Simple Ways to Support a Significant Other Living with MG
I might have been dealt an unlucky hand in terms of my general health, but I believe I was the luckiest of all when it came to assigning significant others. I am blessed beyond measure with Tom, who is caring, sweet, and understanding.
People can show they care in many ways, but the following examples are simple things that are among my favorites.
When someone is in the hospital as often as I was, people tend to expect that we get used to it. They believe we should adapt and that “it can’t be that bad anymore.” While they are right — the experience is far less intimidating over time compared with the first few admissions — it remains an all-around unpleasant experience. In all our years together, Tom has always come to visit me in the hospital with flowers or a gift, even if I was only in for two days. This made me feel like he acknowledged the inconvenience these hospital stays were imposing on my life.
He knew I was used to going to the hospital, but that I would never be used to staying behind after visiting hours were over. If he was traveling while I was admitted, he always made sure someone was at my bedside to keep me company. I never said it aloud, but the thought of hospital stays still scares me to the bone. So many things could potentially go wrong. Tom never questioned my anxiety; he just supported me through it.
Something as small as motivational messages can also make the biggest difference in one’s will to keep fighting. It’s nice to know someone is cheering you on, even when they’re not with you. Once I needed to get my driver’s license renewed, but the system was lagging and it was taking hours. My body became more uncomfortable and weaker with each passing minute. I almost decided to get up and leave, but Tom sent me a string of motivational messages, affirming his belief in me but also acknowledging the limits my body creates.
He knew it wasn’t purely a situation of mind over matter. It was a matter of my body having to do something it would not normally be able to do. Of course, I slept for hours as soon as I made it out of that office, but I left having accomplished what I went there to do. I gathered strength from that. Sometimes it’s nice to know that someone else understands and wants you to succeed — no matter how small the victory might seem to a healthy individual.
The last thing I will mention is that he always carries my load. I can be carrying anything from an overly heavy trunk to a small backpack that wouldn’t be a problem for most people and he will always take it from me. It doesn’t matter if he’s already carrying three bags, he’ll carry mine, too. He always says, “It’s not as difficult for me,” in a manner that makes it seem so obvious. I sometimes wonder why other people don’t understand my limitations as well as he does.
He even automatically gives me an arm for support when we approach stairs or to pull me up from a sitting position. These things just show me that he understands how difficult even the simplest of things can be for someone living with MG.
All of these things were born from adequate communication. At some point during our time together, I likely said I found certain things difficult, and he has found ways to help. These things took months to form, but they eventually became habits that both made my life easier and showed me how much he cares for me.
You deserve someone who makes you see how beautiful life is. Never stop fighting.
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Comments
carol graf-haslam
Thank you Retha for the wonderful article "A Good Life with Bad Muscles" I have a "Tom" whose name is Neal. We where only married 1 1/2 years prior to the onset of "some disease". Fibromyalgia was the first Dx. I proceeded to get Dx with essential tremors. It was almost 2 years of running from Dr to Dr From USF to St. Pete, Punta Gorda, Port Charlotte, Ft Myers with my records going to the Mayo Clinic, Johns Hopkins and every else someone
wanted to "look them over" All the blood work and test did not Dx the MG. I finally had a single strand muscle test done at USF which Dx MG. I could not have botox. I had my first "Crisis" and ended up in ICU for 3 weeks then therapy to learn how to dress myself, eat, walk and talk. Gradually with Neal at the helm we passed all those tests and 3 weeks later I came home.
Neal does 90% of the cooking, laundry, all of the grocery shopping and the dishes.
MG has put our life on hold for the past 7 years. We will be married 10 years in June 2019. There are days that I sleep more than 1/2 the time but when I awaken everything is done. I know it is harder on Neal than it is for me.
Since Aug 2018 I have had 5 heart procedures including 2 ambulance rides from the cardiologist office being in A-Fib. I now have a pacemaker, watchman, 2 ablations and scores of other tests in and out of the hospital.
Neal is my driver, my best friend, the love of my life. I do not know what I would I would do without him. He has gone thru prostate cancer treatment, 28 radiation treatments and Lupron injections which put him in menopause. Hot flashes, exhaustion, depression, lose of muscles but never once did he think of him self first.
I have declined to using a walker most of the time. I get IGIV Octagam every 2 weeks over a 7 hour period. My MG is exacerbating now so I am less able to do much of anything. I have been Dx with Dementia and it makes me so sad and angry when I can't finish a sentence or remember what I was thinking of or a conversation we had this morning.
Just don't give up on yourself. We did not ask for this, did not want this, don't deserve this but there is nothing we can do to get rid of it. Just be thankful for our caregiver and remember to tell him how much he means to you.
Retha De Wet
So happy to hear that despite your struggle, you still have Neal to carry you through it all! Good luck with everything you are facing. You seem like a very brave human being. We must just keep fighting!