The most difficult part of living with hidden illnesses/conditions like Fibromyalgia, Polyarthralgia, Chronic Pain Disorder, IBS, etc. is trying to describe our conditions to those close to us. I created the attached PDF to demonstrate how complex these conditions and their associated symptoms are…
Posts tagged ‘children of sick parents’
It is now 3 1/2 weeks post pain pump surgery! I have been amazed at how fast my body is healing. I have also been amazed at how quickly the swelling in my lower tummy went away. The butterfly bandages that the pain specialist placed over my surgical areas are still in place. I have noticed just a slight loosening of a couple of them on my tummy. No worries…supposed to let them fall off when they get loose.
I let my body dictate my actions. Let myself sleep in as long as I need….some mornings I am awake at 5…sometimes 6…I try to get up before 7. I am making an effort to walk about the house a couple times a day…goal of 2-3 minutes…resting for an hour afterwards. A nap in the afternoon is still a must! I find that I am sleeping for 2-3 hours…very solid and hard sleep.
I still have to give in and go to bed between 7:30 and 8 PM…to just lie down with pillow under my legs. I take advantage of this quiet time to read or work a puzzle. This down time has worked well to allow me to fall off into a good hard sleep.
We have definitely set what I think is the perfect balance of the pain pump and my current oral medication levels. When I go back in (in about 1 1/2 weeks), my doctor will again increase the pain pump level so we can continue to cut back the oral meds.
This is such an exciting time! It is SO awesome to be working toward a goal…an achievable goal! It is SO rare for those of us with chronic pain from Fibromyalgia or the like to actually be able to be in this situation!!
Now don’t get me wrong…I fully realize the path that is forming in front of me will be a long and arduous one. I know it will be years to regain some muscle…as all muscle is gone for having been homebound for so long. Even with this realization, my excitement is not diminished!
As day nine post pain pump surgery begins, it strikes me that my pain specialist really did a great job in preparing me for this! I truly was ready to be homebound for the first two weeks. I was mentally ready to be patient with the process! What a thought!!
My thoughts are still muddled at times…very hard to keep on track. Yet…I can just smile and breath deeply…there is nothing that I have to do…except allow my body the time to heal….allow the scar tissue to build near the pain pump and the catheter.
I am able to step outside now…slowly and carefully with my walker. I do not venture very far…it is just a few steps to feel the touch of the sun on my skin…feel the slight breeze…see the brilliant colors! This is a treat that I enjoy once a day…in the mid morning. It is perfectly timed between rest breaks.
I am thankful that I am able to listen to my body…to sleep when I need to…to relax in my recliner (sitting in the chair…cannot put the foot rest up yet). My chair is just high and firm enough that I can get to a standing position with my walker as support. I know that I am not yet ready to sit or lie down on the couch.
I am getting anxious for my follow up appointment…I am excited to hear the plan my pain specialist has in mind…it will be interesting to see just how easy it is to remain patient! : )
This second week has changed up the withdrawal symptoms! My body temperature is seriously out of whack…I mean…how can I be soaking in sweat and freezing at the same time? How is that possible? The cramping, twitching, stabbing, tearing in my feet and legs is like they have a mind of their own. The oversensitivity of my chest makes it SO hard to deal with the pressure of even the most light weight shirt.
I am thankful that I have a break in the nausea! And the emotional roller coaster appears to be letting up a touch…after a horrific morning yesterday! I am still not able to really focus on anything….my lack of focus is much more than Fibro Fog.
It is strange…and I am sure that it sounds almost impossible to an “outsider”…to someone who is not living with chronic health conditions….that we CAN tell the difference. We can discern the symptoms that are caused by our conditions from those that are caused by the withdrawal…even though they are heaped on top of each other…jumbled together. It can be hard to verbalize…to describe…
During this second week, I have been attempting to do more research…more review of Cymbalta. It is amazing to me at the lack of true testing…true review of what this drug actually does to our body! And seeing repeatedly, that the company did not conduct studies of withdrawal beyond the two week mark, is incredulous!
Our society is being brain washed into thinking that there is a magic pill or some secret cure for everything. The cold hard truth…the truth that those of us with the chronic conditions/illnesses know…is that there is NO magic pill…there is NO secret cure! We DO hope that more research will be done…that some day there will be better understanding, a better treatment.
We must work diligently with our medical teams…make the tough decisions with them and our families as we determine which treatments are the best for us. Each of us is unique…there is no “one size fits all”.
Now to continue my fight…to get through this withdrawal period…however long it will take…
It has been a while since I blogged….time has gotten away from me! With my body adjusting to the pain med which has taken a slight edge off (yeah!)….extreme brain fog…registering our son for 8th Grade (YIKES)….and going out of town for a long weekend….followed by the inevitable “week after”….LOL
The pain med did help with the usual increased flare that follows the time away. I found that I was more tired and dealt with much more nausea than I have in the past. My body was very heavy and tired…
I had a follow up with my pain specialist…we have established the next step! I will continue to use the pain med as a “band aid” until I can get in for a trial to see if a pain pump (Targeted Drug Delivery) will work for me.
I am anxious yet ready for this next step. The risks of the pain pump are outweighed by the benefits….the idea of not having my internals in distress (just part of the necessary side effect of the pain med) is huge since my IBS-D and overly sensitive intestinal tract are not pleased….
I am gimping along with the great suggestions from my GI Specialist and my Low FODMAP diet…it is just nice to think there could be an option that might work for me!
The reality of living with a chronic condition like Fibromyalgia/Polyarthralgia/Chronic Pain Disorder/IBS/etc. is difficult to explain to someone on the “outside”….someone who is not dealing with our day to day battle.
The past couple of days (including today), I have been dealing with the overwhelming fatigue that attacks for no reason! The kind that makes it virtually impossible to keep your eyes open. Going to bed early…taking a 3-4 hour nap….then able to go to sleep early….to sleep in and do it all over again! Taking SO much effort to just open eyes and get out of bed.
My body has been so achy….so heavy….so tired! Thankful for the pain medicine that has been added to my arsenal…imagine how bad I would be feeling without it!
My body has been running the gamete of symptoms though…..the aching, stabbing, throbbing, cramping, extreme weakness, severe Fibro Fog, numbness and tingling, insomnia coupled with the inability to wake up (what kind of a twist is that!)…feet aching and stabbing so bad it is hard to put weight on them! Even elevated there is no relief.
Our conditions are made worse by the fact that most of us appear “completely normal” on the outside! Would be so helpful if there was a way to truly measure our illnesses/conditions so they could be seen by our health care providers, our families and friends!
I know that I force myself out of bed each day….force myself to get dressed…even if I can do nothing more than to lie on the couch or recline in my chair….just getting dressed helps me to feel that I have accomplished something. It gives confidence!
That bit of confidence helps on days like today….when I feel that I am losing the battle! After all….tomorrow will be another day…
As I wrote in my previous blog, my Ketamine Infusion had to be rescheduled due to the change of a hospital’s scheduling.
Our son was excited about this treatment…he was hoping that I would receive some type of relief….so that his worries would be calmed…he was excited about the opportunity to go fishing with his Dad while I would be undergoing the infusion…
After his track meet, I told him that my infusion had to be changed. That we would be traveling farther for the treatment than planned…that it would be a week from today…next Friday. I reassured him that there would be opportunity to fish with his Dad at this new location….
He just looked at me…with worry in his eyes…”But, Mom….you have to wait a WHOLE other week”!
I did my best to smile and reassure him…yet…he can see the toll that the stress of the insurance/rescheduling…as well as the trip to his track meet have taken on me.
It tears my heart to see his worry….to hear him voice his concern….knowing that all I can do his give him hugs….to reassure him that although I do not feel good….that I do hurt….I am “okay”…
It is so stressful for our kids to see us hurting…to know that they can’t do anything….that is they can’t help fix the problem…
We can just do our best…to take time…a simple game…having them help with preparing their favorite meal…
And…trying to give them the chance to be a kid….reassuring them it is okay to be out of our sight for a while…to go and ride their bike….play with friends…