I can, I have, I will....
- Pamela Mills
- Aug 11, 2016
- 6 min read
This morning I went to the gym. I have been trying to go 2-3 times a week. But today wasn’t just another day at the gym for me. This morning was one of those moments that is part of my life as a zebra, which has compelled me to blog today.
I first started going to the gym about 6 months ago. I was taking the yoga classes, but I found that I didn’t have the strength to complete the class. I would have to take breaks several times. The class times also didn’t work well for all my doctor appointments either, so I changed my routine. I now do cardio on the recumbent bike or the recumbent stepper. Many of the other machines, such as treadmills and elliptical machines, cause too much pain in my back. I have also started circuit training on the weight machines. At first I couldn’t even do ten reps on the minimum weight, but now I am able to do up to 60 reps on minimum weight on some machines and on others I have even increased the weight. It has been a lot of hard work. I thought I was doing really good- until reality decided to slap me in the face again.
A year ago I finally got the right treatment for my back problem, which is epidurals every 3-4 months. I am now walking again. I can walk around the block. I don’t need to use a scooter at the stores and I don’t park in handicap spaces very often anymore. Just this last weekend I went to the farmer’s market, then walked half a block to comic con, and then walked back to the car. I was exhausted at the end- but I did it. I gave myself a big pat on the back for doing so very well even with my problems and pain.
A few weeks ago I was honest with my doctor, as you should be. I explained how well I was doing and the problems I was having after this last epidural that I had in June. He decided I needed to go back to physical therapy again. I was stunned! I thought- but I am doing so well!! I kinda kicked myself for even being honest with the doctor- feeling like I was being punished or set back. Anyhow, I wasn’t happy with the idea, but he’s the doctor and knows what he’s doing so I went along.
Yesterday I saw the physical therapist for my initial consultation again. He had me walk and do different things and fill in questions about my abilities and pain and such. Fine, right? Normal paperwork. Then he asked how I thought he could help me. So I explained to him that I didn’t think I needed physical therapy, I just need massage therapy as the back spasms and such were the worse part and caused a lot of pain- even interfering with my sleep quite a bit. Then he told me that I do indeed need to work on my core still. He stated that I also was using only some muscle and not others due to pain, which was causing those muscle to overwork. He stated he thought I needed to work on building up those other muscles and that he had a plan for me.
On the way home from this appointment I continued to be skeptical and reiterated to my boyfriend that I didn’t need physical therapy because I was walking and doing well. He stated that although walking around the block was great, I still wasn’t able to go for a real hike. I can’t walk all day- I can’t go on an all day hike, I can’t even walk across the playa at Burning Man like I used to be able to do. I knew his evaluation, along with the doctor’s and the physical therapist’s was correct. But I still felt like I was being set backwards. I dwelled on the work that I had done. I knew it was good and that it could be better.
So this morning I went to the gym again. I did my cardio- up to a standard 20 workout. Then I did the weight machines that I can do. After that I found a mat and started doing my pt.( physical therapy) exercises that I had been given the day before. At first I felt like the exercises were simple and unnecessary. Then I started to feel the muscles working and they got harder to do. Eventually I got to the exercise that I have always had trouble doing. This exercise begins on your hands and knees and they you stretch out one leg and the opposite hand, then exchange for the other hand and leg. After doing 15 of them I was falling, tipping over and it hurt. I took a break. I went again and did another 15 of them- this time I was having a lot of trouble doing them. I took a break again and
began the final 15 reps of these. I had to keep stopping. I kept falling over. I had so much trouble. Then bam- the tears began. It hit me that maybe I do need physical therapy still. I guess I am not in as good of shape as I thought I was. I began to cry, thinking of how my physical therapist had told me I was at a 55% limitation in my life style right now. He said most of his patients are at 10%
or 20% when they first see him. I let it out- right there in the gym- not caring who was watching.
When I got home my boyfriend know that I was upset. He asked what was wrong. So I told him. It felt like reality had slapped me in the face. It was as if all the pain and hard work I had done was for nothing. James told me I really needed physical therapy. That yes, what I have been doing is good. It is working. I am doing better. But that I am still not at a normal level of physical fitness yet and that physical therapy will help me get better.
We continued to discuss this. I cried. He supported me, but encourage me to listen to my doctors. I know that what they say is true. I know that my hard work has paid off. I know that this is just another step on my long road of recovery.
All of this may sound like a whining, crying and complaining story filled with self-pity. But this is the reality of my life. I do have breakdowns like this because when you have been ill for so long, the road to recovery is not easy. I know it’s okay to cry at times. When I was young and had problems I knew an unspoken rule was that a five minute pity party was okay, as long as I got back up and kept going. This is what I will do now.
This may not seem to have anything to do with my CVID and my life as a zebra- but it does. I got to such a state of poor physical health after being sick with infections for over eighteen months straight. I know that lack of exercise due to health and pain issues let my muscles degrade. Steroids and other medications also put on more weight. The need for several abdominal surgeries was due to the ‘domino effect’ that my CVID had on my body as a whole. So after years of not being able to do much has put my body into the weakened state that I am now trying to work my way back from.
Being a zebra is not an easy thing. I see the ‘inspiring’ stories on the immune disease magazines. I think that it’s great that someone else was treated and can now run marathons and such. But I am not there- yet. “YET’ is a key for me. I know that I can come back. I have regained my health before. I will doing it again.
It has been about two months since I first wrote this post. I am almost done with physical therapy again I have noticed improvement in my walking. I'm sleeping better and have less overall pain. The process has taught me new exercises to strengthen my back and my core.
I have been working really hard on doing these exercises. I typically do more than the therapist suggested. I have also been going to the gym on days that I don't go to physical therapy. At the gym I do all my physical therapy exercises along with cardio on the recumbent bike and then do the weight machines that I was told are okay for me to do.
I have been trying to follow my diet. But I must admit that I love my sweets and have been indulging myself. I have regained some of the weight that I lost earlier this year. Now I am getting back on track again. I know that I can lose the weight and get in shape !
So Zebras- Keep going. If you fall down, get up. We can do anything we want because we are zebra strong. Hugs and much love to everyone is my dazzle.
