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Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Monthly Archives: July 2014

…oh the symptoms

14 Monday Jul 2014

Posted by juliawillbefine in Daily Life

≈ 1 Comment

Tags

autoimmune disease, chronic illness, ms, multiple sclerosis, pain, pain control, symptoms

There really should be awards for getting out of bed

My pain is increasing as of late.  Not entirely sure why.  Honestly, I don’t think I’ve had MS long enough to be able to say.  It may be the crazy heat/humidity we’re experiencing, it may be that I have a small virus.  It may be the after effects of the Rituxan, or it may just be the ebb and flow of the disease process to which I am still adjusting.

I became keenly aware of it over the last two weeks.  At first it started with the numbness in my left foot returning.  It’s not necessarily an unpleasant feeling, just very strange and off putting – it has been ages since that symptom bothered me.  I tried shifting in my chair at work.  I tried getting up and walking around thinking it was just asleep for whatever reason.  Nope.  It was just numb again.  I had to remove my shoe as the tightness was bothersome (odd, I know), but I just tucked my shoe-less foot under my desk and finished the day.

I am intimately familiar with what happens next from prior experience. After the numbness comes the pain and I spend my time wishing the numbness would return.  It starts at my left hip and travels down to the numb foot.  Then the muscle cramps start in the left calf.  Sometimes I get an involuntary twitch in my left foot.  I just kick for no good reason.  Finally, my muscles all over get tight – shoulders, back, etc.  Everything feels “off” and just uncomfortable.  I can get through the work day okay, maybe because I’m distracted, maybe because I’m up and moving around.  It gets worse as soon as I sit down at night and the pain increases the later it gets.  By the time I am ready for bed, it is beyond aggravating and I can’t sleep.  I’ll lay in bed and try to read.  I lay on one side and then the other.  I’ll try my back.  Nothing is comfortable at that point.  I am a girl who needs her sleep and this is when the frustration really sets in.

To compensate for the pain, I upped my Gabapentin.  Not a problem, except that I wake up groggy (read: drunk) in the morning.  At least I am able to sleep.  One night I had to up both the Gabapentin and the Klonopin as I was laying in bed and could feel the muscles contracting in my calf and the foot twitching.  Again, slept wonderfully, but woke up and wasn’t able to function well in the morning.  Not great when I have to drive 30 mins to work.  Obviously increasing the meds is not good solutions for me.

Since I don’t know why this is happening, I can only try different things and see what works.  I am trying to be more careful about my diet and am wondering if my stomach symptoms can be tied to the MS symptoms.  I am taking the meds earlier in the evening hoping that I can sleep longer and wake up able to function. I also decided that I need to swim again.  Pain or no pain, I think it is the only way I’m going to feel better long term.

With that in mind, I swam three times this week.  Short visits each time, but I was happy with the effort and glad that I did it.  I always forget how much I like being in the water.  By the time I finish, I’ve “lost” my whole left foot (can make getting out of the pool challenging), but it’s worth it.  I am also committing to more yoga practice.  I’m crossing my fingers that between the two, some of this pain resolves and I am able to concentrate on life again.

My heart goes out to anyone who experiences chronic pain.  I’m a few weeks in and already feeling a bit nutty.  I want to feel better and I want to sleep, but I don’t want to drug myself to get there.  I am always open to suggestions – do others have ideas of battling chronic pain while maintaining your sanity?

Spoonie Life

03 Thursday Jul 2014

Posted by juliawillbefine in Daily Life

≈ 1 Comment

Tags

autoimmune disease, daily life, invisible illness, ms, multiple sclerosis, spoonie, spoonie life

Autoimmune Disease SnarkECard

For those who are healthy, the word “spoons” may mean little more than something you use to eat your cereal.  For chronic illness sufferers, it has a special place in our hearts thanks to Christine Miserandino from But You Don’t Look Sick.  Christine has Lupus and was faced with the challenge of trying to explain how her illness makes her feel to a friend.  Although written for her specific situation, the story has clear applications for anyone with Chronic Illnesses and has been picked up by the community as a whole.  Please take a few minutes to read Christine’s Spoon Theory.  It is a few pages long, but I promise it is worth the time.

I remember first coming across Christine’s story online and it was like a light bulb for me.  I was so excited to read it and to have a great way to try to explain how my day to day life had shifted to my family & friends.  Christine’s words speak so clearly to so many people that it has literally become a pervasive reference among those who are chronically ill.  So much so, that you can do a #spoonie search on Twitter and come up with pages and pages of results.  You can find results via Google, on Pinterest, Tumbler and Instagram – anywhere a spoonie may choose to express themselves, you’ll find the tag.

As it is alluded to in the name of Christine’s site, many auto-immune diseases are Invisible Illnesses and those diagnosed won’t appear sick, but inside they are often battling with some form of pain and fatigue.   Although I firmly believe that most of those with a chronic illness don’t want or seek other’s pity or sympathy, I think the Spoon Theory can aid in bridging the gap between the chronically ill and the healthy, providing much greater understanding and helping everyone to take advantage of the remarkable power of empathy.

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