MS Mom

I made it! I'm exhausted. My mood seems to have stabilized. I'm feeling extremely grateful for so much. I had meals and flowers delivered, messages and phone calls, help with home projects and above the rest a drug that helped! I'm not 100% not even close. I spent the day resting,  napping and could easily have slept more. I'm working a couple days this week and am confident that it will be easier than the last shift I worked. I'm sure it's going to all be a challenge. I'm not planning much in advance at this stage. I'm going to try to reduce my hours at work enough so that I can get back on track. It's written down so hopefully this keeps me accountable. Being home and spending time with the kids had reminded me how much better I am when I slow down. I really hope I can do this more. My MS diagnosis has so many levels, it is always this reminder when I'm doing to much. Like punctuation. It's a full stop. Okay I really wanted to write more ...

I've now taken 5 doses. I'm pretty convinced that is helping. I'm pretty wiped out but I'm grateful that I'm improving. I've got one more dose tomorrow morning and then I'll try to work on getting better. I'm trying to plan ahead a little. I'm going to try to commit to more exercise strength training again. I'll try to update more tomorrow. Right now I'm beat. Love and light. Morgan

Oh man looks like I could update the blog hour by how on this one. Yuck. These are no fun. I'm going to continue to tough it out the best I can but I'm grumpy and uncomfortable. Oh my gosh is also my birthday! I'm celebrating 35 years and returning to a state of health!  So much to be grateful for my family & friends, sportive husband fulfilling artistic outlet and great boss and job, affordable housing and great neighbors. 💕 Morgan

So I jumped in and started steroids last night as soon as Devin picked them up for me. It's s huge handful of meds but it's only 6 doses so it's not bad overall. I'm certainly experiences side effects, my fuse is short and my body feels like it's been plugged into some kind of weird and unpleasant energizer. I feel a bit stronger and am in less pain this morning and even managed a walked after school drop off!! Yahoo! That feels huge (I used the walker but that's still a big deal). I'm so grateful for all the offers of help and support coming in from all over the place. Totally amazing. A friend even dropped off a meal for us yesterday which was an amazing surprise! I'm feeling very optimistic after seeing the doctor and developing a plan going forward. I sincerely hope that I will carry on in this direction without much drama but I'm trying to keep my expectations low in order to reduce any possible disappointment. Morgan

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 &#12852...

Today was the start of school for both kids. This is excellent is so many ways!they are both reasonably excited about it. Me not so much. It meant facing big groups of people without a disabled parking permit (fuck why did I left that lapse?) and with my walker. That means lots and lots of looks of not questions. I'm feeling way too raw and vulnerable for that atm. I have no idea how one answers this looks and was wishing I had a shirt that said something like 'this is ms'  or 'this is what ms may look like'  or something along those lines. The kids part when really smoothly and I managed to organize raiser drop off with Aidan's daycare people so that will be extremely helpful! I'm at work and am totally unable to say even hours into it if I'm able to do this! It's exhausting and is an emotional roller coaster ranging from I'm strong I've got this to (more often) OMG was I thinking and there's no way I can do this! I see the neurologist...

This is the great thing about the blog. I can come here and said what I need to say without worrying about the reader not being interested (not because u don't care about you dear reader but you're faceless to me which helps). I can also keep coming back to whine about how crappy I'm feeling as many times a day as I want! Freeing really! I rarely complain and actually have a hell of a hard time talking about myself and asking for help when I need it. I'm sitting here dreading going into work tomorrow. I'm just not up for it but don't have the heart to not show up. It's an extent small operation and I made commitments to my boss so I'm going to try to keep them. But I'm tired. Not like I need a nap tired but a bone weary kind of tired that doesn't stop. I'm in pain, like nerve pain that feels like my limbs are on fire, my back is killing me and I have continuous muscle spasms. My body isn't doing what I tell it, I command a lab to rise and...

Yuck. Just yuck. I always forget how hard it is to deal with changes to the status quo in relation to my MS symptoms. I walk around most able to take in stride the pain , numbness, cognitive fog etc that's always with me. Then things shift and is uncomfortable. Not just physically but on a deeper level where with every breath in aware of my illness and my fragility. That wears at me more than the symptoms I think. Constantly being reminded that my body is betraying me. And it is. The stairs are my current challenge as I have to climb them many times a day and my leg muscles simply don't do what my brain asks of them. Simple commands to lift up and put down each foot & leg are misunderstood. My heart is willing but my body isn't able to make it happen.

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...