I'd like to take a minute here and talk a little about the caregivers.
Being a caregiver of someone with a chronic illness is very demanding. It's stressful - physically
and more so, emotionally. Caregivers spend so much energy trying to make their loved one feel better, scheduling multiple
appointments, synchronizing schedules, taking care of other family members and household responsibilities, and some have to
hold down jobs on top of it.
For me, I think the hardest part about being a caregiver is when my daughter is hurting and
there's nothing I can do to take the pain away. Sometimes I can't even give her a hug or gently hold her in my arms because
my gentle, loving touch can cause more pain. Second to that is when we're at a doctor's appointment and the doctor isn't
listening to what we have to say. When we're being treated like we need psychiatric help.
This is usually the scenario... The doctor(s) don't know and understand what RSD truly is so
they treat "you" (family & patient) like you're nuts (or attention seekers, etc.) because they don't
want to deal with you. Your case is too complicated for them and this is their way of getting rid of you. If a simple
pill or surgery can't fix you quickly, they brush you off. Not all doctors are like this, but in my experience, you
really have to search for a doctor that is knowledgable about RSD and is willing to stick with you and help you - even when
it gets tough. Just having your doctor sit there and listen to you, really listen to what you are saying, feeling,
etc. goes such a long way. Even if the doctor doesn't know what to do next to help your loved one, hearing them say exactly
that while being empathetic to your situation means so much to the patient and the the family too.
Speaking of this, I'm reminded of a friend of mine whose daughter has RSD. This girl has had *many*
treatments/procedures in order to find pain relief. Not long ago, the doctor they have stuck with was at a loss for what
to do next and the family felt like they were being "brushed off" because he had nothing more to offer. I know doctors
get frustrated by this disease, but this girl and her family felt like they had lost an old friend. They had a doctor who
was very good with trying various treatments, bedside manner, you name it - someone they had come to rely on - suddenly
leaving them feeling like they were being brushed off. It's NOT all about treating the disease, it's also VERY MUCH about
treating the patient and their family!
1. CAREGIVERS ONLY - How do YOU, the caregiver, cope with RSD?
~ What is your advice/tips
to new caregivers "out there?"
**** How do I cope?
I read everything I can so that I can feel empowered. Then I try to put it out of my mind
so I can sleep at night and get through the day.
I count my blessings every day.
I remind myself that eventually,
“this too shall pass”
I remind myself that as long as my child is alive, there is hope.
I remind myself
that I survived other tragedies.
I wait until my child is asleep and I cry my heart out.
I talk to everyone I know about
RSD and the symptoms in case anyone has ideas, e.g., eat a banana every day to prevent leg cramps.
THE CHILDREN - What do YOU, the CAREGIVER, do to help your RSD child cope?
**** My son has had RSD for seven years; he is 24.
How do I help him cope? It
has changed over the years.
I have listened while he cried out in anguish, angrily questioned God, cursed doctors, and
felt sorry for himself.
I have rubbed his legs, back, neck and arms. I have also used an electric massager on those
I have bought him massagers (electric and manual), braces, specialized clothing, crutches and a wheelchair.
have stored the wheelchair and crutches where they are available but out of sight.
I have accommodated his changing lifestyle
as he has become more religious.
I have remained calm when he has discussed suicide with me.
I have held my tongue when
I wanted to offer help or advice, so that he could develop independence.
~ Mother of 24 year old son