A thoughtful place for me to come and share my struggles and accomplishments as a mom with multiple sclerosis. I am an optician and a weaver who loves music, dance and laughter! I have a bright and intense 6.5 year old son and an active and outgoing 3.5 year old so I am often trying to find a way to live the life I dream of, within my physical limitations.
Time slows down so much when I'm in pain. It's kind of amazing to think about really. I'm struggling. A lot. Thankfully I've been able to distract myself with the purchase of a new loom which has me very excited but the pain and fatigue are really wearing at me. My weaving is slow and painful so it's not serving as the distraction I usually use it for. I can even concentrate on my book or TV for long. I'm sure knuckling it until Monday at 10:30 when I see the neurologist. I'm really counting on another dose of steroids to move this along. On a positive note I'm now really looking forward to move ahead with a long term treatment. This is also making me reevaluate lots of things I've been taking for granted. Anyways this has helped me through another half hour and I'm looking forward to a good night's sleep.
So I emailed my neurologist about all my new symptoms and the fact that I'm still struggling. First can we please take a moment to celebrate that she emails!! So freaking helpful! Anyways, I told her my symptoms and she thinks I'm having another relapse! Ugg she also said if it's just numbness than we won't try more steroids. It's more than numbness and I'm struggling (this is not something I say except when I'm really really struggling). Anyways, I tried to make that clearer on my reply email but she's going to try to see me at the UBC clinic on Monday. Fingers crossed that I can get an appointment and get some help. Now to obsessively think about why the hell I could be. having 2 relapses so close together and what the fuck in going to do if this is the beginning of my decline already! I've been counting on being healthyish until my late 40's at least so this could seriously throw a wrench into those plans! This is one of the hardest parts of …
Tired of fighting.
Tired of feeling.
Tired of 'fatigue'
Tired of pain.
Tired of faking it.
Tired of not being able to walk.
Tired of having to ask for help
Tired of not playing with my kids
Tired of complaining all the time
Tired of comparing myself to others
Tired of feeling like a failure
Tired of acting like I'm tough
Tired of not feeling successful
Tired of feeling like a bad parent
Tired of feeling like I should do better
Tired of feeling like I should do more
Tired of feeling lonely
Tired of economic insecurity
Tired of uncertainty
Tired of fear
Tired of not being able to be myself
Tired of not being able to dance
Tired of not being more for
Tired of not feeling worthy
Tired of feeling inadequate
Tired of being sad
Tired of MS and trying to put a spin on it!
All of that and I still have so much to be grateful for. Tomorrow I'll try to return to gratitude.
So all that improvenment has ended with me slidding backwards again. I never got back to 100% (maybe 70%) and now I'm slowly slipping back down. I have zero idea what is going on and that is not fun at all. I mean given how long I've had ms I am realising that my flare ups have been few and far between so I have no experience in what to do when things chsnge. I will aim to get back in to see my neurologist for some answers.
I have lost feeling on my left side. dexterity an responses are also decreased. I'm still running really low on energy and napping often. I had just been working my way back to a regular work schedual too! Frustrating. Interestingly I also seem to have cog fog this time which wasn't there in September. I'm really tired of feeling like a yoyo and fingers crossed that I can get back on track.
You see how it is? I start to feel the tiniest bit better and no longer need to pour my soul out to the folks out in internet land! Okay well not entirely true. Some of it has been that I simply have had less time but most of it is that I don't find it nearly as easy to talk about myself when I'm not actively struggling with a full blown relapse! I'm still not feeling great and I'm not back at work full time yet either. I'm hoping that this week will be my turn around week but I'm not holding my breath. I came here with a specific post and I just really quickly want to talk about what not to say when someone is struggling:
If you just lost a little weight- seriously? now just isn't the time. It may never been a 'good' time but when I am struggling with basic self care weight loss isn't even on my radar.
If you just went out more. No it doesn't work that way. I know some diseases and disorders get better when you push but I'm usually in a…