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How has living with Myasthenia gravis impacted your comfort zone?
As individuals with MG, we often experience fatigue more quickly than others, so we may need to plan our day around rest periods. This can limit how much we can engage in social activities or physical exercise. Certain situations that require prolonged attention or effort, like prolonged work hours or strenuous activities, might become overwhelming.
How has living with Myasthenia gravis impacted your comfort zone, and in what ways have you had to adapt or change your daily routines to accommodate your condition?
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17 Replies
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Though I am retired I am still active, working on house related projects (yard, pool, carpentry, etc,) and we cruise frequently and do community service through our local VA. I am back to doing those things again but doing them in a more self-aware manner. If I need to take a break I do and if I need to quit for the day I do. I’m not doing as much for as long. Just paying closer attention to the signs of my body.
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I have lost most of my independence rely on others so much , can’t plan things to far in advance cause sometimes I’m not able to do it , I use to just get up and go not anymore energy level instant there most of the time , and if I don’t write things down ( where I’ll see it , like next to.the phone ) I’ll forget but one thing the side effects of the meds keep me hopping.
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Keep hopping!
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A few months before being diagnosed with MG my best friend passed away who I had cared for for many years. The last few years were 24/7 care and my days were 10 to 12 hours. It has been very hard to accept that I no longer have that level of energy. Fatigue creeps in even if I have only been up a few hours and have not done anything strenuous. I also never know when the medicine is going to cause diahreah. Sometimes, if I need to be somewhere, I do not take my medicine so I do not risk diahreah. Long trips are no longer enjoyable as I never know how I will feel from one day to the next. It has been about 16 months of adjusting to this health condition. Thankfully I do not have any other health issues to deal with. At 80, I am blessed.
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I have no muscle left in my body, I used to be an Ironworker and a Vietnam soldiers, MG is related to AO exposure. How long does it take to die?
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Pain! As the day goes on, more pain! Some of the Pyridostigmine doesn’t work, the VA gets it from different Pharmacuticel Company’s. The Py. meds from Major Pharmacutical Co. worked the best for me. Does anybody know where to get them?? TIA
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I feel for you Paul. I’m 75 and also a VM vet. I have MG for the last ten years, but the last year has really been hard on me. I have also lost most of my mussels. The pain in my legs are always hurting. Doctor put me on prednisone, which worked pretty good, but had to keep increasing my dosage. Finally got up to 80 mg a day with side effects. They took me off and I thought I was dying and rushed to Hospital . Prednisone reduced to 60 mg a day for three weeks and then going down to 40 in three weeks. Seeing if this works. Please also, I need help.
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If your feet burn and itch it’s <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>neuropathy, any diseased condition of the nervous system, AGENT ORANGE! Gabapentin works!!!! It will get rid of the pain but you will be on it till the end. See an Immune Neurologist and thell him abou Vietnam and AO. God speed.
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BTY, The Py. meds from Major Pharmacutical Co. worked the best for me. Not all Pyrd meds are the same grade of GOOD!
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My comfort zone remains high as long as my symptoms remain low. Currently controlled with p-tabs, mycophenolate and IVIG I’m scoring low on the MG ADL and stable.
But prior to this, late onset and delayed diagnosis forced my early retirement, because I was not comfortable with the potential costs of mistakes, or hazards I’d encounter or create, while my symptoms were not under control.
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Hi Robert – Thank you for your response. May I ask how long it took you to level off with the generic Mestinon, CellCept and IVG? I am struggling with MG symptoms and hoping this combo will help me level off.
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I’ve been relatively stable since early on, with daily mestinon and IVIG therapy. I’ve been unstable (in crisis) once, a year after suspending IVIG; resuming IVIG returned my stability. I’m tolerating it well but it’s still too early to tell cellcept’s impact.
Hope this helps, and good luck with your journey.
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Emotionally and spiritually my comfort levels are great; I try to use my experiences with MG and its symptoms as a vehicle for learning more about myself, my relationships, in the world around me. I try my best not to have pity parties about what I can no longer do.
And looking at what I can no longer do, it would be easy to say that MG ruined my life, but that’s not true. My life is very different than it used to be, but through this MG adventure, I have found that I have a lot of people who love me, have an excellent healthcare team, and that I have a family that is the best caregivers in the world. I’ve also learned that it’s all about perspective. In a lot of ways, I’m happier now than I was in the past–life is just different and more limited. But I get to read a lot of books! ;->
While I no longer can do most of the chores I used to do such as walking our dogs every day, doing yard work, going grocery and other shopping, and other tasks around the house and yard, I feel that I am doing well, especially when I’m able to stay living in my moment and not dwelling in the past or worrying about the future.
I look at my life with MG as a learning adventure that offers me new insights and challenges each day! Thanks for asking!
Love, and Light Frank
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The biggest challenge is making firm commitments as I’m not sure I’ll be able to meet them because I’m on immune suppressants. I can’t commit to picking up my granddaughter after school once a week because she’s either got a bug (Grade 1 – she gets everything!) or I do. I also have to cancel a lot of family dinners and appointments (esp during the winter) and avoid places where lots of people gather. Despite all that, I am going to my granddaughter’s Christmas concert today even though I have a sinus infection and will be exposed to a germ bomb in an auditorium full of K-Grade 3 students, but I’ve had my shots, I’ll wear a mask and keep my fingers crossed. That said, I do resent the physical and social limitations presented by being immune suppressed. My MG is under control, the immune suppressants that keep it there are the challenge for me. The biggest challenges are the sudden infections (UTI, sinus, lung, skin) and months of slow progression of viruses because I can’t fight them off. Mestinon alone causes eye twitching so bad I can’t see to drive and my fingers and toes are crossed that another non-immune suppressant treatment is on the horizon. I take Cellcept now.
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Try Pyridostigmine. God speed.
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My MG journey has been multiple hospitalizations in crisis and multiple drugs that only work a short time. But if you ask my friends and family. they would say they never would have known it they hadn’t seen me in the hospital on bipap or ventilator. That is because I don’t let it get me down yes I am immunosuppressed and immunoglobulin deficient and probably should live in a bubble but where is the fun in that. Sure I can’t go to my house in Florida and do things like kayak and walk the beach,or sea doo, myself . I find workarounds. I take a wheelchair to and off the plane,then rest for the rest of the day,I can’t walk the beach but I can roll on the boardwalk. I can’t kayak myself I tandem kayak and my husband does all the work,and I can’t sea doo and race and have a blast, but I can be a passenger and go slow. All while wearing a mask. Yes most things I can’t do anymore the way I used to,b I 7ut there are few things I don’t do as I can find work around for everything and my friends and family work with me. Do I have bad days yes when I end up back in the hospital, and yes I do have pity parties but I time them. So I don’t dwell on them.
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This is an excellent subject. MG by itself is an insidious affliction. Add to it a chronic condition that requires pain management; it can become downright unbearable.
I was diagnosed just over four years ago. We estimate I was treated for symptoms not attributed to MG for an additional eight years. Taking the suspected onset to twelve years.
I also have a friend who recently moved from ocular to generalized. We try to meet up once a month for support.
This year, we both experienced a significant increase in fatigue. We thought it was because of the heat of summer, but now that we’re in damp, gloomy days of winter with no improvement in fatigue, we can’t explain it. Add to that the side effects of the medications, and trying to gain any sense of predictability to plan projects or events is nearly impossible. As I try to explain to others – it’s like trying to nail jello to a wall.
If you have someone local to you, we have found that having someone who can truly understand what you’re going through really helps. As does an attentive therapist. Our spouses are supportive, as are our doctors. But no one has a true sense of MG’s day-to-day life’s erratic, unpredictable energy.
It is stated that MG has no impact on life expectancy. I disagree. Although it may not impact the number of years you live, it has a tremendous impact when comparing life before MG to today. Participating in forums like this and keeping abreast of advances have provided me with hope. Keep positive when you can, and recognize the few moments of peace you find. Above all, don’t beat yourself up – MG doesn’t need your help.
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