It’s been an all-around tough week. First of all, it’s menstrual week, which is flaring up my endo adhesions. I have a hugely bloated stomach and sharp back pains which has been really cramping my style (pardon the pun). Not to mention the exhaustion that accompanies this lovely, fun week. Fortunately, I’m seeing my GYN this month and hopefully we can get some of these issues worked out – and I can go back to my regularly scheduled dose of pain and exhaustion. :P For whatever reason, along with the tiredness, I tend to get a dose of insomnia – or frequent waking when I do sleep. I’m not sure if it’s actual pain waking me up (sometimes when you’re in constant pain you don’t always register additional pain). The body and brain come up with the most interesting ways to cope.
I’ve been trying to get on the Wii Fit every day – to at least do something. I’ve managed to this week, and have done more strength training than anything else. The way the Wii Fit works is that it uses your body for resistance. I’ve found that my concentration is very bad and I’m tripping over my toes somewhat. It’s like those toes don’t respond to what I’m telling them to do. If there is any break in my concentration at all, I’ll trip and fall. I’m finding even the small exercises are challenging my mental abilities just as much as my physical ones. I blame it on the pain medication I’m on. Although I’m better than I was in the past, it’s still exhausting by the time I’m finished. My 10 minute session will take 1/2 hour of mental prep and up to 2 hours of rest and recovery afterwards.
The good news is that I am seeing some results. I made it up the stairs in our house one foot after the other today! Being one who always tries to push things, I tried to come down the stairs the same way, but only made it halfway. Oh well, I made it up and that’s what counts! I’m so happy! My knee is only a little bit sore, too. I’m definitely feeling stronger, so I will keep trying to work on it as I can.
I’ve been drinking my aloe vera juice twice per day, and I’m feeling really good. I feel like it’s helping my digestive system (as anyone who has been taking painkillers will know, they can mess you up horribly). My skin is feeling smoother, too. I will keep at it.
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I’ve been really exhausted the past couple of days. I’m adjusting a couple of my minor medications, but that shouldn’t really make me this tired. I napped on Saturday afternoon, Sunday afternoon and all day today. In fact, today I could barely pull myself off the bed. I did get up and do my Wii Fit, hoping it would inspire me, but no such luck.
I had a good talk via text with my sister the other night. She is concerned that I’m doing too much. I appreciate her concern. I can assure her that I’m only doing what I can on any given day and going with my pain. If my hip or my knee is aching, I may skip that day, but I still try to weigh in. If I’m only hurting a bit, I take my breakthrough pain medication and do a warm-up which is 3 minutes and see if that gets the kink out. The workout I’m doing is by no means strenuous, It’s very very low-key and doesn’t involve any jarring. The maximum I go is 10 minutes. What I’ve been enjoying the most is a light ‘step’ for 3 minutes (with the basic 1″ step for Wii Fit – it’s like walking backwards and forwards and then steps to the side) and then a boxing for 4 minutes (with a punch and putting one foot or the other forward) and then the 3-minute step again. I’ve been cleared by my doctor for 5 minutes on an elliptical machine, and I think this is much less strenuous, plus I’ve promised to stop when it hurts. I’m doing the actual exercises about 3 to 4 days a week. I’m adding in a couple of strength training exercises that add-on 2 minutes to try to strengthen my core muscles – as I’ve spent so much time in bed over the last 8 years or so that they are very weak.
Honestly, if I can do the 3 minute ‘step’ without breaking a sweat, after 8 years of being nearly bedridden and 5 months of being definitely so, it can’t be that strenuous! :D The boxing does tire me out, there’s a lot of arm swinging, and I have weak arms!
I hope my sister doesn’t worry too much. I know I don’t want to hurt myself and have to rest until I’m better. Best to take a day off here and there and not have to take a whole month off when something goes wrong, I think.
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Yesterday ended up being kind of a depressing day. I got up early to ride with my hubby to drop off the kids at day camp, and then we had an hour and a half to kill before my doctor’s appointment. We went for coffee, which was pleasant. I was sitting in the cafe watching the workers, and it made me really sad. I miss working. It takes so much for me to live my life and keep my days on track so I have something to give my kids. I just don’t know where I could fit a job in. I remember before my children were born, I would come home and go right to bed – I just needed that much rest and rejuvenation to keep going on a daily basis. I’m able to take 2-3 hour afternoon naps now. Those are so necessary to my well being – I don’t know if it’s the medication I’m on or what. Just watching the barista work, I wondered how long I would last standing up behind a counter. Would I even make it for 15 minutes before my back and hip were screaming for mercy? It made me a little wistful. I try to embrace the new status quo, but that doesn’t make the wishes for total normalcy and autonomy go away.
After my doctor’s visit, we stopped to pick up some groceries. It made things very clear as to why I don’t participate in this activity. Aside from the aches and pains, blah blah, I was glad to get in some movement, though. The store was very cold. Once I hit the freezer section my body was just in total spasm. It made me think of what’s to come when the weather turns. Things are all very sweet and I can seem to do so much more in the summer, but once the chill hits the air my body revolts and I have an even harder time with daily tasks. I much prefer to live in denial and have that a surprise every year. I hate to live with dread.
So, yesterday was kind of a dud, but I did get up this morning after a brief lie-in and do some time on the Wii Fit. I did some strength training and added an extra 2 minutes of aerobic activity to make up for it, but by the time I got to the extra time my toes were getting caught on the board. I think my legs were a bit tired. Ah, progress! I have made some. I used to have to sit down between activities and now I can stand for the full 10 minutes while I do things. That’s very good for me. I still have to be very slow and deliberate, and likely always will be, but I can live with that.
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As predicted, I woke up feeling absolutely horrible this morning. My back was hurting very much (which isn’t new, but it was worse than usual) and my knees were so stiff. I decided it would be wise to take a day off from trying to do any extra coordinated activity, and just spent my regular morning dropping off the kids at day camp and my trip to the store for a walk around and to pick up the extras that I’ve forgotten – there’s always something!
One thing common to all the doctors I’ve seen regarding my Endo is their belief in dietary changes to help manage the illness. One of the most prestigious doctors I saw was just amazing. He is a fabulous surgeon, and very dedicated to his work. His wife lives with Endo, and he is a major proponent of dietary measures to control symptoms. He is different, however, in that he tries each and every diet before recommending it. Now THAT’s dedication! The diet he was a fan of when I last saw him, before I needed an ob/gyn, was The Cancer Prevention Diet. This diet is fantastic, but I have an allergy to both fish and soy, so I had difficulty following it. We often clashed over whether diet was the answer. I found that dietary measures didn’t provide as much help as I needed, but I’ve certainly cut down on caffeine and tried to cut down on sugar (which is very, very difficult for me). My weight has been a major issue for about the past 14 years. Even when I was able to attend the gym regularly, before the birth of my children, and before my hip and back pain became too great to do regular workouts, I had trouble keeping my weight down. I’ve always been very careful about what I eat – I’m not a big eater at all. In fact, my kids started to eat more than I did per meal by the time they were four.
My diet looks a lot different these days. My hubby prepares my meals – I’m not able to stand long enough to prepare even a sandwich. I find it very difficult to get the items out of the cupboards and fridge as well – bending and lifting, even a bit, is right out of the question, still. I’m trying to cut down on salt. It’s amazing how much salt is in all of our food – in some of the strangest places! I’ve just started drinking aloe vera juice on a daily basis. I’ll keep you posted on how that goes. I’m eating 5 prunes a day to keep constipation at bay. To this end (pardon the pun) I also take a tablespoonful of PEG (Poly ethylene glycol) in my coffee every morning. Constipation is a constant worry with the amount of painkillers I take, so it’s something I have to work to prevent every day. Other than my morning coffee, I don’t drink any more caffeine-filled products, unless it’s as a treat, and I avoid pop unless it’s a special occasion. I do allow myself a daily treat – either Pocky or some chocolate covered licorice (yummier than it sounds) but try to not overdo it. The rest: whole grains, lean meats, chicken, and following Canada’s Food Guide is very basic. I’ve definitely improved over the past decade, but what’s made the most difference is banishing my period, and not changing my diet.
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I saw the doctor yesterday and heard the results of the pathology report from my gallbladder removal. There were ‘multiple stones’ which apparently means there were too many to count, and they range in size from 1 cm to 1 mm. There was some slight irritation around the neck of my bile duct, which means I have to see one more doc to ensure there’s nothing further they want to do about it.
I did some walking through Wal-Mart yesterday morning. I wore my pedometer and walked around for 45 minutes. When I got out of the store I checked the pedometer and it had registered 29 steps! I’m sure my pedometer is off now! My back was killing me and my knees were aching by the time I finished walking around. When I got home, I decided to do the Wii Fit and try to do some of the light, low impact aerobics to loosen up. It felt good, but I think I need a rest. I did a bit of the slow 1 person ‘run’ (which is actually a walk in place, or I move my hips from side to side on bad days) and I had the worst foot cramps. I’m drinking more water now just to try to avoid this.
I was speaking with the kids’ day camp director, and he swears by drinking 2 oz of aloe juice in water daily. I decided to try it, so on my morning stop at Wal-Mart (good gracious, I spend an awful lot of time there) I picked some up, but I also found this lovely aloe drink that has pieces of actual aloe pulp floating in it. It’s delicious. So, I’m giving that a try as well. We’ll see if that gives any benefit. I have horribly dry skin, and I’d love it if it would help.
Today I spent with the 3 minute aerobic ‘step’ workout (gee, it sounds so much grander than it is, actually, as I mentioned, it’s the 1″ step and just stepping on and off, I’m basically trying to not trip over my feet still ) and then did 4 minutes of strength training – all on the Wii Fit of course, and then another 3 minutes of the aerobics. I did see the ‘real’ step in the store today, it’s an actual 4-6″ step like they use in gyms. I’d love to be able to graduate to that. But first I have to be able to walk up and down stairs without stepping up and then bringing my other foot to the same step and then continuing like that. I have to walk up steps a) like a normal person and b) without my cane before I can graduate! At least I have a goal, though.
The way I’m feeling now – my knees are aching so bad, I have to put some analgesic cream on them, and my back and hip are just out of commission. I just want to go to sleep to escape the pain. I did sleep a good bit this afternoon. I think I need to take a day off and let my knees catch up with this new state of affairs. I may be pushing them too hard. I drank more water today and my feet weren’t cramping, which is good, but tomorrow looks like it might just be a rest day.
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I had a bit of a slow weekend. It was spent trying to recover my energy from what I presume was the Botox shots that had drained it. Since we had promised the kids a movie on Thursday, we were going to try both Saturday and Sunday to go, but I still wasn’t up to it – we had very disappointed kids, so we decided to take them today and keep them home one day from day camp. They thought this was a great idea. I tried to workout both Saturday and Sunday as well, but has lousy luck (although I probably shouldn’t blame luck in this, it was mostly my body). My legs just wouldn’t work – I swear I was asking them to go one place and they’d go another, I had foot cramps, I was tired, and I swear my whole body was pouting. I texted my sister last night – she is amazing and has lost about 70 lbs in the last year. She said that I should focus on what I do and not what I don’t accomplish. Even if I walk a sixteenth of a mile, I should celebrate the burning of those 12 calories and not berate myself for fatty eating too much cake. She is a wise, wise woman.
Anyhoo, I and the hubby took the kids to the movie today and planned to do some walking around the mall while we were at it. I gladly strapped on my pedometer to see how many steps I would get in, just to have an idea. Dr. Oz says we should aim for 10,000 steps per day – that’s not going to happen anytime soon, but I’d like to know just where I stand. (so to speak). We saw the movie, ate lunch and did some shopping. My back was killing me – and I mean I had to get someone to take off my shoes when we got home because I couldn’t bend over to do it. I’m so tired right now I can barely type. We left the house at 11:00 a.m. and left the mall at 4:45, granted we had some sitting time (and plenty of it) but we had to have walked for at least an hour in there somewhere, right? I peeled off my pedometer when we got home and found the number 219 on it. I’ve walked 219 steps today. How long do I have to go to do 10,000 steps? OMG, I don’t even want to think about it. The amount of breakthrough medication (ie, pain medication I have to take to bridge the gap between my regular dose and the pain I’m feeling when I’m active – endorsed by my doc of course, but within limits) I’d have to take is just frightening me.
I’m hoping something is wrong with my pedometer, and maybe I didn’t do it right. I’m going shopping again tomorrow as a precursor to the doctor’s appointment I have in the afternoon. I will skip the Wii Fit workout because I will have an active enough day to fill all my requirements for activity, but I’m going to be wearing that pedometer and maybe re-read the directions.
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My kids were home from day camp yesterday, due to overexposure to the sun the day before, so hubby and I decided to take them to the movies. I jumped in the shower (I was so thrilled – I couldn’t even take a simple bath on my own two months ago) but halfway through, I just started feeling overwhelmed. The thought of getting dressed, getting out, sitting through a whole movie and staying awake just seemed too daunting. I started to cry. I was so frustrated. Naturally, my husband came running (we very rarely have solo shower time in our house – the kids waltz in and out of that bathroom like they own the place, so I was busted.) I ended up lying down to see if a quick nap would help, and once again, slept away the afternoon.
Today I woke up early and was going to go shopping with my hubby, but just couldn’t get going. I was in a total physical and mental fog all day. I managed to squeeze in 10 minutes of slow Wii Fit exercise, but I barely worked up a sweat. I dragged myself back to bed. I had so many things I wanted to do today, but I spent the day reading magazines and watching TV. I just couldn’t motivate myself up for anything more. I finally fell asleep for a three hour nap around mid afternoon again. I wonder if it’s still the Botox, or if my body is begging for rest to repair itself. I guess we’ll really see next week. If this is continuing on to next week, I’ll start to worry, and maybe just push myself through it (although I’m due to visit my doc anyway, I may mention it). It’s really disappointing, I was enjoying having a bit more energy – I was able to go for about 2 or 3 hours before needing that rest, and 1 or 2 busy days before needing that rest day. My usual schedule was one day on and then one day off – One day to do things and one day to rest. I do have a history of pushing myself too hard, so maybe it’s no surprise that I’m expecting a bit too much once again. I’m so afraid of being lazy I’ll do anything to avoid it.
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