Now for Caregivers
(Taken From 2/19/18 Lives Changed Radio Show)
Written by Deb Lundquist
February 17, 2018
Thank you from the bottom of our hearts. Thank you for being there for us every day of our lives. We may not say it often enough, but not only do we appreciate you, but we love you and we need you more than you will ever know!
We know that you don’t really understand what is happening to our body’s. Shoot, we don’t either. Every day, it seems like something new is happening to our body’s. We are afraid and we don’t want you to know just how afraid we are. We have anxiety disorder because we are afraid and we know that we drive you crazy with that and sometimes our OCD gets out of control because we don’t have the energy to straighten things up, so we want things just so. We don’t do things just to upset you.
We know that you don’t get any support, even less support than we do. People don’t understand what you go through any more than they understand what we do. They don’t understand the worry you suffer because they don’t understand your life either. They don’t understand that when our lives turned upside down, yours turned upside down too.
Let me, as a patient, give you some ideas that my husband and I have put together to help both of us, patients and caregivers.
Although you do need to be home more often than not, still you need to take care of yourselves. If you don’t take care of your physical and mental health as well as ours, you will soon find yourself going down the rabbit hole.
Now for the patient:
The patient’s needs will vary from day to day, unfortunately. Sometimes all we need is to sleep. It just depends on the weather, our stress, or our disease and how it is behaving on any single day.
We need you to make the kitchen an easy and safe place for us to use. Meals safe and easy to make, or even better already made so that all we have to made so that all we have to do is microwave them.
We need our living space to be made easy and safe places to access with internet access and with ready phone access. Our lives are mainly based on the internet. That is where we do most of our socializing.
Try to get our friends to come to our house to socialize with us there, so that we can keep our friendships. Maybe see if our church will do Bible studies and fellowship at our house, because it is so hard for us to leave our house. Little things like that would mean so much to us.
It is hard for us to clean our house, although we sit and see the mess. If you can see that it is bothering us, maybe you can see if someone can clean the house for us.
We love conversation, games, people. So, if you can see that we can get people involved with us we would love it.
Anyway, with all this said, we love everything that you do for us, but we want you to take care of yourselves too. We want to stay with us and not desert us, so please, we love you, don’t get burnt out by taking care of us and only us. Try to understand what we are going through. Talk to us and make sure our communication is open because that is key to all of this.
Please remember that you are very important to us and we love you!
For Family of People with Fibromyalgia or Chronic Pain
(Taken From Lives Changed Radio Show - February 19, 2018)
Written by Deb Lundquist
February 17, 2018
It is hard for me to talk to family members because so many desert those who have chronic pain. I really hope if you are listening, you are not one of them. If you are, then let me have a few words with you first.
If you were listening to my discussion to those who do not believe, then I do not need to rehash how this syndrome feels. Let me instead, tell you what it is, or rather what we know so far because researchers don’t have concrete evidence to this day what exactly what Fibromyalgia is. This is why doctors can’t treat it well, put it in remission and to this day there is no cure for Fibromyalgia.
Let me repeat that for everyone. With emphasis. There is no cure for Fibromyalgia because research at this point has not come to a definite reason why we develop it, how we what it is, and therefore how to treat it, let alone cure it.
Do you understand this? Now?
Let me tell you what we know at this this point. When I say we know, it is in parenthesis.
What is Fibromyalgia? It is very real! It is not a figment of our imagination! We cannot wish it away, because boy oh boy, believe me, if we could, it would already be gone.
We are not lazy. As a matter of fact, most of us are Type A personalities and Type A personalities cannot be lazy. It is not in our personalities!
We want to work! We do not want to be on disability and, as a matter of fact for us, disability is a last resort! We want to be income earners for our families. We want to be active members of our families. We do not want to drop out of our lives or society. Most of us are people-persons and so isolation is like a prison to us! A prison that this illness has made for us, not one we made for ourselves. We did not ask for this disease or this isolation and we really need people to realize that and help us, not ignore us. We did not create this disease. We did not imagine this disease. Please do not abandon us!
We are unable to do the things we could do before we got sick. We cannot cook, do the dishes, clean our house, do the laundry. Often, going to the grocery store is torture to us because picking up groceries is heavy. Think about it. Every muscle in our body hurts now in a way a healthy person cannot imagine and has never experienced.
We do not want to be on drugs. We hate drugs and how they make us feel and yet without the drugs, we would find life totally unlivable. Many of us are trying to go holistic and try all natural ways of taking care of ourselves, but many of us have very painful diseases on top of Fibromyalgia that make it impossible and we need to use medications. Do not judge us. Number one, you are not living in our body’s. You are not living with our pain and therefore cannot possibly understand how we exist day to day. Number two, you need to learn what Fibromyalgia really is and by learning what it is, you need to understand it.
Do not tell us we do not look sick. How do you expect pain to look? How do you expect itching, confusion, lack of concentration, total loss of control of all of our senses to look? Can you answer that? Have you looked in our eyes? Can you see the exhaustion in our eyes? Do not ask us how we feel? We feel terrible. Ask us what you can do for us.
Do not tell us that we need to get a job. If we could, don’t you think we would be working? This is frustration speaking and that too is real and it is from each and every Fibromyalgia patient. Frustration with friends and family who do not understand and yet feel they have a right not only to judge us, but tell us how to live our lives.
It isn’t that we do not want to do these things. We can’t! Can you imagine only being able to clean a room a day and the whole time you are cleaning it you are crying from the pain? The next day, you are in bed because you are suffering so badly from the cleaning of the previous day? This is the life many of us live.
This is Fibromyalgia.