Truthful Tuesday: Regression and getting a foot hold again

I was really starting to feel like my old self.   My husband and I were communicating, work was going well, I didn't feel burdened by outside pressures and things looked like they were coming into focus.  I was able to start looking at my future and I was feeling confident, secure in the way it was heading. 

Was I where I wanted to be? Was the journey over? No, but that oppressive, I'm never going to get there feeling had shrunk into a quiet whisper in my head that I could watch say what it was saying and I was feeling detached, like it wasn't me, but some weird movie my head wanted to play and thought I should buy into.

Then if you've been reading my other blogs, the Chapter blogs, you will have seen that we've been dealing with my youngest sons walking issues and haven't really known what has been causing it but we were chasing down all possibilities.

When I was given his diagnosis, of CMT I thought my heart was going to break.  Guilty thoughts washed over me, wave after wave as I tried to figure out, what had happened, what had we or more specifically I done, and the hardest, how had I missed this?

I rarely turn my back on my children when I am feeling emotional, I believe they need to see that display emotions is normal and accepted so that they aren't afraid to show theres.  But when the doctor gave us the diagnosis, I turned away from Teddy so he wouldn't see me crying.  His dad had him and for 20 minutes or so I just kept behind him or turned from him so I could shed my tears and not have my three year old worry about something that didn't change for him.

I walked out of the hospital and I typed up a facebook update on the status of us being in Edmonton to see the neurologist.  I let people know we'd received a tentative diagnosis (I was still not accepting this completely, that there was nothing I could do to fix my baby) and that we were going to get through this.  I didn't tell anyone on there what it was because we needed to talk to our families first and give them the news that way. After that status I sent a couple texts to some good friends letting them know the outcome of our visit, each time I texted the outcome a fresh wave of tears would fall from my eyes.  I could not stop crying.

We made it to West Edmonton Mall, because Teddy's Gunky from Build a Bear needed some surgery and he'd been sitting in the closet before Christmas in the need of surgery. So we fixed up Gunky and then headed into the mall to get something to eat.  I don't think any of us wanted to eat but we felt we should because it was lunch time and, well it was lunch time.  We wandered around the mall a bit, bought some games for family game night and then we headed home.  I was distracted in the mall so I was mostly able to keep my shit together.


The next day was March 1, and I had work.  I got up in the morning and thought "yeah the distraction of work will be good." then I started crying anew.  So I headed in, cried in the office and then talked with my Principal about what was going on.  I told him I thought I'd need a leave of absence and wasn't sure how to go about doing that.  He let me know to just go see my doctor and they would take care of the rest on this end.  I then went to my room and created sub plans for the one day, ran up to the clinic and made an appointment, then I went home and crawled into my bed.  At my doctor's appointment I ended up in tears and got a prescription for anti- depressants (which I haven't filled at my Drs suggestion) that were just for in case I felt I got worse, and a note that took me off work for 2 weeks.

The first few days were simply a blur, I was upset and crying and trying to find distractions.  I started heading to the gym to work out, because what else could I do?  I had time and I don't watch that much tv so I needed something to fill the hours while my sons were at daycare and school.  I also made plans with my girlfriends to go out and let loose.  I know drinking while you are depressed isn't usually a good idea, but I needed to get out and for one night unwind and not worry about what the heck was happening in my life. 

I have since spent my last two weeks, as I write this, this is my last day off, I have been very good to myself.  I have gone to the gym regularly, I have be conscious of what I am eating and I haven't done a lot of binge eating, I have taken time to do things I love and I have spent a lot of time really formulating my self-care plan that I require to be healthy both physically and mentally.

This self-care plan involves many things. One I need to stay physically healthy so that means eating healthy and exercising are a priority.  Two I need to have more time to relax and unwind not just moving from one activity to the next and collapsing into bed super early because I am tired, but then laying there until 10 pm before I fall asleep.  So this means having more bubble baths, getting pedicures and massages, having dates with my boys.  Three I need to develop my support system, most of my friends have kids that do not have disabilities so finding other parents in this community for this specific disease and others is on my list.  Going for walks and walking my dog are also now a priority, this fits with exercise and eating healthy, but it's getting out into nature that I love and feel is extra important to my overall health.  I'm also setting mini goals for myself, goals that are obtainable within a month to six week time frame, so I can reward myself for changing my focus and trying to be extra god to myself so I can be extra strong for my family and boys.

I currently feel like I am back to where I was prior to the diagnosis, and that's a good place to be, I have lists made so I know what I need to be doing and focusing on. I feel in control of all the things I can be in control of.  I can't control his diagnosis or how CMT is going to progress in Teddy, but I can control how I set about plans of actions to ensure he is getting the most support he can get while still having him be independent and trying all the different things this life has to offer.

Thanks for reading to the end I know these posts have been pretty wordy as of late!!

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