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).

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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.

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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.