I know that I am too early in my diagnosis to really describe true discouragement, however, my long term battle with many chronic conditions and long term relationship with pain has provided a backdrop…..from having gone from the peak where it was hoped that the last battle had been fought and won! To the reality of another….only this time….permanent, long term chronic condition.
The hope for the medication balance hit a road block yesterday! Thus the title of tonight’s writing! I was really excited to work up to the dosage my doctor was wanting me to get to. My body though had other plans! Due to the fact that I have had such extreme abnormalities with my digestive tract (specifically my intestines), I have been paying attention to my body being alert to the rare side effects of the Gabapentin (the better known constipation and the lesser interaction with the intestinal muscles causing them to further slow down). My system has had the problem of slow muscles…..muscles not working properly in the first place! So even though I was dealing with a low dose….as soon as I was tring 200 mg at night followed by 200 mg in the morning……my system slowed dramatically!
The use of Milk of Magnesia was not even working! I had to actually take a full dose (which I never need to do) after taking my usual amount each day! Needless to say…..I was not feeling well due to the bloating….and finally all the movement afterward……not to mention all of the symptoms I was dealing with all ready due to Fibromyalgia and Polyarthralgia!
Today, I was beyond exhausted! My body was heavy, body ached from head to toe…..burning all over. You know too well!
I am cutting the Gabapentin back and will be advising my doctor. I know that it will be months yet for my body to settle. I understand that I will have to further cut back activities while working the shortened workdays. I am learning to enjoy my naps and to relax.
The “discouragement” is easily offset by the antics of our son……of having the opportunity to help him with homework or to just sit next to him while he works through the assignments.
It is a struggle as anyone dealing with long term conditions knows. We are not only battling our own bodies……we are fighting to keep our sense of self……as we navigate a new and sometimes scary path!
Thankfully, I am also learning to better seek help and strength from those around me. Hard lesson yes! Totally worth it though! It helps all of us!
Now time for bed…..time to sleep and hope for a slight reprieve. If not? I will have the best distraction tomorrow….as our son enjoys an early birthday sleep over party tomorrow!
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.
I was back to the doctor this morning. Last week was SO difficult…..ending with over a day and a half with muscle spasms. (In addition to all the other symptoms, that just want to bombard my body!) We had a frank discussion about where I am with symptoms, review of my job, etc. Doctor also understands how important it is for me to have the focus to be “Mom”.
My meds will be adjusted…..doses and time at which I take them. And, my doctor said I can work no longer than 5 hours a day for 6 months. She was also very straight forward! There is a real possibility that part-time work will be the best that I can do. There is still the possibility that I could recover enough and get enough of a handle on my symptoms that I will be able to more than what we anticipate at this time.
This is a HUGE change! Not only for myself, but our entire family. We live in an area where my husband has really struggled to find work. He has been able to do some taxidermy work and a few side jobs. The economy here is just tough. My job has been the one thing we could count on!
I have spoken to two of the owners and will have a chance to speak to the other two owners tomorrow (I hope). I have told them my idea….to work from 9 AM to 2 PM. That way I can maximize the strongest part of my day and be at the office to assist during the busiest time of the day.
My energy really starts to drop at 1 PM…..by 3 PM I am ready for bed……so leaving work at 2 will give me the opportunity to get home to take a nap. Yes….I am supposed to take a daily nap…..30-45 minutes….at least initially to help my body help itself.
I do not yet know who the change will impact my income…..I have to give the owners time to discuss and then speak with them at a later time.
Now…..I will focus on me…..on the rest my body needs…..I will focus on allowing others to help me more……I must focus on relaxation!
A wonderful distraction the other day to a morning of pain!
i am so glad that I called my doc! I will go back I to see her on Tuesday.
The last week and a half have been so very rough! This last week especially. I also filled my other prescription to add another level. It will take time for it to build up in my system. That’s okay…had to take that step.
The muscle spasms have been so bad in my arms and legs! Today my muscles ache and my left arm barely moves. I am sure it is from all the spasms that occurred yesterday. Body has been burning….I have just been overwhelmed by all the sensations bombarding my body!
Today I also gave in for a nap. It helped my head feel a bit better even though it did nothing for my body.
I am anxious to speak withy doctor. To determine what specialist or further testing I need. Will also discuss work and what I should modify.
There has to be a way to get my body to start calming down. I have been through enough to know that my body tends to take any condition to the extreme!
I have been quietly praying all day today……”Grant me strength, please!”
Tomorrow will be another day of rest….very gentle stretching…..and short walks around the house. It is pouring rain outside…..so the warm fire and heated blanket are my best friends this weekend.
My hubby has kept the fire stoked and our son has helped me laugh! Nice to watch him working on a puzzle or just sitting next to me for a while.
I am hoping I will sleep better tonight since the spasms have stopped.
Dealing with a chronic illness or condition is a tough reality. The pain and symptoms are esquisitely vivid for us as we are the ones experiencing them.
Those around us….our families, our friends, and coworkers are forced to watch. They are on the outside….wishing that they could apply a band aid or rub on a special ointment that would magically take it all away.
At times…we too wish for that “magical balm”….wish that it would just go away! We ask ourselves “Why?”….”What makes me so special?”
Then we refocus. We might be overwhelmed by the sensations and pain currently wracking our bodies….like I am feeling today. But there is something to help distract….tonight? I got to bake a cake for my hubby’s birthday (which is tomorrow)!
Now under a heated blanket, my body is completely restless….sensations and pain are still overwhelming. Not sure if sleep will be possibile….for sure it will be a “fitful sleep”.
We have been given a unique challenge….those of us tasked with a chronic condition! And…as we always do….we will continue to push forward…to focus on the fact that “This Too Shall Pass”….that tomorrow or the next day will offer us a slight reprieve….
The more time I spend researching and reading fellow Fibromyalgia / Polyarthralgia sufferers I see that there are so many things that we share in common.
Yes…read the literature….read about the common causes…..”history of chronic pain”….”history of chronic illness”…..”post traumatic stress”…..etc.
This is the part of my life that I have not yet written about. I know that I too share this PSTD. Thanks to my first marriage…..thanks to the emotional/sexual abuse….the threat of physical abuse. The fact that I was trapped…held hostage…..every movement monitored.
Add to that…..the years of the chronic pain…..the chronic illness. And voila! Perfect breeding ground for this current challenge!
Forgive me…..I cannot write more about that time in my life yet…..that time that with just the initial words written cause my heart to race….make me want to look over my shoulder. I am one of the lucky ones! I was able to get out! I was able to go to the grocery store and use a pay phone to call my Dad…..to tell him about what was going on…..to then have a courtesy visit with an attorney…..and arrange a nighttime move with the help of my family.
Fast forward….my wonderful husband and our awesome son! I am so blessed! Even though I am now challenged by this combination of chronic conditions.
I have been through a lot…..I have endured……I handed God a “mess”. He has taken this “mess” and shown me a “challenge”….better yet, an “opportunity”……an “opportunity” to help others.
I pray that you will continue to forge ahead….continue to push forward! Our condition(s)/illness(es) do not define us! Keep your head up and continue to move forward…..one step at a time…….and each step of the way remind yourself….”This Too Shall Pass”!