Thoughts on Invisible Illness

I am just thinking through some things.  This has been a rough week with much higher pain levels and significantly worse migraines.  I am struggling to get anything done and pain has been bad enough the last 2 mornings, that after taking the morning dose of pain killer, I just went back to bed until things eased up enough to be able to face the day.

Then, I somehow manage to pull myself together, go to work and appear normal enough that no one has a clue how much time and effort it took to get things controlled enough to go to work.  Below is something I wrote earlier in the recovery process from this last surgery and when the bandaging on my arm was still on and very obvious.

Written 7/20/13

Having lived with "invisible illness/disability" for over a decade, it is very interesting to watch reactions to my very visible surgery incision and bandaging.  To me the surgery was more of an inconvenience and hopefully, it will heal fully with time.  The other issues are a greater and lasting problem but no one can see them.  For the most part, I much prefer that no one can tell by looking at me that I have any health issues.  On the other hand, there are times I wish it was obvious.  When things are out of control and it takes huge effort just to get the basic essentials done I do sometimes wish others could tell.  As it is I usually end up feeling like I am failing to get things done and only viewed as lazy or incompetent rather than the reality that it takes huge amounts of time and effort just to survive. Sigh. Now that I do have something visible, it is nice that there is a visual reminder to others that I am not at 100% of health.  However, it also means I have totally lost my appearance of being "normal" for the time being.  Honestly, I am glad this stage is temporary and I will be able to go back to everything being "invisible" again.  I try to think of creative ways to deal with the very real limitations of invisible illness/disability on a daily basis when interacting with others, but have never figured anything out.  I do NOT want pity, but it would be nice if instead of being though forgetful and/or lazy, the blame was placed on the true culprit--invisible, but very real--physical illness that often compromises normal mental function.  As hard as I work at appearing "normal," all semblance of normalcy disappeared with the appearance of the first invisible condition.

Update (8/8/13):
Recovery is going very well.  All bandaging is long gone (a full week)!  I am able to submerge the incision now, so am back to swimming and other water-based pain management approaches. I am also back to being very nearly fully invisible again in terms of physical issues.  The physical therapist commented this morning that I am using the arm more normally again and not protecting it as much.  The surgery scar does show sometimes, but is much less obvious now.  Nothing else shows unless someone takes the time to watch me and how I do things. Even then, they would be likely to miss the signs because I try so hard to hide the pain and minimize its effects. 

Why do I try so hard to appear normal and keep things invisible?  I do not really know.  I am wondering if it is partially because I would love for things to be normal again?  I suspect is it also partially because I fight limitations and restrictions.  I am striving to retain as much normal ability and function as possible. At this point, the only aspect of normalcy left is the appearance of normalcy.

When thinking about the amount of energy and effort expended in just surviving daily life, I sometimes wonder if maybe I need to stop even trying to appear normal?  Just let things be what they really are. Instead, learn to accept the limitations more openly, learn to accept help when offered, learn to ask for help when needed, stop trying to do things on my own.  I am fighting this idea because I do not want attention, I do not want to be noticed.  I simply want to be myself, happily minding my own business, carrying out and enjoying my work and how it fits into the bigger picture of life and doing things independently. 

Part of me is scared.  I am not usually fearful, but I am preparing for a new school year and with several of the chronic issues not only not resolved, but flared up. I am trying to trust God''s plan and rest in what He has planned out for me. I know He knows best and I know beyond doubt He loves me and is working things out for the best. I need to trust Him and not worry.  God is good!

Update on Mayo Clinic Results

Well...I am not sure how to start this update.  I guess, first, a HUGE thank you to all who have been praying for me through the months and years.  Next, I am very grateful to have been able to go to Mayo Clinic and for their excellent care in the process.  Today was a follow-up appointment with the surgeon to check the incision.  The incision is fine and healing well!  The "scar tissue remodeling" process will take about one year. 

Then, I had a follow-up appointment with the neurologist to hear the results from the muscle biopsy and other testing.  And...absolutely everything was normal.  This was was both good to hear and disappointing to hear.  It is good to know that there is not really anything "wrong" with my muscles.  At the same time, it was disappointing to learn there is no known cause for the weakness and therefore no further insight into managing things.  I was told to continue as I have been--learning by trial and error what seems to help with symptoms. 

Honestly, I do not know yet fully how I feel regarding the news.  I have not yet fully processed things.  I am truly relieved on one hand that things are normal.  To me, this implies that if I can figure out how to help my body, that theoretically, I should be able to get things fully resolved.  On the other hand, it does mean that I am "stuck" with current situation until current approaches have more time to work and/or I figure out something else to try that helps.  I have more follow-up appointments with other providers in the next week or so.  Hopefully, between everyone, we can come up with some kind of plan to support my body and help it function as best as possible and survive the coming school year.  Eventually, I would like to get to the point where instead of struggling so hard to simply survive, I can regain the ability to thrive and do some things without so much effort and advance planning.

Prayers for wisdom for me as I move forward from here would be greatly appreciated.  I would also value prayers for true acceptance of yet another unexplained symptom/condition on top of the already existing ones.