my head around these feelings experienced by all of us at one point or another when living with an illness like Parkinson’s, I began thinking about my favorite place- the beach.
I you are like me one that enjoys walking down the shore barefooted getting your feet wet as the waves dance around, you probably have taken inventory of common things found on the beach as you have taken many a leisurely promenade.
You most likely saw pier posts covered in barnacles, distressed boats and oxidized iron as you strolled on by. In another time, like us, they were pristine and remarkable to behold. I want all of us to remember and emphasize the fact that although these objects like us (or rather the way we feel sometimes) are worn, tired, chipped, dented and not so pretty to the naked eye are still Beautiful!
This is because, like us, these objects wear the scars of time, hardship, and experience with pride and genuineness. Perhaps, after the waves of PD or caregiving have pelted your body over and over through the years, you too are feeling like these distressed items. Maybe you once had a great career before PD; but even though it might have been a choice to leave it or make necessary alterations- they no longer exist in their previous form.
Like me you are also completely at peace with your life choices given the cards we have been dealt, yet there may still be days when you might feel alone and distressed. Slighted by someone’s lack of understanding, compassion, or feeling excluded may cause the ‘what-ifs’ to creep in.
But, we must not give in to guilt, sadness, much less anger. However, consider this- the only way an object gets distressed is because it has been the best in its field; therefore continuously used and of service. You have been useful and of benefit to more people than you will ever realize and you have the marks to prove it. Just like the distressed furniture found on an elegant and gorgeous beach home invite us to rest and enjoy the view thus contributing to our life’s story.
The same is true for us who are feeling worn out- you have and persistently contributing much to make someone’s past, present, and future better. Your empty seat at a business meeting, lecture hall, medical team, football game is only an indication that you have been instrumental in forging the next generation of caregivers, advocates, volunteers, citizens, and professional people. Remember, just because at the moment you are not at the table of the ‘movers and shakers’ that does not mean that you are done or finished with the work that God has put in your heart or is your destiny to complete until we are all called Home!
Let us instead dwell on the prospect that our ‘what-ifs’ might at some point blend into the ‘what-now’s.‘
Walk rather, on the beach or wherever you choose, always with head up high displaying your marks of distinction- which are a confluence of both your hardships and victories knowing that the past chapters were purposeful and of great impact. So, don’t try to fit in or please a crowd to avoid feeling distressed instead be your genuine self proudly displaying your years of wear battling PD along with your very own colorful bright pink eggs – like the ‘leafy sea dragons’ who although they are able to camouflage their eggs choose not to.
Go ahead, embrace your Parkinson’s disease or whatever other illness you might have and be yourself. Those that love you and matter will always be around to comfort you and support you in times of need and will always have a seat reserve just for you!
all rights reserved by Maria De León MD