Hello my Butterflies,
o glad you are back to see me today. I hope and pray each episode adds value and joy to your life. Please don’t forget to like and share this episode with anyone connected with your chronic pain journey. No matter if it’s a caregiver or a warrior. Also, if you will please leave a review of any or all of my episodes. This will help me know what kind of shows your want to hear.
Disclaimer: before we get started i do need to state that I am a current warrior with chronic pain due to fibro and I am in no way a medical professional by license. I am not advising you to change any current or future treatment plans you may be on. I advise you to consult your own medical team before trying or making any changes to your current or future treatments.
So go grab you something to sip on and let’s get into this topic today.
When thinking about chronic pain or invisible illness you have to factor in so many other factors that most people in the illness or disabled world may not have to. Considering we look fine and from all outside accounts, all is well with us. To the person looking in who may have a plan with you that day or have some sort of expectation of you. To hear you say that you need to change the plan. Looking at you and wonder why? What’s the deal? You would say well I just don’t feel well… Which in our languages means “right now I’m seeing three of you and have a searing popping sound happening in my ears. Which means improbably about to faint or need to sit down ten seconds ago.” they look at you and you have simile on your face you happen to be wearing clean clothes that day and look presentable. For you, this is not a huge deal as long as you respect your body and do what it needs you to do. However, for the cancelie( the person being canceled on) they may feel slightly frustrated or maybe even mad or upset. Perhaps because you’ve canceled on them a number of times. They have no idea what physical stress this adds to your already stressed and tired body knowing that you have disappointed them once again. However, you know that you saved yourself and them a ton of embarrassment by not pushing yourself. This would have caused some sort of sense when you had an episode or something all in public. Now no one likes that.
So taking that into account when you have a chronic or invisible illness you are well served to have a backup plan for when things change. Because they certainly will change. Our health changes are faster than the weather in the deep south.
Allow yourself to feel you are going to have emotions unless, of course, you are a robot then, in that case, you’ll be fine… You can just stop listening now. The rest of this show is not for you. Lol
With today’s lifestyle of over-scheduling, most people don’t take time to mourn what they’re losing before moving into something new. Numbing feelings of sadness with new distractions, give your thoughts a voice. Write in a journal, talk with a trusted friend or make an appointment with a therapist. You might even consider honoring the loss with a scrapbook, quilt, poem, or painting.
Be patient with the pace of treatment and recovery. This means recovery means something different to every person. Most people sadly take years to get diagnosed so it’s not hard to imagine that after the diagnosis finding the right treatment that works for you can take a while.
Be open to change. …
Choose the support that’s right for you
The best treatment for chronic pain is a multimodal therapy plan that could include intervention from a physical therapist, pain psychologist, complementary alternative medicine (i.e. acupuncture) and self-management techniques (such as changes to the diet and exercises regimes) to help you not only manage your pain
don’t let worries about being a burden keep you from reaching out. …
We often fear being perceived as needy and no one wants to feel ashamed of their situation or appear incompetent. you may feel uncomfortable about asking for help from others because of your chronic illness, remember you didn’t ask for your condition. Accept that sometimes it will be annoying to help you. Offer to help those who help you. Communicate during neutral times. relationships are a give and take. One person may be more equipped to do certain things, like cleaning and running errands, while the other may be better at other things like providing emotional support or advice.
Look for support from friends and loved ones who are good listeners.
Plan ahead.
If you know change is on the horizon, do some prep work. This may require some extra work and using some spoons but it’s well worth it in the end.
Reframe your thinking.
Changing the way you think is a task that in some cases may need some additional help. This is where a counselor or a mental health professional may come in handy. A neutral third party with no skin in the game to help you weigh out your options and to see things in a more neutral light.
Strive to maintain some normalcy.
Structure and routine are comforting, so the more you can maintain your day-to-day in the midst of a change, the better off you’ll be. Go for your usual morning walk even if that walk is shorter or if that walk is with the help of mobility aids. visit the same coffee shop or order door dash from that shop and try to stick to your normal sleeping, waking, and eating times.
Count your blessings.
Whether you just received a difficult diagnosis or you’re about to start a new job, counting your blessings in a gratitude journal or sharing the top three highlights of your day with a family member at dinner can go a long way toward making you feel less depleted. Even during difficult times, things like noticing a starry sky or beautiful sunset or watching a colorful butterfly can act almost like a reset button for your mind.
Don’t forget your family, they are also experiencing a loss. They are the observers of you being in pain and suffering and not being able to do anything about it. Especially if your diagnosis is hard to find. The fear of the unknown is also a trauma they are going through.
I do understand that it’s hard to manage your own emotions and other people’s emotions. It’s ok to focus on yours alone. This is where I would suggest a family counseling service to help them and yourself work through the collective stress your all enduring. I would like to leave you with one image though. Just imagine if the roles were reversed. If you were the caregiver and your family member was the one going through the health challenge. How frightened would you feel knowing your loved one was suffering and knowing you could really do nothing to actively support them or heal them. Even though in truth being a support system by being present and loving and offering care is doing a lot to the person going through the health scare.
The best thing to do is to not allow yourself to get bogged down in the thought traps. Try assigning yourself a worry period.
Create a “worry period.”
Choose a set time and place for worrying. It should be the same every day (e.g. in the living room from 5:00 to 5:20 p.m.) and early enough that it won’t make you anxious right before bedtime.
Write down your worries.
If an anxious thought or worry comes into your head during the day, make a brief note of it and then continue about your day. Remind yourself that you’ll have time to think about it later, so there’s no need to worry about it right now. so your worries are more likely to lose their power.
Go over your “worry list” during the worry period.
If the thoughts you wrote down are still bothering you, allow yourself to worry about them, but only for the amount of time you’ve specified for your worry period. And if your worries don’t seem important anymore, simply cut your worry period short and enjoy the rest of your day.
One thing I’m learning is when it comes to sudden health changes. You have to choose your battles. You will need to have a good handle on what your body is doing and saying. When you observe a new symptom. It’s important to take note of it and to watch it. See if it’s happening because of something you may do in the last few days. See if you are getting any relief over time or if it’s getting worse. Notice what is making it better or worse.
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