Seasons and Blessings

Boy, am I glad I decided to take the chair out yesterday for a test drive. Yesterday was beautiful! Today it's in the upper 60's, cloudy and looks like rain. What a difference a day makes! Just shows how much things can change in just 24 hours. Not only the weather, but our lives and our outlook as well. As in life, I try to choose the positive. I enjoy the cooler temperatures for more than one reason. It's a lot easier on the MS for one and the changing seasons always remind me of the changing seasons of my life. Fall tends to make me introspective, more aware and more thankful for the blessings I have been given. Our lives have so many seasons, not just related to aging. Our careers, have seasons. We watch our children (if we have so been blessed) go through the seasons of their lives as supportive bystanders. Even MS has seasons, although I think MS's seasons are rather random and tend to be brutal. Right now I'm in the "Fall" of my life and perhaps the "Winter" of my career. I think my MS is in Spring (for now), sitting back and giving me a break. A break that hope hope is forever, but I'd be happy to go a year without another exacerbation. Now, I'm waiting. Waiting to see if I regain any of the function MS took from me over the past 6 months. I'm hopeful, optimistic, but not naive. I'm very aware my body couldn't have withstood what it did over the past six months without some residual damage. At least the vision in the right eye came back. It's not 100%, but I'm happy with what I have. It beats the alternative of a blind spot in my field of vision. I'm still trying to walk, and taking "facers" when I do. Hence I spend most of my time in a chair. Either the one with wheels or a recliner. I will still TRY to walk every chance I can. Even if it means my knees look like a 9 year olds. Heck of a way to relive your youth! I intend to enjoy this Season. Not only the weather season, but THIS season of my life. Despite all it's challenges and frustrations, the blessings far outweigh each of them. For that I am so grateful. So, I'll sit in front of the fireplace, quilt across my lap with Maggie curled on top. Valor lying at my feet and focus on the blessings I have.

Getting out

Even though Halloween is Friday, we had temperatures in the low 80's here today. Which is amazing. Normally we've had our first snow by now. I took full advantage of the beautiful weather and took the new chair out today. It was great being able to get out ALONE. I love my husbands company, but it was wonderful to get out and pick up a friend for lunch all by myself! I feel like I've received a gift. I have some of my independence back! Of course, figuring out how everything works to break the chair down, get it in the car etc. is going to take a little time. The more I do it, the easier it will be and the faster I'll be able to do it. The chair is light enough that I can sit in the drivers seat, pop the wheels off and put them in the back seat one at a time while holding the frame of the chair up with one hand. Then it's just a matter of taking the arms off, folding the back down and lifting the frame into the passenger seat. I have to learn which order to do all the steps in that is the easiest for me. Just making ONE trip wiped me out. I don't know about everyone else with MS, but mornings, on average, is when I seem to have most of my energy. Every now and then I'll get a burst in the afternoon, but not often. I try to ration out my energy to get it to last as long as I can, because I want to DO as much as I can. Especially with the weather being so nice. I expect to come back from Texas to WINTER here in the mountains, so I want to spent as much time outdoors as I can. The new chair will make doing that a lot easier!

All shiny and new......

I got the new chair today. It's an ultra lightweight Quickie GPV. VERY light compared to the monster I've been in for the last 6 weeks. It weighs 21 pounds with the wheels on, compared to the 35 pounds the one I was using. The wheels pop off with literally a push of a button so I can sit, pop the wheels off one at a time while holding the frame up with one hand. The back folds down so you can then just lift the frame into the car. Amazing. It's a beautiful blue (my favorite color). The foot rest bar is solid and at 80 degrees so I can wheel right up to the stove, etc. It also means that I can bend over in the chair and pick things off the floor. The center of gravity is set so it won't tip forward when I lean that far forward. YEAH. More freedom. Means I won't have to ask anyone to pick something up off the floor for me. I have to wait for Mark to come home to really get out in it though. They didn't put the brakes on it (?!?&), and I don't have the hand strength to do it myself. So, I wait until he comes back home to really take it for a drive and make friends with it. I know that this chair will give me a lot more freedom than I've had for awhile. I couldn't lift the other chair to go anywhere alone. So I'm really excited about that. Yet....part of me looks at the chair and sees it as a reflection of personal failure. On a rational level, I know it's not. However, the irrational part of me looks at it, all shiny and new, and sees it as a sign that I have either given up or been defeated by the MS. I'm hoping that the chair will eventually become something I only use periodically, just for energy conservation. As long as I continue to fall on a regular basis I know I'm safer in the chair. So, right now, it is what it is.....

Rally call

The morning after Rebif injection night is always a challenge. Seems that lately it doesn't matter how careful I am to pre-medicate myself a few hours in advance with IBU, and take another when I go to bed, my body always feels like it's been run over by a truck the next morning. Throw in the Neuropathy I've been having and it's enough to make me just want to stay in bed. I don't though. I hoist my petard out of bed, into the chair and start my day. Not wanting to doesn't matter. Failure to live my life isn't an option, no matter how crummy I feel or how hard it is to move. Giving up means giving in. I just won't do that. Focusing on the positive is often a daunting task. Especially when your having a day, like today, that all I REALLY want to focus on is feeling sorry for myself. I have identified a pattern in my behavior with the MS. I will experience an exacerbation, a pseudo-flareup, or a new limitation. I'll get pissed off about it. Which is actually a good thing....in the beginning, as it only last so long. (I never could stay made at anyone or anything for long). I think the anger helps keep me going with the "The H*%$ this disease is going to beat me" attitude anger gives me. After a few days the anger dissipates and I'm left with the "I'm throwing a pity party who wants to come?" mindset. (Which is where I am right now). My preference during the "It's my Party" chorus period (OK most of you likely have never heard of that song, so go to lyrics.com and read them), is to live in my bed, surrounded by chocolate and Petrone Silver. The remote by my side (it wouldn't be in my hand because between the chocolate and the shot glass my hands would be full. Leaving me to change channels with my nose). I'd rather have the Silver shot than the Rebif shot. Of course, part of being an adult is being rational. Whether I want to be or not. With that rationality is the realization that all a "Pity party" will do is actually make things worse. Hence, focusing on the positive. Often desperately. Thankfully, when I can't find the positive I have so many wonderful family members and friends that rally around and find it for me. So, troops. As hard as it is for me to admit....it's time to rally.

Home Sweet Home

Arrived back home this afternoon after a quick trip. OK, it really WASN'T quick. It takes 5 hours each way. Of course this is only if you DON'T have a freaking flat tire and have to stop every 30 miles or so because you have a passenger (ME) that either has to pee or is having yet another muscle spasm in her left leg or glut (ass for those of you who never took A&P) and has to move. But I digress. Anyway we went up North to help Marks dad celebrate his 80th birthday and his eldest niece her baby shower. We had a WONDERFUL time. The shower was fun and he has a great family, so it's always nice to spend time with them. We left here Friday at noon and returned today at 2. Needless to stay it was a VERY quick trip. One that totally kicked my butt. Which in turn totally pisses me off. Just a short year ago, I would have returned home, unpacked, started the laundry, went grocery shopping, cooked dinner and STILL had energy left over. Now, I slept the last part of the drive home and still arrived exhausted. Some company I am for the drive. Then, poor Mark has to push my chair in because I don't have the energy to roll myself in. I then plop myself in a recliner, guilt ridden while he unloads the car and goes to the store. Someone asked me this weekend how I "feel". Not counting the pain, I honestly "feel" great. It's the fatigue that just kicks my behind. Pain, while frustrating and let's face it, painful, is manageable. You take a pill, rub the muscles, cry and pray A LOT. However, you get through it. The fatigue, I just can't get a handle on. I was reading another blog today of someone who is also fighting fatigue and feels like she's "married" to her couch. Boy, can I relate. For me, it's not a couch, it's a recliner. I am horrified by how little activity it takes to put me in the recliner. Of course, It's also safer for me to be there. My left knee looks like it belongs to an 8 year old boy from all the falling I've done lately. Which also pisses me off. MY MS generally chooses to mess with me by taking away my energy, messing with my balance and making my fine motor skills "not so fine". Yet, it leaves me FEELING "normal". I feel like I should be able to do everything I did before. Yet, inevitably when I try I either end up on the floor face down or in the recliner butt down because my day's allotted energy allowance was drained just getting out of bed and dressed in the morning. Of course, trying to find the humor in the situation is just what I try to do......so I'm searching.....digging REALLY deep. Nope, not a chuckle to be found let alone a really belly busting guffaw. So, I think for this evening I'll just let myself be pissed off. Yep....feels about right!

And the band plays on......

off key. That seems to be my life with MS. My favorite time of the day begins and ends about 10 seconds before full consciousness kicks in. It's those brief nanoseconds when I hover between sleep and wakefulness. During that brief period of time I don't have MS, I'm not thinking about MS and my brain isn't awake enough yet to remind me of my limitations. Then, I try to roll over and the band begins playing off key. Rather like 6th grade band. Remember the 6th grade band?They sure try hard. 200% effort is given. They just aren't quite there yet. Just like my central nervous system. The brain sure tries to get the signal where they need to be, but everything is off key. I wake up each day like everyone else. Not knowing what the day may bring. Yet while others worry about what bill may come in the mail, the grind of yet another day at the office or the quote the auto repair shop will be giving them, their band plays in perfect tune. Rather like the Philharmonic. My day begins with the same mental worries. Then things like trying not to fall and getting dressed without help become my focus. Once I'm dressed, (independently and without falling I hope), and in the chair my life, for the most part, IS like everyone else's. Same worries, same frustrations, same joys. And the band plays on.......