• Lyme Lens

Remember Your Manners...


I think that as Chronically Sick people we tend to take for granted those around us who always stick by our sides and provide our daily care 24/7. For me, that happens to be a woman who is 72 years old who has sacrificed her golden years to be at my beck and call whenever I need anything from my bed in my room. You see, if you have never read anything about me, I have Chronic Lyme Disease with POTS, a heart condition that makes my heart race if I try to stand up or do any physical exertion whatsoever. It is a dysfunction of my autonomic nervous system caused by either trauma, a surgery, an emotional crisis of great severity or a virus etc. In my case, the Lyme brought on the POTS (postural orthostatic tachycardia syndrom


I had been doing well with the Lyme for the past three years and was even off ALL antibiotics for all of this time. It really seemed like I was in remission and simply managing the side effects of what the disease had done to my body over all of the untreated years, the fast heart rate, the arthritis in the knees etc. Well, I got horrible results back from my IGeneX Lab Western Blot so we now know that I remain in full blown Chronic Lyme Disease with numbers worse than ever before! That was very discouraging to find out.


Then to be trapped in bed for the past seven years with the past two being the most critical due to the tachycardia (fast heart rate) has been very limiting. I even tried to sit in the living room on Christmas morning 2018 just to open presents with my Mother for a while and to eat our traditional cinammon rolls on Christmas morning and after two hours I had to excuse myself and go back to bed because my heart rate had climbed to 171 just sitting there and I was sweating, weak, nauseous, dizzy, my heart was pounding in my chest and I was beginning to get short of breath. I couldn't even make it through a few hours with my most precious family member on the most important day of the year to make her happy. The POTS won again.


As I started at the beginning of this post, we take for granted that the people who take care of us at home will always be there to fill our drink cups, bring us the correct food for our specialized diets, run to the pharmacy to pick up our meds, do our laundry, clean our living space no matter how small, maybe even wash us up!!! They field our phone calls when we are sleeping, chauffer us to appointments, manage our schedules around theirs so we come first, they cancel time with their friends if we need to be somewhere but most of all, they simply keep us company when no one else is there to cry with us, listen to our fears, rejoice in our successes and worry about us when they are not by our sides.


Any of these caregivers could be related to you by blood or not, it doesn't matter. For some reason a bond has been built between the two of you that made this person decide when you got sick that this was a challenge that was their calling to take on and they are willingly there to care for you in your time of need. However, this remains an enormous sacrifice on their part and it is our jobs to never forget what these people are giving up to take care of us.


I am not saying that you have to bow down before these caregivers and kiss their feet because, afterall, they did have a choice in being where they are taking care of you. You don't have to feel indebted to them for the rest of your life and like they are better than you. This is not to make you feel lesser than them. This note is to open your eyes to make you see that your sickness is not always about JUST YOU. It also affects a circle of people around you, most of all the direct person who cares for you, the primary caregiver in the home.


So, let's all try to remember that no matter how much pain we are in, no matter how tired, how long our day was or how much we have on our minds....our caregivers are carrying that and so much more. They may not be suffering with the disease itself, or feel the acute pain and suffering that we do but they suffer in other ways. They worry, they feel the exhaustion, the pain of working day and sometimes through the night too if you are having a particularly bad stretch in your illness and most of all....they worry.


They live with the constant concern that they will do something wrong in caring for you or that you will just be gone one morning when they open your bedroom door. They fear that one day your heart will just start beating so fast that your medicine will NOT slow it down and you will be calling an ambulance and rushing to the hospital hoping to stop the irregularity before it kills you. They live in fear that they will have to do CPR if you ever drop in front of them. They also just feel sorrow for you.


They see a person whom they knew as a child with pigtails who ran freely with her brothers, a body strong, free to run and play without pain or limitations on her movement. A teenager who was a skater, had friends, good grades, a normal life of part time jobs, school and looking forward to college. Then a young woman with a husband, the beginnings of a career, then a home, further education, success in medicine, financial stability and a new life in sunny Florida. Everything was right on track for a beautiful life.


It all came crashing to the ground and the caretaker watched it all happen, helplessly. So, my words of wisdom today for all of you out there who are suffering from Chronic Illness and have been for a long time, take a good look at your caregiver today when they don't know you are watching them. Really LOOK at them. Think back over however many months to years this person has taken care of you during your illness and everything they have done for you and sacrificed of themselves. If your memory is bad, make a list. Then when you have some quiet time, ask them to sit down with you, read them the list or tell them all the things that you thought about and how grateful you are that they have given so much of themselves to be there just for you in your time of need.


When you have this discussion, it should be just the two of you. No kids in the room, no pets disrupting things by jumping all over you, no phones ringing, close your bedroom door and look him/her in the eye. Mean what you say or don't have this discussion at all. If you do not have a caretaker that you can say this to then I am very sorry that you are in that situation and I will have to do a post on getting proper care from outside sources (in the future) but this message is for if you have a caring caretaker in the home, specifically.


This is when you take the time to show them the appreciation that they deserve. Tell them how much you appreciate all that they do. Tell them you notice the small things like they always remember to bring you a napkin when they bring you dinner in your bed, or if you fall asleep early at night you might wake up at 1am and find that all of your bedside glasses have been refilled with their beverages, your room is straightened and the lights are dimmed. You never heard a thing as the Dream Fairy twittered around your room doing her nightly chores before she even had the chance to pick up the rest of the house, tend to the dog and lastly put herself to bed. Only to get up and start it all over again tomorrow.


One would think, who in their right mind would sign up for a job like this? On call basically 24/7, taking care of a bedridden, 48 year old woman who cannot stand up without passing out. A woman who could basically have her heart do just about anything at any moment and you are responsible for reacting appropriately in that situation when you now have a stronger bond to this person than you ever did before. Why would anyone want to spend SEVEN YEARS of their lives caring for a woman who may or may not EVER get better and you may be stuck taking care of her for eternity. Some do it for the money. Some do it because they don't want to keep their own apartment so they are nurses who just "live-in" at a person's house and provide them care 24/7 until they move on to their next job so it is simply a way of life. It is all personal choice.


In my case it is much easier to explain. The person who takes care of me is MY MOTHER.


I have been blessed in my life to have a mother who not only is a caring mother and friend but she is also a nurse, a caregiver and now my roommate and co-homeowner. Our lives are completely entwined and I couldn't be happier. No, it is not all "wine and roses" as they say but we work on our differences and try to find a way to make it work. Now go back and re-read this note now that you know the person in this story is my 72 year old mother. The story takes on a much deeper significance than if I was just talking about a hired help doesn't it? Well, I am here to tell you that it shouldn't.


ANY PERSON who gives that much of themselves to dedicate their emotion, their time, talents, care, kindness and physical strength to take care of you deserves every bit of your gratitude whether they are your beloved mother or a complete stranger. Never forget that as you go through your convalesence. Try to always say please and thank you, ask nicely for things instead of barking orders, apologize if you know that you are wrong and try to remember that the world does NOT revolve around you. Sometimes, these caregivers need to get the hell away from you and the sick house. Encourage them to get out!!! A caregiver who is rested and has been out to enjoy themselves, spend some time with their friends, or getting pampered will return to you in a much better mood, far more rested and ready to jump back into their job willingly. No one can keep pushing without a break or else resentment takes over.


So, this is a message of reflection. Think back to when you maybe took care of a sick friend for a weekend. You stayed up for 48 hours getting your friend through the worst of the flu and when you got home you were bone tired, you felt filthy like there was bacteria all over you so you just wanted a long hot shower, you are starving, you have to pee and you want your bed so badly that you just flop onto the couch and are asleep in seconds. Now imagine taking care of someone like that for SEVEN YEARS. Could you do it??? It takes incredible people to be caretakers and they deserve to know how wonderful they are and how much we appreciate them.


Tell your caregiver TODAY how much they mean to you and that you appreciate everything they do for you. Mention some examples of the little things they do that make your life better so they know that you are paying attention to their actions and make sure that it is just the two of you with no distractions when you have this meaningful conversation. Only have this discussion if you truly feel this way about your caregiver because a lie will be seen all over your face. If you are not in a good caregiver -- patient situation, I will do a post soon about how to hire outside help to take care of you, some even for free.


Make sure that your caregiver knows that you just wanted them to know that they are not taken for granted. Then, change your daily behaviors to include being a little kinder to them by including please and thank you as regular words in your vocabularly. After you have implemented that in your new treatment of your caregiver, move on to asking for things in a nicer fashion such as, "The next time you get up, could I possibly have some more water please?" See? That was nicer than, "I need some more water." That wasn't a difficult change to make but it is just a habit that you have to break.


Making these little changes will show your caregiver how much they are appreciated and it will bring some harmony to the household too. You may find that it strengthens your relationship and that the caregiver also takes on some behaviors that are kinder to you as well. Everyone deserves to be appreciated when they do a job, a service or something nice for someone else. Why don't you try being the one who brings a little sunshine into their day today and thank them for being the wonderful people that they are and tell them how much they mean to you. They will appreciate hearing it and you will feel good knowing that you have conveyed an important message to someone who makes your entire world exist on a day-to-day basis.


Have a great day my Lymies and to all of those beloved caretakers out there, especially to my Mom........please see below!!



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