“When you face the perils of weariness, carelessness, and confusion; don’t pray for an easier life. Pray instead to be a strong man or woman of God.” ~Luis Palau
The longer I live this illness and work with people who have this disease in their lives whether be a patient or caregiver, the more I realize that when you wage war (in our case against PD) there will always be casualties and unfortunate collateral damage.
The last couple of weeks have been particularly hectic for me trying to juggle family, friends, teaching responsibilities, writing my second book, my mom’s sudden illness, being in a small collision accident, repairing car, and to top it all off- MY OWN ILLNESS!
Any given day can be terribly exhausting requiring some flexibility on our parts in allowing ourselves the time needed to reenergize to keep on tracking. However, there are days and even weeks where life comes at you from all directions and there is no rest for the weary making the recovery when things finally let up that much longer and painful at times.
As I have learned, life does not stop just because we do. Two, just because we have energy and are ready to go does not mean that the people who are close to us are ready to do the same. this can create some resentment on both parts. dealing with these mixed emotions and feelings can be a bit tricky. Sometimes we have to learn to do and go alone although we would prefer some company. We must utilize the little energy we have to accomplish the things we must like caring for our families and then if we have left over energy if someone else wants to come for the ride greeeaat! if not perhaps next time. We must convey this sentiment to those around us so there will be no hard feelings. In this case, communication is of the utmost importance.
However, there may be times when you find yourself at a loss and having important people walk away from your life because they don’t get your illness. They make undue demands on your time without allowing you flexibility to still maintain a healthy relationship. For instance, one of the biggest problems my PD has caused is being unable to commit to things very often. I do so very hesitantly and when I do I allow myself maximum time as possible to rest before and effort to gather strength to accomplish task. But, life does not care about our commitments, unexpected things will happen which will push us over the edge and sometimes the greatest of intentions go out the window.
Those that are closest to me, have understood this and know I am not always able to keep up so if for whatever reason, I cancel or cant make a commitment they are ok with it without judgement. plus, we all know that sometimes our dystonia’s act up, our voices fade, and our fatigue levels maybe through the roof and all we want to do is hide under the covers. All these things can fluctuate hour to hour, one of the things I absolutely hate the most! I can be all perky one hour and feel crappy the next so when I say I will call you or hang out later I may not be able to because of illness plus unexpected family drama comes into play as it invariably does in any one.
How do I compensate? I text friends a lot to let them know I am still there for them. with my family I use the same approach as when I travel rest well before I travel to see them and boost my doses of medications to have enough energy to give them my undivided attention whenever possible. (For my husband an daughter since they are home in the evenings I try to make sure I rest well especially if I know my daughter has events afterschool or my husband is working long hours and I have to take care of things longer). When I can, I call or visit; but sometimes this is not enough and issues surge because the other person feels neglected and unloved and may even choose to walk away from your life. This is what I call unfortunate collateral damage because all I was trying to do is fight this disease to keep going while minimizing outside contact at times in order to ensure my survival and ultimate victory.
So sometimes marriages end, long friendships die, and people you thought would be there forever move away. This unfortunately, is the price we have to pay sometimes in order to keep breathing and fighting. As long as you have tried and done all in your power to show those you love how important they are to you, there should not be any regret. May still have feel heart ache so Leave the door open …in case they decide they did want to be part of your life after all and stand side to side with you in the fight against PD. So don’t be afraid of losing something good because you may gain something better! Your inner peace…
We stand today on the edge of a new frontier …
a frontier of unknown opportunities and perils –
a frontier of unfulfilled hopes and threats.
– John F. Kennedy
all rights reserved – Maria De Leon MD