Part 1: Resilience from the user's perspective - Dealing with the greatest challenge: change.
Anything is possible?
We run up and down stairs, up and down mountains, we travel around the world, we go about our business. We have our everyday lives under control with prostheses, because the latest prosthetic technology enables us to live a self-determined life. Not only do they help us gain more independence in everyday life, they also open up new possibilities for us in sports. Our prostheses give us wings. We fly high. Who would ever have thought that a person with a prosthetic leg could jump further than a competitive athlete with two legs?
Nevertheless, not everything is good, not by a long shot. Healthy people find it difficult to comprehend how much strength, courage and confidence people with disabilities have to muster again and again every day. Many things that are commonplace for healthy people are not for people with disabilities.
Loved and hated - our prosthesis
On the good days, it is a good friend that makes many things possible for us. But on bad days we would like to throw it into a corner - the prosthesis. Our body changes every day, every hour and every minute. It is a utopia to believe that the stump always remains the same and the prosthesis always fits perfectly.
Changes: Back to square one
Sometimes there are small obstacles that others don't even notice, but which make us amputees fail to achieve certain goals. I don't want to talk about external influences now, but about a very specific problem that all amputees have to struggle with again and again: Change.
It happens so quickly that the tide can turn. You're in the flow, you're active and enjoying a wonderful day outdoors and then, *bang* comes the impact. All of a sudden, you feel a dull ache on your stump. It's a small spot in the prosthesis that doesn't fit exactly. First you feel irritation, then inflammation often follows. As high as we sometimes "fly", however, we also land on the ground just as quickly. The prosthesis has to go first. The helper that enables you to live your relatively independent life stands unused in the corner for an indefinite period of time. The pain and swelling are too great for you to put the prosthesis on. Not to mention that this only unnecessarily delays the healing process of the pressure point. In my case, it can mean having to interrupt a training phase before a competition. A pressure point on the prosthesis is definitely one of those setbacks. What does that do to you mentally when your plans are thwarted abruptly?
In order to mentally cope with such often unexpected setbacks, I have formulated 4 principles for myself that help me to accept the situation:
Acceptance - accept the situation
Help - seek and accept help, activate the network
Self-efficacy - find activities to distract yourself
Goal setting - make plans for afterwards
Acceptance & self-efficacy - accept the situation, find distraction.
Accepting the situation means taking the gas out of the acute phase and taking it easy. What alternatives can help? A wheelchair that I can manage well, people who are good for me and provide distraction. Everyone has to find the right balance for themselves. One needs more time on the couch listening to audiobooks, the next tidies up his office stuff. I belong to the latter, not for nothing is my nickname "killer bee". A bee basks briefly on a leaf, but is usually active. But the activity must be adapted to the situation. Because it is also about steering the carousel of thoughts in the right direction. The activity can also take place in the head. Finding the strength in calmness to accept the situation and not to despair of it. Our opponent is impatience. I have that too, of course, but I redirect it. Everyone has unfinished business that they put off. What a liberating feeling when, on the one hand, you're trapped at home because of mobility issues, but you're finally getting your bookkeeping in order. Both physical and mental activity help me. I exercise in moderation and I keep my mind distracted. You'll feel better when your circulation is up a bit, plus it provides better circulation and promotes wound healing.
Help - seek and accept, activate the network
If I have problems with the prosthesis, my first port of call is actually not the doctor, but my Certified Prosthetist Orthotist (CPO).. Only he can "cure" the origin of the pressure point, because the prosthesis must now be readjusted at the pressure point.
Living with an amputation means understanding that prosthesis fitting is part of life, just like regular appointments with the prosthetist. Show appreciation to this partner, because he or she will try everything to make you the most perfect prosthesis possible or to help and assist you in this very need. The more constructively you cooperate, the more precise your briefing is, the better the information can be implemented. What led to the pressure point? What movements could have triggered it? Was it particularly hot that day? These and similar questions help enormously in the further development. Of you and of the prosthesis. Fortunately, digital tools like the Mecuris digital workshop allow us to get more and more involved in the development of our prostheses. Not only in terms of design: my prosthetic foot, for example, is precisely adapted to my gait dynamics. Such individual prostheses are enormously important and should be available to all people with amputations.
I am very lucky because I found a prosthetist many years ago who has my complete trust. We have known each other for so long and he knows exactly how to help me quickly. My feedback, which is as accurate as possible, helps him in his work to adapt the prosthesis as precisely as possible to the new needs.
But it's not just the CPO who is a valuable partner in mastering these times of change. It is at least as important to keep an eye on the soul and mental balance. Inform and activate your family, friends and acquaintances. Who can help you and how?What support can they offer? Have the courage to accept the offered help. Think through your situation and consider exactly where you could use help. For example, perhaps a relative can accompany you to an appointment and drive you. You can probably find someone to do the shopping for you or help you around the house. There are many possibilities - use them!
Activate your strength and set goals
However, the greatest strength to deal with such a situation comes from within yourself. Do you want to get angry, despair or lash out (verbally/emotionally)? Does that really help? Maybe, very briefly. But it doesn't get me anywhere. Life is too beautiful and precious for me to let these bumps in the road throw me off track. For me, it has always worked better: Focus your energy and regain confidence. It helps to know that there is a way out of every difficult situation. Visualize how far you've come. And paint a picture in your mind of what you'd like to do again once you've overcome that minor setback. This can be a walk around town or a short hike, whatever you enjoy. For people with two legs these are banal things, but for people with disabilities they are not. You have already been through many difficult situations, activate your self-confidence that you will also overcome this setback.
Stay tuned for the second part of our series: Resilience from the CPO's point of view.