Update 9-11-15

Well, here I am again. Yes, I'm still here. MS is progressing (that sounds positive but really it's not). I had a revelation recently ... sometimes I think I'm not doing as bad but then I realize that really I'm getting worse but just MANAGING MY SYMPTOMS better. Yes, it makes a huge difference.

I am still not officially diagnosed. Still thinking about seeing the Neurologist again. Still wondering if it's PPMS or PRMS. Or maybe it's SPMS. I don't know. It just seems too bad to be RRMS. But, why do I even wonder?

My activities are small and well thought out. If I have a big day of shopping in the city (an hour away) I must have someone with me to drive and do most of the thinking. I get worn out too quickly and within an hour or two I am pretty much useless but still have to keep going. I hold on to the cart while someone else pushes but now I'm going to use the electric scooter cart thing. I try to avoid shopping altogether, then I don't have to worry about how I'm going to manage to get it done. I send someone else. How did I ever use to do these things? I could go ALL DAY LONG without a break, get everything done and still have energy for making supper, cleaning up, getting ready for bed, getting ready for the next day, etc.

I try to avoid driving for two reasons: usually I'm just too exhausted to drive or my right side is not working properly, but sometimes my mind is not working right ... I switch things up, confuse things, see things that are not there or don't see things that are there or see things that are there but do not see them as they really are.

I should use a cane almost all of the time but I do not. That is probably wearing me out more than necessary.

I have to take a lot of breaks throughout the day just to get what little I can done. I go slow, take breaks and take a nap or two. This is the only way I can get some cleaning done, meals made and some chores done. Even then I usually have to have help.

Each day is a blessing. A new day to try again. To learn more patience and love (for myself and others).

I try to spend time visiting the elderly. They have it so much worse than I do. It's always a win-win situation. We bless and encourage each other.

That's all for now.

Journal entry for today 2-26-14

I think the last time I put anything on here was in December. There is not much new to report. I am still hanging in there but still having MS :) My right side has still been giving me issues but not as bad as it was in July or August (I think that's when it was really bad?). It seems I never fully recovered from that episode.

Fatigue and cognitive issues are still at the top of my list for hardest struggles, however it has been difficult some times, in the kitchen especially, to get around and function 'normal' with these right side issues. I have come to believe that my NEW normal is this: slightly dysfunctional right hand/arm and foot/leg. This makes it a bit difficult because I am right handed. Even still, I notice myself using my left hand more and more, or at least using it for support when using my right. I have also noticed myself holding on to stuff for balance. For instance, when working at the counter I always seem to have one hand on the counter for stability. When at the stove, one hand is on the oven door handle. When standing in general, I find more often than not I am leaning against a wall or a chair. If I do not do this, I tend to want to fall backwards. I have not actually fallen all the way yet (thankfully!) but have caught myself several times.

I have been on a special diet as an experiment for a while however I am not sharing anything specific until I've been on it for at least a year. So far though I have not noticed any improvements.

I have thought of going gluten free but it seems so hard with my lifestyle, though I'm sure many could say the same thing about going gluten free. As much as I do not want to, I think the ONLY way I'll be able to pull it off and give it an honest shot is if I use the gluten free flour blend. Not because I 'have to have' certain foods, but because I do not cook for only myself and it's hard to make different meals at the same time.

I have also thought of trying do have a green juice every day, however that takes time and effort ... both of which are precious right now. So, I thought of buying some of Hallelujah Acres barely max powder as a substitute. We'll see.

My neurologist appointment is scheduled for this summer however I just got a card in the mail saying the date has to change. I might make it sooner to fit better with the schedule of those who are probably going to take me (it's kind of far away and hard for me to drive all that way by myself).

On a side note, I recently watched a video on youtube of this woman who had ataxia and realized that I have certainly had one definite episode of ataxia in my legs. I was wobbling around everywhere, unable to walk without falling and/or running in to everything in site. I just stayed in one place as best as I could till it was over. Thankfully that symptom did not want to hang around, but I'm not sure maybe it will come back some day?

I'm still here ...

Is anyone reading this anyway? I wonder. It does not matter though because it was very convenient for me to be able to read my own posts and see what I was going through a few months ago... so I will post an update for my sake if not for the sake of anyone else.

I had a period of time where I felt a tiny bit better but it was not much and it did not last long. For the last month or so I have been not feeling the best, and especially the last few weeks. This time it seems my feet are hit the hardest: they hurt and ache so bad that it actually wakes me up at night. The only thing that offers some 'relief' is distraction. If I am sitting down it helps to move my feet, like shaking my feet and legs fast how someone does when they are nervous or just out of habit. If I am laying down I wiggle my feet. If I am standing up I walk.

Other things have been wrong too, but this is the most noteworthy. Extreme fatigue and cognitive issues are at the top of the list.

Life goes on!

I had an appointment with my neurologist set for the beginning of December, however I cancelled it and plan to reschedule it for a warmer month. Even though I am really struggling right now, it seems I struggle even more when it's warmer so I thought it would be better to see her then.

MS and cognitive issues

My most hated symptom BY FAR is cognitive issues. My short term memory is pathetic. It is very hard to make decisions and process information. It's like my brain is in slow motion. Problem solving is a real trial. Being in a crowd with lots of things going on around me is chaos to the extreme. Concentration is poor. The list goes on and on.

I used to be a fast typist. Really fast. Now I am so slow it's frustrating. It's like going from super high speed internet to dial up ... or worse. I can use that same analogy for my slow-motion brain too. Dial up speed.

I also have issues with spelling. I used to be an "A Student" when it came to spelling. Now I mess up the simplest of words. I usually, eventually, catch the mistakes but it takes a while sometimes of staring at the word and thinking "now that's just not right" ... and sometimes it's so obviously wrong that I just have to laugh at myself.

Example: I just spelled "speed" "sepped". At least it has the same letters. Often times half or all of the letters are not even supposed to be in the word I am trying to spell.

If anyone reads this and has suggestions on how I can help my cognitive issues, please share. I have been making schedules to help keep me on track, but the problem is I often do not feel good enough to follow the schedule so it's all in vain anyway. I take lots of notes but forget where I put them. I rely on my cell phone calendar a lot. This is the only consistent thing that seems to help.

MS Journal Entry 08-24-13

This was the worst day yet. Just sayin.

Barely made it to 9:30 before having to go back to bed. Quite pathetic. I can understand why depression is an MS symptom. It's so hard to stay positive when one is so dysfunctional. But, I am not depressed. I am not even going to go there. I am just doing my best to learn all I can while I am here. Mostly learning about how to be patient with myself and others.

I think I know what elderly people do all day long.

I used to wonder how an elderly person could handle being home all day long alone. I assumed they would get bored or tired of sitting around. But I have been thinking these last few days and I might understand it all now. I may not be elderly yet but I sure feel like it; or at least I assume I feel like it. It takes me at least 5 times longer to do any normal household task than it used to prior to MS. Maybe even 10 times longer or more. What used to take me a half hour or so now takes all morning. It's pathetic.

Laundry for instance. One pair of jeans is all I can handle at a time. Lift it up out of the clean basket, fold it, put it in a pile, and then take a short break before I do another one. It's like I am in slow motion and then I end up breathing heavy. Really. For one pair of jeans.

MS Journal Entry 08-13-13

Still going ... nothing outlasts the energizer ... wait. Never mind. That was just the first thing that came to my head when I started this post but in a very opposite sort of way. I wish I had as much 'energy' as that silly pink bunny of yesteryear. Maybe he's still going but I sure am not. I guess he really did outlast me.

Nothing much new to report - my flare is 'still going'. I do feel a little better on most days recently than I did when this flare started, but I am no where close to being 'normal' or at baseline. Or maybe I am and my baseline has changed? I don't know. It's all a guess I guess.

Hopefully I'll have something fresh to put on here soon; thankfully no one is really reading this yet anyway ;)