I was thinking about writing a post today about all of the issues I had over the long holiday break due to my stupid autoimmune disease. But when I sat down to start writing I had a vague memory of one from last year. So I looked through my old posts, and sure enough there was one from last year (on Dec 2nd and this one will be Dec 1st). So I read through it so that I wouldn’t be repeating the same things that I wrote about last year.
But then I realized it was absolutely freaking identical! Not “similar” – but identical!
Last year I talked about the difficulty of putting together shelving for my daughter. I spent much of this year’s Saturday afternoon putting together IKEA shelving for her to hang on her walls. (What is with my daughter getting new storage at Thanksgiving – what are the odds of me doing this same activity two Thanksgiving breaks in a row for her?) And yep, I had the exact same motor skill and hand weakness issues putting it together as I did putting her closet storage together a year ago. But yet I had the exact same “it’s a matter of principle – I’m going to do this – I’m not going to ask for help or admit that I’m struggling” hard-headed attitude that I had last year.
I talked about my difficulty crumbling cornbread for the dressing for dinner last year – same thing happened this year and it may seem like such a small, inconsequential thing to experience yet it just hits me hard.
Last year I experienced difficulty putting the hooks in the new decorations for the tree. This year I had the kids decorate the tree while I helped my dad hang the cabinets on the wall in my daughter’s room (there’s no way I could lift and secure them to the wall – disease or not – so I always call dad when needing help with that kind of stuff…he can’t really ever say no to my daughter so it works well!) So this year’s story is slightly different – last year it was tree ornaments, this year it was the new outside lights and putting the bulbs in the holders and hooking the holders onto the gutter above the garage.
I did have a new experience to add this year that I didn’t write about last year – the kids and I cleaned the house for 4 hours on Wednesday before they went to their dad’s for their holiday time with him. That 4 hours of cleaning (I did 1 bathroom, vacuumed the hall, my daughter’s room and my room, did some laundry and helped my daughter in her room) resulted in so much pain and fatigue that it made the rest of Wednesday and all of Thursday one huge pain-filled not-much-fun-at-all time.
So why am I writing a post that’s basically repeating the same story from last year? For a couple of reasons…
1. It shows just how little my struggles with the physical aspects of my disease have helped in an entire year. I’m still on the same meds that don’t work. Still not with a doctor that I’m satisfied with (cautiously optimistic for my trip to Philly in 2 weeks). Still having all the same symptoms and problems. It’s pretty darn disheartening to know that I’ve spent another year of my life dealing with this disease and I’m no better off for the struggle. It would be one thing if the struggles were getting me somewhere – like how you struggle to start a business or lose weight or raise a child – those things are hard but at least you can see progress from one year to another and know that you’re moving in the right direction. But I’ve had to struggle with this each and every day for the last year and am absolutely in the same place I was then.
2. Not only have I not gotten any further in my physical struggles but I’m also in the same spot mentally – still stubborn and doing things on my own to the point of hurting bad enough to cry. But the only other alternative with the shelves was to wait until my husband got home from work and ask him to put together the shelves but he worked all day, had homework to work on and also carries a larger-than-normal portion of the household duties. I don’t want to ask him to do one more thing that he doesn’t really have time for. Same with the outside lights – I did it with the kids while he was at work because (1) the weather was amazing – 65 in December in Kansas and we couldn’t pass up that opportunity to hang the lights and (2) my husband was at work all day and has enough to do when he gets home – I didn’t want to push that on him as well. I could have asked him to help make the dressing – he was making the turkey and we were both cooking…but it’s my family’s recipe (if you can call “add poultry seasoning and sage until it’s about the right color and it tastes good and just keep adding broth until it looks right” a “recipe”) and dang it, I want to contribute SOMETHING to the meal. I used to cook about half the time and now I only do so about 1/10 of the meals – I wanted to do something for our holiday meal. And I was so tired and in such pain from cleaning the day before that it was literally the only thing I did all day – that was the most I could manage – crumble some cornbread and throw in 2 spices and some broth and get it in the oven.
I’m already asking so much of my husband and kids to pick up the slack for the many things I just can’t do. I feel so guilty asking them to do so much more than their fair share that I push through things that I know cause pain and fatigue because I have to do SOMETHING…I can’t beg off of everything.
Realizing how little it’s all changed in an entire year is so very frustrating. Ugh!