During Chronic Pain Awareness Month, Please Remember This
Sometimes on my support group, I will see a newbie really struggling and I remember back to when I too was a newbie. It seems like a lifetime ago.
If you will permit me, let me offer some advice.
I know you are scared, but I promise everything will be OK.
You are believed. We know you are not faking or exaggerating.
Be open to trying any treatments you can afford.
What works for one may not work for another. Your body is unique and never let a doctor convince you of anything different.
If you do not like or trust a doctor or practitioner, go somewhere else.
You have to learn to be your own medical advocate. This road is going to be tough. If you don’t have the strength or for whatever other reason, rope a friend or family member into being your advocate. Bring them to every appointment. Do not be afraid to record the appointment if you have brain fog and may need the information at a later date.
Acceptance is key. It makes a huge difference to your mental health to accept your situation. This is not easy and it took me a few years to fully come to terms with it. Acceptance is not the same as throwing in the towel or giving up hope.
Hope is vital. Lean on God, the stars, the tea leaves, friends, family, your pet, your obsession with “NCIS” or whatever helps get you through.
You are not your injuries or illness. Don’t allow yourself to be defined by it.
If you haven’t had an official diagnosis, please do not stress too much. They are only words on a piece of paper and will not fix your situation. My pain specialist says even the opposite can be true. You can be pigeonholed and doctors can be lazy and not look at the bigger picture. A diagnosis can be wrong!
You know your body. You absolutely know your body better than any medical professional. If you feel something is wrong, even if no one is listening, keep pushing. You have had to live in this body for X amount of years already and hopefully many more years to come. You are the boss.
If you are uncomfortable for any reason, say so. If you don’t want that procedure, say it. If you want a particular test, say it. It is frightfully easy to get swept up in a consultation, go with the flow and do things because the doctor said so. Again, you are the boss.
You are still the amazing person you were before — just a bit less mobile or however your condition affects you. Once you get into the swing of things and understand your new energy levels and pain thresholds, you can learn to pace yourself. You’ll still be able to do many things you love, like meet your friend for coffee.
If you choose to take medication, take it. Some medicine can be very dangerous to stop suddenly or use in incorrect doses. Keep your pain med levels as low as you can function on, as after a few years, you may get used to them and be near the limit sooner than you think.
It may take a while to find the right cocktail of medication for you. Where pain or symptom management is concerned, you really do have to kiss a lot of frogs. It took 18-24 months for me to find my best combination and five years later I am pretty much on the same stuff but different doses.
Stress, pain and lack of sleep can make you grouchy. It will feel very strange, but there is a chance you will turn into an adult sized toddler throwing a tantrum for the silliest of reasons. Once I threw my boots and socks at a wall because they hurt my leg so much, I had to go out and I couldn’t find anything that didn’t hurt.
Don’t cut yourself off from people. Even if your only human contact is the postman, online support groups are a great way to reach out. We have varying support systems in our personal lives, but that support system is still unlikely to understand what you are going through even though they might be sympathetic.
Find an outlet. Lots of people with chronic pain or conditions find hobbies a good distraction. Lots use adult coloring books to help with the stress. A large amount of people do arty crafty things when they can. I love quizzes and writing. With my brain fog, I am not very good at either, but it is a positive way to spend some time. In the very beginning, this may seem impossible, but over time and once you settle in to a routine of sorts, you will find it easier.
Netflix or Terrarium or similar can be your best friend. When your bad days come, they can be a real life saver. They make you feel just that bit more “normal” when you are bedbound.
Create a survival kit. Bad days or moments may pop up completely unexpectedly. It is important to be prepared. Popular items in a survival kit usually include everything you need to spend extended periods in bed or in isolation. Water, chocolate, sweets, candy, some food or snacks, your meds, hot water bottle or electric blanket, fluffy socks, a book, a computer (tablets are much more useful in bed than a laptop) your phone, all the chargers for everything you need, and wipes as you may feel a bit yucky. It’s totally personal. I add a fan to my list along with extra chocolate. These things should help you having to get out of bed unnecessarily.
It is OK to be angry. It is OK to be sad. It is OK to be depressed. It is OK for you to mourn your old life and who you were.
This is the most important tip. Be kind to yourself. You are suffering more than you should ever have to. Our lives are hard. People will be thoughtless and unkind, either intentionally or not. Imagine a friend in your situation; what would you tell them? This is what you need to tell yourself. It is not selfish to occasionally be the most important person in your own life. Give yourself a break. You are doing the best you can.
Getty image by Maroznc.