Thursday, November 30, 2006

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.

Friday, November 24, 2006

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.

Thursday, November 16, 2006

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?

Tuesday, November 14, 2006

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.

Sunday, November 12, 2006

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.