Hey there WildeKats!
So last week I went to a friends dorm with every intention of posting a blog post about coping with stress and a chronic illness. Well–aside from the wifi issues and the few very cute distractions we had–I didn’t feel as if I had enough to write a post over. So I’ve been tweeting and asking my fellow spoonies for help. I don’t really cope with pain. I ignore it until I can’t any more, take my pain meds that only help a little then pray for sleep. This past week, that hasn’t worked.
I was hit with a flare pretty hard last week and I’m still in a lot of pain. I had an infusion about a week or so ago so my doctor doesn’t want to give me any more steroids. She upped my anti-inflammatories and gave me some mild muscle relaxers to help me sleep but I wouldn’t say any of it has really helped. Yesterday my family celebrated my birthday (I’m a whopping 23!) and I could barely function. I let the five year olds blow out my candles then I perched myself in my grandpa’s old recliner and played the Witcher 3 until I just couldn’t any more.
My mom drove me home, but I haven’t been able to sleep so I’m just sitting here reading fan fiction to distract myself. Later today I’m going to home depot to acquire some mattress foam, I may also try a bit of shopping to lift my spirits. Elsa is going with me, we’re spoonie buddies so she’ll be there to force me to leave if I get too tired or anything.
What really makes me mad though is how many people still just don’t understand. Mac has been great, but sometimes he just doesn’t get it. I can’t expect him to fully understand, but if I’m puking in the toilet, I don’t wanna take selfies, sext or even talk to you really, nothing personal but that’s just how it is. And during flare ups, I prefer to be in the care of either Anita, Elsa or one of my sisters because they know what to do, and they know my pain levels. I’m hoping Mac and I can get there some day, he comes in handy though when it’s just my dad at home and I’m stuck in the tub. I went to church yesterday to absorb what comfort I could and I just got so many comments, I was bewildered. I showed up with a blanket and a pillow, I was in a yoga skirt and vans. The pews at my old fashioned church are made of wood, I needed the pillow to lean on and the blanket to keep me from shaking. Older people always prefer it so cold and my poor fingers just can’t take it. Aside from my casual dress, I had family members and church family members asking me if I was planning on taking a nap during the ceremony. When I was at a loss for words, my mamaw set them straight.
But what erks me the most is that my mamaw has lupus too. She went through the same thing, and still sometimes has to bring a pillow to sit on. Yet they still made comments when I couldn’t stand to sing or wouldn’t allow any one to hug me. My mamaw of course was my body guard, she told every one of those judgemental, nosy Christians that I had been diagnosed with a chronic illness and that they needed to mind their own business. GO MAMAW! My Papa also cleared me a path out of the church so I could beeline to my car. If I living with Anita doesn’t work out for any reason I’m moving in with them LOL, or at least that’s what they told me. I love my grandparents so much, between them and my friends, they’re the basis of my support system.
I was feeling terrible on Saturday but I needed to wash clothes–bad. So my mamaw coaxed me into coming to her house where she helped me wash my clothes, sheets and towels and she also fed me soothing, non tummy hurting food. She may have also found out that I’ve been living off of peanut butter and cheese again–which are both flare foods for fibro people–and forced me to eat a nice home cooked meal. Peanut butter and string cheese seem to be the only two things I can eat without throwing up most of the time, but there is no arguing with the Mamaw. She also bought the Witcher 3. So I played the play station, propped up on several pillows and a heating pad while my 65 year old grandmother with lupus, sjrogens, Rayanauds, sclerdoma, COPD, Gerds and several other autoimmune disorders, force fed me home made vegetable soup, did my laundry and basically babied me all day. I loved it. But in the end I opted to go home to my bed where I could wallow in misery in private. But she was there at church the next morning to shoo away anyone who questioned my odd behavior.
This woman is basically superwoman. She has raised three kids, ten grand kids, and six great grand kids all with several autoimmune disorders. Mamaw takes care of m papa with grace and flare–even when he’s being onry and annoying. She cooks almost every Sunday and hosts a number of people. She’s there during the week for soccer games, football games, plays, girl scout meetings, pep rally’s or random lunch/shopping dates. She randomly puts a twenty dollar bill in my wallet because she can, splurges on expensive gaming requirement to lure me to her house and also does every thing she can to convince me to live with her so she can take care of me. This woman has been there when my parents weren’t, she has a million grand kids to take care of and she manages to be there for me and for everyone else. My papa is great, and I love him to death, but even he would agree that Mamaw is the definition of a super hero. She doesn’t curse, use harsh words or hold a grudge. She is kind, forgiving and everything a grandmother should be.
She is the reason I have made it this far. I love her so much.
Ok, enough rambling. Next post I’m going to talk a bit about the ending of ME3, hopes for Andromeda, For Honor and The Witcher Games.