Tag Archive | medication

Learning to let go

It has been difficult to get motivated to write or do much of anything being that I have been more pain than normal. I am having a flare up that has caused by pain to remain high despite medications. My spasticity has also been high making it very difficult to walk and stand. I do my best to stay positive and not get grumpy or angry. Unfortunately, no matter how hard I work at it the guilt mixed with the pain wear me down and I do snap at those around me. Of course, this causes even more guilt. Learning to let the guilt go is hard but necessary.  We cannot take responsibly for things we cannot control. We must let go of the guilt and focus on the things we can control.

Flare ups for anyone living with chronic pain, be it from a SCI or an illness like Fibromyalgia, cause not only physical pain, but mental as well. For me it is difficult because it means not being able to take care of my family the way I normally do. It means not being able to do something I love, cook a meal for my family. Heck just getting up, showered, and dressed are major feats. But the physical limitations often lead to feelings of guilt and inadequacy. It is easy to see all the negatives-I can’t make the bed, I can’t get the laundry done, I can’t pick up around the house, I can’t cook a meal, and I can’t…

All these negatives creep in over time, but it is important to change that running line in your head to a more positive one and realize that you really do have an illness. When anyone of us get a cold or the flu we take medications to help and allow ourselves to rest. So why is it that we cannot do this when we have a flare up of symptoms? Admitting that I really do have an ongoing illness continues to be difficult, but through prayer and learning to give it to God I have been able to continue to move forward. Yes, I really do struggle with admitting I have a chronic illness, but my body reminds me every day. I am learning to change the” you’re a failure because you can’t… “story into look at what you are overcoming and continuing to do.  

It takes constant reframing of my thoughts. It is so easy to see and hear the negatives. It is important to recognize and deal with what you are feeling.Hiding and pushing your feelings aside only keeps them festering and making the story you hear in your head seem far worse that it really is.  By reframing the negative thoughts and feelings we can continue to keep moving forward. For example, When those around you who believe they are being helpful constantly say things like- “Your standing with your knees locked “followed by “you’re not picking your feet up”  or ”Get your feet under you , you are leaning to far forward.” And of course, I can feel the issues because my balance is off, my legs buckle and just standing is difficult. Instead of focusing on the negative I do my best to reframe my thoughts to something more like, “Look at you, you’re standing,” or “Wow, you just walked up hill and it was easy.”

It is perfectly okay to Give yourself a pass. Again, understand and realize that you are not choosing to do something. All of us that live with chronic pain/illness must accept that our bodies don’t care if we have plans. Our bodies are going to do what ever they want. So, take the time to rest and recover so that there will be better days ahead.

Be sure to treat yourself with kindness. Reframing your negative thoughts into positive ones helps tell a better story which will impact our emotional state. Remember our brain is powerful and it impacts what our bodies physically feel. Higher stress levels means more pain and a reduction in our ability to deal with the pain.

Reminding yourself and finding the things you can do is also of value.  Pain often interrupts our plans, but instead of getting angry and down focus on the things that you have accomplished during the day. We cannot fix the past, but we can adjust and make changes to our future. Find things like painting, gardening, or other hobby to get out and meet others or to relax.

Every step I take is a miracle that God has given me, and it is so easy to lose sight of how far I have come. It is easy to let the negative thoughts and guilt in and start believing them. This affects my mood and my pain levels. Learning to reframe my thoughts, pushing all the yuck out helps reduce my pain levels, makes for a happier day to day life, and makes my mood much better. Stop feeling guilty about the things you cannot control because this only stops you from moving forward. I encourage you to let it go.

The gorgeous sunset tonight. Enjoying the view while navigating the pain and spams. Have enjoyed the day watching my grandkids and nephew hang out and boogie board. So thankful for the special moments when my pain is down. Ugh!!!!Spams and burning. Man it sucks! The pain often interrupts my life in so many ways. Doing my best to enjoy as many moments as possible. God has painted the sky yet again!

Weekend Relaxation

Taking time to relax and rest. After a week of being sick as well as dealing with the daily issue my hubby and I are enjoying visiting our family and relaxing in New Port Beach,Ca. This will be our view for the weekend. Hoping this will bring more healing into my body. Enjoying some of the wonders God has given us!

Moments

Enjoying the outdoors and cooler weather in Big Bear. Taking time to seize the moment when my pain in on the low end for me (about a 4) and watching to make sure I do not over heat and cause my symptoms to flare.

Not being able to regulate my body temperature has made getting out more difficult. Because I only sweat on my face and neck my body cannot cool itself which poses the risk of over heating and heat exhaustion, so staying cool and drinking plenty of water are a must. Then there is the opposite issue as well. My body cannot tolerate over air conditioned places. Both extremes cause my body to spam and burn more, which of course, causes my pain to increase. Oh, the joys of living with a spinal cord I jury.

The best thing I can do for myself is to take the opportunities that present themselves and keep moving forward. At the same time, learning to allow myself down time when my body is in pain without beating myself up. I still have work to do in this area.

Balance training

Today June 18th, 2019 I arrived at the gym feeling tired and hurting at a 5. I chose to head to the gym regardless of the pain because I knew that I had to push myself. Please note that I do have days where my pain which is caused by Allodynia and spasms is so elevated that I can barely move let alone drive. Gratefully, today was not one of those days. I do find that exercise and moving around can aid in diminishing my pain. By the time I left the gym my pain was down to a 4.

Todays session was balance training. Because I lost my proprioception, my balance, also went out the window. I have been working for the past two years to regain it. Developing new neuro pathways is essential for me. You see, our bodies are amazing structures that even when it is damaged it looks for ways to rebuild itself. I have to really concentrate on every movement as well as noting what I am feeling or not feeling as each exercise is performed.

Squats while balancing on the Bosu ball.

Balanced on the Bosu ball for 60 seconds. I remember the days that I could not balance for more than 12 seconds.

When I am not in the gym I workout at home. I get down on the ground and crawl on my hands and knees twice a day. I also put on 5 lbs. ankle weights and walk around my house for at least 30mins. practicing to lift my legs as high as I can get them. Often it is not very high, but I know every little bit helps. I also do a lot of stretching and eventually I plan on joining a yoga class. Right now getting up and down off the floor is still difficult and I often look like someone learning to walk on stilts.

Each session is different and challenging. Leaving the gym today I felt accomplished and renewed. I saw the progress I am making. Each day God gives me is a day to show Him that his gift is not being wasted. Because I have hope and faith in what God can do I cannot give up. A very wise friend of mind said, ” Speak to your legs daily and tell them they are healed. God , is healing you right now.” From that day on and I have done my best to remind my legs that they are healed and that they work. God is good!

Beating my incomplete SCI one day at a time

Beating my incomplete SCI T2-9, C4-C6 and Chiari is feeling thankful.

13 mins ·

On Thursday June 13, 2019, I went to the pain clinic for another nerve block. Hoping this one actually works. In the past there has not been much success, but when you live with as much pain as I do you are will to try.

Usually, after this type of treatment I am down for a day or two but so far so good. Today the pain has been better ( usually runs about a 5-7, and today it has stayed about a 4-5). Hopeful that this time I get some much needed relief from the spasms and burn feeling that runs down the entire left side of my torso.

The procedure itself is painful but nothing like my daily pain so I am willing to endure it. The doctor first wipes down the area, then he numbs the area/areas to be injected. The 5 injections of lidocaine are not pleasant but tolerable. Next using a fluoroscope the doctor find the nerve to be injected, mine were at T6, T7, T8 and T-9. He finds the nerve by inserting the needle in slowly until it hits the rib bone then slides it ever so slightly into the nerve and then injects the medication which is suppose to deaden the nerve keeping it from sending the signals to the affected area. It usually takes at least 24 to 48 hours to start feeling the effects.

When I woke the morning after the procedure I was still feeling a lot of burning and spasming in the areas of injection. After I got up and moved around a bit the pain has diminished to about 4 overall on the pain scale. This is huge for me. I am was hopeful that maybe the injections worked.

Now at almost a week since the procedure, I do have to report that my pain, especially at night around the 8:00 pm time, seems to increase to about an 8. Even with taking extra meds such a Tizanidine, which has been prescribed, the spasms and pain remain high. I would say that the nerve block did not help. Back to the drawing board.

Overall, I am very thankful for yet another day to be with my family and friends. God has given me so much. I don’t want to waste it.