Simple Ways I Make My Life Easier at Home
Simple Ways I Make My Life Easier at Home
My boyfriend, Tom, and I are finally moving back in together after 15 months of being in a long-distance relationship. While that in itself is amazing, it involves one terrible part: the physical act of moving.
Although moving is a myasthenic’s nightmare, packing up my whole life again has highlighted just how much Tom and I do to make my life easier. We don’t even realize it anymore.
When I move somewhere new, the first thing I do is hide a secret stash of Mestinon (pyridostigmine) wherever I can. I ensure that I always have access to the little orange pill that keeps me going. This has unfortunately resulted in some bottles of Mestinon expiring before I find them again.
Quick tip: Always write down where you stash medicine. Brain fog can be a symptom of myasthenia gravis.
I’m eternally grateful that my technophobic self ended up with an electronics engineer. Technology can be amazing, but only if you know how to use it. Tom has improved my quality of life significantly by installing smart-home devices. We have a Google Home speaker in our room that allows me to lie in bed and turn off the lights without getting up. This is because Tom also bought special lightbulbs that are connected to our Wi-Fi. I find great solace in using my voice when my legs need a break.
Our electric blanket is the best investment I have ever made to help soothe my aching muscles at the end of the day. I know some doctors don’t believe myasthenia gravis causes pain, but worsening pain is without a doubt a symptom of exertion for me. Since physiotherapy isn’t always an option due to restricted finances, my electric blanket comes in a comfortable second place for me.
I am physically unable to take part in housework. Tom does most of the cooking and cleaning, as these tasks are simply too exhausting for me. I help by ensuring there is a good supply of ready-made meals in our freezer. Since I can’t think of anything with more repetitive movements than sweeping, we are also getting a Roomba. It not only will help with pet hair, but also my hair loss from Rituxan (rituximab).
Tom and I have found the perfect place to call home. I can’t wait to move in and start finding new ways to make my life easier around the house. Never forget how much you do to compensate for your myasthenia gravis without even realizing it. Never underestimate how hard you fight. Life is beautiful.
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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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Comments
Jimmy Squires
I find that using an Instant Pot is a good way to cook up 2-3 meals at a time. I then freeze the leftovers in 2 person sized portions and use a vacuum sealer if I plan on not eatting them in the next week. There are great recipes on the internet.
Retha De Wet
Thanks so much for adding this awesome tip! I'm sure it will help many others.
Cyndi Brauer
Hi Retha!
Congrats to you and Tom for finding such a special new place to call your own and for being able to be together again, moving forward and daily living your best life. As an MS Nurse specialist, I can certainly understand having to make adjustments to almost every area of your life so that you can live it well. I wanted to share with you and your readers a book I recently got, updating the prior version to be able to help my new patients that I will be serving with MG. There are quite a few similarities between the two diseases, as well as their differences, but I believe that all can benefit from the information to just make life easier! Perhaps it could be a really great resource to augment your personally created tips and adjustments but also help those that don't know where to start. The book is: Multiple Sclerosis Tips and Strategies for Making Life Easier, 3rd. Ed. by Shelley Peterman Schwartz. I want to say thanks for your column; for sharing not only your insights, your life, and your struggles, but also your heart with us to make our lives better. Thank you for leading us into a giving, caring and loving community. I wish you and Tom the very best! Live, laugh and love very well! Cyndi
Retha De Wet
Ah, thanks so much for reading! Will definitely go read up on that book, thanks!
Rosa Lombardi
With best wishes for this new beginning! and thank you very much for your words and advise. I never miss your column.
Retha De Wet
Thanks for reading! <3
Cormac Kelly
LOve your realism and positivity. YesI also carry a emergency pack with steroid , Pyridostigmine and Immodium(for diarrhoea) in my car, in my locker at work and in my work bag. Wish there was an inhaler or sub lingual Pyridostigmine to give a instant hit.
Retha De Wet
How could I forget about my equivalent of Immodium! Such a vital part of my existence. Hopefully the scientists are working on that "instant hit!"
Carrie McDade
Great tips! I was diagnosed 8 months ago at age 69. I’m lucky and grateful my my husband likes to cook and doesn’t mind cleaning and grocery shopping. I also have muscle pain when I go to bed: occipital headache, neck and shoulder pain.
Now, let’s see those doggo pix!
Retha De Wet
Your husband sounds like a great man! I hope your pain is at least manageable. I will be writing a piece dedicated to my doggo soon & I promise to include lots of photos!
JOHN D AUTORE
In reply to the "INSTANT POT" comment by Jimmy Squires ..... I also found something similiar to use to ease my cooking and have ready meals, as I get pooped out easily by having MG .... and want instant, quality food quickly. It is a MICROWAVE RICE COOKER by NORDIC WARE. I got my first one at TARGET STORE ... and later picked up two more new on EBAY or AMAZON. You can easily cook any rice or pasta dish ... and have enough for a three or four meals in fridge for one person during the week. So I can quickly reheat a serving of dinner quickly for breakfast also. I can microwave precook ground beef or diced pork or beef ... then add it to the MW pot when I cook the rice or pasta.
I ended up getting two more pots .... so can alternate meals.... one is a rice pork dish ... such as tomatoes, rice and pork. The other pot is a pasta ground beef dish ... such as goulash or spaghetti, So I have both meals in fridge at same time. Also I can do a ground beef/rice dish with soy sauce and condensed cream of mushroom soup. With some experimentation on cook times and liquid amounts to add .... I have also used my Nordic Ware MW cooker for rice-a-roni or pasta-roni. The white pots are about seven inches in diameter and about 4.5 inches deep .... so probably hold about a gallon worth of one-dish-dinner. You cook meal for 6 minutes .. stir contents and cook for 6 to 8 minutes more. Then close top vent and let it steam for a few minutes till done. Quick and easy with leftovers .. you can pull out and reheat next morning in a smaller Microwave bowl.
Armando de Oliveira
Thank you for the comments and tips Retha. We hail from the same part of the world and am a South African National but currently retired and living in Malawi. I was diagnosed with MG in late 2019 (age 71) and also started a list of tips. I carry a stash of Mestinon with me all the time together with my mobile phone that I have programmed with alarm that goes off at the appropriate "pill time". I didn't know about immodium but will surely try this as it is available here.
This is a great publication and am so glad I stumbled upon it a few weeks months ago whilst looking up MG literature to prepare myself for what to expect in the coming months/years. Really look forward to the next News! Thanks again
Retha De Wet
Thanks for reading and connecting, Armando! I use an app called Medisafe that lets me tick off my meds and sets alarms too. Happy you learned some new tips! My column gets published every Friday for your reading pleasure :)
Randal Neely
MG 6.5 years or 7. Covid 19 vaccine in Feb and March. Steady decline of health fo)owed both shots. Apr 16 chest muscles stopped my breathing. Barely got to hospital Okla City. Extremely close to end. Had IVIG next 22 hrs. Plus 24 hrs later. Vaccine exacerbated my MG.