Coping with Stiff Person Syndrome

[Sunshine]

Hands just seeem to be dropping stuff more than usual. This is disease progression, I am sure of it. Oh well.this on top of increased leg spasms.

I have discovered how to mentally separate my soul from my body. When I have pain, or anything that happens with symptoms, I tell myself my soul is whole and fine, it is only my souls vehicle, the body, that is crippled. This helps me preserve my self, and feel less overwhelmed.

In moments of catastrophizing, I Shhhh Shhhhh Shhhhh quietly to soothe myself, like a parent does to a crying toddler as she rocks her or him. It can help to stare at something cozy at the time.

[Sunshine]

My newest coping tool is to look at my new life as a giant video game. The rules are constantly shifting, you try to go this way, the path is blocked, you fail, you have to try several directions until you succeed and hit the next level.

So, cooking in my new kitchen is a series of constant failures, looking for pots, sitting down quickly , trying to get off a lid from a container in the fridge before the legs stiffen, quickly spotting where my seat is just in case. WIth victory, I have reached the next game level and there will be challenges there too.

[Sunshine]

Coping strategies are less effective the past week with increased mobility issues, going backwards in terms of being able to stay on feet as much.

Will see PCP this week to be sure that the UTI is not flaring up again, since this was what caused the flare up of SPS last time.

Readers with SPS , I am sure, will relate to the relentlessness of this disease and its attendant emotional and social consequences, which are as awful as the disease itself. Or almost as awful.

I don’t know how people without a spouse or family members around, cope with this.It is the only thing that keeps me keeping on.