I have almost reached my 18 month anniversary from the Tarlov Cysts surgery. I can tell you life is getting better. Oh, so much better than the months before the surgery.
If I look at my recovery, I have to think of it in two separate theaters of life. The physical and the emotional. Also, I have to judge the recovery in the sense of “old self” and “new normal”. I will split this into two separate posts to cut the word count down. First will be the emotional recovery, then the next post will be the physical recovery.
For my emotional recovery, I think I have this area won! The worst was that, before surgery, I was told I could not be in the amount of pain I was expressing; and/or being told there was nothing wrong with me. Just thinking about that part of my journey makes me see fire, not red, just pure anger. Just remembering about having to have done all my research on my own, still upsets me. It makes me cry thinking that if I had not had the ability to do internet research, I would not be here pestering my family today. I think of how stupid I was by doing and allowing the physical therapy. By doing it, it caused the pain to increase and I could not get any relief with medicine. By allowing physical therapy, I had no idea that it could make my life miserable and there was the possibility that I could do further damage to the Tarlov Cysts. Each day the amount of pain I was in was progressing, and I knew I was getting to the point that I could not take any more. I would not want my family to see me become a monster consumed with it. My faith was the only thing sustaining me. Knowing that there is and was a reason for my trials, became a comfort to me. I may never know why; but the faith I have in God’s divine plan allowed me to keep trodding on.
Finally, when I think of the level of the loss in mobility and independence that I was slowly approaching, I was dreading my future and the future for my family.
I am recovering from the emotional toll of finding out what was wrong, and the journey to simply find a doctor that believed my pain, and work on my beautiful self. I have approached my life as accepting my new normal. I still struggle with trying to keep positive, not being angry, and not rushing my recovery. That, and not allowing myself to get down when there are flare ups, adds to the whole recovery process. The chore of faking my feelings seems to equally be a trial. I mean, who wants to be around a person who is constantly feeling sorry for themselves, whining because they can’t ‘do’, etc.
I have to consider the level of pain and where that pain was encroaching on my ability to live a productive life. Thus, accepting the effects of the new normal on my self-esteem or self-worth, is part of my recovery. For someone who loved to clean her home, (take that with a grain of salt, please), to now becoming someone who begs others to just vacuum the stairs, is frustrating. Having to wait on someone else to ride to stores with me is more like having a full blown physical handicap. It is feeling guilty; because you require someone to take time from their busy life and you discern that you have to accommodate their schedule. It is not simple anymore.
The days that I sit in my home and I am bound to the couch, are days that I wish I could just sleep through. Those are the days that nothing gets done, and you feel guilty when the other members of the household tell you how frustrating just driving home from work was. There is a little bit of jealousy, anger and wanting to scream ‘well you got to get out of the house, didn’t you?” It’s like being a new stay at home mom and the only conversation is with children. You love them, but wouldn’t it be nice to talk about grown up things?
I even question the continuation of this blog. I know some family members are reading it. My “but” is that I never know if they are reading past the first part that is posted in fb, or if they are reading it through, to the last period. Then there are the followers whom leave comments, but don’t want their comments shared. They are the ones I know that have connected on some level with the blog. When they tell me that I have hit a nerve, or they feel like, hey, ‘they are not alone’, I could just give them a squeeze. My poor husband, he proof reads it. He gets all my emotional baggage and finds out after the fact, what I have kept from him. I know that if I was doing it for him, or someone else, I would be bawling my eyes out one moment, then giving them the NCIS head slap for not sharing.
I think he has learned to read me. When he gets home, some days he asks about how I feel and some days he knows to keep his mouth shut. You might have caught on to my not accepting pity. It upsets me when I catch myself grunting or going a little slow, really just letting it slip that I am uncomfortable. I have learned only to skim the surface, when others want me to share with them how I am doing. They want to be polite, but I have learned to accept that politeness is not wanting to know all the details.
There are two areas that I still can’t come to terms with. One is not being able to clean my house. The second is the lack of freedom and stamina when shopping. For me, these are the hardest emotional tolls on my well-being since the surgery. No more climbing on kitchen cabinets to dust the top, no more pulling that fridge out to clean under it. No more 5 or 6 hours out running around, hopping from one shopping center to another. Now the 3 to 4 hours is half spent finding a place to plop down. I have even gotten so bad, that I think “where can I go and get something close to what I want, in just one stop”. Usually that means the dreaded Wally World. Just walking into that place makes me want to scream. I have even given up on finding a handicapped parking spot in their lot.
But, I can say that even with the emotional recovery, I have not been depressed about any of my journey. Angry at times, of course. Upset with the amount of lost abilities and quality time, yes. Frustrated over the whole of the situation, you bet. But not depressed! I decided to be a ‘kick-ass’ patient, so watch out future doctors. Don’t tell me what I do and do not feel. Do not call me depressed, or looking for drugs; just because you don’t know about my disease. It seems, as I have posted about before, that if a doctor cannot understand what is happening to you, their quickest route is to suggest it is depression. If you mention “pain” and you cry because of that ‘pain’, then they stop right there and want to prescribe an anti-depressant. I refuse to let any doctor try and label me as ‘clinically depressed’. They don’t live with me or in my body, so until they do, they do not have the right to label me. But, to say on a positive note, if I cry it is because it saddens me to think there are others with the same Tarlov Cysts Disease out there and they are being told it is “all in their head”, or they are depressed. Having sympathy with others is not depression. Being angry because the doctor goes the easiest route is not depression, it is anger.
I have boosted my emotional recovery by not using and relying on the word “pain“. I have taught my body that not all the sensations I feel is “pain”. I can now differentiate between the “pain” and “discomfort”. By being very descriptive about the sensations and seeking the exact spot of the discomfort; I have helped my body realize that more of the body feels healthy and that is what I want it to concentrate on. [I have written a post on my idea of training the brain with the use of other words: Numbness, Pain, Confused Nerves?]
So, can I say I have recovered from the emotional side of the journey? My answer is a foot stomping “yes”! And you know that I can’t answer for the family, but I give them stars for hanging in there with me. Just for fun, I will tell you the area I have expanded on. My sarcasm! That’s my fun, but I have tamed it some in this post.