Support

I joined a Multiple Sclerosis Support group on Facebook a few weeks ago.  I thought it might do me good – I’m not a very social person so while I’ve considered going to a local support group for the last two years, I clearly haven’t done it.  I think it’s just because I generally don’t like socializing, even though I know the support would be beneficial.

Which is what led me to seek support out online.  I thought… why not?  At first, it was great to just read other people’s posts about how they’re having a rare good day and I could relate, ya know?  Yay, I cooked dinner today!  Go me!  But as I’ve continued to read other posts, it’s really become sad.  Depressing.  Hard to read post after post after post of people around the world suffering from this stupid disease, just looking for someone to tell them they understand and it’s going to be okay.

Reading these posts also scares me a little.  I haven’t had a real bad attack, at least I don’t think mine was that bad.  Even my first one that had me in the ER and then receiving the MS diagnosis wasn’t super terrible.  I was fatigued beyond belief, dizzy, eyes couldn’t focus, I couldn’t walk by myself… but I could still walk.  I could still fill out most of the hospital forms.  I’m reading other people’s posts about them just falling down because their legs went numb.  I have to imagine this is going to happen to me at some point.  But it sounds so scary!  I was afraid that was going to happen about a year before my diagnosis when my legs went completely numb.  I could still walk (weirdly), but my leg felt floppy.  Like it wasn’t mine, like it was possessed.  Still, no falling!  What am I going to do when that happens?

Other posts really made me realize how much support I have in my life and how I’m seriously, seriously grateful for everyone’s support and understanding!

The posts that are really bothering me a lot are the ones where people are complaining about the lack of support from family.  One woman wrote how she was going through a terrible divorce at the same time she’s dealing with this new MS diagnosis.  She’d had massive fatigue for months before her diagnosis and her husband just thought she was lazy which ultimately led to their divorce.  That broke my heart.

Another young woman posted about how her mother has been by her side during her whole diagnosis – going to the hospital, going to all the neurologist appointments.  And yet her mother still keeps telling her she’s not trying hard enough, that she’s lazy, that she should be doing more.

I joined the support group because I’ve been going through a flare-up(?) for two weeks.  I did my yearly jewelry booth at the Pride fest, and it was a nine hour day that wiped me out.  I knew it would.  I did it last year.  I knew it would be worth it (and it was!), but this year it hit me harder than last year.  I’m not bouncing back as quickly.  It’s been like having the flu for two weeks – weak, tired, MSy (which is my term for bumping into doorways, dropping everything, stubbing toes – “I’m having a real MSy day.” )

When my husband comes home from a hard, stressful day of work, he asks me how my day was and I tell him I did nothing.  I slept for 2 hours in the morning an then I slept for 3 hours in the afternoon.  Otherwise I sat in a recliner and watched TV and Facebooked.  When I tell him this, he gives me a hug and a kiss and he tells me he’s sorry I’m feeling so shitty.  And then he goes and makes dinner.  That man is amazing an I love him so much.  I can’t imagine me telling him how my day was and him being scathing… asking me why I haven’t done the dishes in 3 days or vacuumed or done anything.  How can one do that to their spouse, knowing that they have a chronic brain disease?!

My parents, my siblings, my in-laws, my very few friends that I have… they all understand.  When I tell my grandmother I’m sorry, but I can’t talk to her right now, I’m too tired, can I call her in a few days when I feel better, she says no problem, she loves me, feel better.  When my friend wants to take me to breakfast and I tell her I’m too tired, she just says to let her know when I’m feeling up to it, and to feel better, and can she do anything for me?

So thank you to everyone in my life who’s supportive and understanding as we all work our way through the confusion that is Multiple Sclerosis.

Can Do and Can’t Do

Yet again I feel myself struggling with trying to understand my body now that I have MS.  “Struggling” sounds like such a heavy and negative word and I don’t feel quite that negative about it.  It’s just very frustrating for me to not be able to predict or know how my body is going to decide to act from one day to the next.

Monday I was adulting on a whole new level (for me, anyway) – I had my first colonoscopy.  I’m 37 years old and that’s generally quite early for a colonoscopy, but since there’s colon cancer on both sides of my family, the doctors deem it necessary.  So I spent all of Sunday on a clear liquids-only diet.  It should be a fairly simple thing, but when you combine diabetes and MS, it gets complicated.

I’ve had issues with my blood sugars dropping suddenly which is very dangerous and very scary.  I was worried about this happening Sunday as chicken broth doesn’t have many calories.  I decided not to take my diabetes pills nor my insulin all day to prevent a sudden drop.  I drank glasses of straight apple juice for the first time in years!  That was odd.  And I ate yellow Jell-o that was not sugar-free, also the first time in years for me.  I expect the change in diet and lack of regular medications was probably a slight wear on the body.

Then on Monday, I had to arrive at the hospital 2 hours before procedure time.  Rather than a regular colonoscopy, the gastroenterologist opted to have it done in the hospital operating room with an anesthesiologist… just to be safe in case the scope in my butt exacerbated MS symptoms and started causing spasms or some such.  So I sat in a hospital gown for 2 hours by myself, listening to some poor old woman on the other side of the curtain moan and gasp in pain as she recovered from whatever surgery she had.  I got a little emotional and started to tear up, so tired of the hospitals and medical shit that seem to encompass my life now.  I expect a lot of that was due to not taking my anti-depressant/anti-anxiety medicine for two days as well as being dehydrated and starving.  🙂

Got that all over with and had positive results – no biopsy, no polyps, all clear!  So that was good news!  Tuesday I had a 9:00am physical therapy appointment and my therapist is working my frozen shoulder hard.  No mercy!  I’m up for it if it fixes my arm, but I think I scare all the old folks in the common gym room as I’m yelling and screaming out in pain, kicking and arching my body off the table as I cry out!  Hahah!  I know I’m making progress because I can just barely reach my arm far enough back to french braid my awesome rainbow hair!  That’s enough to make my day!

After that, I took two dozen donuts back to the hospital.  There must have been six or seven nurses that all looked after me during my several-hours stay and they were all very kind and comforting.  I wanted to say “thank you”…with donuts.  Heh.

But then when I got home, I found myself exhausted.  Too exhausted to cut up vegetables for dinner.  Too exhausted to do dishes.  Too exhausted to shower.  Barely able to get myself water.  Thankfully, my awesome husband understands these days and so when he came home from his long, shitty day at work, he cut up veggies and roasted them with chicken, cleaned up all the mess, and did it all with a smile.  He’s really wonderful like that.

Then today, I totally expected to be flat out exhausted.  I did dishes first thing in the morning before I ran out of steam.  Made espresso and stuck it in the freezer.  Ate an avocado with some queso fresco for breakfast.  Blended my espresso drink, which was so killer – gingerbread cookie dough with real bananas and freshly grated nutmeg on top… Café Mason!

I really wanted to make dinner for my husband tonight so he didn’t have to, but I was quickly running out of energy.  I’d talked to my grandmother and at the end of the conversation, I was yawning uncontrollably.  I hung up fully intending to take a nap, but… instead I took 1200mg of gabapentin and went into active-robot-mode.  The doctors don’t seem to know why it affects me that way, but my neurologist said to just go with it… whatever gets me through the day!

Once that kicked in, I made a huge batch of Herbes de Provence focaccia dough from scratch that I decided to use as pizza dough.  I crisped up half a pound of bacon that we had and then made a bacon-garlic tomato sauce for the pizza.  I chopped up all the veggies.  I did all the dishes from that.  I weighed out my dough into pizza-size balls.  And I’m considering getting another round of herbs started in my Aerogarden.  (I keep a food blog, so yes, I’m one of those people that take a lot of pictures of my food!)

Long story longer (I had shit to say, man!), I don’t understand how yesterday I can be so tired that I feel like I can barely move.  Today, I got so much accomplished (with the help of drugs, mind you) that I actually felt guilty for being at home and not working.  Tomorrow, I’ll probably be completely pooped and unable to do much of anything.  But who knows?!  Certainly not me!  And that’s the irritating part.  It’s so hard to plan for anything because I don’t know if I’m going to wake up incapacitated or ready to go, go, go!  And even when I can go, go, go, I don’t know how long it’s going to last before I hit that wall hard and just have to sit and veg (which I think just happened while I sat and typed up this post.)

The joys of MS.  At least I’m going to have kick ass pizza tonight.  🙂

Surprise!!! Fatigue!

MS and fatigue go hand in hand.  As far as I can tell, fatigue affects everyone with the disease to varying degrees.  And like everything with MS, it changes day to day depending on temperature, emotions, which planets are aligned with the moon, and who knows what else.

For me, one of the most inconvenient aspects of fatigue is the way it sneaks up on me.  For instance, I woke up this morning pretty sore, as usual.  After my husband left for work, I ate a small breakfast, did yoga, washed up the dishes, put away some laundry, then got some lunch.  Interspersed between all those activities I rested whilst watching episodes of whatever crappy television series I’ve decided to binge on this week.

The clock said noon and I thought, “I’ll go make myself some coffee… because later tonight, I’m going to cut up veggies and bake some chicken for spring rolls.  And maybe I’ll make a batch of cream cheese brownies this afternoon… yeah, that sounds good and won’t take very long!  And I’ll even be able to wash up all the dishes I dirty from baking!”

I had all these plans that seem so pathetically boring and ordinary… but you know how it is with MS.  If you get three mundane tasks accomplished in a day, you pretty much are the Champion of the World.  I was sure I had the energy to accomplish all of this today!

However, once I washed my lunch dishes and made my coffee, I felt like I could barely drag my ass into the other room to plop down in my chair in front of the tv and write this out.  I think that’s it for me today.  What a drag.

And now I won’t even have cream cheese brownies to eat.  Lame.  I knew I should have prioritized brownies before dishes and laundry!

 

The Joys of Traveling with MS

…also read as, “Traveling with MS is Hell”.

A month ago I booked a last minute round trip ticket to Las Vegas where a large handful of family lives.  The airfare was cheap and it happened to coincide with my grandmother’s birthday, so my husband told me to just book the flight.

I would be traveling on my own, as my husband was unable to get time off of work, and these were the fears that haunted me for the two weeks between buying the ticket and taking off:

• How would my energy levels handle taking two flights and spending all day in airports?
• How damaged will my pride feel if I have to ask for wheelchair assistance at the airport?
• How many days would one day of stressful, anxiety-filled travel knock me on my ass once I got to Vegas?
• Will my family understand if I have to take a nap every day?
• How much will I disappoint my family, who was already excitedly making evening plans with me, when I tell them I can’t do these things?
• What if any of my $583-each injections gets damaged during travel?
• What if one of my nephews snoop through my stuff and damage one of my injections?
• If I’m staying with my brother and his new wife, whom I’ve never met, who will help me with the injection in my upper hip (basically my butt) that I can’t reach very well by myself?
• Will the heat affect me negatively?
• What if I get sick, as is common when one is in an airport and airplane… I haven’t had a cold or flu yet with MS but have been told to expect the worse.
• What if I have an MS attack while I’m in Vegas?

And those were only my multiple sclerosis concerns… never mind the fact that I’d been having extreme back, shoulder and neck pain, that my digestive system does not like changes or travel, that several members of my family had recently been fighting with each other so I knew there’s be stress and drama and the fact that my emotional and anxiety levels have been at life-time highs.

Needless to say, I knew this was going to be a hell of a learning experience but it had to happen some time.

Being aware of my anxiety, I think I do pretty well at taking steps to avoid and relieve it wherever I can.  I immediately made a packing list that I kept adding to over the next couple weeks so that I wouldn’t forget anything.  I got a letter from both my MD and my neurologist stating that I’m diabetic and have MS so I will be carrying syringes and vials of medication and may require wheelchair assistance.  I decided to only take a travel-on suitcase so I didn’t have to worry about additional walking or waiting time at baggage claim – a week visit with only 1 extra pair of jeans, 2 tops, and 1 set of pajamas.  I made sure people were okay with me doing laundry several times while visiting!  I was really trying to do everything I could to make it easy on myself.

The alarm went off at 3:30am in order for me to get up, get ready and get to the airport at 5:00am to catch my 6:00am flight.  Getting through airport security at the tiny little airport I was taking off at was no problem, as suspected.  It takes about 1 minute and 30 seconds.  I was, however, disappointed that there was no water available to purchase once you got though security and that’s where the anxiety began, as I tend to get a dry cough when flying and sipping water alleviates that.  It was quickly forgotten though once they began boarding.  “We’re going to start boarding with any travelers who are active service duty, anyone traveling with an infant, or anyone who is disabled.”  I looked at my boarding group, the last one, Group 3, and I thought to myself, “I’m disabled!  I have a note from my doctor that says so!”

A little of me felt guilty at this point, as I had plenty of energy, but I justified it with the fact that I often choose a window seat at the back of the plane and I never get up for any reason, so it only makes sense for me to board first, get settled, and be out of everyone’s way.  It’s never made sense to me why they board the front of the plane first anyway.  The gate attendant didn’t even ask to see my doctor’s letter, I just said I have MS and I have fatigue and weakness issues and this was my first time flying with it.

The flight went well and fast, only 45 minutes.  I was nervous about how far I might have to walk when I got to San Francisco International, but as luck would have it, my connecting gate was just around the corner, not a long walk at all.  I grabbed a coffee and a croissant for breakfast and waited for my connection.  I again approached the gate attendant to explain my disability and he asked if I’d like a wheelchair waiting for me when I landed in Vegas.  I paused a moment to think about it and remembered when I flew to Vegas by myself two years ago, with perfect health, I had a very hard time navigating my way out of the damn airport, had to take a tram and do a lot of walking… so I said yes, please to the wheelchair.  Pride be damned, energy conservation is more important.

I’m so glad I did… it was a long ass walk through the airport, catching a tram, and then another long ass walk to the parking structure my brother was waiting for me at.  I felt a little bad that my energy wasn’t entirely sapped and I was a 37 year old woman being pushed in a chair all this way by Pat, a woman who was surely in her early 70s.  I had to keep reminding myself that I am disabled and while I don’t look it, my body would certainly have let me know it.  Still felt weird.

I also didn’t know if you were supposed to tip wheelchair attendants and when I asked my brother discreetly, he was also unsure… and so I left the lovely Pat with a lot of thanks but no tip.  Only later did my grandmother inform me that I should have tipped her.

The trip went well, and there’s no need to go into great detail.  I was awake every morning between 6:30-7:00 due to sleeping in a different bed, but I only ended up taking one nap at the end up the week.  I was pretty damn tired in the evenings, but luckily so was everyone else, being that most of them were working and/or dealing with children.  So I didn’t feel so out of place or a nuisance at all.  But when the end of the week came, I was really feeling it.  I was so ready to go home and just relax.  Even when I don’t take naps at home, I’m usually by myself, in a recliner, reading or watching a movie, expending very little energy.  In Vegas with no naps, I was still always visiting or doing something with someone, so it’s no wonder I felt so wiped out at the end of the week.

I didn’t plan the journey home as well as I did the journey out (but you can be sure I will next time!)  I hadn’t considered the line at airport security in Las Vegas.  It was a very long line, a lot of standing/shuffling and I was pooped by the time I made it through.  I’m still not exactly sure how to set up wheelchair service for next time – how would they know when and where to meet me when I got dropped off?  Would I have to wait in the check-in line with all the people who have luggage, even though I had no check-in luggage and a printed out boarding pass?  Something I’ll have to look into next time.  I’m sure if I’d had the wheelchair service, I wouldn’t have had to stand forever in that long security line.  Then, once I got through security, I again had to walk across the airport to their tram, get shuttled to a different part of the airport, and then walk to my gate.  It was a lot of walking with my two pieces of carry on and I was exhausted.  I requested a wheelchair to be waiting for me in San Francisco – I knew I’d need it.

In San Fran they wheeled me to my gate and I told them I was fine without the chair at that point, thank you.  I felt bad again because I wanted to tip the wheeler, now that I knew you were supposed to, but the smallest bill I had was a $10.  Had it been a $5, I’d have just given it to her, but I couldn’t make myself tip with a $10.  So I felt guilty.  I will be far better prepared for tipping attendants next time.  But once I was left there, my flight ended up being delayed… so I trudged my way back to the food court for some lunch, and then back to my gate again.  As I sat waiting for my delayed flight with a full belly and only a few hours of sleep, I was  nodding off.  I knew there was coffee somewhere in the airport, but as I walked and walked and walked, I couldn’t find it.  I felt my whole body growing weaker and much less coordinated, as I often get from pushing myself too hard with MS.  I have no doubt anyone who took notice of me would think I was drunk and stumbling.  I didn’t even care.  I finally asked a random gate attendant where the nearest coffee stand was and she pointed me to the right gate… at the end of a remote spoke of the airport.  By the time I got there, I was trying to explain to the barista that he heard me correctly, yes I wanted 5 shots of espresso in my blended drink.  When I finally got to my gate again, I think I texted my husband that I wished I were dead.  That’s how horrible I felt.  And that there was no way I was ever traveling like this alone again.

I finally made it home and I couldn’t think.  I told my husband I wanted a smoothie… no, I wanted spring rolls, no, I wanted a smoothie…. no, I’ll just eat what was at home.  No, I want a smoothie and spring rolls.  My mind was just blasted.  And I think somehow my MS energy relates to my blood sugar/diabetes, but I haven’t figured out how yet.  Because I was sucking down a “fake” smoothie from the drive-thru coffee place which is just made with ice and a fruit syrup mixture, so I thought my blood sugar would be screaming high.  But when I checked it at home because I was feeling weird, it had dropped to a dangerously low level… which made no sense at all.  So then I’m asking my husband to bring me some juice and dried cranberries which I’m throwing back along with the smoothie to try to raise my sugars up.  And low blood sugars hit my body real hard too on the rare occasions they happen – the mind gets mushy and slow, I’m freezing but sweating, motor skills start failing, heart beats fast, and I feel like I can’t even move.  So combine that with the MS symptoms of fatigue – slow, mushy brian, poor motor skills, low energy.  It was pretty much like I’d been run over by a truck.  (Or I wished I had!)

In summary – traveling with MS sucks ass.  It’s been six full days since I’ve been home and I still don’t feel all the way recovered or rested, I’m still weak and with less energy than usual.  I don’t want to do it again.  I know I’ll have to at some point, and I’ll remember all the things that I learned with this trip, and I’ll do it and I’ll survive.  But it was hard, man.  Hard and unpleasant.  That’s for sure.

 

Drowning In Paperwork…

…at least that’s how it felt today.  I’ve seriously neglected opening mail because it’s just constant statements and bills and statements and bills, with some more stuff thrown in from the county and the state and the federal government.

So I tackled this massive pile today, strewn across my living room floor.  I get all of my payments direct deposit and I pay all of my bills online.  Yet not able to opt out of paper statements for these folks.  They just come and come and come.  I actually need to order a larger file folder because I found I don’t have enough sections in my current one.

This pile was the garbage (recycle) pile.  So much waste.Does everyone else have this same issue?  I never had so much mail at all before being diagnosed.  It’s overwhelming.  We had such a full day on Sunday (took pictures of the changing leaves in wine country… I want to post about it later – I just had to purge my disgust for paperwork.)  I really didn’t want to tackle this project today, I just wanted to rest.  But that’s what I’ve been doing the last two days and I just couldn’t spend another day like that.  So I popped a couple of gabapentin and went to work.

I just had to vent, man.  I’ve got Louis Prima playing in the background and I have to say… the man’s music does wonder for a dark mood!  Can’t help but tap my feet and grin.  I love his music so much.

Halloween & M.S.

It was only days after Halloween last year that I began feeling sick.  The entire month of November I had bouts of vertigo, nausea and exhaustion – I couldn’t even drive that whole month, my husband chauffeured me everywhere.  The beginning of December is when it got so bad I went to the ER and they ultimately gave me the M.S. diagnosis and hospitalized me.

This Halloween, I realized M.S. got in the way a little.  The day we had the opportunity to go to the pumpkin patch was a bad fatigue day for me.  Just walking the short distance from the car in the parking lot to where the actual patch started, I found myself wondering if we should just go back to the car and get some pumpkins at the grocery store.  I was so tired.  But picking out pumpkins at the patch is something I really look forward to every year and I didn’t want M.S. to take that away, so I pushed a little more than maybe I should have… but it was so worth it!

Then I kept debating on whether or not to paint my face.  Last year was the first time I’d ever done it, and I really enjoyed it.  I don’t ever dress up, but I enjoyed just painting my face and was looking forward to doing it again this year.  It had taken me about an hour or an hour and a half last year and I remember my arms getting tired – I figured this year would be slower and harder on the arms.  I thought I’d try to do it tomorrow (Halloween), but then my friend asked if I’d join her for breakfast and then take her and her boyfriend to the airport and feed her dogs later that evening.  I know that breakfast and the 30 minute drive to the airport and 30 minutes back is going to be enough to wear me out, so face painting would be out.  Then I thought maybe I’d do it today – it’s a Friday and I figured anyone who would be dressing up at work would be doing it today so it wouldn’t be too weird if I did.  But I woke up feeling pretty fatigued and I knew I wanted to save up enough energy to carve pumpkins in the evening, so I’d pretty much convinced myself that I just wouldn’t be able to do face paint this year, there would always be next year.

I kept seeing Halloween stuff online and on the television for face painting and Halloween and I was feeling the itch so much that I just told myself to get my butt up and dig out all the makeup from last year and give it a try!  If I found myself too tired to finish halfway through, I could always just take off whatever I’d done and call it quits.  But I wouldn’t know until I tried, right?  It came out great!  I was stoked!  Pooped afterwards, but still glad I did it.

Then early this evening we decided to carve our pumpkins.  I got myself two to carve, and I was already having a hard time with the strength in my hands and arms as I tried to scoop out the guts.  I had to take a few breaks and just rest for a few seconds.  My husband was done with his before I even began cutting my design out, so I asked him if he’d mind too much scooping out the insides of my second one.  He was awesome and did.  Took me quite a while to get my two pumpkins carved… but they looked great and we’ve got a ton of seeds to roast!

So… yeah, M.S. got in the way of Halloween a little bit.  But it was nothing too drastic and while I might have pushed myself a little harder than I should have, Halloween only comes once a year and it brings me so much joy, it’s worth a little fatigue and exhaustion.  (I hope I can still say that in a few days!)

Took this picture through my kitchen window the other night. Kind of Halloween apropos.

Gabapentin and M.S.

Gabapentin has become my “wonder” drug through M.S., and I’m not sure if that’s okay or not.

Gabapentin is an anti-epileptic used to control some types of seizures in epilepsy. It is used in multiple sclerosis to control dysesthesias (pain caused by MS lesions) and the pain caused by spasticity.  -National MS Society

Before I was diagnosed with MS, I was prescribed Gabapentin for some hip and back pain I was having, so I was familiar with how it affected me – it does help with the pain, it also makes me pretty high in an odd way.  Once I had MS, the doctors explained that it will help with some pain I might get from different symptoms, and they upped my dosage.  I find not only does it block the pain, it also makes me energetic… in a way.  Like a robot, really.  I do everything a bit slower, but I do it methodically and mechanically.  And I’m like an Energizer Bunny, I just keep going and going and going.

Honestly… do I take it for MS pain?  No.  I still take it when I have hip and back pain, but I also find I will take it on days like today – when the dishes have piled up for days because I’ve been so fatigued, and I can’t stand to look at them anymore, but I can’t find the energy to do them.  I take my 1200mg of Gabapentin, and in a half hour, I’m ready to get shit done!  Like a slow, stoned, Stepford Super Woman!!  I might not be able to walk a straight line, but god damn if I can’t do a ton of dishes!

And I get chatty.  Oh man, do I get chatty.  I can’t control it… I’ll be babbling on to my husband and then I’ll say, “I know I’m babbling, and I can hear in my head how stupid I sound, but I can’t stop talking and even now, just telling you that I know I’m babbling, I still can’t make myself stop!”  He grins, gives me that look that says, “You stoner,” and he tells me that it’s okay if I need to babble.  Even when responding to messages online or texts, I find I just type, and type, and type and then apologize for my incessant babbling again.  It’s a weird drug.

I plan on discussing this with the neurologist at my next appointment, which is next week.  While I don’t take the Gabapentin on a daily basis, nor do I take it multiple times a day, I still want to make sure that using it for energy on crappy MS days isn’t abusing it.

Does anyone else with MS use Gabapentin?  Are you using it for your MS pain or for other things as well?  What dosages do you take, and how often?  Does it get you stupid high as well?

Figuring Out The New Me

I realized I had a brief hiatus there with blogging.  When I tried to figure out why, all I came up with was that I just didn’t feel like writing.  Things tend to come in brief bursts of interest for me – writing, making jewelry, cooking, reading.  I’ll do it for a few days, a few weeks, then take a rest and come back to it later, refreshed.

It’s been a little over 8 months since diagnosis.  Reflecting over the last several months, I feel pretty positive.  I think I’m learning to adjust to the different lifestyle that MS requires.  I make appointments for as early in the morning as I can – I don’t have any issues getting out of bed, and I seem to have most of my energy between 7:30am and 10:30am.  I’ve learned that I need at least a day between chores and appointments.  I can do laundry one day, but the next day I should do nothing.  Then the third day, I can go to the grocery store.  I try to take a nap some time between 1:00pm and 5:00pm; sometimes they’re an hour of rest, not actual sleep, sometimes I crash for four hours straight.

Mango and Watermelon-Cucumber Vodka

I’ve learned to try to stay cool.  I’m enjoying summer the way I always have – indoors.  I definitely notice a lot more numbness when I’m hot… there are days my right pinky toe is entirely numb.  Most days this summer, my right foot is “asleep”.  Now I have a medical excuse to not enjoy the outside heat!  I’ll just self-medicate inside with my tropical summer drinks.  🙂

I’m still testing and learning my energy limits.  I had a friend who was out of town and asked if I could feed her dogs twice a day for 9 days.  I’d done it for 2-3 days for her before without much issue.  I thought it through, as far as my MS energy goes, and thought I’d be fine.  I get up in the morning, drop the husband off at work, head to the friend’s house five miles outside of town, feed the dogs and let them run around the property while I read for a little bit, go home and nap, pick husband up in evening and head over with him, feed the dogs, let them run for 10-15 minutes, and go home.

Bear dragged garbage all over.

Huge mistake.  By day three, I was exhausted… just wiped out.  I’d come home and feel like I was neglecting my house, so I’d do some dishes.  Eat some lunch.  Pay bills, balance the budget, argue with mail-order pharmacies on the phone, argue with the insurance company on the phone… never get a nap in.  The second-to-last day, a bear got into the garbage and spread it all over the lawn.  Picking up that nasty, two-week old garbage was the grossest thing I’ve ever done (I had latex gloves!)  But just picking it all up out of the yard, I thought I was gonna pass out.  Light-headed, knees were all quivery.  And the bitch of it all is that they have a bear-proof box the garbage is supposed to be in!  The boyfriend just didn’t put it in there before they left and we were none the wiser.

Needless to say, doing even minimal activity 9 days straight without a break is not something I can do… three days was enough to wipe me out.  Definitely need to keep one day breaks in between pretty much any days with activity.  So that’s taking some getting used to.

My second round of MRIs were good.  The neurologist said the lesions looked slightly smaller… less “active”.  Hopefully a sign that the Rebif is working.  Possibly some small, new ones, but she couldn’t tell 100%.

I’ll be starting physical therapy next month… kind of/sort of MS related.  Since I’m home and not very active most days, I was trying to keep somewhat in shape (or as much as being in shape is for me) by doing exercises at home – crunches, squats, yoga stretching, hand weights.  When I saw the neurologist last month though, and told her I was suffering lower back issues, she asked me to show her how I do my exercises, claiming that most people do not do crunches right and end up hurting their back more than helping.  And… of course, I was doing mine wrong.  She tried getting me to use certain core muscles and I just could not make them work the way she wanted them to, hahah.  So she recommended PT to give me some training on how to do my exercising correctly.  I haven’t done anything for a month now, and my body has definitely noticed it.  Picking up that bear’s garbage mess strained my hamstrings so much that the whole next day, both of them ached and kept threatening to charlie-horse on me!

I’ve acquired a new tablet and found that colouring apps are extremely meditative and calming for me.  It’s also been nice for keeping notes on symptoms I’ve been experiencing.  The neurologist and physician appointments are only every 3 months and my memory is so non-existent, I need to be able to write things down as they’re happening because by the next day, I’ll have forgotten.  I’ve always carried my Kindle with  me wherever I go for reading, and the tablet serves that purpose now, so it’s always with me, ready for reading, meditative colouring, calendar scheduling, and note keeping.  I love it.

So much pretty hair!!!

Speaking of colouring… I have thoroughly been enjoying the freedom I have to play with my hair.  It seriously brings me pure happiness to walk by a mirror and think, My Pretty Pony ain’t got nuthin’ on me!  The colour just tickles me to no end.  It’s always felt right to have funky hair colours… I missed it so much when I couldn’t do it.  (I’m also seriously fortunate that my husband was willing to learn how to do it for me, because there’s no way I can hold my arms up long enough to colour my hair anymore… they wimp out too fast.)

Talking with some people about having MS or the changes it’s brought in life (like not being able to work), folks tend to give pity and sympathy.  And it’s genuine, you can totally tell, and I appreciate it.  But I really don’t feel I deserve it.  It is unfortunate that I have MS, sure.  And yes, it’s changed our lives a great deal, no doubt.  But I am constantly reminding myself that it’s not all that bad.  There are so many folks out there whose health and lives have changed much more severely than mine, not just with MS but any number of illnesses!  I’m really very lucky and grateful for all I still have and that I can still do.  I do think it’s taught both me and my husband to appreciate the all the little things.

Second Winds

This author’s blog entry summed it up better than I could!  I’m recovering from my first day off of feeding a friend’s dogs twice a day for nine days.  I didn’t think it would be so bad.  I was exhausted by day 3 and had to power through the next 6 days because there was nobody else I could ask to do it.  I was grasping daily for that second wind, and third, and fourth…

https://www.msconnection.org/Blog/August-2015/Wind-Quest

Every Morning

This morning is a fine example of how every morning feels for me.

I woke up at 7:15, we left the house a little after 8:00.  I dropped my husband off at work, a five minute drive away.  I drove another five minutes up the road to get our grill’s propane tank filled.  Hit up the drive-thru coffee.  Went to Michaels (the craft store) to find a specific type of oil paint marker, which they didn’t have.  Walked 2 doors down in the strip mall to Staples, who also didn’t have the pen.  Drove three minutes to a local stationery store, which had the pen.  Drove home.  Carried the propane tank to the house, about 10 steps away, and carried it up 5 stairs.

That was the extent of my exertion today – driving, and just a couple of quick in-and-out of stores.  And yet, when I went to walk up the stairs to our apartment (we live on the second floor), I had to pause in the middle of the steps, because my legs felt like there just wasn’t anymore energy in me.  I feel depleted.  Even typing this, I find my eyes crossing… having a hard time focusing.  Lifting my coffee, my arms feel like I’ve lifted heavy weights for an hour – sapped.  And it’s only 9:30… two hours since I got up.

Still have hope that the energy will come back at some point… but going on 7 months of feeling like this every single day.  I keep telling myself it’s okay to have hope, but I also have to accept that this could be the reality of the rest of my life.  It’s a weird thing to try to wrap my head around.