Last reply 6 months ago
Well it is definitely morning. 打

Good morning/afternoon/evening to you all. Thought I would put them all in there because depending where and when you read this it will all apply that way. Lol. Well before I even get started for those who have not read anything I have posted before I suppose I should put a bit of disclaimer here that I tend to ramble a lot, or get stuck on a topic and never get back to the original topic I started with. So I am sorry. But if I do go sideways please feel free to ask any questions down below. I am usually pretty good at replying. May take a day or two but I will reply.

So anyway hope everyone is doing well. Or at least your version of well. As for myself today that is a hard one to answer. Let me explain.

So I get asked all the time how I am feeling by like everyone. Which yes I am sure we all do. But I mean it has been like this my whole life. I have had various different things wrong with me since I was little, little. Everything from inner ear issues to a broken ankle that would not heal properly to now this. Now dont get me wrong I know everyone just cares and probably genuinely cares. However it is just on of those pet peeves I have it drives me crazy.

But me being me puts on my brave face and secures and straighten my mask and say I fine. I am what you would call a typical guy stereo type kind of guy in that sense. Dont want to bother people with my issues because we all have our own life and we all have problems. So I go with I am fine. Now with that said my wife nows me better then I think I know myself because she calls me on it every time. It has cause some pretty big fights over the years. I am a pretty stubborn SOB to be honest. But at the same time if I were to explain how I a feeling it would just sound like I am complaining all the time.

Like how do you explain tired and zero energy to someone. Or having numb legs and making it hard to walk. I understand everyone has days they are tired or have zero energy some days but it isnt the same and they just dont understand. For example my mother which I love to pieces drives me the most crazy I think. Well ok maybe not the most that would be my wife that does that. Dont tell her I said that. .

But my mom comes in a very close second. She will ask and once in a while I will tell her a little bit of how I am feeling. Something like having a rough day. Sore, tired, such and such is numb or having trouble walking. But then I usually regret saying anything at all because she starts. I get from her Tired? Come on. What time did you go to bed? So I tell her. I have a pretty strict bedtime with myself most nights. Usually by 11pm I am heading off to bed. Mind you it can get as late as midnight sometimes depending on how late we are watching and trying to fit in one extra episode of whatever show we happen to be binging at the time. (Right now it is The Last Man on Earth). Then during the school year I am up by 7:30am to get my daughter ready and off to school. During the summer fluctuates a little bit but normal dont sleep past 9am. So anyway back to mom. She says then Oh come on now you get plenty of sleep.

My answer to her usually is Yes mom I understand that however….. Then she just gives me a feed up look and changes the subject. It drives me completely insane. I dont think it is because she doesnt want to understand. I think it is more that she refuses to believe there is something wrong.

But as far as my wonderful wife well I think she in her own way refuses to believe that I have as much trouble as I do. But a lot of that is my own doing for sure. Like I said I am a stubborn SOB. There are days I feel like I have been hit by a truck and run over about a million times. However the world doesnt stop turning just because of how I feel. So I put my big boy pants on and do what needs to be done. However there are also days where I feel like a bag of smashed assholes and it is all I can do to get out of bed. Which means nothing gets done because physical and mentally it just cant. She dont understand how I can do it one day and not the next. That is where most are big arguments are now. Stuff that dont get done like the house getting cleaned or laundry getting done or the dishes not getting done.

Now yes it does get done just not to her timeline. Like it always used to before. She will come home from work and very little or nothing has been done and the fight is on. Not always of course but more then it should. Then of course I am not going to just sit there and take it and I get all defensive right away. I know that dont help the situation but in the moment it isnt that easy to not retaliate. It usually gets to the point to where I dont want to listen too it anymore and I am so mad I just say Whatever!!!! And walk away.

She understands that there is something wrong and knows when something is wrong but not what. She just dont understand how bad it is some days. I will say to her something like I am so tired today. Or My legs are so sore today. Shell say something along the lines of I know what you mean. All I want to do at that point is say Trust me you really dont know what I mean at all and be thankful you dont. But I dont.

Well now that I forget where this was going in the first place when I started I will quit rambling. Hope everyone has a fantastic rest of their day.

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6 months ago

Oh I so hear you. I don’t want to ramble about how I feel everytime someone asks me how I feel. But….. then they don’t really understand that I really have multiple symptoms that vary day to day that sometimes can be debilitating. I don’t have an answer. It is the real problem with a sometimes invisible illness.

6 months ago

Good evening .
I think this sums up what most of us feel and experience regularly.
I run a shop and always get asked how I am and I usually give the obligatory fine as the answer.. a few people have replied that didnt sound too convincing and Ive just laughed it off. Recently though, a few have said but youre not are you ?
This has taken me aback and I dont quite know how to respond… do they really want to know.?
Well the answer to that Ive found has been yes.. … well mostly
As you say though, very few understand what MS truly means.

6 months ago

@wobbleone. So very true. It is hard to explain how you feel to someone that dont understand. It just adds to the problem sometimes more then anything. The sad thing is that they truly dont get it and by the grace of God they will never have to understand for themselves. But it does make for some awkward conversations sometimes. So I kind of shelter myself away at home most of my time. Unless I have to run out to the store or something. But that is my way of dealing with it. Kind of a shit way but it fixes a lot of problems. Causes some too at times but it is what it is. I suppose anyway.

6 months ago

mornings are the worst for me. I feel like I have to absolutely DRAG myself out of bed. That first hour is tough, but generally Im much better after that. I wish MS was more predictable, like ill only get 5 spoons on Monday, Tuesday and Thursday. Then the other days I get seven, lol. Planning is not happening with MS!

6 months ago

Hi @shannon_devlaminck I am so with you! I’ve got concerned friends who ask all the time how I am, but if I say anything other than fine, they try and “solutionise” or fix it for me – tell me to get more sleep, or do less things, or get different treatment. It’s hard to get people to understand that it’s just life for us!

With my husband I’ve started using different language – either I say “I’m tired” or “I’m MS tired”. Before when I was just saying “I’m really tired” he was vaguely sympathetic, but still assumed I’d be doing normal things like when it’s my turn to cook dinner or take the dog out. But when I say “I’m MS tired” he is starting to get it that I’m done in, and just need to stop and rest. Of course I then get paranoid about overusing it, but at least it’s a way I can communicate to him!

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