Tag Archive | tiredness

Our pain is real

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Every day can bring something different. Sometimes days start with low pain only to have it increase throughout the day. Living with chronic pain is draining not only for the body but for our mind.

Because you never know when pain is going to go from 3 to 7+ you worry about where you are going or who is going to be around. Are you going to be in public? Are you close to home? Is the a place where you can attempt to get some relief?

When living with chronic pain there are so many things to consider. Yes, medications do help some, but they never relieve the pain fully leaving us to find ways to cope.

Yoga and other forms of exercise can be beneficial. Learning to breathe and stretch can help during spasms allowing some relief. Everyone is different and we must all find what works for us.

Our struggle and pain is real even if we don’t look ill. Most people living with chronic pain do there best not to show it and to stay positive. But when we have high pain days and can not do much don’t call us lazy or think we are faking it . Instead show compassion and understanding. Pray for us in those moments and let God’s healing hands do the rest.

Things I sometime think about…

Becoming disabled at the age of 52 was not what I had planned for my life. I am supposed to be enjoying life with my husband, traveling, having fun with my children and grandchildren not wondering how much pain I going to be in or how many spasms am I going to have to endure. Now I am learning to live with pain at 5+ on the pain scale on most days as well as having to take way more medications than any normal person and having to use assistive devices. Yes, these things make life more difficult, but learning to navigate in public places as well as with the public is even more difficult.

Just going to any local grocery store, pharmacy, or restaurant possess challenges that beg the questions like: why must they all have industrial mats at the entry year around? or Why are the handicap bathroom stalls are at the back of the bathroom? Should they not be at the first stall where people with disabilities can get them  fast and easier? or Why do most places make the doors to enter the bathroom so heavy that even a person with no disability has difficulty opening ?

Every time I enter a building, I must be aware as there is often a major trip hazard called rugs/mats. This is especially true when you are using a walker because as you “glide over them” they catch the wheels and lift causing a major trip hazard. When the mat lift you then have to stop, lift up your walker so you can dislodge the mat stuck under the back wheels or skid plate, and then set it back down before walking on. Well, if you are using a walker chances are you are already unstable like me. Now, I must try to stand balanced while lift and setting down my walker. Does not sound very safe to me.

Next, why is it that in most places the handicapped restroom is the very last stall, there is usually only one stall, and just entering the restroom is a chore? Most people living with a deficit already have difficulty so making the door to enter so heavy that even someone who is healthy and strong can barely open it is just uncalled for. Living with a SCI and Chiari Malformation does not just cause added pain but also creates bowl and bladder issues. Often when the urge hits you must go right now. So, struggling to open the door, only to find out you have walk even further then abled body people and then there is only one stall which is now occupied by an able body person.  Women tend to use these stalls when they have small children-So why not use the family restrooms instead? Granted in some locations they put the changing table for babies in the only stall available for handicap which complicates matters some (not sure if this is true in the men’s restroom).  It seems strange to people when you have a grown adult doing the pee-pee dance because you are doing everything you can to not have an accident. It is a bit embarrassing to be an adult that has bathroom accidents, but it happens.

Having illnesses like Chiari, MS, SCI and many others means dealing with not only the everyday pain and discomfort it also means learning to deal with bowl and bladder problems. There are days where everything works like it is supposed to and then in the blink of an eye you are dealing with urgency and inability to control your bowel and/or bladder. It is already difficult having to deal with chronic pain and instability but then we also must navigate in a world that is not made for people with disabilities. So, when you are out, I would ask others to be a bit more considerate, avoid using the only handicapped bathroom if possible, and pay attention to your surroundings. You can help those of us with a deficit by being proactive and watching for hazards and bring them to managements awareness just like I do. Even with the obstacles, I still am grateful for every day I have, and I feel truly blessed. I will keep moving forward and do my best to tell a better story as I know that God has a plan for me.

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Pain Is it real or just in my head

As I awake each morning my body reminds me of how damaged it is because the pain never seems to go away. But the question I continue to ask myself is, Is my pain real or just in my head? I ask myself this because I have been told repeatedly that, your brain controls everything and you have the ability to control your brain. Well, when you have a physical condition that creates pain, how does that constitute that your pain is all in your head?

Over the past few years, I have been to many doctors which deal with my physical conditions of incomplete spinal cord injury, arachnoid cysts in my thoracic spine, Chiari malformation and nerve damage related to the 8 surgeries to decompress my spinal cord. Some of my doctors recognize that my pain is real, and others like to pretend that my pain is all in my head and is going to go away. Regardless I am still left with the “real” limitations that my pain creates.

Some days I can move around with less pain than others. Often, I get asked questions like, why is your pain better? Why aren’t you hurting as bad? Why are you moving better? The response of ” I don’t know” never seems acceptable.  Instead I often hear comments like- Well, you’re the only one that tell us why? Or What did you do different? When I explain that I have done nothing different, that I have taken all the same medications in the same order as I do every day it is still not acceptable. The frustration is beyond what one person should have to deal with. Why don’t others get that if I could figure it out, I would duplicate it so that every day would be better?

For now, all I can do is keep moving forward by continuing to deal with my pain by taking my prescribed medications at the same time daily, stretching and doing balance exercises to help strengthen my brain’ s communication with my legs and back. Right now, my brain still doesn’t fully realize I even have legs. For example, if I stand at the kitchen counter without looking down at my feet periodically my brain sometimes forgets I am standing, which causes me to fall. This is caused by the loss of proprioception in both legs.

The communication from my brain to my nerves is also on overdrive causing my nerves to overact. This causes the skin on my back, stomach and upper legs to feel like it is being stretched, sliced and is on fire. Even the slightest touch feels intense and painful. Putting on clothing hurts to the point of giving me the chills at times. It also causes my right leg which normally has very little feeling to feel like there are a million spiders with sharp needles on theirs legs are poking me repeatedly.  I am prescribed Gabapentin 700 mg three times a day for my neuropathic pain in conjunction with other pain medications which I take every 4 hours to “help” control the pain. None of this works well. I find that the pain medication takes about an hour to start working then only work at its full capacity for about two hours then decreases quickly. This leaves me in pain most of the day. It is often hard to get motivated to do much or to really want to be around people.

So, is my pain real or in my head? I say both.  The pain is real, but it can be exacerbated by my brain response to stressful situations and by physical changes. For example, if my body is fighting a cold my pain often increases until the illness runs its course. Stressful situations often lead to more pain. It is easy for me to start doubting myself and lose my perspective therefore, creating stress and more pain. But because I have hope that I will get better, whether it is via a new medication and/or treatment or answered prayer I will keep me moving forward. God has promised that if we have faith and ask Him to heal us that it will be done. ” And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven” James 5:15. Having hope is what helps me continue each day even though I know I will wake up in pain and end my day in pain. My prayers continue to be answered as each day I improve even if it is only a small bit. I went from being mostly in a wheelchair to walking with a walker in just a few short months after my 8th surgery.  Currently, I still walk with a walker, but I can walk some without any assistive devices. I refuse to give up as I know God will keep His promise and we all have a better story we can tell.

Learning-to-deal

Each day is different. Some days are great in that the pain is down usually around a 3 to 5 on the pain scale. Other days no matter what I do the pain remains high at about 5 to 9. There is no reason for it as my medications remain the same. Why? This is the one of the questions that plague me. I am learning to deal with so many things, but the one big thing is letting go of the why and learning to live in the now. This is beyond difficult.

Some days it feels like God is gone and has left me. He hates me. He not only took the use of my legs, but has allowed me to continue to hurt at levels that are unbearable at times. I have become isolated from those around me as their lives cannot accommodate someone like me who is slow moving and unreliable because the pain. My only communication with “friends” is often via things like Facebook or Instagram. It is a lonely place to be. The reality is people don’t just want to sit around watching TV, playing a game or talking with someone who is hurting because we are not fun to be around. Besides their lives don’t have time for people like us who are in constant pain and disabled.

Learning to let all of that go and see the “bright side”  is not easy. Realizing that God is still there and He really does love us seems like a dream. For me, deep down I know that God is real and He loves me. The enemy loves to sneak in and make me doubt everything. So often questions like, can my family still love me the same? How can I still be whole? How can I take care of my family as I can barely take care of myself? Each day seems to bring new questions and doubt. It sucks. It doesn’t help when the people you love are constantly telling you things like- Pick up you feet, bend your knees, don’t bend over and pick things up. As for me, I already know my body doesn’t work right I really don’t need to be reminded constantly.

So how do I let is all go? I don’t know at this point. Each day all I can do is pray constantly and do my best to move forward. With God’s help it is my hope that I will find a purpose for my life and I can learn to let all of this go accepting what is happening to me.

 

Days that aren’t so good, can be little blessings

As I continued to hope that the pain would get better, I realized that wasn’t going to happen. Because of the pain I had to miss yet another outing. I did not get a chance to go out trick-or-treating with my 11 yr old daughter and husband, but instead I stayed home with our 15-year-old and his friend who were handing out candy.

My pain remained fairly high at about a 7 most of the evening regardless of how much medication I was able to take. Of course I have to be very careful, as the potential to over-dose is high so there are times that I have to just deal with the pain.  Even so, my heart ached to have to miss yet another outing, but at the same time I was thankful. Because I hurt I got to stay home and hear the laughter joy that was coming out of the other room.

Our son and his friend were playing video games, eating pizza, joking, and laughing. Sounds that I wish we heard more often. You see, our son often is isolated in his room programming his computer, playing computer games, or listening to/playing  music. He is the typical teenager. He does come out and join us for family game night and movies occasionally.

But in the midst of pain, God has blessed me yet again.  Instead of just sitting around watching TV and hurting,  I was able to be a part of this special moment of laughter and fun.  As they both ate pizza and came in for seconds they were pushing each other and making jokes. Listening to them bought smiles to my face. Rare moments like these are cherished even when physical pain is makes it difficult.  Actually listening to the joy coming out of the other room helped reduce my pain. I am so thankful for these little moments that God keeps giving me. Continue reading