Thursday, April 16, 2009

It is Finally Spring: Shouldn't I Be Happy?

Pray that your loneliness may spur you into finding something to live for, great enough to die for. — Dag Hammarskjld

It is early, my hubby is off to work and I am sitting in my adjustable bed with my dog curled up next to me. The sun is peeping through the blinds and birds are chirping right outside. Rather a Hallmark moment--as usual these days my experience is quite different. This is the fifth week of moderate to severe nerve pain in my head--I also have intense sound and light sensitivity--the sunlight is irritating my eyes and the bird song feels like tiny beaks pecking at my head. I haven't been out of the house in days. So, I am having trouble being excited about the change of season. I think I am becoming a troll--preferring the dark and cold world of winter to the relentless cheeriness of spring or the biting heat of summer.
I struggle constantly with envy and jealousy. Spring no longer means digging in the cold dirt and ripping out the winter weeds. Spring no longer means the first long strolls into the reborn countryside. This year, it didn't even mean celebrating Easter with my much loved church family. I was in too much pain to venture out for this most wonderful of days.
The ridiculous thing is that the level of pain, and noise and light intolerance make it just about impossible for me to be around other people. So, I am bored and lonely but quickly become overwhelmed whenever I interact with others.
A fellow MSer suggested my pain symptoms could be some type of neuralgia. This is nerve pain usually associated with the face--but can occur seemingly anywhere on the head. While it is nice to know what is likely at the root of this relentless pain--it is disheartening to read that neuralgic pain is pretty much untreatable and incurable. The main med that is suggested I am already taking. My neurologist isnt convinced that pain is associated with MS (no, I am not making that up) and his suggestion when I called was for me to take ibuprofen. So, I am once again dealing with an all encompassing, life interrupting symptom without any support or help from a neurologist. I remain convinced that all neurologists should have to experience MS symptoms for one week-like the pregnancy empathy bellies--a neoprene suit that causes intermittent weakness, stabbing pain, and mental fatigue and fogginess--to make it really realistic they should have to live on my income and take over managing my medical bills.
I claim and know the comforting presence of God--He is here in my darkest hours. The oft quoted 23rd Psalm "I shall fear no evil for Thou art with me..." floats through my thoughts. I can't let myself think that this neuralgic pain will never end--or that the sound of Spring birds will drive me mad--or that my response to a sunny day will always be a growl and a glare.
I choose a life lived as fully as I can. For now, I will put on my sound nullifying head phones and my dark glasses and listen to quiet music.

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