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…
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 b…
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.
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.
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 😉
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 an…
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…
I'm taking some time off from work this week. Not 'for' myself but by myself which seems pretty close these days. I am hoping to get caught up on the huge stack of to do's at home. Maybe rest. Maybe hang out with a friend? See the chiropractor? I have to see some professionals about my son but I'm really hoping that getting him some help is going to also result in things getting easier for me longer term.
My body is still misbehaving but I'm wearing a compression belt and that seems to be helping slightly with the pain. My arm is still numb and that's going on 3+ weeks? Ugg so distracting. Oh and my foot is dragging. Another constant reminder of ever present illness. I just want to be normal! I'm tired of having to be stronger and more resilient than everyone else. Okay not everyone but fuck it sure feels that way some times. Thank goodness I have a few people in my life to remind me that I'm not alone in living with chronic illness. Having good peo…
Day turning into weeks turning into years. It's all going by so very fast. My self care has been slipping and I can feel it. I need a break so badly. I'm just maxed out. Tired run down. Worn out. All of that. I'm taking a few days for myself next week. I will of course still be weaving but thankfully that still doesn't feel like work. My body hasn't been cooperating with me and I'm pretty sure it's just screaming out for a break. My left hand and arm are numb and Pain and numbness are plaguing other parts of my body. The heat is not my friend so I'm a hermit on my days off. I'm mourning not being able to get out to enjoy more of the summer with my kids. I miss them so much when school is on but when we're home together I have so many things I feel need to be done. It's hard. Balance is hard. I've been working 2 jobs for 2 years so it's not really surprising that I'm beginning to hit the end of my stamina. I feel like Vancouver is…
I'm still here plugging away. I'm exhausted and kind of spacey but I'm here. I am looking forward to a long weekend with my kiddos and hubby. I'm really hoping we can just hang out and enjoy one another a little bit. All too often I get caught up in all that I feel I need to do and forget to just be. But not to worry I have been making time for other enjoyable pastimes! I've been working away on some weaving projects, trying new things (just ordered a bunch of fancy cotton yarn to dye and sample) and exploring the medium while my body permits.
I haven't been sleeping well and my mood is all over the place. I've stopped taking Aubagio (MS medication) and am starting to feel like that was a good choice. Of course that comes with the responsibility of thinking through my other drug options. My body is not responding well to our recent heat wave and without AC in the car I have been struggling. My body sensation is low, which means movement is a bit of a strugg…
So typical for me. I started writing and couldn't stick with it. April was so busy, for so many reasons. I haven't been feeling 100%. I'm trying to sort out if it's medications or just MS flare ups. I started Aubagio for my MS in January and so far things seem mostly okay. I'm going to aim to keep up with blogging for myself so I can look back on day and remember some of these little concerns I had. My memory isn't what I'd like it to be and it seems to randomly select what it wants to retain.
Big is in a new before and after school program. Little turned 3 last month. I'm struggling with the desire to have more kids. I know I just don't have the energy or wherewithal to manage a third but that desire is there. If we come into a bunch of money I suspect I'd dive in. Though I say that knowing that the medication I started means I should conceive for 3 years after stopping the medication! So yeah not a high chance of a third biological baby. Besi…
Second day in a row writing on the blog? Not sure I'm totally commited but I do know that this has always been a great outlet for me to get things in my brain going. I've been juggling too many things at once and this is that moment when I realise it and likely try to let some down slowly.
I have limits. I have built in safe guards. My body no longer lets me abuse it. I have totally unrealistic expectations of myself and I think I'm going to have to work on accepting that once again. I can't be super-human not matter how hard I try.
Next step trying to sort out how the heck to make things around my house work without my super-human attitude. I always get sucked back in thinking I 'need' to do things. My big kid is struggling in school and this is stressing me out. I am not sure at all what the best course of action is for helping him and the struggle is so darned stressful. I obviously want him to succeed and to feel good about himself. I feel like I'm devo…
I had a close friend tell me she missed my blog. I also miss taking the time to write about life and parenting but I often feel like I'm short on subject matter. Thanks to this dear friend I realized this is not the case I have been having so many struggles trying to maintain the delicate balance of working (2 jobs), parenting, caring for our home, maintaining friendships, remaining in my marriage and caring for myself. I don't think I would change many of the choices that have lead me here and I love so many aspects of my life and feel blessed often. That said I'm also so damned tired. I am running low on energy and am tired from all the juggling.
I also realized I hold myself up to a really insane standard! I never accept that my parenting journey looks different. Okay fine not never but I often forget that the gauge for me with a disability is different. I don't sign my kids up for as many activities as I would like. I don't have extra energy to do the things th…