I will tend to repeat myself on subjects I’m really passionate about . Get ready, this is one of them. Since most chronic illnesses are invisible it leads many to doubt that you are truly ill. Those who are closet to you will tend to be your biggest doubters. When we push with all we have we just can’t be sick. When we have to lay in bed majority of the day because we didn’t sleep that night or aren’t feeling well, we are lazy and MUST get up and move around to feel better. I’ve always said that it shouldn’t take us being in a hospital with IV’s to know when we are completely down. We are fighters, we literally fight to exist everyday. Don’t try to guilt trip your love ones by telling them how they should feel, or how they should act with something you never experienced. Give them all the love, care, and encouragement that you have. This is fuel to our difficult battle. Remember we are always dancing in hurricanes trying to pretend it’s sunny and bright.

Remember when we used to just hang out? Remember when we loved to window shop?Remember when we would hit a great restaurant without reservations? Remember when we would hit the road for a roadtrip just because? Remember our long walks laughing about nothing?

I remember too. My body may have forgotten but my heart never will. I’m still here..

One of the things I’m passionate about is empathy. People miss the true feelings of empathy. It is to feel what someone else feels or try to imagine what it’s like. I get exhausted painting pictures of what my chronic illness is like and how it affects me. When you’re constantly told that what you feel is in your head, or if you move more you will feel better,  you wish there was a real “freaky Friday experience you could put them through. Family is the worst,especially when they have been used to you handling life differently and now adjustments have to be made. Sometimes I have to keep my distance for my peace of mind. Breathe, keep doing the best you can. There is likely no end to the lack of empathy in sight but take whatever measures you can for your joy.

Insomnia is my new super power. The ability to not sleep through the night and pretend to function the next day. Part of the chronic illness involves insomnia which can also lead to deep depression. I’ve tried a few things but have been unsuccessful finding my sleep. I know it’s out there waiting for me. I have to stay positive and keep binge watching my favorite shows for relief. Patience is a great virtue when dealing chronic illness. Nothing is solved quickly. It’s ok though rainbows come after the worse storms.

I read a testimonial today that bought me to tears. A young woman fighting a numerous chronic illnesses to the point of being bedridden. We fight really hard to not to have pity parties on a regular basis. Life is hard, life with a chronic illness is almost impossible but done. We are taken for granted daily, doubted hourly, and misunderstood. Yet we smile, love, and encourage others to keep fighting forward when we don’t know if we have any fight left in us. Big air bear hugs going out to all fighting the unknown and the unwelcome. You are never alone in this journey.

With chronic illness sometimes good days are few are far in between.  Recently I’ve been fortunate to have a few good days. The excitement that comes with them is rather comical. I want to do a lot but I’m scared to do too much. Pacing myself continues to be a constant issue. The barometer changes constantly, ironically out of sheer excitement I always do too much. Most of the time it’s worth all the consequences that follow. Good days give that brief glimpse of what used to be and the hope of still what may be. Nevertheless I cherish every moment that gives me great optimism.

Most believe when you deal with chronic pain summer time is your best time for a few reasons. Speaking from experience this couldn’t be more wrong. Our bodies are just as sensitive to heat, sometimes more so. I live in a state with high humidity so it’s already scorching. My pain has somewhat increased with the higher temperatures. I can go from my front door to my car door and already have sweat dripping. Chronic pain is year round unfortunately so it’s best to keep cool and collected during these hot months ahead. Yes, you will definitely find me in the comfort of my air conditioning trying to beat the heat.

Life with chronic pain is give and take. You give, it takes. This past weekend I attended a three day spiritual seminar. My body definitely took all that it could and more. Just as I was about to feel defeated I ran into the picture above. I was held together with gold the entire weekend. The loving support from my family, the attendants in the infirm seating section, and newly met friends who offered words of beautiful encouragement. Although very tired I felt so accomplished. I felt like chronic superwoman lives to fight another day. There are few victories to celebrate with chronic illness , so when one comes along cherish it. Know that your goldeness is showing even when you can see it.

Since goal digging sounds strenuous for a chronic illness warrior ,I thought having a spirit of goal setting would be appropriate. I never knew setting goals would present such a challenge. With circumstances constantly changing I realized my goals had to evolve as well. I like to start the day off with small goals of getting out of bed, taking a shower, planning a meal. You’d be surprised how much forethought goes into these daily task. When I check something off I list I feel so accomplished, if I do extra things I’m overjoyed! Setting daily goals keeps me focused on the positive aspects of my day, regardless of if I have a tough day or not I’m assured that I can start fresh tomorrow. What are some of your favorite goals?

One thing I’ve learned through this process is that chronic illness doesn’t discriminate. When I have conversations with people about my pain and symptoms they always tell me, ” you’re too young for that”. No actually I’m not. If children can get cancer at a young age chronic illness is no different to its host. Young active people like myself seem to be in the majority for chronic illnesses. Having lead a busy physically active lifestyle, contracting a chronic illness is very difficult to mentally and emotionally handle. It feels like you have aged 30 years by the body with multiple aches and pains. The next time you hear a young person say they hurt, know that it’s their reality regardless of how old they are. Show them the same considerations you would for a 60,70, or 80 year old. Their struggle is REAL!