firstly I apologise for my actions as I find it difficult to talk and type.
I have found myself being more and more upset about my lack of mobility, mental memory, I feel as though I have dementia.
I tried to walk to the town the other day and came up against a wall of spasticity in my left leg and my right feeling like it was made of lead!. I got less than 25 metres and I rang my husband for help. I have been so upset by this. My weight has gone wild recently, iI am about 5 stone over weight and I hate myself!!
I don’t want to be like this anymore, restricted and in pain. I am so unhappy. I can see how my husband looks at me, I am afraid he is going to leave me…
I am soo unhappy, I hate having no memory, not being able to walk, struggling with a stick, scared I am going to be abandoned.
The light inside my husband eyes has gone. He got offered to a team event, I am unable to go due to my mobility and he appears to be really happy to go alone. I hate my life!
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Nik5322
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I'm sorry to hear of your struggles. You and your husband are going through an ordeal few can understand. Stay positive and be in the now. Try not to think about what *might* happen, and enjoy what you have right now.
I am happy when my wife goes out and enjoys some activity without having me along and having to watch out for me. My wife deserves some fun! If she is having some fun, I am glad she can have that.
In some ways it must be harder for those that are family members rather than patients. There is usually little they can do and I'm sure that must be frustrating for them.
How often do you smile? I bet you have a pretty smile. I read somewhere that smiling makes people feel better and helps others feel good about you too. For a while I couldn't even smile and I told my doctor my funny bone was broken. He prescribed watching some comedy or reading jokes. Laughter is some kind of medicine.
Smile at your husband. He will be naturally inclined to smile back.
thank you soo much. I read this and cried. You are so right, maybe I should feel happy he is having fun. You did make me smile too, thank you so much for your reply, it meant so much to me. I am humbled and grateful. Nikki x
Hey there. I hope it helps you to share this here. I’m sure most of us have said the same things. I know I have. Not sure if you want any particular response, or if you were shouting into the void, but I hope this helps:
I’ve never been married, but my then-boyfriend gave up on our relationship when I got sick. E causes so many profound losses, and it’s even worse when a trusted relationship is one of them. But I’ll guess and say you probably don’t know what your husband is truly thinking. Ask him. Talk to him. Cry with him. Try to connect. Also, I think it’s a very nice thing for him to do a social outing, even if you can’t join. It’s okay that you can’t do everything he can do.
I have lots of similar issues regarding mobility, weight, pain, etc. I find that the less I do, the better I feel, to a certain extent. Gentle movement and little hobbies within my capacity are daily activities for me. A nice, boring routine is helpful. It’s so hard to accept limitations, but I’ve found that, in doing so, I’ve found a strange sense of freedom—at least an awareness of my body and needs that I didn’t have before.
I used to ask “why me?” But now I’m starting to ask “why NOT me?” I’m no masochist, but I do know that pain, suffering, and loss are inevitable in this life. Tragedy will make me better or worse, and the outcome depends, in large part, on how I respond. Maybe the dross will melt away from the gold, the chaff from the wheat, the bad from the good. Maybe the fiery furnace is refining me.
I sincerely thank you for your time in replying to me.
I suppose I am screaming at the world for the unfairness of it all. I think it maybe I feel lonely and misunderstood.
Credit to hubby in someways. A while back I saw (after a team christmas party), that he was flirting with a colleague I had worked with. When confronted, he said She is a nice girl, I was devastated. I told him if he prefers her that’s 22 years of marriage gone, was it because she was abled bodied? She can dance, drink and has no pain. Something happened after this. He showed me a work message to say he can’t do this to me. She did reply wanting not to change anything. His picture was in her photos on Facebook. Sorry this has nothing to do with my mobility, however it makes me feel a burden. Like caging a butterfly, he is all I have. After that I am totally alone. I do not know how long I have the small mot ability?
I am struggling to embrace the changes.
I am sorry for ranting at the world, underneath all this anger is part of me that says just get on with it. This thing seems to be progressive, is that what has been like for you?
Hi again. Yes, it sucks. Sometimes it seems like many others don’t ever suffer or struggle and seem to have easy lives, and maybe that’s true for a select minority. But the thing is—it’s really not true for most of us. One day, even that female coworker will suffer in some big way. She might even become disabled like us (although let’s not wish this hell on anyone!). And it sounds like your husband takes your marriage vows very seriously, so commend him for that. Like I said, my ex left because he couldn’t handle my illness, but my family has been here the whole time. They tell me I’m only a burden when I start thinking I am one, as I become unruly and hysterical. It’s okay to accept love and care.
It’s also okay to be angry. Rant at God; He can take it, but, in the end, collapse in Him arms and surrender. That’s what I do. I read the Bible every day, and that really helps me keep everything in perspective, especially on hard days. This life is painful, temporary, and often disappointing, but I can look forward to eternal love and peace in the presence of God through Jesus.
What “thing” seems to be progressive for you? Mobility issues? My mobility becomes very, very impaired when I’m anxious, stress, overstimulated, fatigued, etc. After two years since E, I still have a severe movement disorder and still have mobility issues. When I’m in a bad way, I can barely move. No one knows the long-term outlook for me. I had inflammation in my brainstem (and elsewhere) for 4-6 months.
I am so sorry to hear about your difficulties. Have you tried zoom calls run by the Encephalitis Society? They are an amazing way of connecting and meeting people affected by encephalitis. Here is the link for all the virtual gatherings.
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