My husband told me tonight that he has been looking online to see how other spouses, caregivers, deal with MG. He said that there is a fine line between pushing me to do things and pushing me not to do things. He was wondering if there is a blog somewhere for spouses.

Dear Kim,

The fact that your husband is aware of this fine line and wants help in finding it, means that he already understands this illness more than many spouses and care-givers. As well as quite a few neurologists.

The truth is, (at least in my opinion), that because of the very unpredictable nature of this illness, you are constantly going to err to one side or the other. Learning to live with this (eg-knowing that sometimes you could have done more, and vice versa) is part of learning to live with this illness.

Recently, after some changes we made in my treatment regimen, I had noticeable improvement. This lasted for a few weeks after which I crashed.
I asked my neurologist if he thought this was the "normal" fluctuations of my illness or the result of me doing too much, when I felt better.

He honestly answered that it could be both, and he doesn't know. I then asked him if he thinks I should just slow down even when I feel I can do more. His answer to this was-No. I think you should do what ever you feel you can, when you can.

As opposed to those that took care of me before, he is there to share my victory when I am doing better, but also there to share my frustration when I crash. He hopes, like I do, that with time there will be more victories and less frustration. But, there are no short cuts.

I am not aware of any blog written by a spouse of an MG patient. Maybe your husband should start writing one?

I was hoping that the question might encourage spouses/caregivers to discuss their experiences and concerns they have about taking care of us. It must be very difficult for them.

Hi Kim,
I think it's fantastic that you have such a supportive spouse. My husband has literally saved my life since I got sick. He also takes care if the kids and the housework and my mood swings lol. Im worried about the toll this may be taking on him. But of course he'll never tell me! If your husband wants another spouse to talk to , I can give u his number to pass on to ur hubby! I think it would be really good for him to have someone to share that understands!
Jessica

I could not have survived my illnesses (MG and SPS) without my husband's support. From the very beginning, we both had no knowledge of either illness but he immediately started searching the web for answers. He had an advocate in my best friend who also started searching for answers. Thankfully he can talk to her about what is happening and I believe he now knows as much or more about MG than my neurologist. When I go in for an office visit the two of them can talk on the same level about possible treatments and medications.

From the very beginning, my husband held my hand and told me that he wasn't going anywhere and that we would fight this together. Little did we know then what we were facing. I know this is very stressfull for him, taking care of me, our house and six animals (children) and a full time job. Now I'm stable enough to be on my own during the day but he always seems to find a reason to call just to check on me. We've been together 31 years and have no children so it's the two of us fighting against this battle.

Southern Bell

Hi Sugrkiss,

Please thank your husband for the kind offer to talk to my husband, but my husband clammed up again. We have been very private about my illness. We have only told my family. Last week we finally made the decision to let the cat out of the bag. The response from our friends has been outstanding. I was afraid of being treated differently, being treated as a sick person with everyone walking on eggs around me. That hasn't happened. Everyone has been very kind and understanding. One friend told my husband that if anything ever happened to him, his family would take care of me. I was floored with that offer, especially since our friend means it. What a relief for my husband.

Once again, thanks for the offer and if my husband decides that he would like to talk to your husband, I'll let you know.