It has been a while, yes? So how has this old body been doing? Humm, do I talk about the daily discomforts with Tarlov Cysts? Do I talk about the daily struggle with my ligaments wanting to cramp up on me? Do I talk about my bones hurting? Or do I choose to talk about the anger I am trying to work through? Maybe all? We will see where this post goes. I will write it free form, meaning I will let my mind type the keys.
To start, let me share the daily discomforts.
I have just about given up on driving. We live so far away now that it takes me 30 minutes to get anywhere. So that is an hour driving, guaranteed, but figure in the hopping from store to store. Because, heaven forbid, the first store that used to carry an item have it in stock. Then when I get a chauffeur, they seem to enjoy sharing their feeling of being put out [truly not getting their way] to help. I mean, I took them from a book they deem important to read, or some other such trivial thing that is more important than helping another person. I never ask a person to skip work to help me out. Why should a person have to ask a family member for help especially when that family member is supposed to be aware of the patient’s needs? Do family members think that the person enjoys having to ask? Do they think that the one asking is being selfish? I give up.
Then let’s say I drive to the store and miracles I find what I am looking for. Then there is the need to have a store employ to help you tackle getting it into your car. First you have to roam the store a dozen times to find an employee, then you have to deal with their pissed off attitude because they are having to work to put food in their mouths. Or, let’s say grocery store. How many times a month/year does a store really need to move their merchandise around? Why in the world do they need to move the gluten free breakfast bars to the next isle down and no where near the other breakfast bars? Then to have the non-GMO grains in four different places? By the time I get four or five isles covered, and that will include having to go back down one to search for something, I am exhausted and the legs are deciding to flop backwards. I have tried to do the “order online and pickup”, but when they have 50 different varieties for the same product, I usually get something or at least four things wrong. I am totally fed up with the corporate world at this moment. Believe it or not, frustration adds to discomforts. Just saying.
Then let us talk about the sarcastic comments you get to hear because you are trying to eat ‛cleanly’ to control your pain. They run the gamut of, ‘you are being picky just for attention’, ‘you really are crazy for thinking that your diet affects pain’, to ‘you are wasting their money’. Then you have to deal with the guilt they throw at you just because ‘your food’ doesn’t taste the same or it costs more. Humph, well at least I ain’t doing the same things over and over hoping for a different result each time.
Now, let us cover what I said about my ligaments. Those suckers are trying to warp my body taut in every joint I have. I spend countless hours each day stretching every limb, digit, every joint I have to keep my body pliable. I can’t sit still, I can’t lie still, and to add insult to injury I can’t bend or squat. No, I have not reached out to a doctor. I am chalking this up to age. Such a beautiful thing, that “Age” is. Talking about sitting; I have been paying attention to the fact that my back is twisting. I can sit on a backless surface and be sitting perpendicular, but when I do it free form, I find that my spine is twisted close to a 45 ° to my right. So now add that I have to be aware of sitting squarely, not just gingerly.
Then to the lovely bones. Those boogers hurt. Just plain simple hurt. Walking feels like I have a perpetual stone bruise on my heel and toes. Barefoot; sneakers; flops; it does not matter. The bones in the arms and legs feel like I have been beat. Even to the extent of waking up with the need to move every part of my body. I have had to get up and roam my house to calm the ache down. Then we will not talk about the electric hum running through out my body. It is like, ‘please, can someone unplug me for a few hours’.
All this sounds like griping. Yep, it is and this is my only release right now. But I hope that if you are feeling the same things, you will understand you are not alone. Yes, this is a very ‘alone’ disease although there are others out there just like us.
I have had so many disappointments on the personal side of this life that I have hid myself and have stopped sharing. Those people who say they care are the ones that are heaping on the disappointments. From all quarters I feel attacked with discouragements. I have had decisions made for me. I have been told I cannot participate, but from other quarters I am berated because I do not ‘do’. I have been shoved aside because of my health. I have had my head bitten off or made fun of by those whom should be the caring ones. Yes, this started in 2014, or really the breaking point was 2014. Yes, I had a deep buried hope that all would return to “normal”. Meaning that I could carry on my life like pre – Tarlov Cysts. But being the realist that I am, I knew that was wishful thinking and that what/how I live now will remain the same or get worse. Who wants to advertise that? So, the need others feel to try and demoralize a person is beyond me. If I have to make adjustments to my life for other people, why can’t they do the same for me? Just asking.
If you have gotten this far on this post, I hope you can look at yourself and ask the question, “could I be a person she is talking about?”. I hope this helps someone feel like they are not alone, or helps someone feel the need to look at the patient in a different light.
Wow! That was a heavy post that I had to sit on and decide to post or not. Yes, there was a lot of editing down to a nicer post. But I think there is a lot that maybe one of my readers might need; to give them a sense of “I am not alone-ness”. I am coming up on seven years for the surgery but eight years for the “what is wrong with my body”. By the time I received my diagnosis of Tarlov Cyst Disease, I was in a worse frame of mind. If the surgeon I visited had given me a “no-go” report, then I had already made up my mind to visiting Washington state after that 2014 Christmas. I know this disease is hard on the whole family, [I truly understand that.] but….
I will do another post soon. I have tried to keep myself busy with helping others and now am having to camp out in my bed. I will do a round of medicine and those side effects can get my ‘creative’ self in gear. Cue the bucket by the bed, the hours of trying not to puke, the hoping to not spill a drink as I try to be self-reliant. I have already taken one med that gave me at least two hours deep sleep, now to deal with side effects and decide which one I should try next.