Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone - I hope you are all well - thanks again for all of your replies on my steroids question - as you probably gathered I am trying to get my head around this!! I think I naively thought that mestinon would be enough - I spent so long pushing for a diagnosis and a chance to try some treatment that now that isn't working so well for me I have no other goal...I really didn't want/expect it to get this far (as I'm sure none of you did either!) and I don't want to push for anything else, as you have all said from here on I have to "pick my poison"...my goals are gone and that puts me in a strange place mentally! I feel like I had some improvement and began to very slowly start being able to do a little more and then it was all snatched away from me in a blink of an eye and I am now left wondering what happened! lol!!
I am finally taking a few days off work to try to give my higher dose of mestinon chance to kick in and hopefully buy me some more time before I have to go to the next level of treatment and it has got me wondering how do you all deal with this? How do you "live" with this? Not just the physical limitations this illness puts on us all but the psychological effects a long-term chronic illness has and the impact on your relationships....and the guilt that comes with the effect it has on the ones you love?
In essence - I am a very lucky person, I have 2 beautiful daughters, a great boyfriend and family and I could happily curl up on the sofa watching films and playing games with my girls everyday :) But, on the other hand, I don't want my girls to miss out on things because of me and I would love to get out and run around with them and go on lovely country walks like we used to. I said to my Dr - if this is as good as it gets, then I will make the best of it - but if I could be better, then I would like to feel better! I am happy and grateful for what I have but I struggle with how this will affect me long term both in terms of my family and the affect my illness has on them and the sacrifices they may have to make and, of course, financially if I am unable to work.
Until now I have adopted a "head in the sand" approach!! lol!! I have become very good at detaching from this, shutting down my emotions and ignoring as best I can, but now that I am at this cross roads with the illness and its potential severity is slightly scary especially now my chest is involved!! In my "shut down" mode I find it hard to let people in, even my wonderful boyfriend in - he is truly amazing but its like I can't let myself "let go" and be my loving self - I just can't let myself need him or even deal with anything else....if that makes sense?! Again, I was banking on this illness being temporary and certainly not on it getting worse! I thought I would be back to myself in a short space of time and everything would be right again.....but that is looking less likely by the day. As many of us know this illness doesn't come alone and whilst I am lucky and don't have any other serious autoimmune illnesses like some of you poor people (I just have very mild Reynaud's and nasty Costochondritis) this, for me, has knocked my trust in myself and my self confidence resulting in anxiety. When I am bad, like now, and I feel generally weak and unwell I don't trust myself to drive, to stand in queues or generally be out and away from home and this has resulted in some anxiety when I do it and me beating myself up when I don't - I can't really win! lol!! I have finally allowed myself to take some time off work and I find myself internally beating myself up for not going out, like I am avoiding it, even though I know that once I feel stronger I will be dying to get back out and the anxiety will fade back down to a minimum? Even when I am good I don't like driving my daughters and I think the unpredictability of the illness and how the symptoms creep up on you is responsible for that - I hope that if I am ever able to become more stable I will overcome this.....I had started taking small steps with this in the few weeks that the mestinon worked well for me last year and I felt stronger and more stable which is reassuring!! I have my little daughter's assembly in the morning and I am dreading feeling weak and the looks that my tired, pale, droopy face will attract....but I really don't want to not be there for her. I know that if I had a cold etc I would probably feel the same and understand that not feel well enough to go out is a perfectly natural response to being ill that I am sure lots of people have, but somehow I can't let myself off when it comes to this! Maybe the fact that I spent years believing this was all in my head has conditioned me to get angry when I don't feel well enough to do things and has caused me to doubt myself so much!!
Sorry for waffling on!! If any of you have any stories you would be happy to share or any tips or suggestions on how I stop beating myself up over all of this I would be very grateful!! And also, any stories/tips on how you came to terms with having a chronic illness, how you live with this and through this? How do you make peace with the effect it has on your loved ones and are there any ways to not feel guilty about it?!!
Thanks again everyone :)
I am finally taking a few days off work to try to give my higher dose of mestinon chance to kick in and hopefully buy me some more time before I have to go to the next level of treatment and it has got me wondering how do you all deal with this? How do you "live" with this? Not just the physical limitations this illness puts on us all but the psychological effects a long-term chronic illness has and the impact on your relationships....and the guilt that comes with the effect it has on the ones you love?
In essence - I am a very lucky person, I have 2 beautiful daughters, a great boyfriend and family and I could happily curl up on the sofa watching films and playing games with my girls everyday :) But, on the other hand, I don't want my girls to miss out on things because of me and I would love to get out and run around with them and go on lovely country walks like we used to. I said to my Dr - if this is as good as it gets, then I will make the best of it - but if I could be better, then I would like to feel better! I am happy and grateful for what I have but I struggle with how this will affect me long term both in terms of my family and the affect my illness has on them and the sacrifices they may have to make and, of course, financially if I am unable to work.
Until now I have adopted a "head in the sand" approach!! lol!! I have become very good at detaching from this, shutting down my emotions and ignoring as best I can, but now that I am at this cross roads with the illness and its potential severity is slightly scary especially now my chest is involved!! In my "shut down" mode I find it hard to let people in, even my wonderful boyfriend in - he is truly amazing but its like I can't let myself "let go" and be my loving self - I just can't let myself need him or even deal with anything else....if that makes sense?! Again, I was banking on this illness being temporary and certainly not on it getting worse! I thought I would be back to myself in a short space of time and everything would be right again.....but that is looking less likely by the day. As many of us know this illness doesn't come alone and whilst I am lucky and don't have any other serious autoimmune illnesses like some of you poor people (I just have very mild Reynaud's and nasty Costochondritis) this, for me, has knocked my trust in myself and my self confidence resulting in anxiety. When I am bad, like now, and I feel generally weak and unwell I don't trust myself to drive, to stand in queues or generally be out and away from home and this has resulted in some anxiety when I do it and me beating myself up when I don't - I can't really win! lol!! I have finally allowed myself to take some time off work and I find myself internally beating myself up for not going out, like I am avoiding it, even though I know that once I feel stronger I will be dying to get back out and the anxiety will fade back down to a minimum? Even when I am good I don't like driving my daughters and I think the unpredictability of the illness and how the symptoms creep up on you is responsible for that - I hope that if I am ever able to become more stable I will overcome this.....I had started taking small steps with this in the few weeks that the mestinon worked well for me last year and I felt stronger and more stable which is reassuring!! I have my little daughter's assembly in the morning and I am dreading feeling weak and the looks that my tired, pale, droopy face will attract....but I really don't want to not be there for her. I know that if I had a cold etc I would probably feel the same and understand that not feel well enough to go out is a perfectly natural response to being ill that I am sure lots of people have, but somehow I can't let myself off when it comes to this! Maybe the fact that I spent years believing this was all in my head has conditioned me to get angry when I don't feel well enough to do things and has caused me to doubt myself so much!!
Sorry for waffling on!! If any of you have any stories you would be happy to share or any tips or suggestions on how I stop beating myself up over all of this I would be very grateful!! And also, any stories/tips on how you came to terms with having a chronic illness, how you live with this and through this? How do you make peace with the effect it has on your loved ones and are there any ways to not feel guilty about it?!!
Thanks again everyone :)
13 months ago, when I was diagnosed, my neuro told me it would take me at least a year to 'accommodate' this disease. He explained that this accommodation would have to be both on a physical and a psychological level. Although I mentally scoffed at this, he was right.
I do believe that I am on top of the physical limitations and have changed my lifestyle around them...but....during the first three months of this disease I had three very nasty falls outside (one of which landed me in the emergency room). These falls scared me badly as they were all the kind where you pitch forward and land flat on your face!
Now, even though I don't go out unless the timing is based around my mestinon, I am still afraid outside the house. I fear becoming a bit of a hermit as a result of this. Like you, I am anxiety prone and my home has become my safe haven.
I 'think' I could be doing more outside the house? Honestly, I don't know, so you can call me 'unsure' as well lol lol. Anyway, I did want you to know that this disease really, really takes time to figure out how to manage and I fear this may be an ongoing process throughout our lives.
Know that you are not alone.
Hugs,
Claire
There is a light at the end of the tunnel.
I have had this now for 3-4 years...and I have been through the mud.
As I got out of the shower, the other day...after a day of not being able to carry my grand baby and stumbling around the restaurant hoping no one noticed, I thought ...man I wish I never got this disease....and then I thought...but if I hadn't I wouldn't be where I am today.
Today I am a better person and every relationship in my life is better because of it. I believe my family would agree that they are better people because of it too.
We never know what life will bring us. After having MG for 1 1/2 years I can truly say I am in a better place relationship wise then ever before, both with family and friends! MG teaches you many things, mostly to appreciate what you have!!
This was a link Cathi posted over a year ago and is an excellent article describing what we experience and the response of those around us. Lorraine also excerpted a publication in the Links Group as well.
There is not a time I can remember when I was not symptomatic, although I was always able to do what most kids could do, I never felt like I could do what I was capable of doing. I eventually started looking for explanations when I could no longer run, had difficulty biking, hiking, and finally gardening. Meanwhile, I was busy, but every 5 years or so would make an effort to brave the testing, physical exams, all "normal"--I could do about anything once, stronger than neurologists I was referred to, maybe they were scared to say what they thought! They did think of MG--antibodies negative. Eventually my Dad at 80 got the same disorder his sister had in childhood, MG, and I developed the double vision that is "typical." So adjusting to diagnosis and medication for me has not been an interruption in health and activity entirely, but a "bring it on" both the diagnosis and medication (even, and sometimes especially steroids). If this doesn't work, maybe that will, and I never really expected to feel this good again (even if it is not all the time). perhaps my MG is so chronic this all seems like health, not this past week, but I have IVIG tomorrow!!! I have used my trekking poles both for walking and hiking since diagnosis. My problems are uneven and unpredictable, one of the hardest parts of dealing with MG for me, but although lately I have been able to leave trekking poles at home when not hiking--never ever leave home without Mestinon. b.
As I continue with this disease I am predicting that some day there will be a closer tie with this MG and sleep.
When I can't sleep I take my sleeping pill and do much much better.
Also I have this weird set of emotions about telling people how I'm doing, to the point that if I'm in a bad mood, I hope people don't ask about my health because I ...can't stand to tell the truth, which is that I'm disappointed I got sick, even though I'm doing better than I was? I don't want to disappoint other people by telling them something unpleasant about myself? I know they won't understand anyway, since they've never been really sick, and that will just make me feel more alone and sad? And then sometimes I feel frustrated when people give those lines that they always do when talking about illness, (the ever-popular) "but you don't look sick!" or, "you're doing so much better than you were" (as though instructing me that I shouldn't complain about something as relatively benign as having a crooked smile). Or, many of my friends just automatically say, "you'll get there, you'll improve, you'll be able to run a marathon again." I know in a way it's the job of my friends to be my cheerleader and believe in me, but that is hard to hear sometimes if it makes me think that they just really don't understand this disease, or if I then feel like they'll be disappointed in me if I don't completely recover.
I am single and don't have any kids, so I don't quite feel a responsibility to anyone in the same way it sounds like you do, though. When I don't feel as good it's pretty easy for me to just go home and relax, and I don't even really have to keep my room clean or do chores if I don't feel like it. When I was in the hospital, my Mom came every single day to sit with me, which in retrospect I am really glad for. She's done everything possible to be there for me. But at the time I sometimes found it exhausting, like her always being there watching me made me feel guilty for being sick in the first place. And at the time of course I felt horrible for feeling these things, thus creating a vicious cycle. I think I really do blame myself for getting sick, view it as a personal failure. Even though I would never think that about someone else who is sick, and even though I know better. It's more of a subconscious thing. I've always blamed myself for things that aren't my fault.
Sometimes when I'm around other people, if someone talks to me and I respond and can feel my smile blurring around the edges, I feel this surge of resentment, at the disease, really; but sometimes I really just want an easier target for it, and am tempted to get angry at my friend for trying to talk to me when my face is partially paralyzed. And then, of course, I feel guilty.
On days when I'm not feeling as good (emotionally or MG-wise) I oscillate between feeling misunderstood and sorry for myself, and then feeling guilty for it: identifying as physically disabled, thinking that I'm struggling often and no one notices and that i feel alone, thinking about all the things I lost, and then feeling guilty for it since, really, I am doing quite well.
I think I am slow, compared to other people; I was diagnosed almost two years ago and I am surprised I still am having so much trouble dealing with being sick. But I guess that's the thing: you can't really put a timeline on things like this. I probably will have to always continue mourning the loss of my completely able-bodied self. I hope I can get off of the self-pity/guilt roller coaster, though. :)
Well, now I'm rambling. I hope I haven't made anyone feel bad; I sound like I don't have much positive or reassuring to say. I think I'm in a bad mood right now, and my thought process isn't nearly this negative most of the time. Just remember, we've all had (are still having) a physical and emotional trauma, and it takes time to get used to or deal with these things. It takes time to figure out what our literal physical limits are (which unhelpfully change by the minute), and also time to figure out how to deal with it all emotionally. Just remember to be gentle with yourself, and don't treat yourself in a way you wouldn't treat a loved one. No one can do everything.
B, thanks for posting that article; I will have to read it in pieces but I like the first few paragraphs. I think it will be helpful for me to read it.
http://transitions.mda.org/blog/forgiving-yourself
In the beginning I used to feel like I had a bouquet of flowers in my hand. Every time something happened it felt like someone took my flower one at a time.
It is so understandable when people aren't feeling well.
Oh, and here's the other side of what I've experienced: I did have some revelations about appreciating people and things in my life, about being in the moment and taking things for face value. Letting go and not stressing over things I can't control anyway. And I'm much more understanding of others' faults. I know I said in my earlier post that I get angry at myself for not being able to do things, but before I used to get angry really all time, at everything. I'm much better at that. I would say that I am overall happier, easier to engage with, and appreciate things more now, all lessons I learned from being sick. My friends have noticed that I'm more open and comfortable with myself. Maybe next week when my PMS is gone I'll comment on this again and have more optimistic things like this to say...(I just reread my first comment, I used the word "guilt" like 200 times! Haha.)
Ann, that's a fitting image: someone holding a bouquet of flowers and having them removed one at a time. That is what it felt like.
Judith
Chronic illness can certainly put a strain relationships, often be self imposed, and thus creating the need to connect with others in the same situation while still needing to preserve the relationships
most important to us. That includes the relationship we have
with ourselves.
As a parent & step parent of four young adult children it is important to me that their lives evolve without my issues becoming a strain on them.
While my husband is my biggest support I do not want MG to define who we are as husband and wife. I will often minimize how I'm feeling in order to protect him.
My mother, who turns 91 next month, lives in our home. Her dementia is at times stressful to the family and I try to come to terms with the fact that I may not be able to care for her in the days ahead. One day I watch her shuffle about the house, seeing her losses, and I am saddened. Another day the same scene will make me laugh as I notice our paralleled physical ability. Another day I see burden and inevitably it turns to guilt.
My relationship with myself is the most complex. I can be dismissive of my MG, analytical, accepting, bitter, on and on. For me my emotions can be as varied as my symptoms.
The constant assessment of almost every action of every day is taxing to say the least. I find comfort and peace in my therapist, with humour & meditation, sometimes but not always. I do encourage everyone to discuss our emotional selves with our neuros as best as time allows in an appointment setting. I believe in order for them to treat us to the best of their ability they
need awareness of the whole person not just the illness.
As a side note, I do not tell you all often enough how
each and every one of our DS family is so important to me.
Today I am thankful for the direction my life has
taken. We'll see what tomorrow brings.
Hugs, Larissa
(Thank you for the articles.)