Paul and I were glowing parents, attending our daughter Taylor’s Junior Recital at VCU Palm Sunday weekend. We are so proud of her! At twenty years old, she has worked her way up to management position at the restaurant she is employed by (and watching her this weekend, she never stops, she is on her feet and going 100 MPH the whole time!). She is both supporting and putting herself through college as a double major. She is balancing a 40 hour work week, a full college load, paying her own bills and is still has the most contagious, wonderful personality in the world. Of course we are proud of all the girls. My oldest daughter is much the same. She balances a full time job, keeps a spotless, beautiful home and is such a good Mother to our amazing Grand-kids. There is plenty of proud to go around.
It was our first long weekend away in eight years. I was nervous from the get go. A lot has changed in eight years. I was not at all organized with the packing. I feel nothing ‘looks good’ on me so I always over pack. I always have and likely always will. I was behind. I did not make a list. That is a bad idea in and of itself. But I got everything together and even having to turn around 10 minutes out because I forgot one of my medications, we were off and going. It is odd, as hard as it is for me to sleep at night, I can fall right asleep in a car and even better in an airplane. I joke at how I wish I could take off each night and fly around Virginia and I am certain I would not have the insomnia issues I do on a regular basis.
Sadly, I cannot climb aboard an airplane every night to greet the sand man. And the car trip, as nice as it was to have a spring time, wind blown nap, did have a destination. Do not get me wrong, it was fun…. wonderful! Amazing even! However, I was humbled beyond the capacity that words can describe just how bad my Fibromyalgia has progressed in the last few years. By the end of the weekend, Paul and I were talking seriously about buying a motorized wheelchair in the not too distant future, at this point for part time, and if I do not improve or go into a Fibro remission eventually, most likely full time (when out in public). It was sobering. It hit me like a boulder falling from the sky.
Stamina? What is that? I don’t remember what stamina is. I don’t even remember what normal is. Friday was ‘fine’ because Paul drove, I slept and then we watched the recital (sitting of course). After Paul checked us in, we grabbed a bite to eat and went back to our room. Even with that I was exhausted. I had sat and slept in a car, sat and watched an amazing recital (our daughter did such a wonderful job! She truly has a God-given gift) and ate (sitting yet again), and those things alone shattered me. Yet Paul, who works 3 jobs because SSD won’t get their head out of their ass (next blog post), was tired but not exhausted….. and he drove 3 hours along with doing all the physical work of the trip!
The next day would prove to be a true eye opener. After tossing and turning in a hard, hotel bed….. even sheer exhaustion had me waking and pacing the floor in the night. I woke up feeling like I had been manhandled by a 600 pound Silver-back Gorilla.
The real eye opener came when we went to The Virginia Museum Of Fine Arts. I had been here before many years ago. We had some time to kill before our daughter got off work and my husband had never been there. It is free and nearly impossible to take in via one trip. So we thought we would go and see what we could, knowing my limitations would slow us down, taking solace that we would be back. This turned out to be a defining moment for me.
I love museums. I always have. I could spend a week doing nothing but going to museums every single day. Art, history, transportation, engineering, everything! I love it all! Art, however, has a special place in my heart. I am a huge fan of Impressionism. Shortly after we entered I was tired nearly straight away. I knew I was in trouble when I was having to sit down every ten minutes. My legs gnawed and burned with pain. It was as if I had 50 pound balls chained to my legs and 25 pound weights chained to each arm. I was literally having to sit every ten minutes, and at times less, and remain sitting for at least 10-15 minutes before resuming. It was sad, frustrating and so sobering. I felt so bad for Paul I told him to just go on. Luckily there were seats scattered about everywhere and elevators to the various upper levels. Nonetheless, this is when I realized how very dire and advanced my Fibromyalgia is. For those in SSD who have me now at about 40 months of fighting for what is rightfully mine; my Social Security Disability Benefits, oh how I wish they had been following me around. If they had, they would have seen how truly disabled I am. Paul felt bad, but I not only encouraged, I insisted he go on to see various things and I was able to see a few of the galleries, including the Impressionism. I am thankful to the museum for having benches or chairs in every room at every turn of the museum. It was that evening we discussed, seriously, the fact that getting a motorized wheelchair is not a possibility but a reality in the not too distant future. When did it get to this?
In fact I was so exhausted, we had to go back to our room so I could take a power nap before picking our daughter up for the evening. I am glad we did this as if we had not, I would have had a truly challenging night. We did have a good evening, going to a lovely park and just doing the relaxing zen thing, eating and taking in a movie. We had a good time!
The next day did not prove to be any less challenging and we took in bits of what we wanted in very small doses. We will go back but I fear the same problems only worse as time goes on. For something that is chronic but not life threatening, Fibromyalgia is the most cruel of conditions and trying to ‘explain it’ to someone is impossible. Even Paul who is understanding beyond words gets blown away by the force of this horrible storm that sometimes lightens, is sometimes almost bearable but always blowing its mighty winds in the body of the Fibromite. It is utterly soul crushing.
I think from my perspective, it was not about what I could and could not do, it was about how much I slowed Paul down. He insisted it was ‘no problem’, however, as hard as he works while SSD continues to fight me for what I have spent my life working for (insurance, in the event that I become disabled), he has a lot of hats to wear in our family. It is for that reason that I felt terrible for him. This was his time to just relax. It was not about what I was missing or unable to see, it was about the things he had to give up. In truth, a wheelchair would have made all the difference. It is very hard to admit that to yourself when you are still so young and also so very alive on the inside.
The trip taught me much. It was like a giant slap in the face by a big hand named, Reality. The next few days would also prove to bring it home even further. It goes without saying that I went into a full flare. Mr. Silver-back came back for round two and was twice as rough and I think he went to the top of the tallest tree with me and threw me down. I felt like I had been a pinata at the birthday party of a bunch of frolicking five year old future professional baseball players. However Monday night (the day after we returned home), I had something happen to me that has only happened maybe five to ten times in the nearly twenty years I have had Fibromyalgia. Of course I do not have Fibro only, I also have a very damaged neck. My nerve block wore off several weeks ago so the spasms and intense pain from my many neck issues have returned. Add that to the fibro flare and the night after we returned I had what I have dubbed a “Fibro-burst”. A Fibro-burst is so intense and overwhelming that I feel it is the closest thing that must come to someone with cancer or a like illness. I moan, whimper and eventually give way to tears. Meds do not touch it. Sitting, laying, standing or any combination does not matter…… it is the most intense of all Fibro related pain. Paul is ready and willing to do anything necessary, but nothing helps. They can last 1/2 an hour to hours on end. I finally was able to fall asleep and I do not even remember how. Nonetheless, these are the times I am glad I do not own a weapon. The Fibroburst is that bad.
I am glad we were able to go see our daughter give such a beautiful performance. The trip was about her and seeing her perform at her recital, the rest was just ‘fluff’. However, it did open my eyes to how disabled I truly am. From having to literally sit down every 10 minutes to having a severe attack of IBS the morning we left…… then downing 1/2 a bottle of Imodium so we could just get out of the hotel…..I was humbled beyond words. Nonetheless, I am housebound too much as it stands. I want to enjoy life to the extent I am able. Does this mean that I am able to do much less in a day then a well person? Yes, it does. I accept that is the reality of my life right now. However, it also means I need to swallow my pride and use resources like motorized carts at the store and eventually getting a motorized wheelchair so when able, I am not hindered by a tsunami of fatigue ten minutes after arriving at my destination. My biggest hope in prayer still stands at this: A full cure for Fibromyalgia. Until next time, K.