TO ALL THE CAREGIVERS HELPING PEOPLE WITH AFS, THANK YOU!

I wanted to do this video because I know how hard it can be to be on the other side of this illness for the caregiver. I too am still a caregiver to my single elderly mom with many health issues. She also has AFS too. This is for another day. I also for many years took care of people who were suffering from serious illnesses. This has allowed me a perspective from both sides now. When I entered this world I saw how I now needed a caregiver. This was very eye opening to say the least.
My partner is a chiropractor and she was use to having many patients in her day and she had a lot of experience dealing with people with physical issues, she however couldn't believe how brutal this illness was and how many symptoms you can have. When you are in the advanced stages you need help, support. I also know that many ill people do not have the support they need. My heart goes out to you. It is not easy to deal with someone that is constantly ill and you don't know when someone will be better. This can be about many illnesses I know.
Please know that we do not want to be a burden. It is hard for us to be so vulnerable and need someone so much. We feel so vulnerable and you right now are a lifeline.
When you are very ill with AFS you won't be able to work, go shopping, drive, socialize, many are couchbound or bedbound. For all of you with children I know that this is a difficult time for you too. Children are confused, they don't know what's happening. They get nervous too.
I KNOW THIS IS LENGTHY BUT IMPORTANT.
People that are ill have a hard time dealing with any kind of demand put on them in any way and that definitely includes their children, family and even friends. I wanted to take this time now to SAY THANK YOU for being a part of the healing process. Because this is such a difficult time I wanted to share some:
HELPFUL TIPS FOR CAREGIVERS TO TAKE CARE OF THEMSELVES...
1- Be aware that there can be many symptoms that come with this- there will be much fluctuation in the personality of the one you are caring for, sudden anger, sadness, tears, needing to eat often, they may say things like I don't know how long I can do this or I don't feel like I can live like this any longer. This will frighten you and confuse you because you will not always know what to do but simply listen and encourage them with your love. Love heals we all know that. They need to know they are loved. We know you will be doing so many things for this person and they will not be happy or may not even be grateful just let this go. Don't have a lot of expectations on this person as they are very ill. They will not be able to do many of the things that they use to do. If you can afford to hire someone to help you do some things in the house like even grocery shopping this may be a huge weight off your shoulders. Many of the caregivers have to work and provide for the entire family. The ill person may say to you I can't be alone please stay with me. The fact that one can not contribute any longer because they are not able to work I know puts a huge stress on the primary caregiver. You have to be creative now to help you take some stress off of you. Be creative because there may be some options for you that you haven't thought of.
2- People who are really ill don't want to have to rely on you so much they just have no other choice. They are in a survival state. I know I have said this often but it is true.
3-This will put a lot of pressure on you in many ways which of course you can see now and my heart feels for you. Please try to get some rest when you can. You will feel stressed so you have to have many of your own strategies to relax. Talk to your friends, family members or someone you feel comfortable with what you are going through. This is important, I feel for you. You will get frustrated and confused often.
4. Get out into nature for a walk. Say empowering things to yourself to keep your strength up. If you feel angry please try to walk away and redirect your focus on something you can do to calm yourself. Like I said people with this illness are all over the place. It is a very painful illness and they will feel hopeless often.
5. If you have a hobby and you love it try to stay connected to it.
6. These are just a few, I know you will think of others. Just do the best you can. You will feel many emotions yourself and don't beat yourself up for having them. Nothing is easy with any of this but what's important to know is- EVERYONE IS DOING THE BEST THAT THEY CAN...
If any caregiver has any questions please feel free to reach out to me.
Lots of love to all of you,
Petra
PLEASE SUBSCRIBE

[@marya.pierce5236]

Petra, I couldn’t help but cry while I listened to you. You’re right, there’s no manual on this and you don’t know how to explain it. And when I’ve tried, I usually ended up regretting it. So it is a very deep teacher. I I have always desired wisdom and boy, is this the time that we gain wisdom. And we have to take that gift and keep it as a treasure inside of ourselves and not need to explain it. And when you said this is mind blowing, that is not an exaggeration. I think the people closest to us have absolutely not known what to do to help so I highly value them for what they have done and for listening when we need to talk. I haven’t had a caregiver, per se, but I’ve had one or two people that I could vent to. But when it comes down to it, this is our own work, 1 foot in front of the other, when we have the energy and just keep on going, even when we have no idea how to do that and when we have no clear objective picture of whether we are making any progress. It’s like you said, Petra, and one of your other videos that you would say yourself I don’t know how I got here, meaning, finally got healed, but it was a matter of one step at a time, and it got you there, and it will get all of us there. Amazing. I’m still in my healing journey, but I see a little glimmers of progress and it makes me hopeful that I will come through this and be wiser. Love to all and encouragement to all. ❤️

[@petra3049]

Mary- I hear how tough you are. We are the courageous ones. We get up and keep going. We are busting through all of the old life that we had and the thoughts. We are creating anew. Let's make it happen for ourselves. One step at the time. If we crash we must get back up and go again. We got this. Get all good things going into the mind constantly. YOU WILL GET THERE!!!

[@susan13151]

Your encouragement and wisdom is inspiring. ❤

[@cynthiasmith8162]

Such an understanding video…as always ‘Thankyou Petra’. 🌷

[@Bubblesandcandyfloss]

Petra’s videos keep me going.

[@marya.pierce5236]

Yes, anyone who has patiently listened to us when we needed to talk or offered us any kindness on nurturing are so invaluable. We don’t want to stay in this situation, we want to be healed so badly. I thought how wonderful it would be if I could go to a convalescence facility, like Bette Davis did in the movie Now Voyager. There used to be places like that and maybe they’re still are for the very wealthy. A place where you can go and rest and heal. Love you, Petra. And much love to all you who are on this journey with AFS. And thank you to all of those who have extended support and kindness when we have so desperately needed it. So much love to all of you. ❤️

[@petra3049]

Oh I remember movies with these "special" places to go. Everyone wore white and everything was white- the buildings. Everything was so quiet and peaceful and you could sit outside on the lounge chairs and relax in the sun or the shade. xoxo

[@Bubblesandcandyfloss]

Great idea Petra! About the interview with your partner. I don’t think there is any interview there with a carer of an AF person. ❤ so this would be valuable. I’m sure she had very trying times. Our caregivers deserve so much thank yous.

[@petra3049]

Our caregivers do deserve so much. There are many of you out there too that have no caregivers and my heart goes out to you. I am thinking of you and all of you that are suffering with this illness. We must keep going. Step by step. Love, Petra

[@Unmutedemotions]

I literally had my aunt tell me I was a burden cause I asked to stay with her I was so scared still hurts me to this day . Never felt so alone anxious and low . You never felt heartbreak till ppl don’t wanna be around you cause you are so unwell.

[@Unmutedemotions]

My legs are in so much pain I just dread standing up . I still work everyday on top the pain . I am better than I was but not anywhere close to what I would like to be .

[@petra3049]

We will be a different person from this experience. I hear every word that you are saying. Many people can’t understand what you are experiencing. We do here in this platform so come here to share. All I hear is courage. Your striving to get better. Your strength and perseverance. You are an inspiration. You are doing what is necessary to overcome this illness. You having this illness tells me a lot about you. Your beauty , your sensitivity. I would say I just have to keep going and this is what you are doing. Here - we are not alone. So many people have this illness. 💖💖💖💖. It’s a question here. Do you know anyone else in your family that you feel had this?

[@Unmutedemotions]

@@petra3049 I agree ☝🏼 Thank you so much for coming back after you’ve healed to shed light and be of encouragement 🩷 you are helping more than you could imagine

[@petra3049]

@@Unmutedemotions the legs oh the legs I so understand. Mine felt like I was walking in cement. So painful. You are working through it all. We must stay the course. We will heal. Must believe we will heal. What can I do in this moment to help myself. What can I say to myself right now to calm my body. What can I listen to that soothes me , that inspires me. Be so proud of yourself everyday for something. Have compassion for yourself. Don’t beat yourself up for anything. You are doing the best that you can. So much love being sent to you. 💖💖💖

[@elizabethgalan5590]

Petra this is so hard I don't know when ami going to get out of this you look so diferent beautiful I wish I was there already

[@petra3049]

I know I say it so much Elizabeth that Patience is so important that’s because it is. You are doing an amazing job because I know what you are going through. Please just hang in there. You are building up your reserves. Step by step. 💗💗 it is so nice to hear from you. 💕💕

[@elizabethgalan5590]

Thank you can you make a video about what you eat during this time especially for breakfast I t will be appreciated

[@EC-yd9yv]

Absolutely mind blowing...🤯🤯 thxxx 🌺💖✨

[@petra3049]

Thank you 💖I really hope that you feel better soon- for caregivers and people that are ill it is so challenging for both. Lots of love to you. 💪💪❤️❤️