What brings joy ...

What used to bring joy into my life was hiking, running on trails, camping, and all sorts of fun, active things outdoors. And yoga. I was really good at it. Really good. When I first started having issues I was so devastated that I could no longer go hiking! No more long walks either. However I gradually learned how to find new things that brought me joy. Well, an old thing was bird watching, however that went along with hiking. Now I just watch birds in my back yard. I have lots of feeders, a few bird baths, flowers, bushes, trees - a nice place for birds to be. I put my chair in view of the best places, bring my camera along if I remember, and see how many varieties of birds I can spot. I love it. As for yoga - I just do a very light, super adapted version of some basic poses each morning for about 5 minutes.

Tufted Titmouse

Another old favorite was gardening. We used to have a very large garden every year, and I was an active participant. Now however I just have a small garden. I no longer help get it ready - my adult children do all of the hard work (tilling, making rows, planting). All I do is start some plants inside my house, and then I spend about 20 minutes each day [if I am able] alternating between weeding and watering. If I fall behind, someone catches me up. I have things set up to make it even easier. Like a very nice hose and hose cart right next to the garden. The hose cart has a storage shelf on the bottom, and that is where I put my little folding bench that I sit on to weed, as well as a few small hand tools and hose spray attachments.

My point. We must find ways to enjoy life still! As long as we are alive, we can find joy if we want to.

The dangers of a faulty brain.

Not much to say. Just imagine having a brain that does not connect properly and that will give you all sorts of interesting and potentially dangerous situations.

Example. No matter how many times I look at the electric burner knobs, I still turn on the wrong one quite often. I check. I double check. I triple check. I'm just 100% SURE I have the right one ... and then something catches on fire, melts, or gets burned a little.

Another example. I absolutely cannot walk down the stairs unless I'm looking at my feet. Full attention must be on the feet. I cannot carry anything down the stairs that hinders the view of my feet. The same goes for uneven surfaces. Folks probably think I'm grumpy or in a funk half the time because I do not look up when I walk. I can't.

Changes.

When I first started having problems, I was so used to being fit and capable that it was really hard for me to manage "the new me." However, over time as the symptoms progressed I naturally adapted. Because I am hoping to see a neurologist soon, I've been paying attention to how I manage things with the hopes of better explaining my life to him/her. Little things that I didn't even realize I was doing have been coming to my attention. Here are a few examples.

I have a lot of problems with balance. I used to be a pro in the kitchen (literally), however MS has stopped that. As things have been progressing, my duties in the kitchen have become less and less. When I am in the kitchen, however, I recently noticed that I lean against the counters for support. If I need to bend over to get something out of a lower cabinet, I hold on to the counter while bending. When I'm at the stove, I hold on to the over door handle. I never stand or walk unassisted. When did I start doing this? No clue. But that's what I do all the time without thinking. 

I have a big problem walking down stairs or walking on uneven surfaces. Recently I noticed how I walk down the stairs: I hold on for dear life and spend all of my brain energy making sure my feet and legs are doing what they should be doing. This attention was definitely heightened when I sprained my ankle because of these issues. I no longer carry anything down the stairs, but am comfortable enough carrying some things up the stairs.

For the uneven surfaces, like say walking to the pasture or barn, I use a walking stick. This helps tremendously.

My right side is very weak. I noticed I lift up my right thigh to clear my right foot (so it does not drag on the ground and cause me to trip). This gets worse and worse as the day goes on, which causes my left side to start hurting from the extra weight. This is amplified even more when I sprained my left ankle. It sure would have been convenient if it were my right ankle (the bad side) instead of the left (the good side)!! This has prolonged the healing of the sprain. 6 months after the fact and it's still in pain and often visibly swollen.

Along with my right side weakness - I've noticed that when going up the stairs I do this "step, clunk, step, clunk, step, clunk" thing. I automatically put as little weight as possible on the right leg and then kind of hop up as quick as I can on to my left (that's where the "clunk" comes in). At the same time, I use my hands on either side to help pull me up.

There are other things too, but that's all I have time for today.

5-27-18 Update

Has it really been almost 3 years since I've last posted on this blog? It was really interesting for me to read through all of the previous posts; thankfully there are not too many, so it was quick.

In the past 3 years not much has changed EXCEPT everything has gotten worse. More progression. Still no visit to the neuro, and still no official diagnosis. I am still really leaning towards PPMS, but am now committed to seeing an MS Specialist once I get insurance. I'll update on that when I know more.

Why PPMS? Well, let's look at the definition of RRMS from the National MS Society:

Clearly defined attacks of new or increasing neurological symptoms. These attacks are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may completely disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission.  

That is 100% not me. Either I have PPMS, SPMS, or something else, but not RRMS. I can pretty much rule out SPMS though, since it follows RRMS ... if I've never had RRMS, then why would I have SPMS? Or maybe I'm wrong?

It is said that in PPMS lesions do not necessarily appear in the brain, but usually there will be some spinal chord activity sooner or later. I am going to make sure the new neuro does an MRI of the spine as well as the brain.

Hopkinsmedicine.org has this to say:

PPMS is identified by steadily worsening neurologic functions in the beginning without distinct relapses (attacks or exacerbations) or remission. The rate of progression may vary with occasional plateaus and temporary minor improvements, but declining neurologic progression is continuous. 

Totally me.

They go on to say that people with PPMS usually have problems with walking that worsen over time. Again, that's me.

There are more reasons why I think it's PPMS, but those are the ones I care to share right now. I've never actually seen an MS specialist; just general neurologists. I'm hoping the MS specialist will either see right away that it's MS, or see right away that it is not. Nothing gray. The first neuro I saw way back how ever many years ago said I had a textbook case but nothing specific was on my MRI yet. I liked her, but she was not a specialist. I want to get to the bottom of this.

Anyway, nothing has changed [meaning no new symptoms] but everything has gotten worse. The way I live my life has had to be altered quite a bit over the years. I do not think I ever shared on here that I used to run, hike difficult trails, walk 4 miles daily, and so on. I was very active, very fit. Not only did I do all of that, but I also was a single mom (they are adults now and such awesome people), homeschooled, and very much in to healthy eating. I cooked nearly everything from scratch using whole foods - even made my own crackers, pasta, tortillas, and so on. I have had to learn to compromise and take short cuts. I'll share about this in a future post.

I also used to cook supper for several people each week night. Now I make supper for a small few once or twice a week, and I keep it very simple.

I used to have a lot of responsibilities around the farm. Now I just do what I can and everyone else does the rest. All of my children live near by, and I live in my own apartment on one of my sons' property, so help is always close.

I rest a lot during the day - I do a little bit for about 15 minutes or so and then rest for at least a half hour, sometimes more, until I get up and do something else for another 15 minutes or so, rest, and so on. This is the only way I am able to get anything done.

I hardly drive at all now, and when I do it's only around our small town when I feel able.

I need a walking stick. I can only walk a short distance without assistance, and I must go slow. I mean slow. Like, I can look normal to the unsuspecting eye as long as I am walking really slow like I'm lazy and don't care, and have been honked at in parking lots for not walking faster across the road. My children and I used to go to the zoo frequently and use that as a place to walk and get exercise. Recently I went back to my home town and went to the zoo, only this time I had to be pushed in a wheel chair. I'm 42 years old. I used to walk around that zoo for hours on end.

I'll post again soon. I think.

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.