I can’t believe it’s been five years since I first signed onto WordPress!
With the holidays coming up I wanted to offer support for anyone who deals with a chronic disease. December is brutal, too often when we are told to enjoy what we have. More often than not we’re reminded of what we don’t have. Our health is a biggie here, missing family and friends who are no longer living is another. Some families just don’t get along too. Add all of that on top of media/society pressure to have the perfect Christmas, to spend money you don’t have and there’s a recipe for a crushing disappointment.
I’m at a point in life where the people make the holiday for me. My kids especially. I refuse to be pressured and I let folks know if they’re headed that way. I use to bake tons and went all out with cheesy Christmas decorating. Now it’s a much simpler approach, the easier the better. For so many years I made the holiday, now I want to just enjoy the moment.
If you are chronically ill, sick and in pain, cut yourself some slack. It’s stressful for people who aren’t sick. Rest often, if help is offered take it. I cannot shop alone anymore, bags get heavy fast.
It’s been a heck of a year so far. Recently I noticed that I can no longer stand on my right leg on its own. It gives out. I’m having to modify how I walk and move again, also stopping yet more activities. I’m not managing disease progression well, I get use to how things are then they change again. Pain levels are getting higher too. I’m not feelin this.
Went to a farmers market today and nearly tripped backwards over someones loose toddler. Yesterday it was a 3 seater stroller & loose baby. I’m becoming all too aware why you don’t see lots of disabled folks out and about. The world is a minefield of disasters that are nearly missed. Also, turning babies and toddlers loose in a crowded area is rude and thoughtless. Why should I have to watch out for unsupervised children? I told one woman off yesterday, you can’t watch your kids. Keep them home!
Between that and just rude people in general I stay home most times. I’m intolerant of the ignorance of others and tend to say something. Tired of the stupid looks and staring. I’m disabled, get over it.
I have been dealing with a really bad bout of depression lately. Unfortunately I still see ignorant and thoughtless reactions to it.
Just throwing my opinion out there but why can you no longer express emotions that are not sunshine and rainbows? I find most are extremely uncomfortable with pain. Emotional and physical. Why? Pain and hurt are normal emotions we all experience. It is quite absurd to me that human beings are so fearful of it. I don’t understand the fear of reaching out to someone who is hurting at all.
I know of many who experience depression and many of them keep silent. I understand why. People will go out of their way to avoid you and your ‘misery’. Also you’re stigmatized to high hell. Because that’s what people do to others with illness. I’ve been asked what I consider ridiculous questions. Talk to someone? Get help? Blah blah blah. I have had medication resistant depression for 35 years now. In that time frame I’ve talked to psychiatrists, psychologists, therapists and Doctors. Tried every medication that is safe for me. Crisis lines, friends and family. Nothing has ever gotten rid of it permanently.
If you have depression you have my sympathy and understanding. It’s like having a rabid angry monkey on your back all the time. And sometimes modern medicine and therapy does not help.
Well, I’m overwhelmed as hell. Saw the biologics nurses today and was told moderate to severe rheumatoid arthritis and it’s active. I already knew that but hearing it was brutal. My crp and esr are elevated, go figure. I feel faced with decisions I’d rather not make. Pushed to the edge financially, physically and emotionally. Why? I’m really starting to consider the possibility that I was a very bad person in a previous life.
I’m in a miserable place in the world but to consider solitude and social housing is the epitaph of my life. I’m losing more abilities in shorter time frames. I will not even consider a relationship or dating now because of this. Who wants a girlfriend they have to take care of, especially at my age? I’m not that old yet. May as well be. I refuse to be a burden or a chore to anyone, I resent the thought. I take care of it all NOT the other way around.
Not that there’s not a lot to choose from in the decent category of dateables, just none quite that wonderful that I’ve ever met or will meet. I never go out anymore so I figure I’m more likely to win the lotto.
Not much new here. Just more stolen dreams and basic abilities most take for granted.
I haven’t been writing much obviously. But a few things this past holiday season made a-ha moment in my brain. If you ever have the chance (or misfortune in my case) to hear a random bunch of people talk about what they REALLY think about the sick and chronically ill. In this instance they didn’t know I have RA/fibro. You really get a disgusting eye opener. I had no idea that my life was such a crushing tax burden on the world. How the sick have ‘lots of resources’ and how the gov’t will pay for everything the sick need.
It’s people like you who are the reason I try to desguise my limp and make no mention of being on disability. Let alone the shitload of poison meds I take to try to control it. The medications fuck up other parts of my body by the way. Not just my RA. There was no issue with the gov’t taxing my ass off when I was well. So go fornicate yourselves and leave the sick alone.
I have a lot on my mind lately. First I want to address comments made on the most recent post I did on depression. I have had chronic medication resistant depression since I was about 6. So that is around 35 years of me living/dealing with it as best I can. To make any suggestion that I have not tried everything possible to get relief is preposterous. Also to imply that a suggestion will change the way I think, to me anyway is amusing. The best part of me is that very thing, my willingness to be myself. Your suggestions will fall on deaf ears. I am and will always be, my own person.
In the rheum department, I am quite frazzled. I fight like hell to claim the physical part of my life back and it’s not getting any better. I was told if I kept at it I would see results. I do not improve. Just lose more little abilities as time goes by. I keep moving hoping for more gain, only to be gripped by cramps and pain. My right leg has an attitude of its own now. If by chance it slips off the bed I can no longer make it lift unless I use my arms to physically move it. Brain says rise and the command is outright ignored. What the heck is that about? I cannot lift my own freakin leg? Come on now.
I need help to go shopping. Lifting 2lbs of sugar is now (to me anyway) an Olympic event. Using a knife? Let’s just say I don’t cut my meat anymore. Getting up off a chair? Hardy har har. I love being outside, but now I am paranoid of the sun because of biologics. I don’t need cancer thrown into the mix as well. I avoid interacting as much as possible. It’s no longer in my power to listen to anyone talk about how sitting still all day would make them crazy. Or that a desk job would kill them. Gotta be productive after all. Meanwhile I am listening to how much my life is worth to other people. Even if they don’t realize it. I don’t go out shopping much. I find it makes my anxiety haywire. For fear of tripping over unsupervised children, sick people hacking all over, pushy rude adults, lunatic antivax’rs and drivers who are in a rush.
I don’t do much in my opinion. Things that I could do in under an hour now take much longer. Frustrating way to have to live. Listening to people who aren’t sick makes me feel as though I do even less. I don’t live. I exist. Rheumatoid Arthritis stole a big part of me. I don’t recognize what’s left.
I definately have trouble writing much. I don’t want to be too depressing or real but BS and pissing rainbows is not happening either. I started cymbalta last November and experienced some much needed relief from pain. This one side effect is being annoying for me though, weight gain. I had lost 60 lbs over the previous year and a half before taking cymbalta and far to quickly after starting I gained back 25 lbs. I don’t feel I eat more than I did but it came from somewhere. Have to cut back even more to lose it again. Ugh.
Bloodwork in March showed my inflamation levels have dropped to normal levels. Great news. 15 months of enbrel, 2 yrs of mtx/plaquinil/sulfa did something anyway. Still feel like I was hit by a dump truck most days, why is fatigue still such a huge problem for us with AI disease, why do treatments not relieve this? Things I’d like to know.
The RA still lurks. It’s working its way down my right leg, started at my hip months ago. There’s nothing I can do but lay here and notice it. That pisses me off.