Wednesday, October 12, 2011

CFS rears its ugly head

Just over 3 weeks until the wedding and I finally realized that I have been going through a relapse of chronic fatigue syndrome, the worst I have had in a few years. This was probably triggered by the chaotic move in May and I just can't seem to shake it. It is bad this time and I am just hoping I can manage the wedding okay.

For those of you who don't have chronic fatigue syndrome, it isn't treatable and is just a miserable state of being. I sleep 15 hours a day and am still so exhausted that I am pretty much on bedrest the rest of the time. I do manage to spend the time in an easy chair instead of a bed, but you get the idea. Just the thought of doing anything is exhausting and actually doing it can knock the wind out of you making it difficult to get through the rest of the day. Showering is more of a luxury than anything else and I depend on my partner for meal preparation most of the time. Exercise makes things worse, so it really comes down to trying to balance how much energy you have to expend so you don't overdo it and make things worse.

I do try to knit a bit some nights, and I cross stitch when I can. This typical type A personality just can't seem to sit and vegitate in front of the t.v. all the time :) I have had episodes that go on typically for months and then I start feeling better. That is, as long as I remember to rest during the episode and let my body get its energy resources back.

Thankfully, I have a very good friend planning the wedding for me, so that stress isn't an issue. The only thing I need to do is get my dress hemmed and pick up some shoes. I can't believe that it seemed like yesterday that November 5th felt so far away, and now it is just around the corner. Yikes!

Wednesday, August 3, 2011

New beginnings

It has been a busy few months along with a fibro flare up because of the humidity we have been getting. I have finally found a moment of sanity to sit and write.

I am please to announce that I am getting married again, after living 21 years on my own with just the kids. This is going to be the last time I get married, so hopefully all will be well :)

On a not so positive note I am still recovering from the move from h*ll. Never again will I allow my fiance to pack! I never realized how organized I was until this move where he did most of the packing. We moved mid-May and I am still digging out from under, although the end is finally in sight now. In a way, the disorganized move was good because I have had to confront a lot of things and issues to do with my abusive son, who I left three years ago. He was emotionally abusive and put me into a situation where I had to give up my knitting machines, he locked me out of the house after I left (which was illegal), and he destroyed most of my stash. I was so heartbroken at the time that I just shoved things aside until a later time when I felt I was more able to deal with things.

So now the time has come and I have been putting the past to rest. I have had to come to terms with not only the fact that half of my stash is missing, but also that I have gained quite a bit of weight on the new medication and that isn't likely to go away in a hurry. I used to buy a sweater's worth of yarn at a time, but when I got my yarn from the house I found that instead of two bags, I would only have one, and this went on for most of my yarns. I think touching my stash was the biggest heartbreak I could have suffered.

So I have been going through and looking for smaller projects to use up the smaller quantities of yarn. And I am in the process of replacing my two favourite machines - a Passap E6000 and a Brother 970. And I am starting out on a new leg of my life journey with a new partner. For the first time in a long time I feel at peace. I am happy with who I am and what I have accomplished. It has taken me three years to come to this point but that is the last of my baggage, unpacked and organized.

Sunday, June 5, 2011

Talk to the Hand!

This post has been a while coming. I started it a month or so ago and wanted to let it sit before actually posting. I had to see if I was just overreacting or if this truly bothered me. And it bothers me so here is the post.

I am not sure why it is that people feel they have the right to give medical advice or that I even want it from a layperson. I mean, I am the one that has been suffering from the fibromyalgia and sleep disorder for a long time. I am university educated and have done an enormous amount of research on my own, trying to come up with new and more effective ways to deal with this. It is complicated and although I know people are well meaning, I have no interest in hearing their opinions on the various types of health care professionals that I should seek out. Firstly, I am on a pension and don't have the funds for alternative treatments. And secondly, there is no scientific evidence that these treatments work. I do take a number of supplements that have been shown to help sleep quality, but after all this time, just leave me be. As well meaning as the intention might be, it isn't helpful nor worth my precious energy.

Wednesday, April 13, 2011

I don't do mornings

I saw this saying on a tee shirt and realized that it is such an expression of my life now. I have written a lot about the positive aspects of Remeron, but failed to talk about some of the not so good things. I have gained a lot of weight and now have borderline hypertension. I am hoping that a change in diet and exercise will help these, but time will tell.

And now, I just don't do mornings! I sleep almost 12 hours straight. I go to bed by 11:30 and get up between 11 and 11:30 the next morning. Straight through except for a pee break or two. In fact, from the time I go to bed until my first pee break, I don't even move! Now this is unheard of for me, who used to have the bed torn apart within a few hours. Now my bed stays nicely made, with one or two turnings getting towards wake up time and that is all.

So of course, I don't do mornings. I can't change the sleep schedule. It won't shift ahead and well, it is unthinkable that I should try and shorten it. After 15 years my drug induced naps have cut out and sleeping this long at night is the price I pay for that. Is it worth it? Definitely. My quality of life, although still limited, is 100% better than it was 2 years ago. I just start my days later and work at home on my machines at night.

I guess the one thing that I have figured out through all of this is that everything comes at a price. I lose my mornings to get some quality of sleep and that is something I have to live with. I think the saddest part is the ridicule from the people who haven't walked in my shoes. If I hear one more time that "it must be nice ...." I think I might choke someone:) Long gone are the days where I was up at four and dropping into bed at ten. Also long gone is any sense that I have control over my body. It controls me now, dictating what I can and cannot do, when I sleep and for how long. It was so hard for me to accept this lack of control, but I have to say, it has been a lot better emotionally for me now that I have.

Tuesday, April 12, 2011

Dakota hard at work

I realized that it has probably been close to a year since I posted pictures of Dakota. Here he is, a year and 2 and a half months old. He has been working by my side for close to a year and has made such a wonderful difference in my life. I truly could not imagine life without him.

Thursday, April 7, 2011

Spring is coming and head to head with local businesses

It isn't quite here yet, but spring is coming and with it comes more outings with Dakota. I love spring and summer. I have more energy and am in less pain which means I get out more. And of course, Kota loves it because he just loves to work!

Yesterday we went out and stopped at a local shop that sells second hand items. I was stopped rudely at the door with a "Please don't bring that dog in here!". I calmly told the owner that Kota is a service dog and the Human Rights Code gives me permission to bring him everywhere with me. I got a dirty look from the owner as he rushed his two huge dogs into a back room! His reason was that his dogs would go crazy if Kota was in the store. I am pleased to say that Kota behaved well despite the smell of the other dogs and the close scrutiny of the owner :)

Another business owner of a Mac's Milk franchise also gives me a hard time. I ended up complaining to the mayor and now the owner just leans over the counter to make sure Kota doesn't touch any of the food. Now that spring is here I will be frequenting that store more often and loving exercising my rights :) In all honesty I do have to say that people have been very good for the most part, with just a few thrown in to keep me on my toes.

Saturday, April 2, 2011

Life is good

It has been a while since I posted. I am finally more busy with life things and have less fibromyalgia and sleep deprivation interference:) After  having spent 15 years a prisoner of my body, confined to a bed or wheelchair  the Remeron continues to make an improvement in my quality of life.I doubt that I will ever be able to function at the level I used to, but I am thankful that after a year, this medication is still causing changes in my life. My drug forced naps cut out about 2 months ago. Even with the medications I couldn't nap, so for the first time in 15 years I no longer have an afternoon nap. This was a big adjustment for me and I have had to take things slow to make sure that I am still getting the quality of sleep that I need.

Dakota went for his first restaurant trip yesterday and as usual, he was great. He did try to crawl under the table to stop a drunk from getting too close to me, but he made no attempt to  scrounge for scraps under the table or nearby. Some people didn't even know I had brought him in with me and I was impressed with his behaviour. Of course he got extra treats and was quite pleased with himself :)

Today we did WalMart again. This is only his second time there and itwas busy! I have to leave him walking on his own because I can't push  the cart with one hand and hold him at a tight heel. He did well with two exceptions.
One young guy deliberately enticed him to misbehave by waving his hand in front of Dakota's nose, despite the vest and badges Kota wears. Another time he had to sniff a baby's toes :) He loved babies for some reason so I have to keep  tight control there. He even did well when an older child came running  at him yelling "puppy!" . I kept Kota checked and calmly ased the child not to touch him and that he was working. Overall, not a bad outing at all and does Kota ever love to work! He gets excited when he thinks I am going out, works his heart out, and comes home pooped.

Kota never ceases to amaze me. He is truly a gift from God.

Thursday, February 3, 2011

Dakota's trip to the hairdresser

I usually keep my hair short. Really short. I get what is called a razor cut where the hairdresser uses a straight razor to cut and thin my hair. I have been putting off getting my hair cut for a while. A long while actually - since early last summer. I was finally driven to getting it cut by, of all things, hot flashes. Yep, it is getting to be that time of life and when the hot flashes come my hair literally looks like I just got out of the shower. Not bad if it is short, but shoulder length thick hair takes forever to dry. In fact I timed it and it dries just in time for the next hot flash!

So a haircut was necessary and the next big question was whether or not to take Dakota. He has pretty much been by my side for the last 6 months and I couldn't imagine being without him. But the thought of a straight razor near my face and a dog that suddenly decided to act up in a new place caused some hesitance on my part. I wavered back and forth and then decided to take the plunge and take him. I figured at worst, I would end up with half a head of cut hair and I could just say it was the newest hairstyle :)

But of course Dakota surprised me again. We had one initial episode where he jumped  on someone while I was getting my hair washed, but settled down after that and was wonderful. Everyone at the salon marveled at how well behaved he was, how patient, and they couldn't believe he was owner trained. He definitely got extra treats when we got home and lots of praise. I am so glad I started working with dogs as a kid and I am proud of Kota and his never ending supply of great behaviour in public.

Wednesday, January 26, 2011

Learning to live again

It has been a while and the new medication continues to bring changes to my life. I realized in the last few weeks that I am learning to live again and it isn't always an easy thing. I literally had everything ripped out from under me. I was so exhausted all the time that I had great difficulty keeping appointments (my first priority) and any kind of schedule was out of the question. Simple things like showering were non-existent. I did it when I physically could, but showers were maybe once or twice a month unless I had an aide to help me. I remember being in tears because this type A personality wasn't used to not getting things done. Coming to terms with this fact was not only very hard, but very heartbreaking and it took away a lot of my self-esteem.

I have been struggling with learning to live again. After being bedridden for 10 years, in a wheelchair, and feeling totally humiliated because this body wouldn't do what I wanted it to do, I guess I gave up, thinking things would never get better. I was tired of trying a new medication, feeling the hope if I felt a bit better, only to have it dashed after a few months. I have spent a good part of the past year waiting for the inevitable crash that always came. But it hasn't.

I was stuck between the old way and a new way and I finally realized that I needed to give myself permission to move forward. The routines, which I gave up on and came to hate, are now beginning to be a part of my life again. I still remember the devastation that not being able to perform simple routines brought me, and I am trying to heal from that and move forward. I am being cautiously optimistic now, but it feels good.

My knitting has also changed. Hand knitting kept me going for all those years. It made me feel productive, like I could still contribute to society even if it was in a small way. Now I have been spending every night at my knitting machines, enjoying them like I never have before. I put on an audio book and just knit away. My concentration has definitely improved and I am loving it. Here is a sock that I have been refining for the standard gauge knitting machine.
machine knit sock with Eye of Partridge heel and shaped arch 
I had abandoned my knitting needles for the past six months. They brought back too many bad memories. I hadn't realized how sick I was until now and I now know why my children are angry with me. The severe sleep deprivation made me prone to emotional outbursts. I couldn't remember conversations that we had had that morning. And I couldn't be counted on to follow through on things, even though I wanted to. Fifteen years of this is enough to drive anyone to their limit. I existed, but I didn't live.

So in an attempt to get my needles clicking again, I pulled out the yarn and pattern for Round Trip, from Knitters72. I have wanted to make this for a long time and actually started it once but it ended up languishing like so many of my knitting attempts.I couldn't follow through and finish an item and ended up just giving up. But I am enjoying working on this now and think that I will be able to actually finish it. What a change for me!