September 23, 2012 at 1:14 pm #314Give My Daughter the Shot!Participant
Ok, so, earlier today a handful of neighborhood kids (whom I dearly love and value) were playing on the sidewalk at my house and, ultimately, approached the front door asking if I had any cookies. I don’t have any cookies right now (though I have shared cookies with them in the past). I tried to brainstorm about what they might enjoy – no, not sesame mini bars, no, not some nutty-type snack – I just couldn’t figure it out. Yeah, kids don’t like ‘old lady stuff’. Anyway, in my state of relative confusion paired with overwhelming exhaustion, I started thinking that maybe I had a cake mix. I must’ve said it out loud and the kids were so excited that I was going to bake cupcakes. HOLY H.LL! OMG! There’s no way that I can commit to baking but I didn’t want to let them down. Now I’m practically on the verge of tears. Every project, even as basic as making cupcakes, takes its toll. Anyway, I keep a smile up and tell the kid that I am not sure how long it will take me. I’m sorta wondering what just happened. All I would’ve had to do is say that I’m sorry but I can’t. I used to be a competent enabler for all around me!!! I guess old habits die hard. THERE’S NO WAY I CAN BE AN ENABLER ANY LONGER AS I CANNOT EVEN COMPLETE SMALL TASKS UPON MY OWN WILL! Ugh!
The kids are so excited that I’m making cupcakes and ask again. I start thinking that if I could only mix the ingredients, I’d be part way there. I tell them that I’ll get started. When I go to get started, I realize that I have no eggs. Ugh!
What, in my cognitive genius do I do about this? What else but offer the delightful young man of 7 years, whom I think so much of, a box of cake mix!! WT.! So, he asks me if I can go with him to take it to his mom (probably because of how weird it was that I did that). Of course, at that moment it was a long walk for me to get across the street and I declined. Next thing I know, I start to realize how weird it is that I did that! WHAT!! I love my neighbor as well as her son dearly. What kind of message (probably rude) does it send to have someone’s kid show up with a box of cake mix to satiate their desire for a cupcake?! Great – really freakin great! Now I’m going to have to catch her and probably explain that I have a truly good heart and would never want to offend her, her children or her husband. I almost think I am at the point where I should admit a slight cognitive defect on my part – in the case I do anything weird like this again. There’s really no way to explain doing something so damn creepy! Who does that kind of crap!?
Now, can you imagine why it is so f…..g important that I slow the digression of whatever condition is causing me the most trouble!!!!! Yeah, that’s right, it’s hitting me cognitively too!!!
God willing, I won’t end up bawling to my neighbor – as that may only cause me to be even weirder!!!
Honestly, I feel that my miniscule strength/energy/cognition/capacity/function would be better directed toward a wrongful death, medical malpractice or medical negligence suit versus KILLING MYSELF trying to find a doctor to maintain (as my genetic doctor had advised nearly 18 months ago). It’s really sick what I’m going through and it affects EVERYTHING in a devastating capacity! This doesn’t even take into consideration the chronic pain, chronic suffocating exhaustion, fact that I can’t lean or bend or hold onto anything, intermittent, migraines, intermittent massive head pressure, moderate to major GI issues, and that’s only a smidge of the nightmare.
You’d think that if I couldn’t retain the health of my body – I might at least retain my cognitive abilities!!!! I knew they had become much more of a ‘snails pace’ but now this problem solving weirdness?!
So, I guess, does anyone know what someone who is afflicted with my conditions should expect during this process of degeneration? Please keep in mind that I have no access to treatment or medical care since I am so freakin sick that I can no longer work to earn my insurance!!! My genetic doctor mentioned neurons but I disengaged from the information he was giving me because I don’t want neurological problems. I ‘tick’ and ‘jerk’. At this point, I just want an idea of a prognosis. The prognosis of someone who is left completely devoid of any treatment or management for a condition that is in a perpetual downward spiral. BTW, the cake mix isn’t the first time that I’ve ‘dropped the ball’ like that.
PS. Think the cognitive issues might be related to a later stage of CFS. I’ve been nearly dead of exhaustion for a handful of years now – with no break from it! The heart problems that Dr. Cheney discusses are diagnosed for me and I could be the poster child for CFS. Is this the cause of my cognitive issues?
Anyone?September 23, 2012 at 1:22 pm #2952Give My Daughter the Shot!Participant
BTW, while I’ve only grocery shopped 2 – 3 times in the past 2 years, if I do shop in a small store (since I can’t make it to the back of a larger store like WalMart) – I often end up wandering from exhaustion and am unable to accomplish the task that I’d set out to accomplish. Then, as if the abovementioned weren’t enough of a slap in the face for a viciously independent person, I get home with a bag and wonder who the he.. the bag belongs to. Holy sh..! I can’t even tell you how many times. I hate walnuts – detest them – why the freak would they be in my bag?! I don’t even have money for walnuts – I am so freakin impoverished now! What kind of crap is this. No matter how much I beg for medical attention – it ain’t happening for me. It’s just an almost unwavering series of degradation and devaluing appointments in which I am repetively reminded that my life has no value. I guess I’m living in a place where there is low value for human life. I don’t know what has happened with regards to that but it is completely foreign to me. I went for an appointment a few days ago and the nurse intercepted me and canceled my appointment citing I already had someone assigned to me for care and I couldn’t have two people. Ok. It’s just that, after approx 3 years of begging for help……..September 26, 2012 at 4:02 pm #2967ourfullhouseParticipant
I am moved to tears reading your post. I am so sorry you are going through this. I don’t get those kinds of cognitive problems very often, and I hate it when I do, that you are living with all the time. Often enough that I can empathize with you.
And I want you to know that your life is of value! And, I know what it is like to go through doctor after doctor who doesn’t understand or doesn’t find anything wrong (what the heck?). There are so many times I would like to/should have gone to the ER, but I just can’t bear trying to explain “me” to them anymore. I know I’m preaching to the choir here.
I just noticed in your “signature” that you have had TMJ surgery. I think you are the first EDS person I’ve seen have that issue, though supposedly should be common as other joint issues. I had a bilateral sagital split in conjunction with 3 years of braces (not to straighten my teeth, but because of the ever increasing overbite), meaning they broke my jaw down the middle and slid it out 8 mm, back to where it should be. My condials are 1/3+ worn away and the pad/disk? in each joint was displaced. Surgeon was able to put them back in place, though one had a hole in it. He stitched it and put it back in. He thought that would be better than foreign material that my body could reject. Wired shut for 8 weeks to heal, etc. Not sure what all your TMJ surgery entailed? I’m happy to be able to chew again, though I still have to be careful. Sadly the area around the joint never stops hurting, I think because of the scar tissue and muscles around the joint having problems. How is yours doing?
Hang in there.
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