Not Feeling Good Enough

Do you ever feel like a fraud? I do, all of the time, I feel like somehow I should just be able to push past this, power through it and be fine. I still find myself trying to keep up with other people and then when I can't and end up on the couch because I crashed I feel like I'm just lazy.

I feel like a fraud using my handicap permit, even though I can barely make it into the store from my car without feeling like I'm going to pass out, I look fine. Looking completely normal I get onto the motorized wheelchair and do my shopping, I see the looks, I'm sure they are more wondering then judgement, at least I hope so....at the end of my trip, though I haven't walked and my husband and daughter have put all of the items in my cart and in the car I leave the store feeling completely and totally wiped out....but still I feel like I should be able to push through. Like somehow I have talked myself into having these diseases...maybe its just that I can't believe that this is my life...

Accepting Chronic Illness

I've had RA for six years now, fibromyalgia for nearly as long and I still haven't accepted it....I want to, I desperately want to because I know acceptance will bring with it a new chapter of my life, not the life I thought I'd have but a new life that can still be beautiful. So why can't I accept this illness? I think that answer to that is because it is not static, it is up and down, ever changing and on my up days I get glimpses of the person I used to be and on my best up days I feel like that person and the bad days are quickly forgotten, almost as if I believe the worst is over and I am back to who I was. Part of me also feels like I can just push through it, I've pushed through every bad thing in my life, forged on and plowed right through it, that is until RA came along. It's not something that you can plow through, if you try you end up worse off but my mind still thinks I can and it feels like accepting=giving in. Mentally, intellectually I know that isn't true but my heart can't quite accept it.

I was the one that always had a super clean house, I had a cleaning schedule in fact lol, I made all my food from scratch, no artificial anything, people loved coming to my house because they knew they were going to have some delicious food to eat. Now I sit here, the room is a wreck, the dogs decided to throw a party during the night and there are shreds of dog food bag every where, my husband is sick and his dirty dishes are stacked high and I have just put the laundry to wash again because it didn't get put into the dryer in time. Here I sit on the couch, looking around at the wreck that is around me and I'm too tired to do anything about it. My upstairs living room looks like a clothes store exploded in it because I gathered all of the clean laundry as well as all of the clothing from my daughters room to go through to see what fit, what didn't and what we could donate....I lost steam in the middle of the project and there it sits.....Ugh, I was the girl who went to college full time and worked three part time jobs all at once and didn't get tired! I worked out 5 to 6 times a week and was a pretzel when it came to yoga, yet here I sit, overweight and unable to walk up the stairs without being winded. I feel like I have been robbed of my life and I'm mad as hell. But being mad as hell isn't going to get me my life back, it is going to rob me of the life I have ahead of me.

So now I must learn to let go of my dreams and build new ones, let go of the life I knew and walk into the unknown life I will now live....I just don't know how.

Disabled....

Yesterday was the first day that I truly felt disabled. Yes I've felt crappy and sick, in pain and terrible for years but in my mind I was just sick, I had a sickness, but disabled? If I said that I felt like a fraud, I mean I had days when I was able to clean my house, walk around the mall, work, garden and even lay a floor, okay it was a snap together tile floor but I still did it! Yes I was achy after those things but I would bounce back. There were other times that walking to the car had me ready for a nap and I would just lay there in pain, crying, wanting to say "help me" but knowing there was nothing to be done but I always bounced back, always. It's always been a roller coaster, good times and bad times but never once did I think of myself as disabled. I thought of disabled people as people on oxygen tanks or in wheel chairs, people who had conditions that always kept them sort of static, you know, they still have up and down days but their up days were still drastically different from "normal" people, if someone saw them on their good day they would still be able to stay they were disabled. This is just not the case for me, on my good days no one would ever take me for disabled, heck , even on some of my bad days, unless I were using my cane people would take me for normal and when I do use my cane I catch strangers looking and probably wondering why I even need it.....

But not yesterday, nope, yesterday I definitely felt disabled. I went to my primary care doctor because my rheumatologist was out of town. I have to say I adore my primary care doctor, she knows me well, takes me seriously, listens to what I have to say and cares about all aspects of my life not just my physical health. When she saw me and then I explained to her how badly I had been feeling she said to me "You've been going downhill in your health since you started working again", I couldn't argue, physically that was true but mentally I had never been better, I found myself again through working, I wasn't just mommy or someone's wife, I was Jenny, I was confident and competent and had goals again. Working brought me out of my depression and gave me a new purpose in life...which was about to come to a halt with the next words out of my doctor's mouth. "I want you out of work for two weeks and then when you go back, if you go back (of course I'm going back!!) you can work two eight hour shifts a week maximum." I left the appointment with my note for work and my signed handicapped permit application for my car....I felt limited and it's true I am. But before it was setting my limits (which turned out oh so well because I worked until I made myself sick) but now to have a medical professional telling me limits.....its just different. I guess before I could play it off as me being overly dramatic or wimpy, so I would press on....and now, I have someone saying to me, no, you really can't do this.

Yes, definitely felt disabled yesterday....

Bad RA Day Comfort Box

I came up with an idea for myself which I'm sure is not a unique idea but I was pretty excited to think of it all the same. Bad RA days suck, I'm not just talking about stiffness, pain and fatigue where you feel like crap but you muddle through, I'm talking RA Miley Cyrus Wrecking Ball style. Where the fatigue is so bad that you feel like you are sinking in quick sand. Where the effort it takes to sit in even a reclined position feels like an Olympic event. On those days you need to be good to yourself and this is where the comfort box comes in....I'm not talking about a cute little shoe box, I'm talking a nice moving box full of stuff. Somethings I will be putting into mine

The most plush, soft, throw blanket that I can find

A T shirt that is at least 3 sizes too big

A pair of stretchy, loose lounge pants that are also a bit big (I can't not handle the constriction of clothing when I am having a bad day)

A large plush pillow to put under my knees

Some movies that I love but don't get to watch often, or perhaps a season of a TV show that I haven't seen yet and I can have a marathon

A delicious smelling candle

Perhaps a couple small edible treats


I'm sure I will think of more.  What would you put in your comfort day box?