Today, I feel totally drained today. No energy and waves of nausea. I have been drinking apple ginger water all morning. Got to get myself together. So much housework to do and no strength. God help me!
Caregiver Tip 2
Posted on January 25, 2015 at 5:34 pm
Sarcoidosis can be a very isolating and extremely lonely disease. Even when we are surrounded by people who love us we can feel so alone and it hurts. When your friend or family member has sarcoidosis there are a wide variety of ways that it can affect them. It diffidently affects our physical bodies and can be crippling and very painful which limits our ability do do all the things we have done in the past and still desperately want to do. Mentally it can cause memory loss and a since of confusion which is frustrating and leads to a loss of confidence in ourselves. Then there is the emotional aspect of Sarcoidosis, this can entail a wide array of issues and a lot of the medication we take can increase these 10 fold.
This is where my tip of the day comes in. There is no way for you to fully understand and know how it is to feel the way that we do unless you have this disease. You can however validate what your friend or family member is going through. It is important for you to validate how they feel physically , mentally as well as emotionally. By doing so you show not only your support but also that you truly care what is happening. It is much easier said than done that you will support someone with a chronic illness such as Sarcoidosis. It can take a toll on you as well as it progresses and new changes and health issues arise. It may get tiring to see and hear about the pain and frustration your loved one is going through but that is when it is most important to validate and show understanding. If you are tired of seeing and hearing about it stop and think of how they must feel living with it.
So often what we are going through and feeling goes dismissed and unheard by even busy medical professional that may or may not even know what this disease is capable of. The general public in our own communities know nothing about it and have never even heard of it. This leave a great sense of despair and frustration and leave the burden of validating what we go through on a daily basis on our friends and family. Fair? maybe not but that is the truth about this disease, it does not even know the word fair. I hope that you understand how important you are in your loved one’s life and in helping, supporting and caring for them. Validating what is going on with them and letting them know it is okay to be feeling the way they do plays a big role in that support and in the outcome of our battle.