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 :)
I think MG is one of a very elite group of diseases in which one feels guilty just for feeling guilty. It's sad that this is what our lives become after diagnosis, and sometimes even before diagnosis.
I've always been keen at knowing my body. Well, this is before MG knocked me down a peg or 20... lol. Now I feel like I don't know myself at all which only leads to more disappointment in myself. I get frustrated when I can't do something that I want to and more frustrated when someone tries to help me do it. I know that is a horrible thing to be mad a others for trying to help you but that is exactly what happens. Then of course I feel guilty for being frustrated at them for trying to do a good deed. It's hard for me to ask for help and worse yet, I'm a perfectionist and have (slight) OCD issues to boot. Everywhere I turn there is guilt and frustration.
I will say though, I do cherish the things that I do have. I am so thankful that I can still hold a full-time job, even if I struggle to make it through each day doing it. I have given up a lot with MG. My perfectionist self has given up on a clean house and most craft projects which I love so much. I haven't ironed anything in almost a year which is huge for me. My knew iron is a spray bottle of water and 10 minutes in the dryer. My new duster is my butt as I have to sit down all the time and my clothes end up covered in it. My new hair style is the curly and curlier do that comes from blow drying your hair upside down because I can't hold my head up. My new bathroom vanity is the toilet seat and a hand held mirror that I place on my shower chair (which is another new item in my life) so that I can do my makeup "upside down". Again, because I can't hold my head up.
I think that there can be positive things to come from any chronic illness or disease which is things like this support group. The new relationships that are formed by bonding with others in your same situation. That has been a huge thing for me because I feel as though I've lost most of my friends because the don't understand or can't come to terms with the MG. There are still the loyal and ever present friends that stick by you through thick and thin but even they don't "get it", but all of you do and that makes up for those that don't in most ways.
I am married but I have no children. Only a cat and sometimes I feel guilty that I can't feed her right away, replenish her water until I take a nap, or even pet her because my arms are so weak that I can't keep them up and moving. I am thankful however to have a loving and supportive husband who does some of what I can't do and all of the laundry and dishes.
I'm still learning how to cope myself and so are many of the other DS members but what helps me to cope some is reading the posts and responses of our other members. Even my husband finds comfort in hearing/reading some of the posts because it helps him to understand what I'm going through and kind of validates my complaints to see that others have the same issues.
I really wish that there was a magic potion that would heal us in an instant but until that potion is found I try to rid myself of the guilt by trying to help others here and at work. You never really know how many people are impacted by your actions and words. Ever single day brings an opportunity to learn something new and spread the word about MG. You don't have to do it in a way that makes others feel bad or pity you. I find lots of ways to bring it to the attention of others but a lot of times it's highlighted my my shaking, sweating profusely, and or using a can/walker. Even though I don't want to talk about it, I do. Not for the "attention" but for the teaching and awareness that it brings. Otherwise, they'll never find a cure or better treatments.
I try to go about the "pay it forward" method of relieving my guilt. Even if I can't do the things that I want to be able to do again, there is always someone out there who needs help and who better to give it than someone who knows what they are going through.
Okay, that's my "deep thoughts" bit for today. It's time for a long nap and more meds for my migraine. I hope everyone has a lovely weekend.
Much aloha to all of you and mahalo (thank you) for your support, past, present and future.
Angie