Sleepless night, but house is going to be clean!

I hope this won't sound too whiny. Last night was excruciatingly painful. Not much sleep, hence me being slightly incoherent at the moment. I'm typing fast too so that I can get out of the way before the cleaning lady shows up. My mother-in-law pays for a cleaning lady to come every other week now, to save me the back spasms associated with vacuuming, bending, etc. I used to love cleaning. It's good for your soul in some ways. Now, I just stick to cleaning drawers and closets and stuff. Still satisfying.

Ok, so I'm a little anal retentive, maybe?

Did I say that I really love my mother-in-law? She is wonderful. So is my father-in-law.

Anyway, the last couple of weeks my normal neuropathies and the (brutal, at the moment) fatigue have had general body aches added for interest. You know when you have the flu, right at it's very worst and your body hurts so bad that you just want someone to put you out of your misery? It's like that. Then there are the stabbing pains up and down my spine. Not the L'hermittes kind of pain, I've had that before and didn't find it painful. Actually, it was kind of a weird feeling, every time I bent my neck it felt like an electric currant buzzing down my neck and spine. Not all that bad at all, except that my neck would get so tired from all the shocks that it felt like my head was just going to flop over onto my shoulder. ~l~ The weirdities of MS. No, there is no such word as weidities, but I like it.

Heat seems to help with the body pain somewhat, but I look absolutely ridiculous lying on the couch with all sorts and sizes of heated bean bag thingies stuck to me.

Going to get one of the damn things right now to put on my neck. Typing seems to be aggravating it.

That's much better.

Rob thinks that I should go back on my happy pills again. I agree. While I don't think that the current additional aches and pains have anything to do with stopping my sertraline, maybe I'd be better able to deal with it. Rob must get sick of the blubbering. He has never been anything other than supportive.. how do they do it, the husbands/wives/partners/caregivers? Granted, Rob and I are pretty pragmatic people, but he really just takes every day as it comes and doesn't worry about tomorrow (which, by the way, makes him a lousy bill payer, so I do that). It makes him a wonderful partner though. He listens to each new complaint, then hugs/rubs or just holds me until I feel better. He doesn't do the advice thing unless I ask for an opinion on something.. he cooks, gives me a break as soon as he comes home and lets me rest while he takes over the kids. Ok, he is perfect. Except he doesn't clean. Not a bit. ~s~

Where was I? Rambling again, lack of sleep and all that.

I phoned my manager at work to tell her that I wouldn't be in this week again. I only worked one day out of four last week, and will miss another 4 this one. I also requested the paperwork for LTD so that we can look it over and discuss it with the doc next week at my appointment. If nothing else, I need a note for work excusing me for the sick time. Much as I love working, I just can't go for a whole day (especially a 10 hour shift) anymore without rest. When I'm at home I often nap for up to 3 hours in the afternoon. And that after having slept in on days when I not feeling well.

Strange, after being a morning person all of my life, I'm no longer able to get out of bed in the morning. I used to be up at 5am, full of energy. Now I hate the thought of setting foot to floor before 9 or 10 or later, if not feeling well. Then another rest in the afternoon. And then I might start to finally feel human after dinner. Which is when we are all together as a family, so I'll take that.

Got to go. Cleaning lady is taking over the house.

Driving, birthdays and wrinkles

Had some excitement on the weekend. OK, well, almost had some..

Rob and I were on our way to his mom's 65th birthday party on Saturday night, him driving a few kms above the speed limit, as per usual. Hey, we live rurally. If you can't take advantage of almost empty rural winding roads, what can you take advantage of? Besides, he is a good driver, and really enjoys it. Anyway, on one straight stretch he pulled out to pass a car that was going a little too slow (ok, the speed limit), but when he looked over to pull back into our lane, noticed that the other car had sped up and wasn't going to allow him to pass. With a blind corner coming up rapidly and another car coming up behind us, there wasn't much other to do than to speed up to get away from the idiot driving the other car. We managed to get back in our lane before the corner, but we were going fast. Rob told me to hang on, because there was a lot of water on the corner (it's been raining here for 2 months now) and he thought the guy behind us was trying to run us off the road. I looked back and noticed that the headlights had disappeared, so we stopped holding our breath and drove on. We figured that he couldn't have gone in the ditch or we would have seen the headlights going all over the place, so he must have pulled over.

We didn't know at the time that he had tried to cut the blind corner to get closer to us. Instead, he hit head on a van that was coming from the opposite direction. We didn't know, because we were well past the corner at that point and he hit them just at the beginning of the corner. He hit friends of my mom's that were on their way in to watch the Santa Claus parade with my mom and Robbie (her partner) and our girls. Robbie managed to be the second car on the scene, because he was also on the way into town to meet my mom, who was already with the girls. Robbie is a retired cop, so he sussed the scene quickly and had fire, police and ambulance dispatched. In the meantime, the driver of the car phoned his mom and asked her to come to the scene and say that she had been driving. Luckily Robbie was there to say otherwise.. Turns out the driver has a police record a mile long and was driving with a suspended license and no insurance.

While at the party, we noticed the flashing red lights, so Rob had phoned a friend to listen to the police scanner to find out what was happening. In the meantime, another friend heard that friends were involved and phoned another friend, who in turn phoned someone else, who in turn tracked Rob down at the farm, so we knew what was going on before the guy with the police scanner even phoned back.

Ok, I know I mentioned before that we live in a rural community, but in case you haven't figured it out, it's pretty close knit. I've lived in this community for 28 years, but I'm still "from away". If that gives you any indication. I'm accepted, as everyone eventually becomes a fixture and a character in the community as a whole, but they never forget that you weren't born and raised. However, I did marry one of the born and raised, so I'm in.

So the girls missed the Santa Claus parade, mom drove to the hospital behind the ambulance. Everyone is ok, but bruised and sore. Tammy's (passenger in the other car) seatbelt came undone in the crash and she was flung about pretty good.

We told Robbie that it was most likely the same driver that had tried to force us into the ditch. At first he warned us not to say anything because the police might try to blame Rob for trying to race with the other car. But once Robbie heard that the driver of the other car gave a statement that a truck passed him and splashed oil on him, which made him cut the corner. Where did he get the oil from? So Robbie asked that Rob give the police a statement, which he did. It was water that was splashed on the car, but only after he tried to run us down.

In the end, the other driver was charged with reckless driving and driving while prohibited and something else to do with trying to get his mom say she was driving. Wonder how he was going to explain her car parked close by. But then, he doesn't seem like NASA material.

The rest of the weekend was uneventful. Rob's sister and her husband and his dad were up from NYC for the birthday party, and kept the girls well entertained. They've offered to take the girls for a few days over the winter. They live just 40 minutes north of NYC, in a beautiful little valley area that looks like cottage country in Georgian Bay. There's a great swimming reservoir nearby, parks within walking distance, a small river that runs through their backyard and a small ski hill for winter entertainment. The girls loved their week long visit in the summer, I'm sure they'd enjoy a week of skiing and tobaganning. And we might enjoy the week off too.

Molly (the 3-year-old) looked at me today and asked why my eyes had cracks. I told her that I was getting older and they were wrinkles. Apparently she equates old with death.. she threw her arms around my neck and sobbed that she didn't want me to go yet, I was her favourite mommy. ~s~ I told her that I was her only mommy, and that I wasn't going anywhere, that cracks were something that everyone gets after they have children. Then I went and looked in the mirror.

I didn't think I had that many wrinkles. Until today. Tomorrow, I switch moisturizers.

She also brought me a wooden spoon and said, "Mommy, dese are dust (just) for soup, not spanking little kids bums, right?"

What do you say to that? I just hugged her and said of course not, baby, then gave her a big hug and kissed the top of the curls. God, I love those curls.

Guess one of the grandparents must've been frustrated one day and reverted back to the old wooden spoon threat of my childhood. I'll have to talk to mom about that. I know it's just a threat, but it seems to have weighed heavy on Molly's mind.

Back to my coffee and the chocolate bar that Rob so nicely brought me back after curling.

Such a boring Canadian sport, eh?

It really was a good weekend..

Thanks again for the comments. It is a boost to know that I am not the only one out here.

So. Last weekend went really well. Lots of red wine and red wine enthusiasts. Except me, of course. I'm a wine philistine. One drink and I'd be under the table. Or maybe on top of it.. Anyway, I just stuck to the cranberry and soda water. Good time was had by all, both at the banquet on Friday and again at our house on Saturday night. Prime rib dinner with all the trimmings and Grand Marnier Creme Brulee for dessert. Anyone want to come for dinner?

It took me a few days to recover. I felt bad when I was still looking at the dirty wine glasses that wouldnt fit in the dishwasher on Tuesday. So, Tuesday night at around 1 am I finally had an energy breakthrough and cleaned the kitchen top to bottom, then moved on to the china cabinets and cleaned them out. I was on a streak until 3:30 am, then I crashed. Couldn't sleep because of the pain, got some extra get up and go because of the painkillers. I also had a good talk with the edge of the abyss that night. Anyone else have their regular battles with the darkness? The antidepressants helped for a while, but when the pain keeps at you non-stop, the darkness creeps back, no matter what the dose of the happy pill. That option of stepping over the edge is always just at the back of my mind. Intellectually I couldn't do it to husband and kids, but in the middle of incredible pain, you can't help but wish it would all just go away.

I guess it's like that for many out there. It just takes a bit of strength to get through the bad parts. As long as I know that the pain will get better in a bit, I can get through.

I had a call yesterday from the MS Clinic in town. I'd asked my Dr. to refer me again so I could talk to the neurologist about some new Rx for fatigue and pain that I'd read about. Actually, I tried to make the appointment myself a couple of weeks ago, as I'd always done in the past. It's been around 4 years since I was last there because no new or weird symptoms have shown up for me and my GP is pretty good at managing the day to day stuff. Anyway, I was told when I phoned that they were not taking any new patients, but that I could probably get in with a referral from my GP since I am a past patient. Can you imagine an MS Clinic that isn't taking any new patients? Well, the referral worked, because I now have an appointment.. for next March. Seriously.

And I had phoned the local MS Society to see about joining a support group. I haven't been in one since before the girls were born. I did for a while, but then just got on with life and didn't see the need for it. Now I do.. and the MS Society say they have NO groups in this area. So, what is the purpose of their office, then?

Seriously. Again. I'm just so underwhelmed by the caring.

I called in sick to work today. The fatigue did hit me hard this week (which is why I'd like to see someone about it). If I could find a way to manage it, working would be a snap. I enjoy it. I like the people I work with. I just find it hard to drag through a 10 hour shift when my body is screaming for sleep. And I look fine, so it must be hard for the others to understand, even though they seem to get it. They look at me funny if I am limping by the end of the day and ask what I've done to myself. Well.. nothing. I usually just answer that I'm old and stiff. Smile and carry on.

Regularly I don't whine this much, but since it's possible that I'm the only one that will read these, I can let loose with whatever is on my mind.

On another track, I haven't started Christmas shopping yet. I made lists last night of everyone that I need to do something for. That started a wee bit o' panic, but I'll get over it. Fortunately, I have the world's best recipe for fudge and flavoured sugars, and those make the best hostess/neighbour gifts for all those that show up around the holidays with gifts. Rob and I plan to go shopping next Saturday night after I'm done working. Send the kids to Grandma's for the night again and we'll have dinner and hit some stores. Hopefully with his help I can get most of it done that night. And we've decided just to do stockings for each other this year, to simplify things. Really, anything that we want we can get for ourselves anyway. I just hope he sticks to his promise.

Off to search for interesting gift ideas.

Another week almost over

Thanks for the comments about work/stay home struggle. This week I only have 2 days of work since I managed to switch off weekends with another coworker. I made it in an hour late today. Fortunately I have a good manager who OK's the occasional late morning when I'm having pain. The days that I wake up with pain that is out of control, I can usually take breakthrough meds and lie down for an hour or so, then get up and function. It's better than taking the whole day off and it's great that they see it that way too.

Nice to have sympathetic management. Or is it they are just desperate for staff..

Does anyone else out there have pain as a main symptom? I have pererpheral neuropathy in my right arm/hand that feels like I'm being stabbed, hacked to bits, ground up in a meat grinder, slammed in a car door and stung by millions of bees. Add in the occasional stab to the breast and back and you have a pretty good picture of how I spend my day.

My husband and I used to call the pains gremlins that were mining for gold in my arm. Not anymore. That was back when the pain was young and small. Now its much bigger than that. I worry about how much pain meds I'll be on by the time I'm 40. Now, I'm already on the max dose of gabapentin combined with 105 mg of MS Contin. Plus an antidepressant. I'm not sure which one it is now, I've been through a few of them, the side effects were problematic, so the doc kept changing them around. Now I've forgotten which one I stuck with.

On a lighter note, the parking attendant at work yesterday asked me if I'd just had my hair done. He thought I had a glamourous new hairdo and complemented it enthusiastically. Which is also out of the ordinary, as he is not usually the flirtatious type. The truth, I had only combed it. ~s~ My hair is pretty curly, so I normally just fluff it up with my fingers as I dry it, and running my fingers through it on the odd occasion is the closest it comes to being combed. Yesterday I thought it looked unusually messy, so comb met hair. With apparently good results. Guess I should do that more often.

Tonight I'm going to a fundraising banquet for Ducks Unlimited. My husband is a volunteer for them, has been since he was 15. He even worked for them as a salaried fundraisor for a while, but found that 3 years of desk work and constant travel between volunteer groups all over the province was too much. And who could blame him.. After the girls were born, I was so happy that the travel was done. Anyway, back to the original thought. So I'm going to the dinner tonight with a few other friends that always buy tickets to keep me company. Rob will be working, so I'd be by myself otherwise. And Saturday night we have our yearly dinner/party with the houseguests that come for the banquet plus some assorted others. Its always fun, but has required two weeks of preparation on my part. Well, only because all the things that "normal" people could accomplish in a day or two takes me two weeks between naps. Sucks, but it's a fact of life. I deal. So, one day a trip to the store, another day laundry, another day organizing this that or the other. I think we are almost ready. Except for cat litter. Damn, just remembered that. Poor cat needs its litter changed. Tomorrow. That's a good job for tomorrow. Did I mention that Rob is an amazing cook and does almost all of the cooking and definitely all of the entertaining cooking? His spreads are incredible. That is why the yearly party is becoming so popular. No one wants to miss out.

The girls are staying with my in-laws at the farm tonight and then are being handed over to my mother tomorrow for the night. Imagine, an adult weekend! I'll miss them. Maybe.

Fortunate to have in-laws and parents around the corner from each other. Yup, my husband and I grew up as neighbours. Rural neighbours, even. That, of course, means that you know everybody and their business, unlike city neighbours. At least I can say that we didn't date when we were younger or anything quite that sad. We didn't date until after I was finished university in another city (Guelph) and he came back from a year away in Whitehorse (Yukon Territory).

Not sure where I was going with that. Better get back to work anyway.

More next week. After I've recovered.

Rain, rain, go away, Come again some other day.

Seriously, this rain has got to stop at some point. There are pools of water lying in the fields now. My backyard is starting to look like a swamp...

Anyway. I managed to drag my butt into work again this morning, but really, how much longer am I going to be able to do this? After working my 4 days in a row last week, I was so bagged that my mother took little Molly Monday and Wednesday and I had arranged for her to go the the sitter's on Tuesday (which turned out to be my only day with any energy this week - doh!). I guess I need to really take a look at what is more important - do I need to get out of the house and work to keep myself active and my mind working, or do I need to rest so that I give my family the best of me, not the workplace.

I enjoy working. It makes me feel useful and busy. I just don't like the after affects of too many 10 hour shifts in a row. I can't cut down the amount of time I work without losing .74 status and losing my benefits. The all important benefits. I can't even imagine what the meds would cost if I was paying full price. As it is, since my husband gave up his office job to work for himself (contracting/construction), I lost his benefit package and mine only covers 80%. It used to be full coverage, which was wonderful. I still have to pay more than $300/month. Imagine full price..

Not that I should complain. I'm lucky to have what I do have. Which is why I'm worried about losing it. I asked HR to send me info on LTD, but I haven't received it yet. I'm curious to find out what percentage of my income I'd lose on LTD and if my benefits stay the same. I know that the day when I can't manage it any longer might not be too far off. As it is, I've had two medical leaves this year for a couple of months, and sick days that probably drive them nuts. They are well aware of my disease, and I work for a very supportive employer within the health care system.

I'm not sure where I was going with this. My mind is wandering all over hell and back today. I should probably do some work, eh?

Can you tell I'm Canadian? Eh?

Feelin' all right

What an amazing good day I'm having today! Aside from the rain, that is, but since it's rained more days the last two months than it hasn't, I'm getting used to it.

Anyway. Back to the good day stuff. It's been a while since I had one. My most prevalent MS symptoms have been neuropathic pain and extreme fatigue. Not so easy to work part-time and parent a 3 and 5 year-old, but I have an amazing spouse. I work two days a week one week, four the next. I'm just off my 4 day week and it normally takes me the 3 days that I have in between to recover, but today is only day 2 and I'm up and about and actually cleaning. Well, more like destroying then putting each room back. Why is it that cleaning requires making a bigger mess than when you started?

I don't clean much any more. I have a cleaning lady that comes every other week, so my job is just to keep things tidy in-between. I clean the kitchen and bathroom, but try to avoid everything else. Vacuuming (which I tend to take on when I'm having a good day - like today) will have me lying in bed with back spasms the next day. Guess I've learned to prioritize. ~s~

Anyway, I'm motivated because we are having houseguests next weekend, so I'm trying to clean out the guest room/laundry room. Yup, I'm putting the guests in with the laundry. Hell, that's nothing. Both my girls used it as a nursery when they were babies. We only had the one bedroom and the laundry, so when the first kid came along, we curtained off the laundry stuff, and made the rest of the room into a nursery. When the second came along, we converted the garage into a playroom, foyer and bedroom for the girls. They both share the bedroom now.

Anyway. Back to the good day. My 5 year-old is in school and the 3 year old is at the babysitters'. Every now and then I send her to the sitters on my day off to get some rest. Today I didn't seem to need it, so I'm puttering. Could be that my mom had her yesterday and I slept most of the day away. I'm lucky to have my mother and mother-in-law close by - they are huge help with the girls when I'm fatigued. I even have my 80-something grandparents right upstairs in a pinch. We have a duplex, and my grandparents are our tenants. Perfect all around.

I guess I'd better get some things finished, because I'd like to go do some shopping before my body shuts down. And I know it will. If I go straight through without a nap of some sort, I'll crash right around dinner time. And I'd like to spend some time with my family, so I'll try to fit a rest in there somewhere.

Got to go. Interestingly, I see that there are a lot of bloggers with MS. I have a lot of reading to do. I'd love to find out how other people are coping with their symptoms.

Short but sweet

My first posting will be short. I'm at work so I have the phone ringing often. However, I will try to be a good girl and keep this up at home. Until now, I've been a faithful storyteller only to a friend on email. Now I'm letting it all hang out.

Good for me.

More later.