No, sorry, I don't have an answer to the conundrum proposed by the title of today's post, in fact I find this to be a very tricky area. How DO you cope with a chronic disease and get your needs met without draining the energy of your loved ones? How do you graciously accept help when you need it and still maintain your sense of independence? How do you allow others to do for you and still challenge yourself to do more? When is it time to push yourself to a higher level and when is it time to rest?
It seems that friends and family naturally rally around when a loved one has an acute illness and is in need of hospitalization or surgery. People know what to do and there is a goal to work towards; they can visit the patient, send a card, offer support, bring meals, offer rides to appointments etc. The same efforts don't translate well when an illness is chronic, although there is often a flurry of activity after the initial diagnosis. I guess it's just human nature for attention to wane and interest to fade. Day in and day out attention is hard to sustain and often not necessary.
For the person with the disease the challenge is to find the right balance; one still needs attention from friends and family, if only to know that there is a person that you can call who is a good listener. The more difficult dilemma is to provide one's self with enough attention, just enough so that you remember those daily regimens such as medication and exercise, enough to maintain optimal health, but not so much that you become mired in your daily complaints and forget to enjoy life. And, the balance changes depending upon the progression of the disease, how you feel on a given day, what kinds of stress you are experiencing at a given time. How does one adjust the balance and continue to maintain a sense of optimism without ignoring reality? How does one receive the support and comfort from friends and lovers without appearing to be whining or demanding, too weak or needy? I don't think that anyone can manage to feel courageous and upbeat day after day, yet it is unbearable to feel negative and hopeless. Realistic yet appreciative, vigilant yet flexible, upbeat yet thoughtful....it is an exhausting balancing act.
How do I take care of myself and focus on my needs when, like a salmon swimming upstream, I am exhausted by the relentless effort as I fight the tide of neurological damage. Yes, I am having a bad symptom day. Fatigue and chest tightness have overwhelmed me, I debate whether I am taking better care of myself to rest at home or to force myself to go to the gym. I have lost my way as I contemplate which fork in the road to choose.
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Whew, lots of common areas.
ReplyDeleteStrength, energy, competitiveness and a pretty good outluck on life has helped me a lot. I've always been a 'jock' of sorts and liked being strong and athletic. My ability to do most things has not diminished and my husband tells me he forgets that I have a problem. My sisters are a little bit of a disappoinment, because they never come to visit ( we are all over the country) and I believe they don't know planes fly both ways. They have no understanding of the struggles I have had at times. Thank god my friends are so dear to me and mean so much.
People often tell me how good I look, as if they expect me to turn into some 'other' being. I make a point to be a presence in places where acquaintances have not recently seen me because I'm sure some of them are scared to find out how much I've deteriorated and I really haven't changed that much. A little more weight , perhaps, but I think the Mirapex is to blame. Better to be fit and fat than skinny and unable to support one's own weight. I'm not fat, but it is more of a struggle because food is on my mind constantly.
Balance is important. That's why I gave up my nursery business 4 or 5 years ago and began the disability process.
Years ago, I decided not to worry about the things I could not change or control. It has stood me in good stead and been a great life lesson. I work hard in general and there is only so much a person can do in a day. That took me much longer to 'get' and I finally did even before I found I had PD. These philosophies have helped me a lot.