Hearts Line – Telling friends what was going on meant laying our hearts on the line. Living with the unknown, knowing a chronic illness was sucking the life out of us both — it was too much to bear. Hearts Line is about loving the line of life with a chronic illness. Hearts Line. It’s what carries us forward.
2 years ago – Crowd Funding – Honesty and Fear
We became transparent. We told the truth. Chronic Illness was killing us. We had few options.
Was it worth it? I often wonder.
After 13 years of chronic illness, some years better than others, but a constant chasing the dragon, I know it was worth it. Knowing the dragon by name, calming it’s flames, and constantly seeking ways to survive with its crazy constant surprises .. it means we live with a dragon. Better the beast you know, right? We’d chased doctors for 13 years. From the day after my Dad died until today, Rick’s fought this demon and it’s invisible, unkind, unpredictable, and constantly changing and challenging.
12 Step Principles applied to daily life with a chronic illness such as CFS / ME
And yet, without the tools of the program, there is no surviving this. The first principle I had to repeat daily was that I didn’t cause it, I can’t control it, and I can’t cure it. It’s so important. Remembering this meant sanity. It meant I was not in charge of his recovery, I could help, I could guide, but ultimately, it’s not in our control.
The three c’s are as important in chronic illness as they are in accepting an addiction. So are the three A’s — Awareness, Acceptance and then Action. Until these are grasped, there is no serenity, no mindful awareness, no appropriate and timely action. Rushing into solutions can often cause more problems.
Hearts on the Line was our decision to be transparent, and still, we weren’t sure. It’s become Hearts Line – our line to move through the world.
We sought some help. We had to make a hard decision: A medical need forced us to explore out of state medical help which would be cash only. Heart’s Line made it clear we might be helped if we asked. We chose to do a crowd fund. We’d hoped it could cover a good chunk of the cost. Mostly, we hoped and were encouraged by our medical team, to seek help at the Mayo or Johns Hopkins or somewhere with more extensive equipment.
The only thing I really knew at the time was if we didn’t try we’d never get a diagnosis and we’d never get a hope for a cure.
What we can give from this is hope. What we can make of this is life goes on and you do your best. The lessons are huge. The teachings can serve to support anyone with an ongoing chronic illness and their caregivers.
These lessons have served me well. Make yourself a cup of green tea (great for inflammation) and ponder these tips. What would you do? You might start by thinking about what you would do if it happened to you. Some things can not be solved with money.
20 tips to carry you forward
- Don’t give up
- Love is what matters
- Friends and family will disappoint
- Acceptance is the key to everything – know this
- The Patients do what they can and no one wants to be sick
- You make the best decisions you can, knowing what you know, and you can’t predict everything
- There is no room for toxic, painful relationships
- Time is resource – use it wisely
- Discern whom to share with
- Be Wary of Support Groups — “some are sicker than others” is a common quip used to describe poor behavior.
- CareGIVING is not the same as CareTAKING
- Doing The Next Indicated Thing is essential.
- Ask for help but don’t expect it to come from expected people or places. Hell, don’t expect it at all.
- Seek insight from your journey
- Seek insight from those who’ve been there
- Find someone to talk with
- Keep seeking ways to be present in the world
- Find new interests – they may lead to passion
- Engage with people about their lives — don’t constantly focus on your illness
- Service – however small – still serves. Do something for someone else.
Over the past 2 years, we’ve embraced many changes. We’ve learned. We’ve loved. We’ve laughed. We’ve cried. It is a grieving process that no one can teach. It’s a painful process that leaves one feeling raw. But as we learn, we choose to share. Maybe it’s selfish, but what I know as fact is that most people have no idea how to move through these difficult times. They rely usually on one family member. That is usually the one who is least prepared financially but most prepared emotionally. Many think giving advice is helping, but the truth is help is helpful. Help leaves the recipient feeling less burdened and less stressed. Advice, depending on who it comes from and how delivered, is often arrogant and self-centered.
If you are caring for a parent, don’t expect siblings to help. Expectations are usually premeditated resentments. Do what you can. Ask for help if you want, but prepare for no response. Don’t take personally their attitudes. They can’t know. They often can’t deal with it. And it’s not helping you to get sucked into old games when you need to be present. Do not let the old baggage damage the current care of your parents. Put the old stuff on the back forty.
If you are caring for a spouse, seek support groups but find those that support YOU and empower YOU. Be good to yourself. Trust yourself. Seek advice when appropriate but remember, your self-knowledge is more accurate than an outsiders interjection of their limited view. You have to take care of you, not their opinion of you.
Whom ever you care for — be at peace with your choices. No matter what, you are doing what seems best at the time. You are doing what you do because of you. It may be who you are. It may be because you made a vow. It may be because you are the dutiful daughter who has always been there. Whatever reason — you are doing what you do because it is you.
Don’t let anyone take you down.
Set your boundaries.
Know your limits.
Find your way to peace. Cherish your soul.