Living a life with (HOPE) and chronic pain, autoimmune disease, fibromyalgia, chronic fatigue, or any other invisible disease means you have to learn to make adjustments because things change. It’s not as obvious to others because you can’t see the illness physically but boy do YOU feel it and eventually people will notice the change as it begins to wreck havoc in your world and then they will tell you “You don’t look sick” which adds more to your frustrations. See in the beginning you don’t realize you’ve got to do this whole “adjustment” thing in you life, you think “I’ve got this.” A little Tylenol, quick power nap, keep truckin…..HAA! D-E-N-I-A-L, we can be good at that, can’t we?
It’s only natural because we don’t want to accept what happening and make any changes and so you try and keep doing what you’ve always done, sometimes even to the point that it’s harmful to youself. Its hard facing you are not able to do what you were able to do before the pain came or the disease set in. So you say “yes” to things and sometimes you are not able to follow through with them and sometimes you are, it really just depends on the day which can be confusing to those around you.
Then other times you say yes out of guilt and do it anyways knowing you will pay for it later but it’s something you really want to do because now you’re learning to live with chronic pain/autoimmune disease and with that you’ve also learned there’s a cost. I’ve figured it out now, years later I have to make choices. I can do this, this or this but I can’t do it all. I don’t like that! Actually I HATE IT! Making those choices makes me angry and often it comes with guilt because I want to do it all but I’m learning I just can’t! Maybe you’re learning that too. Learning to listen my body is a must but hasn’t always been my strong suit.
3 John 1:2 Beloved, I pray that all may go well with you and that you may be in good health, as it goes well with your soul.
1 Corinthians 6:19 Do you not know that your body is a temple of the Holy Spirit who is within you, whom you have [received as a gift] from God, and that you are not your own [property]?
At this point ours bodies have had enough and that realization kicks in and it says NOW will you listen???? Some people take the hint, still others are bullheaded. Some have falling into the people pleasing category which is a dangerous place especially for someone who has chronic health issues. The last thing you want to do is disappoint your family, your friends, your church, or your work place. You’ve tried to keep up the same pace, you keep trying to do the same thing as usual, mom, wife, the house, the kids, homework, your job, your spouse, let’s be honest just get out of bed.
You try to keep family and friends thinking everything is still the same but on the inside you know you can’t keep doing it but you’ve done it for so long. How does it stop? It MUST stop! You’ve had to be so strong…..for everyone but now you’re physically exhausted and the disease, the pain, well it has overtaken but you’ve continued with your smile and hiding your physical and/or emotional pain. Because emotional pain also comes along for the ride.
Realizing the mask isn’t so great or so pretty any more and it seems much heavier and it gets much harder and harder to put on. See I think one of the things that happens is we get caught up in other people’s expectations of how we “should be”, or maybe how “we use to be” or how “they want you to be” or even things “they” want to do or not to do. This is misplaced expectation and causes us more stress, frustration and added pain and suffering.
Over the last few years one of the greatest and most freeing things I think I’ve learned is that despite what I thought “I’m NOT a mind reader!!” So if you don’t tell me how you feel or what you’re thinking I don’t know and vice versa. I use to think because I had these problems my husband should KNOW I was struggling and he should know how to take care of me and what to do.
The truth is I had gotten so good at hiding that I’m hurting, that if I really do show it or if I ever cried then ITS REALLY BAD, so how is anyone to know what to do to help unless you tell them??? God is the only mind reader I know. I don’t always get this right but I’m better than I use to be.
Recently we went down to an Auburn football game, which of course is a big deal in our family because we go early so we can see our daughter, she’s a majorette there. We love to do all tailgating, pep rally, Tiger walk, Spirit March, Four corners, march in, before the game, add in the drive down and that makes for a really really long day. Its so much fun don’t get me wrong and I love it but it’s also really tough on me. I don’t say this to get pity so please don’t think that.
Anyways back to my story Auburn football and all the pre fun stuff involves quite a bit of walking/driving and it can be a bit much when you have back trouble, pudendal nerve probs, bursitis in both hips, and a torn hip labrum BUT to “watch me” (watch me whip, watch me name nae😂) most of the time you’d never know, on the inside I might be crying but on the outside… I’m rock solid baby!! I always try my hardest to keep up with the fam lol🏃🏼🏃🏼 but sometimes the hubs can be a little impatient and he was the other day. SOOO that’s when he got “The Look” 👀 See it’s times like these unless you’ve been there you have no idea what it’s like, and it was a really high pain day. If you have never had back pack, knee pain, neck or hip pain, or been sick with flu or anything else then you are blessed!! But if you have, now think abt that hip pain, back pain, myofacial pain, Fibro, whatever it is imagine it NEVER LEAVING! That’s chronic pain, that’s autoimmune disease. So yea, being just a little more thoughtful, caring and considerate, or in this case PATIENT would have gone a long way with me.
Another example, I was going some where with someone but quite honestly I was dreading it because I was in pain already and I knew it was going to cause a great deal more pain and this person snapped at me and said “Well I’m sorry you have to do such and such!!” Insert “The Look” 👀 again!! Lol😂 Yea see again that’s not the right response here. Unless you’ve been there you don’t know what it’s like, I’m trying to do the best I can but your words are heaping judgement on me now. Now we are back to me not meeting your expectations again. See how it all intertwines? We gotta break free from some stuff!!
Breaking free from people pleasing and overcoming unreasonable expectations people place on you or even your own. This is where a lot of self care comes in. We have to learn to express our feelings in a healthy way, journaling is great way to get started. Setting boundaries is very good, if you are not good at this there is an excellent book by Dr Henry Cloud called “Boundaries”….GET IT!
To enjoy a healthy you and healthy relationships we have to remove the mask. The mask hinders our intimacy with God and others. Being vulnerable is something I’m really trying to work on. I think it’s natural to try and hide our weaknesses or pretend they are not there. “Most of the time I’m rock solid!” As we admit our limitations and where our capabilities end we can trust God.
His word says is 2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
Next is to learn the “The Look” 👀 just kidding, we all need some humor. If you’re a woman you already know it. If your a man…..You’ve seen, lol.
As if someone’s expectations, and our guilt wasn’t enough now our thoughts have come crashing in and now we wonder will our lives ever be normal again?
Will I ever be able to just get up and go?
Will I have to take medicine forever?
Will I have to have surgery again?
Will I have to ice, use INF unit, use foam roller, heat, oils, therapy exercises just to move every day?
Will I be able to sit in the floor and play with my grandchildren?
How will I feel 5, 10, 15, 20 years from now?
Am I disappointing my husband?
Does he still find me attractive?
Did I disappoint the kids?
Or disappoint my family because I haven’t been to visit?
I’m sure you see where this is going and if you’re not careful it can lead to depression and it does often. I think it’s good to grieve the loss of what you were as long as you don’t get stuck there. Don’t pitch your tent there! This maybe where you are today BUT we serve a God of SUDDENLIES and things can change in an instant. We have to be renewing our mind always because with daily pain and sickness that is extremely hard on a person in every way. While we may “feel” at the time “things have been this way 2 months or 5 yrs, 10 yrs” or ” I’ve had this pain and sickness now for 20 yrs, it’s never gonna get better.” The mind is the battlefield!! All these feelings I’ve just shared, I’ve felt at some point or feel but if all we do is go by how we “feel” that will be a crazzzzy roller coaster of life.
So why not try something different….. BE EXPECTANT for God to move and bring healing and restoration to your life! Be actively, expectantly pressing into God waiting for him to answer you. Have FAITH and HOPE that Breakthrough is coming, healing is coming!!!
We all have those days, those moments things look dark, they look like they aren’t going to change, I totally understand that. So you can put your little tent up for a little bit but you sure don’t want to pitch in the “PIT” and camp there forever and live in a constant negative state always saying “things will never change” “I’m never going to get any better”. NO!!! You were made for more precious one!
At some point we have to learn to be kind to ourselves, cut ourselves some slack. You would do it for someone else if they were sick but we expect so much from ourselves. Constant pain and sickness can be overwhelming, it can make you sad, angry, feel hopeless, and stuck. But you are not your pain and your pain does not define you. We have to learn to separate the two. The flares or storms of life come and go but we need to remember “Weeping my endure for the night but joy comes in the morning.” You are an OVERCOMER!
Now it’s crucial for you to begin taking care of yourselves, there is only one YOU!! You may not know it but you do have purpose and God has a plan for your life. Beside having a positive attitude there are many things we can do to make our situation better. Some of these diseases are aggravated by the foods you eat so if your eating a lot of processed junk, try eating a healthier. More lean proteins, fruits and veggies. Some people have food allergies or sensitivities, if you think that might be you get yourself tested and find out, it makes an incredible difference. I have Celiacs and going gluten free made an amazing difference in my life.
Most people in the US are not eating a balanced diet which can lead to vitamin deficiencies of some kind, so supplementing is a great idea. Interesting tidbit…..For every molecule of sugar we eat our bodies use 54 molecules of magnesium to be able to process it. Therefore consuming sugar-laden soda depletes our body of this necessary nutrient. There are approximately 39 grams of sugar in one 12 ounce can of sweetened cola. I love Dr. Pepper too but I bring up this point because if you already have healthy issues, supplementing might be of more importance to you. Fibro patients tend to benefit from magnesium.
Sleep is so important because it helps in the restoration and repair process of our bodies. A large number of chronic pain/autoimmune patients suffer from insomnia which plays a role in your emotional state, immune system, can raise your blood pressure, and worsen chronic pain. So yea we’ve gotta really work to figure that one out too.
EXERCISE!!!! Yep the dreaded word!! You gotta keep moving as much as you can. Find something you like, I know it’s hard but explore there is a lot of new fun things you could try. I love water areobics, it’s really does help with pain. You should give it a try, added benefit is you will burn twice as many calories in the water than on land becus of resistance. Score!🙌🏻
In closing I believe in God and His healing power, sometimes I think he allows us to go through difficult things to show us our need for Him, to draw us closer to Him or even to help bring a refining to us or in us. Whatever the reason His Word assures me that what the devil meant for harm He will work for my good, ALL THINGS NOT some but ALL work for my good and that He loves me and He is with me and will never leave me. That’s for you to my friend, wherever you find yourself as your reading this. Maybe your dealing with the same thing as me, or maybe a family member, or maybe something totally different all together but the good news is that NO MATTER WHAT God is still with you and HE LOVES YOU!! So I guess by sharing all this my hope is that you will maybe grow in understanding and awareness and if this is your struggle, accept where your at, accept yourself along this journey, even accept the limitations but don’t let it define you. Remember don’t pitch your tent there. You were made for more, so don’t give up and don’t stop believing! Breakthrough and healing is coming.
Jeremiah 31:3 I’ve never quit loving you and never will. Expect love, love, and more love❤️
Much love and blessings,