Who I Was Before AxSpa Is Very Different Than Who I Am Now

Before getting diagnosed, I was always an "on-the-go" kind of person. I used to love to go out. I hated being home, all day long. When I mean I loved going out, more like going to a movie, spending the day out shopping at the mall, long walks outdoor, taking my kids to the park with no time limit. Doing my groceries was one of my favorite things to do. I was able to go to several stores without a break. I was able to plan a whole day full of activities with the whole family. Like wake up in the morning and go for breakfast, visit the grandparents or the rest of the family, then followed by groceries and then meal prep for the rest of the week.

"Me" time

I used to love going to the salon and getting my hair and nails done. I used to love putting on makeup and having my outfits put together. I remember looking forward to going to work, as it was my break from the kids and the hubby. It was my me time. It was seeing my coworkers and having a laugh or two. I use to wake up as early, as 4 am to pick up my coffee and excited to start my day at work--early.

I was a very anxious person. I wouldn’t like to be in one place, instead I would like to keep myself busy and move around a lot. Let me not get to my cleaning. I was a clean fanatic. I loved myself a clean house, all the time. I liked to have everything tidy and in place.

Pressure

I used to put on myself so much pressure to do everything all at once. Which would then cause me to stress out and cause more anxiety. I do remember through all this, having moments where I would do too much and then had to be in bed for a couple of days. I would call in sick at work. I would feel so exhausted, no energy to participate in anything around me, causing me depression.

During diagnosis and after, I slowly knew I couldn’t continue on this way. I couldn’t continue on this way of life, this way of a routine. I needed a new routine to be able to have a better quality of life. These habits are what made me be more bedridden and didn’t help my disease.

Things had to change

Things had to change for me if I wanted to learn to live a better life with having this chronic illness. I knew I couldn’t work anymore the way I did. I had to learn to accept it. No more driving long distances. No more sitting too long. It’s been 2 years, I still haven’t returned to my original job. I am still on sick leave and scared not knowing what my future holds. It’s taken a long time to accept I need to find a new job.

I have changed my plans. No more planning in advance. As I never know how I will feel. I try to plan the day before or that same day now. If I do have something important, I will try my best that week not to do much, so I can make it. My groceries look a lot different now. If I do end up going groceries, I make sure to bring my daughter or hubby with me to help. I will rest before and after groceries. I now take a lot of breaks. Before, during, and even after, as much as I need to rest rest rest. I had a hard time doing it, but I have come to realize, that this is the key to do the things I love and to keep going.

Finding enough spoons

The same thing goes if I want to go do my hair. I have found a place where I am comfortable, quiet, and not many people. I find a hairdresser that I love and works from her house. I have also been open with my hairdresser and lucky for her to understand. Again, If I have planned to go do my hair or anything like a doctor’s appointment, I make sure not to do much, or to do as little as possible, to have enough spoons to be there.

Now don’t get me wrong, sometimes you may do all these steps and still not be able to go anywhere. You might even have to cancel. It has happened to me so many times. It is not in your control always. Your body sometimes can have more power over you. This disease can sometimes be unpredictable. You need to remember, that it’s not your fault. You need to remember, you are still doing the best you can.

The difference between now and then, I have actually learned how to be more patient. I have learned how to appreciate all the little things in life. I have learned to take my time. I have learned that things don’t always have to be perfect. I have learned how to take a step back, breath and take one day at a time. You can still enjoy the things you love, but in a little different way. I have learned that not everything is in my control.