As the year is winding down and I contemplate all that happened in 2015 and all that is to come in 2016 I came to the complete and obvious realization that I have been stuck in a rut. And not just an “my disease has progressed” rut. More of an ” I have given up” rut.

As I sit on my couch watching yet another Netflix marathon with my ass molding into the couch that I seem to be glued to now a days I can’t help but feel utterly pathetic. I think to myself I need to at least try and accomplish something today in the house or get outside but I just can’t seem to get the energy to do so. Sure, part of my lack of energy I can attribute to the fact that my joint pain has increased lately. My kidney pain is what it always is and my overall condition is doing what I expected it to be doing at this age. Things are taking their course as I knew they would… but what the problem really is, is my attitude. My drive to fight. To do, well, anything.  I sit and think about where my energy has gone, and why I have put on these 6 pounds that I can’t get off, I mean nothing has changed right?

This year brought up a lot of scary experiences and memories for me that I hoped I wouldn’t have to experience for many more years to come. I had been having issues with dizzy spells, memory, staying awake (most of the time in the car where I would find myself stopped in the middle of an offramp) and just overall confusion when trying to focus. As this progressed the testing went on and on as we discovered my Chiari was not indeed cured by the decompression c 1 laminectomy. It was back. I dreaded hearing this. I had two possible explanations for these symptoms that the doctors needed to sort out with multiple MRIs and consulting the Chiari Institute in NY. 1. The Chiari was back or 2 the surgery I had in 2008 caused instability in the neck (which will eventually happen) and it was time for the surgery to have rods placed in my neck. I really wasn’t routing for one or the other because they both suck. It turned out to be the first option and my fear was realized as I began absorbing the idea of another major head surgery.
As anyone knows with chronic Illness comes regular (monthly) doctors appointments with a multitude of specialists. I had been keeping them all up to date on the progress of this particular ongoing health saga. From my kidney doc to my ortho to my pain specialist and gastro!  My pain specialist who works with another Ehlers Danlos patient and a few others with Chiari mentioned another option rather than major surgery. He could do a few injections into the nerves and joints in my neck and lower head region. This would provide move head support in hopes to eliminate some of the symptoms.  I was extremely hesitant about this idea as the last time I did something like this it was into my mid back to help with my kidney pain and it backfired making the kidney pain worse. He assured me this was not the same procedure as the nerve blocks. For this surgery they look to focus on strengthening rather than nerve blocking.  It was a long shot (no pun intended) but one I figured “what else do I have to lose?”  So I decided to do it. I mean at least I could say I tried before doing anything major. It wasn’t until I was in surgery prep that the doctor explained to me “IF it works it will only last 3-6 months if we are lucky 6 months and then we would need to do it over again”.  After some thought I still figured “fine, I’m already here”. I could keep doing this to avoid major head surgery which scares me much more now than it did 7-8 years ago…

Before I knew it the anesthesia was administered and I was out.

The recovery for this procedure was to be very minimal however with EDS recovery time always seems to get longer the older you get.  I was home for a good 2 weeks until I felt 100% better.  The first week I was pretty emotionally stressed as the procedure did not seem to be working.  Symptoms were worse, neck pain was almost unbearable and I was overwhelmed with a feeling of not being well.  Once I got beyond the 1 week post op each day I starting feeling better and better.  It’s crazy to think but the Chiari inhibiting my abilities before the minor procedure and the more extended recovery time put me in a funk.  I have been trapped in routine of minimal movement, easily exhausted and a loss of motivation.  Looking back on how things have changed in the 6 months – 1 year it just seems to have flown by with such a drastic change in activity comparable to all that I was able to manage before. I realize I used to cook more, I excersized 3-4 times a week and nothing too harsh… with EDS we are strictly advised to only partake in low impact excersizes.  This entails walking, yoga, pilates, swimming and maybe biking, just not extreme biking. So that small bit of activity I set aside for myself previously just stopped.  I also haven’t been going out as much, less birding, and get togethers.  When I get home from work I find myself heading straight for the couch not to leave until bed with minimal chores of feeding and letting the dogs out.

It’s not like I haven’t been aware.  I knew I was less active and I suppose it goes to prove the saying that with more activity you will have more energy and with less you become less energetic and less motivated. What I need to do now is wake myself back up.  Since I seem to have really dug my self into this rut it may take a bit longer for me to pick myself up piece by piece until I am back to a state with which I am happy, active, and just overall with a sense of content.  I think what really made me realize I needed to do something is an overwhelming feeling of emptiness and sadness.  I don’t know if I would go as far as to call it a depression but pretty darn close to it.  I don’t want to come home and be so stagnant. I want to come home and actively take care of things, work in the garden, and be productive but I just can’t.  As I begin to really dig into this saga I begin to unfold the core of the problem.  The knowledge that this will be an ongoing battle as my disease always is, I have just been waiting for the other shoe to drop. I have allowed my disease to win. I have given up on fighting and trying after my last battle which was thn followed by kidney complications and severe joint issues i have yet to get treated and stomach issues as well. I have let it all take over.

This part of chronic illness I think is the hardest part for healthy people to understand. How it is this ongoing struggle that can completely absorb a person. So lets mainstream it. Cancer is something most people can understand. When people hear cancer they generally become overly sympathetic and or freak out because its obviously well known for being fatal, as are most chronic illnesses. What people understand about cancer however is that the fatality of it works very quickly. The suffering in between, whether it’s caused from the actual cancer or the cancer treatment, is unbearable and exhausting. Having a chronic illness is very similar in the fact that most people with chronic illness will die from it or from something it causes, maybe even from the treatment. Just like Cancer. The suffering in between is unbearable. Just like Cancer. The suffering in between however is often extended for life. We wait and wait and wait for the next bomb to drop, wondering whether the new symptom is a direct result of a new condition thanks to the illness. We are fatigued constantly from treatments or just from the disease. We have good and bad days just like cancer. They can be totally random and last for weeks or last a few days. We have no control…. Just like Cancer. Where we are not alike is a cure. Obviously there are many fatal cancers out there where cures are not possible but now a days there are treatments, cures, you can go into remission. For us, this is not in any way a reality. There are medical treatments to help dull our symptoms but nothing will cure our chronic illness. It is with us forever, it progresses with age, and living with this, knowing this, is the most emotionally and physically draining experience I wouldnt wish on my worst enemy. The ups and downs are outrageous. The changes in activity levels, mood swings, you cannot fathom unless you experience it. There is a similarity with cancer here as well though in that once you have had cancer and you have made it to remission you are at a greater cahnce of reoccurance. It’s again waiting for that bomb to drop.

All of this. All the time. We find ourselves all th while putting on a smile for everyone around us to not make them uncomfortable about our disease and our constant suffering. It’s not something that can be understood unless you have personally experienced it. It’s no wonder I have been trapped in the hole surrounded by these thoughts and feelings keeping me down for such an extended period of time. And I have a plan. I want to get out but every step will be a challenge. Often I find myself taking one step forward and two steps back but it wont stop me. I will keep trying whether I am successful or not. I will fail too but I will try again. My disease will continue to progress and I have found at this stage in my life it is really progressing at a rate I did not anticipate. I am on the defensive now and ready to plan my strategy of attack. I can’t do it alone though. It will require pushing from my support network and catching as well when I fall back down. I guess the point I want to get accross is that it’s very easy for the sick to become helpless and hopeless and it’s something many people do not understand because of either lack of education or understanding or sympathy. We need people to understand or else the rut we find ourselves in just gets deeper and deeper as wel lose this lack of support.

The plan is coming and it’s a plan of attack I’ll post about soon.
To be Continued…

-Just a Regular Sick Girl