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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Thankful

Every breath and step I take, and every hurdle I conquer is because of Him. Facing each day with Him means nothing is too big to overcome because even when I think I am failing He is picking up and carrying me to the finish line.

His beauty surrounds us

I took these pictures of the Hawks yesterday afternoon. Not easy when you are having to balance, not look at your feet, have to stay steady and take the picture. It has taken me almost three years to be able to get enough balance and proprioception to stand and take a picture or two. I still lose my balance, but with my LifeGlider it takes the worry out of falling. Most importantly, I also asked God to give me the ability to take the pictures just before I took these. Isn’t He amazing?

These were taken from my back yard. We get a variety of wild life in our area. This time of year brings lots of new life and blooms.

High pain days, what can you do?

pain

 

Living with chronic illness often means learning to navigate the daily pain and stiffness changes that can be exacerbated by fluctuation in temperature and sometimes food. It means being aware of what your body is always telling you and doing something about it before it is too late. For example, when temperatures rise into the upper 80’s and above, I must be extra diligent with drinking water to stay hydrated, doing my best to stay in cool shaded or air condition places,  and watching for signs my body is may be becoming over-heated. Because of my SCI and Chiari Malformation my body does not sweat normally, I only sweat shoulders up, which means my body cannot cool itself off properly. So, whether I am relaxing in a pool or indoors I must make sure that I do not over-exert and get overheated. In cold weather I must bundle up but make sure I do not become too warm. .Becoming overheated or getting too cold can mean increased headaches, more allodynia which in turns triggers spasms in my back, across my tummy, and down my legs. This usually means having to lay around for the next day or two and/or sometimes longer. So, on high pain days what can you do?

Give yourself permission to recover and accept help

It is not always easy to have to admit that your body is rebelling and that the only thing you can do is find a somewhat comfortable position, take your medication, and just rest. I know for me this is difficult. As a wife, mother, and grandmother I am supposed to be the one that takes care of everyone else not the other way around. Not being able to get up and take care of my family makes me feel down. I hate feeling like I am letting those around me down. But the reality is that our family and friends understand. They only want you to get better. It is perfectly okay to ask for and accept help. Our bodies are telling us Stop! It is time to rest and recover.

 

Distract yourself from the pain

We are all different and like different things so finds what works best. For me sometimes it is putting on my VR helmet and immersing myself in a game, go swimming with the dolphins in Ocean Rift or use the meditation application. I have used this method on many occasions and find that my pain will drop from an 8+ to 5 in about 15 minutes. After about 45 mins. I can remove the mask and relax some.

Another way to distract myself is find a sitcom or movie to watch. With all the different services out there like Netflix, Hulu, and Fire Tv it is impossible not to find something to watch. I often find comedies, old reruns of I Love Lucy, or a great movie on the hallmark channel often help distract my mind from focusing on the pain as much. Look, when your body revolts find ways to make the best of it. Whether you are engrossed in a game or coloring do what helps you distract yourself from the pain.

Remember this is temporary

When our bodies misbehave it is easy to fall in the trap of beating ourselves up. It is extremely easy to lose sight of the fact this is only a temporary setback. Often, especially when things seem to be progressing, a minor setback like this seems much more than it really is. It can feel like this is going to last forever and then we start playing the “What if game.” What if I do not improve? What if this means I must start increasing my medications? What if the medications start making more lethargic? And, so on and so on.  Our minds are powerful and if we allow the negative thoughts in, we risk increasing our pain and discomfort. This usually leads to longer recovery times. It would benefit us to remember this is only a hiccup on journey.

Our bodies are complex and sometimes temperamental. Living with high levels of pain is difficult and can drain our ability to cope and cause us to lose hope. It is important to remember that these setbacks are just temporary, and our journey will resume shortly. It is okay to take the time to recover and accept help. This does not mean that this is going to be how things are from here on out. Let us do our best to allow ourselves time reset and recover.

 

Dear Lord, thank you for being the light that guides me through the storms. You renew my faith, hope, and my spirit. Help me to always find You even the most difficult of storms and give you praise through it all.