Finally returning home and having my new adaptive devices and equipment is great!
The power wheelchair is proving to be the best change of all for me, even though I miss my manual chair. However, I am wider and bigger now, so judging width and depth is a challenge. My walls and cabinets have scratches all over them, but I choose to laugh as my husband and children wince.
Transferring to and from the wheelchair with the new light transfer board is working out nicely. I am not having any issues with fatigue as long as I follow the downhill slide approach I was taught at the hospital. I am able to use finger extenders to help me type on my laptop, which is great, because I can still work! Having different length kitchen tongs to assist me in grasping them has also been quite pleasing.
Though I do continue to drop things because of the muscle weakness, I do not need as much help as my occupational or physical therapist thought I would. However, we have hired an assistant to come each day to help me for the first three months after my mother returns back to London. The assistant helps with cleaning and tasks that keep my house in order, and also helps me tend to my 3 ½ year old son.
My bladder is still an issue. The medication that helps treat Myasthenia Gravis causes the muscles to contract and actually works against the bladder medicine I use to help stop overacting. I came home with a Foley catheter inserted but found that I cannot manage it as well as I thought because of the weakness. So, I have gone back to the self-catherization kit that gives extra sterilization to prevent infections. In addition, I am learning that if I time “cathing” to right after taking my medicine then I have more energy to successfully empty my bladder with ease.
Even though I am getting much needed rest from being in the hospital for many weeks, I find using aromatherapy candles and natural sleep aids are the only way I can combat the insomnia, which is the side effect of Mestinon, the main medication for Myasthenia Gravis.
Having my mother here for a few more weeks was extremely helpful, even though it felt somewhat like a step back in time for us both. Fifteen years ago, after my spinal cord injury, she came and helped me in the same way. This time we are both learning that my body is different. My muscles are incredibly weak from Myasthenia Gravis, and returning to being a high functioning paraplegic will take time. Still, I cling to the promises of all my doctors that I will eventually get better.
In my own experience, and from watching my friends and peers, telling a person that uses a wheelchair they cannot do something is not going to get a positive response. We still want to do everything we need to do in our lives, and for many of us it is a necessity to get up each day with a purpose - whether it is work, volunteer programs, or being involved with family. Being home now, lying in bed, or just sitting in my chair while watching television is proving to be the necessary distraction I need in order to heal. For me, a busy person, spending time just lying around has been a struggle to accept. It helped when one of my friends reminded me that truly heal; I must relax into my healing.
Also helpful to me has been an analogy I heard from the facilitator at the support group for Myasthenia Gravis. (It also makes me wonder if each of us with this stress-induced disorder has more in common than just Myasthenia Gravis.) It is known as the spoon theory, by Christine Miserandino. Christine uses the theory of spoons to explain how she copes with the lack of energy level suffering from Lupus. I have a specific amount of spoons per day. Each spoon represents a task. Particularly with Myasthenia Gravis, I may wake up and find because I didn’t sleep well, instead of having twenty spoons like yesterday, I only have fifteen spoons. Brushing my teeth is one spoon, and brushing hair is another spoon. Being a mom on wheels I also have to make sure I save enough spoons to be able to take care of my kids throughout the day, and cook dinner at night. I also have to save some spoons to take my medicine, and enough spoons to eat, drink and speak.
I also remind myself that my doctors have told me it is normal during the initial stages of receiving medication, including the monthly regimen of intravenous immunoglobulin fusion, to have more bad days than good, but as I continue my treatment and listen to the experts, I will enter remission - which is the only “cure” for Myasthenia Gravis.