I’m feeling super weird and emotional tonight.
Its been a long day and I dont really know where to start. I guess I’m still processing and I don’t really know how this will effect my future. As the night goes on I’m becoming very sad and want to cry.
Fair warning that this may contain TMI for some people since it involves my feminine cycle, parts, hormones and birth control, but its something that effects my overall health and ability to function.
So, to get to it, as I’ve mentioned before I am diagnosed with Anylosing Spondylitis, Fibromyalgia, and a progesterone deficiency.
Although I had symptoms during my teens, I believe I triggered my genetic predisposition (I am HLA-B27 gene positive) when i was in my late 20’s/ early 30’s. At that time I was going to college, running a full time home daycare and raising our kids while John was working nights. I ran my body and mind into the ground.
I went to the Dr complaining of severe fatigue and “brain fog.” He ran some tests and found that I had high levels of Epstien Barr antibodies. He concluded that I was recovering from Mono and that it could be quite a while before I get my energy back. I ended up dropping classes and clients trying to let myself recover. When we moved I dropped them all completely.
Over the next couple years I would go back several times as my symptoms got worse instead of better, and was told the same thing. Mono.
I had watched my Dad struggle with debilitating pain and fatigue all my life. Everyone said he was a hypochondriac, including Drs because so little was known about these things. He ended up turning to drugs trying to find relief and it tore my family abart. But, I was starting to have to consider the possibility that I had it, too.
I had always had a rough time with my “lady cycle.” The day before I had my first period, I was in so much pain that my mom took me to the ER, afraid that my appendix had burst. I was balled up on the couch in tears because my stomach hurt so bad. At the ER they started talking about all these tests and I got scared. So, I swollowed it down and said that I felt better just so I could go home. I cried in bed that night. I was so embarrassed the next day when I started my period. I felt like such a wimp for making such a big deal over menstral cramps!
Into adulthood continued to have horrible cramps, PMS and heavy periods each month. I didnt know it wasnt normal.
I started to notice my PMS symptoms getting worse and starting sooner. I noticed that my pain and fatigue would change with my cycle, and it was getting to where I would only be functional for one week out of the month, right after my period. The fatigue would then build untill i was couch bound and drooling on myself. Not good when you have 3 challanging kids.
I started wondering if my pain and fatigue were related to my hormones. That has to be better than Fibromyalgia!
I brought it up to my OBGYN. She ran tests and found that I had a progesterone and viteman D deficiency.
She started me on a schedule of hormone replacement. It did help, when I didnt fuck it up, which was alot. I was constantly messing up the schedule and throwing off my hormones and my periods.
We ended up deciding to try the Mirena IUD. It dispenses a small amount of progesterone inside my uterus. It reduces menstral cramps and heavy bleeding and sometime stops your period entirely. A win all around!
I did have some bad cramps and discomfort at first. But within a few months I started to feel better. I had much less downtime! I was so happy! I felt like I had my life back!
Eventually I got frustrated. I was still getting flares of pain and fatigue if I did too much.
I tried changing my diet and exercise but just couldnt get to a point where I felt I could do everything I needed to do.
I could kick some ass during the day, but by the time I made dinner, pain and fatigue would kick in bad. This is when I discovered that wine would ease that some.
Ultimately. I wanted to be well enough to run my house and get a job or go back to school. So back to my Dr I went.
I was ready to bite the bullet and find out if it was fibro or not, so I saw a rhuematologist. She ran tests and took X-rays.
She told me that my symptoms (the flue-like body aches) were fibromyalgia, but something is causing it.
She then told me I have Ankylosing Spondylitis.
“Bless you?” Was my response. She repeated herself and tried to explain, but but bain shut off. All I caught was that it is some kind of auto-immune inflammitory arthitus that manly effects the spine.
Long story short, she put me on some meds. It reduced my number of flairs, muscle spasms, and pulled muscles. I saw her for 2 years before she retired.
My regular dr kept me on muscle relaxers but I stopped the other meds. I have issues with new drs, so I decided I could get by with my IUD and muscle relaxers. That was almost 3 years ago.
BACK TO PRESENT DAY
So, my Mirena was supposed to be switched out in February, but we had a lot going on at that time so I put it off till now.
Today, I went in for my annual and to get a new Mirena. My Dr got up in there and couldnt find the string to pull it out….
So he went fishing…. Through my cervix and into my uterus, without any meds or numbing. Not even an advil. He tried several differnt tools to locate it before sending me across the hall for an ultrasound.
Turns out the fibroid (tumor) that we discovered in october, has grown to fill my uterus, and pushed my IUD up to the top, and my IUD is now blocked off by this fibroid.
So, now I have to have my IUD surgically removed and I cant have another one put in.
The reason I had to give you all that history was to emphasize that I feel so strongly that my Merina gave me my life back and I am terrified of my life going back to me spending my life bedbound and drooling on myself.
My dr wants me to try Nexplanon. I dont like the idea of hormone birth control because the depo shot made me suicidal crazy.
Has anyone tried it?
Well, its been a long time since I’ve been very active on my social media. A lot has happened, probably too much to go into, so I’ll keep it short.
The school year was super stressful. As soon as school was out I felt like I could breath but I was so burnt out that I just let everything go. All of my routines and structure went out the window. I basically shut down.
The only thing that could really catch my interest was my garden (or youtube binging). But, when my fatigue kicked in I lost interest in that, too.
The kids sleeping schedule started getting too crazy, so Im trying to ease back into my routines and reclaim my house.
Im still struggling with pain and fatigue every day. I’m trying to use my gtasks (my flylady control journal) to babystep my way back having order in my home, starting with my morning routine. Im trying to go to bed earlier and get up at a reasonable time. It took a few days just to reclaim my kitchen and keep my sink shiney. My current target is my laundry. My goal is to do 2 loads a day untill I am caught up. I need to use my timer to make myself fold and put away everything that is already clean.
Once I am maintaining my kitchen, and am to a place where I only have my one load of laundry a day that is getting folded and put away in the same day, I will move on to tackling hot spots.
I’m still feeling exhausted and burnt out, but Im trying to restore some balance to my life.
I sat my family down tonight to talk to the kids about respecting my home. My fuse has been very short this week. I haven’t been feeling well. Its that time in my cycle where i am severly fatigued and in pain.
I have been making huge strides in improving my organization and household routines, but when I hit a bump and struggle, my home goes to shit.
Anyway, I sat the kids down to tell them about “my house”. It is all of our home, but it is mine and Johns house. We ran our bodies into the ground to get where we are today, everything we have, and everything we do for our kids. I dont ask much in return but to treat us and our home with respect, and to put effort into their future so they can one day have a place to call their own and to find happiness without having to fight for it as hard as we have.
One of the things im still struggling to balance in my life is my sleep and down time. I am up all night trying to wrap up my evening routines, keep the kids in bed, and feel that i have decompressed at the end of the night. This week ive been going to bed around 4 am.
It is now 11pm and i have set up shop in the hallway outside the kids rooms with my yoga ball to sit on, my phone, and a bottle of wine.
They may not shut their door, I am right here making sure they stay in bed, and i can take care of some business on my phone.
I will win this war.
I have been working so hard to bring some order to my chaotic life. I’ve struggled for years, if not all my life, just to juggle basic daily tasks that seem to come naturally to at least a good hanful of others.
Ive researched and planned and brainstormed, made lists and schedules, organized and planned some more. There is just so much to juggle and balance.
I have made a lot of changes over the years, to prioritize and manage stress.
I finally feel like it is possible. I have basically stopped looking to feel valuable by how much I can help others, and started putting that “helpful” energy into helping myself. I kept feeling like the only possible way that i could manage my life was with help from someone else., but I never realized exactly how much time and energy i was putting into other peoples lives, telling myself it will balance out. Karma will help me. But only by putting all of my energy into my own life am i finally strengthening what i felt were my weaknesses that were making me feel like a failure.
Its hard. Really hard. But one small battle at a time i am starting to conquer my life. I am gaining control, structure and order a tiny bit at a time.
It doesnt happen on its own and Im really proud of the progress Ive made.
John went back to work today after 4 months of recovery. The kids are home on spring break. I stayed up too late and slept in too long. The last few weeks my routines have dissapated. Its frustrating how they had been becoming second nature and I felt so good about it, but somehow they just fade away like they were never there. Im guessing its because i started going to the gym and focusing on my health goals. I kept putting it off because i wanted to be sure my household routines were solid. It seems fair to expect an adjustment period when adding a new element to my routines and adding in my health routines is a big one. Maybe im adding too much too quick? I tried to add one element at a time.
I think its actually because it has been hard to encotporate onto my gtasks.
When my routines were being successful, I was focusing on my gtask to do list before anything else. So i was following the routines outlined there. My focus has shifted to myfitnesspal and shealth as i watch my steps, calories burned and intake.
Maybe I need to shift back to my gtasks and figure out how to incorporate my health tasks into it more.
I haven’t blogged or vlogged for some time now. I think I felt like I was tired of hearing myself talk about my goals, and all of the things I need to do, and just wanted/ needed to put all of my energy into physically attacking them, and just getting it “DONE”!
I have gotten a lot accomplished in this time. I have conquered the overwhelming battle with the kids rooms, reorganized my walk-in bedroom closet, and took on a massive decluttering of virtually every nook, cranny, bookshelf, cupboard, closet, and drawer in my house.
For the past month or so, I have watched garbage bag after garbage bag go out the door and get donated or piled in trash cans untill they were overflowing every week.
For the most part I have struggled to be consistent with my routines, stick to the priorities that I have set for myself, and bring more stability and functionality to my life. This truly has been a challange for me. It has always been part of my personality to become hyperfocused on a project to the point of excluding anything else that needs my attention or maintenance. Every other aspect of my life would degrade from neglect, continuing my cycle of constantly having to put out “fires” that I have created for myself by not paying attention, or not “getting around to” important things because my focus was elsewhere.
I’ve been trying very hard to follow routines that take care of the important daily maintenance tasks, whether household, medical or school related, before allowing myself to spend time or energy on the “projects” that I feel the need to hyper focus on. Then, make myself pull my focus back to important evening routine tasks, so that dinner, showers meds, bedtimes, and evening chores are taken care of on time, to hold together structure and consistency. This may come naturally for most, but is a formidable feat for me.
It has been an interesting and introspective journey. At times, my routines would run so smoothly that I’d question how I ever struggled in the first place. A few times I watched myself slip into the old habits. As in letting myself start several projects before completing the first. While organizing the bedroom closet, I started reorganizing the bookshelf in the living room, the girls closet, front room closet, and supplies on my desk at the same time so that every room had an active messy project going on. I would begin to feel overwhelmed and hopeless and neglecting other responsibilities. I caught myself, and since then have been trying to force myself to be more careful about taking on one project at a time, and adhering to the Flylady zones, only allowing myself to work on a project within the designated weekly zone, and trying to make myself move on at the end of the week.
Burnout has been a constant threat. In my mind, I want to take control of my life, and keep up with my home and responsibilities like a “normal” person, and I want to do it NOW! It has been so hard to maintain that delicate balance, listening to my body, and being patient, struggling to make progress while maintaining my “battle line”, without pushing myself to hard and triggering a flare of pain and/or fatigue.
I keep redirecting myself, and looking forward to the time when I have tackled all of the big projects, and will only need to put my energy into daily maintenance. There have been many times that I have physically burnt out and had to give my body a few days to recover and just try to keep up the daily maintenance. This last week I think I’m struggling a bit more with mental burn out. I am aware that my hormones play a substantial role, however, right now, I’m feeling disheartened at the role stimulant medication has played in my progress.
My doctor has prescribed Adipex, a stimulant and appetite suppressant, to help counteract the effect of my hormone imbalance on my ability to lose weight, while I’m trying to get healthy. When I am taking the Adipex, I am amazed at the change in my ability to focus, and I’m able to push myself much more without the consequence of crushing fatigue and body aches. However, when I am taking it consistently, the severe dry mouth causes my mouth to start feeling raw and painful, so I stop taking it. I then become more aware of how hard it is to focus without feeling overwhelmed, and how little work it takes for my body to start aching and exhaustion to kick in. It makes me think of all those TV shows where the mom becomes a pill head trying to be “supermom”. I don’t want to be that person.
I do feel that it has shown me that my mind probably would benefit from being on a stimulant for.my “ADD”. My doctor has prescribed it for me before, but I never liked the buzzy crawling feeling it would give to my head. Plus, again, puts the image in my head of the pill head moms on TV.
This week I have struggled with the mental motivation to check things off my daily task lists, maintaining the peace and order I have achieved by keeping up on laundry, dishes, hot spots, and weekly vacuuming, mopping and pet stuff.
I think I’m getting used to my new normal and I’m not getting the same sense of satisfaction. I’m feeling more frustrated with the fatigue, and the monotony of the daily maintenance tasks. I find myself unhappy with other aspects of my home; The repairs that need to be done, The way we use the spaces and the effect on family interaction, lack of paint, color, photos, decor. I’ve been feeling assaulted by my nasty carpets. They are way down on the list of priorities, so I don’t get too much time to work on them, and when I do, it is very hard on me physically. Again, all things that can be fixed with time, patience, effort, and CONSISTENCY.. It just highlights the reality that there will always be a list of projects to tackle. There probably will never be a time when it’s all “done”.
Right now, my energy must go towards maintaining my basic daily routines, while making quality time and memories with my kids and husband, and supporting their academic, physical, and mental health.
I think, in the end, I am finding consistency truly is key.
I need to have faith in myself. That if I continue to fight the good fight with myself and reinforce the consistency of my daily routines, and appreciate progress without the expectation of feeling like everything is “done”, I can feel that I have taken control of my life, and finally feel “SUCCESSFUL”.