I wonder if any of you suffer of this particular side effect. You are in a relapse, you're tired, you feel like crap and still... you try to do everything you normally do so that no one around you feel affected by this strike of MS. How do you handle this? I'm unable to speak up and ask for help or simple peace. Any cue? Any help? I'm getting crazy.
Hi Mel,
I've done the "do as much or more than normal" so that people don't see how bad I might be feeling physically and mentally or so that I can keeps things on schedule.
However, it doesn't really work in the end. I also end up paying for it later and recovery takes more time than the initial work in the first place. And I don't have to be in a relapse for this to happen.
I'm in a slightly different setting, without children or a spouse. I am the 'caregiver' for my mother who has several autoimmune diseases and she is the 'caregiver' for me. I think that she actually takes care of me more than I do of her. Of course, we both take advantage of my bf when he is available to help do stuff.
Perhaps since my mom unders the nature of relapses and flairs, I do not have to pretend so much. If I'm unable to do something, I don't try to do it. But it took awhile to come to that realization.
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Hello, I hear you, and have blogged about it before. It's very hard for some of us to "ask" for help in any capacity, let alone when we really need it. I too just suffered a relapse which lasted about 3 months, and was at a point where I couldn't stand alone, my husband had to help me in the shower and I was miserable. I have 3 daughters living here, 17, 19, and 29. They all watched me suffer through this and like you I tried to do things for myself as best as I could stumbling and falling through it all. Because I had so much time on my hands during this, and talk after talk with my husband and daughters I tried to see my disease through their eyes. I was the caregiver, the homemaker, I took care of everything and did everything, then one day in 2003 I woke up and couldn't walk. At first they kept taking me to doctors trying to "fix" me, and we'd joke about it, but then the diagnosis came in 2006 and reality set it. But when I look at it from their eyes they're just as scared and frustrated as I am. They want to help, but don't want to take away my independence, they want to ask, but don't want me to think I can't do it, they want to talk about it with me but they don't want to upset me. They walk on egg shells too because they see what I'm going through and want to help but don't always know how. They are hurting when they see me struggle to walk and want to grab me and put me in the wheel chair so I won't have to suffer, but they also know that sometimes I have to try it alone. We've learned to talk about it and they give me space when I need it, yet help me when I need it. That's the key for me, I have to look at my MS from their eyes and know that they love me and want to help me and I have to let them sometimes and not try to go it alone and be that wonder woman.
I hope this helps, we all work on this daily because as you know MS strikes at different times and different places, so we all stay as connected as we can.