– to say the least!!

Anyone who lives with a chronic condition that can rear its worst ugly head at any time often unprovoked in a seemingly random fashion will appreciate what I’m talking about. Am I doing all I wanted to do for Lent? Or anything else, for that matter? No and no.

The last months have been difficult. After my dear husband Steve’s death, I entered  a long period of changes, decisions, activity when able, sometimes very physically challenging. A few months ago, I suddenly felt I had hit a mental and spiritual brick wall. The brain just did not want to engage. It wasn’t like depression, I know well what that is, I just could not put my finger on it. Talking it over with a wise friend, we realized I was tired – mentally tired – and the solution had to be small steps, prayer, and time.

I’m beginning to do a bit better now – but am also grappling with another situation not of my own making. As many of you who live with chronic pain know, the FDA in its infinite wisdom stupidity has pulled off the market a very old, reliable, and relatively mild pain relief medication. Don’t give us the facts and let each patient and doctor weigh the risks for each individual and let each individual decide – NO! – can’t have that going on! Those of us with FMS are quite sensitive to medications to begin with – so having to change to a stronger med can be a problem. Most of us also prefer to only take something when absolutely necessary – we tolerate a certain level of pain every day. First med the Dr. and I tried had side effects that were intolerable. Current med requires one to keep a certain level in the bloodstream – it will not be effective if one takes it when the pain is really high – great – now I have to take pills at times when I would have toughed it out in the past. I’m not happy. The whole pill dose in it’s lowest amount had bad effects. So now the experiments begin – the tablets can be cut in half so I am trying a half dose and extending the time between. Monday I was still suffering effects from the higher dose – yesterday, brought major Fibro Fog – Who am I? Where am I? — best not make any major decisions. (Sigh!!) Most likely not from the meds – but from the FMS itself – or not, time will tell.

Today, I finally feel OK – maybe the half pill formula will work – hope so.

I talked to my friend about the frustration we all feel when we are simply unable to do that which others can take for granted – I find this particularly difficult when it affects my spiritual life. Sometimes, I’m not sure what God really wants from me – what will please him – how can I show my love – and then I get into that place most of us know well, because most of us are Type A personalities – so the self questioning and self doubt begins – Am I really not able to do more? Am I just being lazy or taking the easy way out? – and on and on – until we come to our senses!

My very dear friend thought about our conversation and the other day she brought me a piece of writing she did for me – she has given me permission to post it, but wants to remain Anonymous – so here it is, hope it helps you, too – it came straight from her heart:

God calls us all in different ways. To some he gives more work than others. But I think we are all given challenging times in our lives. Now, how to handle it?

First, we need faith. We need to believe that we will make it to the end of the “yellow brick road” or whatever brick road we are aiming for – the afterlife. So, ya gotta believe that whatever comes, we’ll get through it and move past it (Faith).

And, there are some conditions of life that are chronic and aren’t going away, This situation is particularly challenging and, I think, requires periods of rest and meditation interspersed with periods of action and work. Prayer is always a big help in these times. I believe we must also have faith in ourselves as well as in God. Sometimes this “self-belief” (Hope) is the hardest thing to do because we are tired or hurting or just lose our way for a time. But we must continue to look ahead. 

So I think we all must do what we can with what we have and keep believing that it can get better – move on with Faith, Hope, and a smile – not always easy, but worth the try.

May God bless all of you out there who struggle with a chronic condition that radically alters your quality of life.