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.

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.

• In order to do this, you need to make sure you are taking good natural nutrients as well your Fibro person.

• Make sure you go to the Doctor if you need to go. Stay away from sick people, not just for yourself, but your Fibro person is not more susceptible if you bring something home.

• You also tend to lose friends, so try to maintain some social interactions, remembering that you need to be just a phone call away if help is needed. Bob goes to church even though I can’t always go.

• You need to be continuing to do things you find enjoyable. For instance, my husband goes to auctions with his brother. He goes to sales with him as well. He also loves to mow the lawn, we have 3 acres, where he can have his one-on-one time with God. He loves to play his games on the computer, plus he researches things on the computer, as well. He keeps busy working on the house and is always looking for excuses to go on a road trip. He is working part-time and making new friendships that way as well, he is retired.

• Keep your spirts up and stay emotionally well-balanced. If you need help with this, be sure to get it! This is important for you and your family, just as it is important that your Fibro person do the same.

• Spend time together doing things you both like so that your relationship stays strong. You don’t always have to be a caregiver, but friends, a couple, whatever. You can go out to eat, see a movie or take a drive. Just as long as you are doing something you both enjoy together, that is what is important.

• Remember, you were friends, a couple or whatever first and that should always be worked on together by both of you to stay strong through all of this for it to work.

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.

• A compromised Central Nervous System that has malfunctioning fright or flight response which is in the Sympathetic Nervous System. The switch is stuck in the on position, which means that our bodies are constantly in the alarm state of functioning and never in the relaxed, status quo, all is well state. Therefore, the hormones that the body makes during the danger cycle are constantly being made and not allowing other hormones to be made. This then, in turn, causes us to have  hormone imbalances which throws our whole body out of control. Sometimes, this will take a short time and sometimes it will happen quickly. Once the body has a compromised nervous system, it only makes sense that the other nervous systems will come into play at some point in time since they are all interrelated. I do not believe there is research to back up my statement.
  
  
• Our Adrenal Glands start to become fatigued at some time in the process, causing us to become even sicker. Our attitude plays a large part here.
  
  
• It is not an auto-immune disease, although there are some who say it might be. It sure acts like one. It does like to hang around with auto-immune diseases however.
  
  
• A person develops myofascial pain syndrome with this because it tends to affect the muscles and they are wrapped and intertwined with myofascia. I will explain this later as well.
  
  
• It starts out feeling like the flu, but if it lasts for more than 3 months then it needs to be investigated more intensely. It is intense pain like a person has never felt before, complete and utter exhaustion, brain fog, insomnia, confusion, memory loss, loss of concentration, loss of stamina, loss of sex drive, difficulty having sex, sensitivity to touch, and over sensitivity of all of the senses. This is because chemicals change in two different sections in our brain. The feeling of bugs crawling on one and intense itching everywhere. Plus a whole lot more…..
  
  
• It seems to affect more women than men, but that ratio is starting to change.
  
  
• It does happen to children and teens as well. Although, they have a harder time getting diagnosed and treated.
  
  
• It affects 2-5% of people in the USA alone, although that number is probably higher because that number does not include children, teens, the misdiagnosed, or the under-diagnosed. The number can reach up to 20 million worldwide. We are not alone.
  
  
• Many of the military returning home with PTSD are being diagnosed with Fibromyalgia.
  
  
• It mimics many other diseases, so they must be ruled out before this diagnosis is given.
  
  
• A person will often already have an auto-immune disease like thyroid disease or Diabetes 2 before they develop Fibromyalgia, or they will develop one shortly afterwards. Fibromyalgia is seldom a stand-alone illness.
  
  
• Abuse past or present may be a factor in the development of this syndrome.
  
  
• Many people with Fibromyalgia will develop Celiac Disease or an intolerance to Gluten.
  
  
• We start to become malnourished and can develop leaky gut syndrome.
  
  
• We have compromised immune systems.
  
  
• The list continues.

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.