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.
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It feels like such a long year! I still don't feel like myself. I'm feeling run down and haggard. I wish our situation was one where I could stay home and care for myself better. My eldest is struggling and it's an added burden that is maxing me out. I need to get back to taking care of myself physically but I don't know how I can possibly fit it into my schedual at present. I'm working hard to increase the type and quality of food made at home which is huge since I haven't been doing much since I started feeling MS-y. I keep hoping that I will just snap out of it but that doesn't seem to be happening. I'm not sure what my next steps are but I'm going to keep putting one foot in front of the other until I make it somewhere. Today I got out of bed and had a shower, go my kids fed, dressed and off to school. I've worked a full day of work and will soon be going home. Once home I will do a bunch more stuff like feed myself and get ready for tomorrow. Maybe I'll change the laundry over, make dinner and put my feet up. I'll make it through today and face tomorrow tomorrow.
It's back. I've been hoping and praying it was something else. Anything else but it's not. My body isn't working. I'm not giving up but I sure am struggling. I'll try to get videos of me walking or climbing stairs as those activities show so clearly where I'm at.
Devin kindly helped me get a walker today. Xpresso bahahaha who thinks these things up? Anyways I'm feeling way better knowing I can make it out of the house safely and even with kids because they are easy to push on the seat if needed. I'm hoping this will be the encouragement I need to get walking a bit more. I'm also going to be making some doctors appointments. I'm hoping that the neurologist will prescribe steroids again to get me back on track as this has been lingering a while before I finally admitted to myself that this is ms (okay okay so that was kind of last week and is everyday but that's where I'm at). At least my kids love it? Lol
Currently I'm trying to…
OMG people actually come here and read this!! Lol I'm trying not to let that have an impact on my unstructured rambling and cathartic release. I saw the neurologist today. It's so amazing to have trust in my doctor! I can't even explain how huge that is. I had some bad experiences in my first few years. This Dr has now seen me both healthy and sick. That's huge in this situation. She's prescribed me steroids to help encourage healing. So I'm going to take a couple days off from work to let the steroids do their job. Her and I also discussed trying another long term disease modifying drug. So I've asked her to start the process and if pharamacare agrees to cover it then that will be my next step. She's also going to say me up as a patient at the ubc ms clinic which means more resources when I have a flare up like this. So all positive things. If course I managed to screw up my parking and got a parking ticket but other than that all positive 😉
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 …