Bad Days

Having a bad day today.  When I woke up this morning I could barely move, my entire body from head to toe was so rigid it took awhile to force my body to move so I could try and get out of bed.  Thank god my husband was home he need to help me out of bed and to walk to the bathroom, I would have been unable to do it myself.  This condition can be cruel you  can be fine one minute and the next your body freezes but yet at the same time your muscles are twisting.  How to describe it... everyone has had a charlie horse  now picture your body having a charlie horse from head to toe.   Unlike a charlie horse however imagine not being able to stretch it out or massage it as that will make the pain come on stronger and last longer .  That is the best way I can describe what is happening when a person with SPS is having an attack.

The other problem I'm having today we live on a main street with lots of traffic, near a hospital so the noises from sirens, cars honking at each other and the constant beep, beep, beep of snow plows clearing the snow covered streets are causing my muscles to spasm and I am unable to calm them down.  I don't know why noise causes the spasms to come on strong and seems to never want to stop.  I have to wear earplugs on days like this, or I will sit with my headphones that have noise reduction capability and listen to music just to try and help my body to relax.  I have yet in my research to find a reason for this, they know unexpected noises can trigger spasms but as to why they cannot figure it out. 

It's hard to be a prisoner in your body,  especially a person like myself who always did whatever without giving it a thought.  Now when I do go out I have to plan it like a military strategic  plan, and I know when going out I cannot do anything but basic needs if we have a hope of making it out the door.   I can only plan on one maybe two tasks before we need to head home.  Gone are my days of spending a whole day out and about and still have the stamina to go out at night too.

I have told my husband and friends I wish sometimes my mind was failing along with my body it can be another cruel twist of fate when your mind is perfectly fine but you can no longer do the things you tell yourself you can.

The other night watching a movie I wanted to get up and get a drink I stood up but I could not move.  It's like being a child learning to walk,  I made it to my feet but I could not get my leg to move my husband told me he would go for me but I refused (I can be very stubborn) I also still believe if I walk it out I'd be fine (denial is a constant battle in my mind).  It took me 10 minutes to walk from one room to another that should take me maybe 20 seconds.  The frustrating part is my husband had to walk behind me like you do when your child is learning to walk.  He held me by the shoulders and kept me steady for had he not,  we both know I would have fallen down like a plank of wood, another cruel twist to this condition is our bodies don't have the defenses to brace ourselves if we do fall, we go straight down which is why so many break bones some can have such violent falls and if their muscles are spasming  you can also rupture muscles. 

Not pleasant....just a few examples I thought I'd share again for a better understanding of what it is like for me living with Stiff Person Syndrome.  Everyone has different experiences with this condition which can also be frustrating living with SPS, what work for one doesn't necessarily work for another person.