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.

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 ;)

MS Lassitude Fatigue

Anyone with MS deals with others who think they know what is going on and try to relate. These people mean well but it can be a real struggle for the one with MS. When it comes to MS fatigue, comments like "I get really tired too" can be discouraging. The other day I read a blog post about fatigue and it made me think of doing a poem of sorts about the differences of 'being tired' vs MS fatigue. I'll have to save that for another day. Today however I would like to share the National MS Society's definition of lassitude fatigue. This is different from what I might call 'secondary fatigue' which would be fatigue brought on for a reason (like maybe your legs are hurting really bad during the night and you are unable to get sleep; as a result you are fatigued the next day).

****************

Lassitude fatigue:

• Generally occurs on a daily basis
• May occur early in the morning, even after a restful night’s sleep
• Tends to worsen as the day progresses
• Tends to be aggravated by heat and humidity
• Comes on easily and suddenly
• Is generally more severe than normal fatigue
• Is more likely to interfere with daily responsibilities

MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment.

****************

Some days I may start off pretty good but then all the sudden my body starts buzzing or vibrating inside and I know fatigue will hit within the half hour or so and hit HARD.  Like thousands of pounds of bricks are attached to my body and I am sinking into the floor. I recently heard a man describe it like this. Everyone experiences 'fatigue' whether they have MS or not. Someone without MS will relate your MS fatigue to the fatigue THEY have but that is like comparing an atomic bomb with a firecracker. Yeah, they both explode, however there is a huge difference in the impact.

I'll return some day soon with a little poem.

MS Journal Entry: 08-01-13

This is my second journal entry - for the first one please click on the 'Journal Entry' label below.

Well, I THOUGHT things were calming down a little two days ago however it came back with full force yesterday and now worse today. It's a challenge to type and think right now so I will keep this brief. About 5 days or so ago things started getting a LITTLE bit better. I could use my right side better and was not limping so badly. My mind was clearer as well. All of the symptoms were seemingly on the way back to some sort of tolerable level and really good two days ago ... until yesterday that is when all day I felt like I had been hit by a bus and survived. Aching all over and so tired (MS FATIGUE!!! It really is more than just being 'tired') I was hardly able to put one foot in front of the other. Now here today the right side is worse than ever, thinking is very slow, spelling off, speech slurring, etc.

I notice I tend to pick things up with my left hand instead of my right. It is too weak to hold anything for longer than a few seconds. Yesterday for example it was hard to carry a large (empty) stock pot. I had plans for yesterday to get some delayed work done in the kitchen however my plans were unrealistic. And that is what I am still trying to learn: what can I do and what can I not do? Sometimes I learn the hard way.

That's all for now.

MS and driving

The other day I was driving and realized my mind was not working right. I was thankful to be in our small town and almost home but it was scary nonetheless. I should not have been driving! Things that used to be 'no brainers' were now suddenly taking a lot of thought and were confusing to me. As far as I can remember, the other day was the first time my brain confusion impaired my ability to drive. Is this a sign of things to come or was it an isolated incident? Time will tell.

Usually if I cannot drive it's because I am too weak to continuously push the gas pedal. Cruise control is a blessing on road trips but city driving is physically exhausting for me and often times physically impossible. And then of course in this current "pseudo exacerbation" it was hard to drive at first because my right side was not working properly. It has since let up a little and driving is easier ... unless my brain is mixed up of course!

I probably have many years of driving ahead of me, but maybe I do not? Oh well, thankfully I have support and do not really like to drive anyway. You know, now that I think of it, the last few years have been hard on me. I thought I was getting confused in bigger cities because I moved to a small town. But now that I think about it, it's probably MS. I've lived in big cities my whole life and never had a problem navigating even the worst of situations. Now I probably make big city people mad because I drive slower because I have to think more.

Be merciful to the slow driver in front of you. You never know but maybe they are just doing the best they can?

"Secondary" MS Symptoms

According to the National MS Society, a 'secondary symptom' is: "the complications that can arise as a result of the primary symptoms." This recent "pseudo exacerbation" has given me the most 'secondary' symptoms to date.

A major primary symptom this time around has been the loss of normal function of my right side ... my face, my arm, my hand, my hip, my leg, my foot. Because my right side it not working correctly the rest of my body has had to make adjustments. As a result, my foot, leg, hip and back have been hurting. And then a few days ago my neck really started hurting.

I have not yet used a cane for walking but seriously was considering it this time around - and even more so once I discovered my whole body was messing up. Maybe if I had used a cane I would not have strained things so much? Maybe there is someone reading this that can give me the answer to that question? Thoughts? Ideas? Suggestions?

I am set to see my neurologist again this coming fall, Lord willing. I plan to talk to her about a physical therapist for times like this and also to teach me about using a cane (how, when, and what kind would suit me).

Exacerbation, flare, relapse: the real deal or just a "pseudo"?

It took  me several years to learn the difference between a real exacerbation (aka flare or relapse) and a "pseudo" exacerbation. In case you are in the dark, here you go [according the the National MS Society]:

Exacerbation
The appearance of new symptoms or the aggravation of old ones, lasting at least twenty-four hours (synonymous with attack, relapse, flare-up, or worsening); usually associated with inflammation and demyelination in the brain or spinal cord.

Pseudo-exacerbation
A temporary aggravation of disease symptoms, resulting from an elevation in body temperature or other stressor (e.g., an infection, severe fatigue, constipation), that disappears once the stressor is removed. A pseudo-exacerbation involves symptom flare-up rather than new disease activity or progression.

My thoughts: I believe stress and lack of sleep should be added to the "pseudo stressor" list. I guess lack of sleep could be lumped in with 'severe fatigue' however now that I have MS I see fatigue in a whole new way. There is a huge difference between 'lack of sleep' (aka tired or even extremely tired) and 'severe fatigue'. I can still function when I am tired or even extremely tired but I cannot function when I have what I would consider severe fatigue. I can hardly close my mouth to stop from drooling when I'm sitting on the couch trying to look alive.

Here are some good resources that better explain this topic. If you know of any others, please share.

This is a podcast where doctors discuss the differences between an exacerbation and a pseudo-exacerbation.

This is a PDF chart with guidance from one clinic about what to do when you think you're having an exacerbation.

MS Journal Entry 07-20-13

This is my first journal entry. I hope to make this a regular thing. Since this is the first, it might be a little different than ones to follow.

I have been struggling for the last few weeks with a flare / relapse / exacerbation, though the symptoms never really seem to go away; sometimes things seem a lot more manageable but it's always there in one way or another (or several ways). Something new this time is my right side is very weak. About a year ago my right side was totally numb from just below the ribs to the tip of my toes. And it was just the outer edge of the right side. For example: I could feel my inner thigh but but I could [literally] not feel my outer thigh. But this is not like that. I can feel it; it's just really weak. Some parts feel kind of numb, but not totally numb. Coordination is difficult. Little every day things I take for granted like peeling cucumbers with ease, pushing down the gas pedal, using the 10-key number pad with my right hand, etc. All of these tasks have now become a challenge. I have to slow down and really think.

Besides this new symptom, many of the old ones have come to say 'hello' and remind me they are still there. Burning in various areas of my body. Some confusion. Lack of concentration. Crazy fatigue. Crazy fatigue. Really. Weak. Speech problems. Blurry vision. And so on.

These things happen at others times too, but I just learned that's known as a 'pseudo flare / relapse / exacerbation'. I'll do another blog post on what that means.

How long will this last? It seems everything just kind of stops when this happens. Laundry gets behind. The house does not stay as clean. Projects get pushed aside. Meals become really simple and sometimes odd (oatmeal for supper ... it's easy, fast and still healthy, right?). Errands do not get taken care of. And so on. It's tempting to get frustrated some times, but I have learned to just take a deep breath and praise God for what does get done. As long as I do my best, what more can I do? Nothing but stress out and make things worse.

Speech and MS

MS has many faces. Some are ugly. Some are sad. Some are just plain funny. Today I will share a funny side.

No, we are not stupid. Sometimes we just have troubles talking. I used to be a very good speaker. Always aced the college speeches, was great at customer service on the phone, and so on. Now however I assume some people just think I'm stupid. Oh well. At least I can laugh.

Here is an example.

I was out shopping with someone and we needed something measured. Imagine me talking really slow and deliberately as I said: "We can take it to the fabric depart [pause for thinking...] depart [thinking...] depart [still thinking...] departner [no wait, that's not right. What should it be?] I mean, department, and have it weighed [ugh, more thinking] I mean measured."

Welcome to 'My MS Walk' blog.

I have been struggling with MS for many years, though I did not know it till about 3 years ago. At that time I knew nothing about MS. By sharing my day-to-day life with MS I hope to educate others who also know nothing about it. I will be real yet at the same time I will be keeping my identity private.

At this time I am not officially diagnosed though my neurologist says I have a very textbook case; she is just waiting for more scars to show up on the MRI and says it's just a matter of time. After a little more research, I am wondering if I have PPMS or SPMS instead of RRMS? If you have PPMS or SPMS please email me and share your experiences if you have time. I am still so ignorant to all of this.