It's been awhile

If you have followed my journey you know the progressive nature of my illness. I just haven’t had the energy to write lately. Sometimes I just feel like I am doing my best to get through the day. 2020 and 2021 have been challenging in many ways for all of us. As I continue to lose portions of my independence, I miss my friends and my freedom.

We have a lot to catch up on.

I always try to put a positive spin on my blogs so I will start with that. I am forever grateful for the blessings I have. It is not lost on me that I live a privileged life. Despite the daily challenges, the continued health struggles, and the frustrations, life would be a lot worse without the support of my friends and family and financial security.

I am a strong person but MS is a brutal foe. I would have never predicted my MS would have progressed this quickly and I would go from walking to wheelchair in 5 years. Nothing has changed the direction of this unpredictable disease. Not diet, physical therapy, stem cells, or medication. I feel like I have crossed the threshold from trying to overcome the impossible to trying to manage the reality. I truly believe people overcome the predicted outcomes of diagnosis all the time. There are too many stories of people finding a path to healing despite the medical research. Just not me. Not this time.

I haven’t driven since before Christmas. Driving with hand controls forces me to steer with one arm using a steering wheel spinner knob. I strained my left shoulder and am still trying to gain enough strength back to drive safely. Now I am dealing with a pinched nerve in my right shoulder. When the legs don’t work well the upper body get strained from overcompensating. I am also struggling with getting in the car safely by myself at times. I haven’t given up but with the pandemic there hasn’t been as much of a need for me to drive so no need to push the limits.

So now we have entered a new phase of a progressive disease. My safety around the house has become a concern. We have made changes and I have tried to stock myself with plenty of aids to keep me from ending up on the floor but it still happens sometimes. Yes at 51 I have uttered those famous words “Help! I’ve fallen and I can’t get up” a few too many times. I am thankful to my family and neighbors who have come to my rescue on several occasions.

Because of these challenges, I now have some wonderful ladies who come to the house for a few hours several times a week. This by no means was an easy decision for someone as independent as I am. I am not ready to have a full time care taker but it is nice to have some help. I started with Jessica in the fall and now Abby and Jaimie have stepped in to help with exercise, meals, chores around the house and errands. The next step is finding someone I am comfortable with who can spend the night on occasion if Rich wants to leave town. Mason steps in at times and Megan has too but I cannot always put that burden on their shoulders. I guess I need to just hire a babysitter lol.

Despite the obstacles we continue to find ways to make life enjoyable. We have spent many nights and weekends at our lake house on Lake Limestone. We love our lake view and we have some wonderful neighbors. It is nice to have a fully accessible getaway. We have also been able to travel to resorts in Mexico and the Dominican Republic in the last year with our dear friends Mike and Wendy. Traveling is a real challenge and we are so grateful for the invitations. I am grateful to have a husband who can lift me, carry me, and make sure I enjoy time at the beach or wherever we choose to venture. Even if it means hearing me nag about the dilapidated beach wheel chair but eventually getting me in the ocean.

Daily life continues to be a struggle. Fatigue every day. Afternoons are particularly bad. Weakness that makes it difficult to stand, especially when I am tired. Spasticity that makes my muscles tighten up making everything more difficult. I have still managed to handle my basic needs around the house but going anywhere that is not fully accessible poses a problem. If Rich and I visit the restroom together do not be alarmed.

There are days my strength is good and some not so much. I started this journey trying to avoid the traditional path of medicine and disease progression. I still take supplements and monitor my diet but I’ve learned to relax the rules a bit to make life easier. I still do not like relying on medication but I have no choice. There certainly is no magic pill that makes me feel great but I am willing to try and do take medicine that gets me through the day when needed. Probably the biggest shift in perception is accepting limitations and help. I have the luxury to let others take care of me but I don’t like it.

People with chronic illness tend to seek out others going through similar experiences. Through online forums and social media it helps to know you are not alone. There is no room for “why me?” If you go through life without any major complications whether it’s illness, death, divorce, or any other personal tragedy you are truly the lucky one. My complication may be ongoing and yours may only be temporary but life still goes on and you might as well be grateful for the good times when they come. That doesn’t mean I don’t complain or get frustrated or have sad days. We all do. I’ve written about being grateful many times because I need the reminder as much as everyone else.

To those who take the time to follow my journey, thank you. For you I am grateful.