I wanted to briefly touch on this by sharing a personal experience of mine from just two days ago. For those of you that know me, well you know that I love and crave the outdoors as often as my health will allow it. I decided on a favorite spot of mine to hike; I made it to the picturesque view that I was longing to soak in fine, it was the getting back up to the car that became the intense struggle.
Every single step I began to take was a challenge more than usual. My feet felt like total fire from the pounding neuropathy that was hitting, shin splints, spinal nerve pain that had been tolerable was full force, dizziness, then the lungs started feeling the fullness/inflammation, it became hard to even take in a shallow breath at this point. (the list of symptoms could go on and on, but I will spare you from that part ha!) I am not panicking because the last three years I KNOW what pushing through, staying active and fighting this disease in details.
As I am in my struggle an older couple breezed right by me, a young man jogged passed me twice on this adventure, other people going about their day and here I was struggling with every ounce of my being at snail pace at this point. Here the thoughts start . . . (A little something like this) “this stinks so bad”, “why do I have to deal with this every single day of my life”, “I remember when I would jog around like that with no problem”, “look at that couple they have 20+ years on me, and they are making this climb with no issues”.
You get the picture the list could go on and on with the negative thoughts that I began thinking. All of the sudden I realized that I was more focused on what everyone else was doing around me than myself. I decided to zone out the people passing me and start focusing on my breathing and prayed to God to help give me the strength once again. I think we all can lose that perspective in life when we start focusing on others strengths and comparing them to our weaknesses. Big mistake in my opinion!
There will always be someone faster, stronger, healthier, younger, blah blah blah, so why compare yourself. Set your pace and take your steps even if they are five steps to someone else's fifty. I encourage everyone to try not to lose focus on your journey, your path. Embrace you and your current situation whatever glorious mess that might be.
God bless you all and thank you as always for taking the time to read some of my most intimate thoughts.
Working through guilt is a great topic to discuss I believe for a chronic illness sufferer. I have always wanted to make others happy . . . I don’t like to use the term “people pleaser”, but I mean your family and friends you want to make them feel special, important and top priority with you. I also like to be a person that keeps her word at all times. If I tell you, I am going to do something I want to do it/follow through no matter what. Well, dealing with an autoimmune disease and chronic pain will put a damper on this area of your life unfortunately too. So, this is something I am learning to do is try my best not to feel guilty. I don’t want to think I have disappointed or let someone down, but to have those feelings of guilt can take a toll on you and seriously could in itself trigger a Lupus flare-up.
My advice to a sufferer would be this:
Do the best you can do each and every day, pencil in activities and events and do your best to follow through/attend and worst case if you have to cancel then so be it. Always remember you have to take care of YOU before you can take care of anything or anyone else. The hardest part for me has been putting me and my health needs above other things . . . . . At first, it will feel selfish to a person that never does this, but then you will quickly realize that it is essential to your health and to maintain somewhat control over this disease.
My advice to a family member or friend of a sufferer:
Please educate yourself on the disease that they have whatever it might be, don’t judge, have patience and understanding. To be made to feel guilty about canceling or taking a break is not the right approach, trust me NO ONE is EVER more upset/disappointed with the situation than the sufferer, so my advice would be - do not add to that guilt they are already battling daily within.
God Bless You All and Thanks For Taking The Time To Read,
Okay, so the picture is a little harsh that I posted with this Blog post (at the bottom of the page), but I think it gets the important point across. Haha! :-)
What is the old saying, “Don’t judge a book by its cover”? Well, it is true with most autoimmune diseases too, they are often called invisible diseases. Therefore, the average person maybe tends to discredit the debilitating and painful issues that we can go through. I think our minds conceive an “issue” if you can see it – for instance, a wheelchair, a cast, a cane something that is visible and obvious. When in fact, some of the most horrendous days I have had no one would even from the outside looking at me possibly know it. I have even had people state to me “Oh you look great, so you are all better?” I just smile and say “I am having a decent day” – but they don’t know it might have taken me 4 hours to get ready because I could barely stand up in the shower or I have to take breaks in between drying my hair or putting on my makeup. I know there are very visible signs that can occur (shingles, migraines with eye swelling, inflammation, arthritis, hair loss, weight loss/weight gain, etc.) but the invisible ones are just as horrific. You can’t see with Lupus SLE that there can be organ involvement (brain, heart, lungs, kidneys, liver, etc.) going on that can be life threatening at times during a flare-up and these certain areas are being attacked.
I guess the main thing I wanted to touch briefly on is: Don’t ever underestimate because you can’t SEE something wrong, that things are fine with someone. Get to know them, get to know autoimmune diseases and educate yourself. I am sure there is someone that you know of personally that struggles with things that no one sees, but trust me it is very REAL in their daily life. Most sufferers are not looking for your pity; just a little understanding would be awesome :-)
Thanks for reading,
I know it is hard to believe when we are at our lowest that we could be utilized to help others.
The above statement is soooooooooo true, right? I am not going to deny that this disease can make you feel like your life is over, there is no meaning to it and can even make you doubt your purpose/existence at times. I mean seriously how could I help someone else out when on a bad flare day I can’t even take care of myself. Trust me; you are not alone in this thinking. I would encourage you to look past the negativity which I know can be a lot, but fight every day to see something positive. No matter how small and then you will quickly start to realize there is, in fact, more positive left in your life than what you realize.
Once I finally picked up the nerve and chose to make my disease so public it has been very positive and empowering for me. To be such a private person when it comes to my health, this was a challenge, in the beginning, to talk about it. I think we all have to deal with the diagnosis (let it “marinate”/soak in as I would say), decide for ourselves and then it is our story to tell when we are ready. I think the common concern I hear repeatedly echoed is “what will people think?” or “what if I’m treated differently?” Well, Sorry for the bluntness, but a little honesty newsflash – who cares what people think and yes they probably will. The ones in your life that love you want to understand your medical condition and want to be there for you will be the ones that “get it.”
I sadly, hear from others that don’t have that at home family support and honestly that is an area that I can’t blog about because I have had nothing but amazing support and understanding from my husband and three children. My prayers go out to anyone that does not have a support system. You don't need a big one, you just need one :-)
Thanks for reading my 1st post - I can't wait to blog more things in the near future. Please reach out to me should you need to vent, scream, cry, have questions or a prayer request. I want to be there for anyone that needs to know someone cares . . . . . I CARE!
* A very honest and transparent perspective on life from Teresa White (Wife/Mother/ Keller Williams Realtor since 2006/Sweet South Organics Company Owner/Autoimmune Disease Warrior).