I know we have all been at this point. Battling daily with chronic conditions/illnesses takes a toll! It pushes us mentally, physically….and spiritually.
Monday started ok…..then I had symptoms starting to increase. Then at 6 pm, I was hit by what I can only describe as a “loaded freight train”. My entire body….every joint, every muscle was aching…throbbing….that deep intense aching that makes you extremely neaseous. My body was on fire! I was so totally overwhelmed….so suddenly…..it completely caught me off guard!
The cause of this intense increase or increased flare of my Fibromyalgia and Polyarthralgia? The weather! Another front moves in!
I could feel the tears well up…..no actual tears fell…..I knew that there was nothing I could do…..just curl up and pray….rest as best I could.
We each hit these points….these times when we are completely overwhelmed….feel that our bodies are completely out of control….that the hope of relief is so far off….
That feeling of being on the verge of tears!
i have come across a great site “livingwithfibro.com”. Great site to interact with others dealing with this chronic condition!
I have just started my path! I am still settling in and trying to get my body to settle! My symptoms are still out of control….medications and restrictions to my work day are hoping to provide much needed relief.
Having experienced other painful chronic conditions, I know that I am in for a battle. This one may truly top all that I have dealt with. Yet I know it will not break me.
The primary difference is that there is no cure for this condition. There is no surgical cure. There is only a dance….that dance made by the balance of pain with the medications and activity allowed.
Fibro and Polyarthralgia are permanent, chronic conditions. They are not fully understood by the medical community. I am thankful for my doctor! She has educated herself on these conditions!
I have no answers. I am seeking them myself! I am battling to gather more strength. I am battling to gain more control!
Yet I know that I will come to a point that I can manage! I will learn to better manage my symptoms….to better understand my conditions.
Yes….it hurts! Yes….it is extremely painful! We persevere through the pain…the burning….the spasms.
As a Mom, I am so worried about what I might have passed on to our son! I know that he is all ready at risk since he was premature and I had the one of the worst cases of HELLP syndrome seen in Oregon that year.
I do not want him to have to deal with what I have and am dealing with! I want him to be healthy….to be able to live his life free from his body dictating what he can or cannot do.
I know I cannot control this. My wishes….my hope to protect him….may just be a Mother’s dream!
I hope to make an appointment with his doctor once the last of my tests are done. I want to meet with him as soon as we have the final true diagnosis for me. Once everything else is ruled out.
I want to know exactly what we need to be watching for…..looking for. I want to make sure that we catch any type of symptoms he might have early. I am hoping that he will have a better chance.
I want my son to have better health….to not have to deal with the limiting factors that I am dealing with!
I had so hoped that my health struggle was drawing to a close! Having gone through Pelvic Floor Syndrome, Spastic Colon, Spastic Sphincter, rectal prolapse, and colostomy…….then another underlying layer of IBS……I had hoped that I was done.
No! That was not to be the case! My body is out of control! The achy pain….the extreme fatigue….the heaviness of moving ones limbs! Man this is crazy!
I am anxious! I am ready to see my doctor this week. Tests so far have been negative. I know that what I am experiencing is not in my head. I know that something is not right.
I am ready to have additional input…..to undergo additional testing to know what could be causing this!
Part of me screams…ENOUGH! Yet….I know that we are promised that God will not test us beyond what we can endure. My prayer now is simply….God help me…give me strength!
I know that I have been given another task…..as of yet I do not fully understand…….all I know is that I am here. I will be fully present……I will give my all.
Through this I am still working….still teaching 4/5 grade youth group on Wednesday night, heading up the Altar Servers for our Parish and assisting with our son’s Cub Scout Den. I would not miss any of this!
I know that I have been Blessed! I am so thankful for the time that I have had and continue to have!
However, I must admit that I am tired……and a bit frustrated. Yet…..I must draw a deep breath! I must reenergize…..must ready myself! Another test….another “climb” is ahead!
God, please give me strength! Allow me to help those around me!
I have close to a year under my belt with the Low FODMAP diet. It has helped so much in settling down my symptoms!
This in turn showed me the frustration that my specialists had! My system was so over-reactive and dysfunctional that there was no way to label what was wrong with me!
Now that my sigmoid colon, anus and rectum have been removed…..and I now have the Low FODMAP diet in place……my digestive issues are under control!
I now understand that my intestinal system is “not right”…..it is extremely overreactive! Only by controlling what I can….this means DIET….can I hope to maintain a semblance of normalcy!
There will always be that portion that I can not control….the portion called “stress”…..I can only hope to keep it minimized….as best I can. I will offset that with exercise, relaxation and just family time to minimize its impact!
The Holiday’s….a time to enjoy time with family and friends…..which includes gathering for meals. Don’t get me wrong….these gatherings are so important! Precious time shared…especially with our kids…..spending time with extended family that we have the opportunity to see very often.
This Thanksgiving I thought I had prepared things well. We had advised family that I would supply some additional food to supplement the traditional meal that was being prepared.
Upon our arrival, food preparation was well under way. We added our goodies…..tamale pie, seasoned potatoes/carrots, and pumpkin custard (adjusted for my modified, Colostomy friendly, Low FODMAPs diet requirements).
My mistake! I should have had a snack! With my “mini-meals”, I was off-track. I had hoped the timing of a late breakfast would allow me to delay so that I could eat at the same time as everyone else. Did not work out that way!
I ended up with the shakes and could feel the knot in my stomach! Yikes! I had to get a portion of the food I had brought. The frustration for me was from comment made about “well…your not going to eat what we are preparing”.
That cut! As anyone on a restricted diet understands, our diet is not an “option”…..it is a life change that we had to make in order to be healthy….in order to be able to participate in life’s adventures with our family and friends.
Our diet can make us the “outsider”……by bringing our own dishes…..it can at least attempt to bridge a gap….to let us feel that we are participating in some way.
Believe me…..it is hard to not join in! To not just simply think, ok….just a couple of bites won’t hurt! Yet…..in my case, I know it can (and has)! So I have chosen to not chance it! It is simply not worth it.
I am sure that I will be preaching to the choir here!
I have learned something more from my body….from the many health challenges that I have experienced…..from experiencing issues that I had to educate my physicians…..
Stress is beyond our control! It is the one element that we cannot dictate….we cannot completely control our exposure to it. We have limited input….we do our best to reduce the stress in our lives….to protect ourselves as much as possible.
The reality….what we experience at work….in life….some stress is easier to control….to deal with than others. Our bodies react more so to some situations than others.
We also have to focus on what is important! Our families….our kids….our spouses…..
We must also try to balance physical activity to promote our own individual personal health. Such a frustrating balancing act at times! Especially when we are trying to regain control! Trying to improve our physical strength/health….improve our time with our family……to just regain a sense of ourselves after dealing with so many years of struggling with serious health issues.
Personally, I have found that the stress from work is the part that I cannot control. The knots in my stomach…the pressure in my gut…is caused by the stress induced by things completely outside of my control. I can do nothing! I can only focus on the time with my hubby and son…..game nights, walking our property in search for tracks and hearing our son’s theories…these are the tools that I use to chase away the stress!
I also use physical activity….walking on the elliptical…lifting weights…..hiking the property…..although I cannot use these options as much as I’d like….I am working towards setting more time aside for me…these physical outlets will help to burn energy…to help to combat stress.
One other key stress release for my is being able to shoot bows with our son. It is such a wonderful stress relief……to breathe….focus on the target…..draw…breathe…then release. We have fun with different challenges.
We have to learn the best way to react….to respond to our body’s response to stress. I wish there was a magic cure….
Ultimately…I wish that none of us would have to deal with issues of stress for our bodies…..