With a risk of being repetitive – I love to be able to enjoy all things in life again. Not being in the hospital rocks! Getting to eat food rocks! Being able to move around rocks! I have never appreciated being healthy this much before. I feel very grateful.
But I feel a bit scared that it will all be taken away again soon, so I feel like *I had better enjoy it when I can*. I also know that it will be very hard for me to motivate myself to go back on the cortisone again. I would have to be feverish and seriously ill (we are talking ill enough to risk emergency surgery here) to want to do that. I hate that drug.
I know myself well enough to know that I would be very hesitant to contact my doctor about a flare-up if I knew that it meant another seven weeks on high doses of cortisone. I’d rather end up in the emergency room and have a hospital stay every second year than treat myself with these doses several times a year if that is what it comes down to. I couldn’t even cook, much less drive or work or in any way function semi-normally until the dose came down to below 15 mg/day.
At the same time I know that I need to do what is safe and take care of my body. I just doubt that being a shaky mess who feels like crap several times a year is a way to live. I am going up to see my doctors on Monday and I need to talk to them about this. I really, really hope they have something else to say to me than basically to “suck it up, this will be your life from now on”.
25 November 2007
23 November 2007
Sugar addict
My name is Jenny and I am a sugar addict. Admitting it is the first step to recovery, I have heard.
My “drug of choice” is sugar. Any other stimulant I can think of I can do without, but a world without ice cream, chocolate and caramel seems empty and barren to me.
Nicotine – Although I once liked it I quit years ago. And I’d never start again. Ever.
Alcohol – Nah, it just makes me dizzy and tired.
Caffeine – Nah again, I prefer de-caffeinated or I’ll stick to tea. I don’t need the jittery buzz.
Illicit substances – Nah, anything that should be smoked will make me cough. And the other stuff I’d be too scared to even try. I don’t trust bathtub pharmacists.
But put me next to the candy bars in the supermarket when grocery shopping on low blood sugar before dinner and I’ll literally start shaking. I’ll salivate and fantasize about ripping the bags open and just shove the lovely, sugary stuff into my mouth. Being the well-behaved adult that I am I will not do that, but I can definitely emphasize with the kid throwing tantrums in the line next to me.
When I talked with the dietician at the hospital she mentioned that many patients with UC and Crohns eat large amounts of sugar because it is easy to absorb, even when your intestine is irritated and your uptake is lowered. If I wasn’t so pale from not eating for a week I would have blushed. She calculated that I needed about 3000-3500 kcal/day with my marathon training at the time. For healthy people it is fine to have 500-1000 of those as what she called “discretionary calories” from ice cream and candy since you get all the nutrients from the rest of your food and you need extra carbs to fuel the running. I’d live by that. At least twice a week I’d down more than 300g (~3/4 lb) mixed candies and most night a couple of brownies and a bowl of ice cream. But it turns out that large amounts of sugar are not good for people with inflammatory bowel diseases. It may provide you with the calories you so desperately need but it also worsens the inflammation and causes over growth of the wrong kind of intestinal bacteria. I hung my head in shame. And swore to better myself.
But damn, it is hard. I will probably never be satisfied with just one piece of chocolate. But I can at least try to not eat the whole bar every day of the week. So from now on we have set some rules. We can have a normal sized treat every day, like a cinnamon roll or an ice cream sandwich or a couple of cookies. But the huge candy bowls are reserved for Saturdays. The first week was a real struggle but now I am doing better. I still need Emil to hide any leftover candy or I’d devour it when he wasn’t looking, but I am not shaking with want anymore.
I don’t know if it is the lower mileage and the fact that I don’t need as many calories every day now, but I am not craving sugar as much when I eat less of it.
I am not sure what will happen when I run 50-60 mpw again, though. Will I be able to resist it then too? I don’t know. I guess it is “one day at a time”, right?
My “drug of choice” is sugar. Any other stimulant I can think of I can do without, but a world without ice cream, chocolate and caramel seems empty and barren to me.
Nicotine – Although I once liked it I quit years ago. And I’d never start again. Ever.
Alcohol – Nah, it just makes me dizzy and tired.
Caffeine – Nah again, I prefer de-caffeinated or I’ll stick to tea. I don’t need the jittery buzz.
Illicit substances – Nah, anything that should be smoked will make me cough. And the other stuff I’d be too scared to even try. I don’t trust bathtub pharmacists.
But put me next to the candy bars in the supermarket when grocery shopping on low blood sugar before dinner and I’ll literally start shaking. I’ll salivate and fantasize about ripping the bags open and just shove the lovely, sugary stuff into my mouth. Being the well-behaved adult that I am I will not do that, but I can definitely emphasize with the kid throwing tantrums in the line next to me.
When I talked with the dietician at the hospital she mentioned that many patients with UC and Crohns eat large amounts of sugar because it is easy to absorb, even when your intestine is irritated and your uptake is lowered. If I wasn’t so pale from not eating for a week I would have blushed. She calculated that I needed about 3000-3500 kcal/day with my marathon training at the time. For healthy people it is fine to have 500-1000 of those as what she called “discretionary calories” from ice cream and candy since you get all the nutrients from the rest of your food and you need extra carbs to fuel the running. I’d live by that. At least twice a week I’d down more than 300g (~3/4 lb) mixed candies and most night a couple of brownies and a bowl of ice cream. But it turns out that large amounts of sugar are not good for people with inflammatory bowel diseases. It may provide you with the calories you so desperately need but it also worsens the inflammation and causes over growth of the wrong kind of intestinal bacteria. I hung my head in shame. And swore to better myself.
But damn, it is hard. I will probably never be satisfied with just one piece of chocolate. But I can at least try to not eat the whole bar every day of the week. So from now on we have set some rules. We can have a normal sized treat every day, like a cinnamon roll or an ice cream sandwich or a couple of cookies. But the huge candy bowls are reserved for Saturdays. The first week was a real struggle but now I am doing better. I still need Emil to hide any leftover candy or I’d devour it when he wasn’t looking, but I am not shaking with want anymore.
I don’t know if it is the lower mileage and the fact that I don’t need as many calories every day now, but I am not craving sugar as much when I eat less of it.
I am not sure what will happen when I run 50-60 mpw again, though. Will I be able to resist it then too? I don’t know. I guess it is “one day at a time”, right?
20 November 2007
More like myself
I still feel like I am starting to recognize myself again. My face is less puffy as the Prednisolon dose is tapered down. The water weight has dropped too, so the shape of my body feels more familiar to me. My legs look more like the legs of a runner again, although they are still thinner than they use to be. But that is because I am still a bit thinner all over.
Most days I head out to the park for a jog or a wog. My legs want to run like I used to run, but I watch my heart rate (HR) very carefully since I am still on cortisone and I don’t want to overdo it. I based my training on HR before too, so the principle of alternating hard and easy days based on my HR is the same, just that my pace is slower now. I have days when I can barely break into a jog before I have to take a walking break to bring down my HR, and then there are other days when I can slow jog 5-6 miles without a problem. And whenever I trot down the road to the park I feel grateful, because in my tights and my running shoes and my new cute red jacket I feel like the person I was before the diagnosis and the hospital visit. I don’t feel like a sick person, I feel like *me*.
Of course I sometimes worry about how much time I have until the next flare-up. Will it be three months or until the summer? Or do I have a year or even more? But there is no point in trying to plan for what I cannot predict. I’ll cross that river when I get to it.
Most days I head out to the park for a jog or a wog. My legs want to run like I used to run, but I watch my heart rate (HR) very carefully since I am still on cortisone and I don’t want to overdo it. I based my training on HR before too, so the principle of alternating hard and easy days based on my HR is the same, just that my pace is slower now. I have days when I can barely break into a jog before I have to take a walking break to bring down my HR, and then there are other days when I can slow jog 5-6 miles without a problem. And whenever I trot down the road to the park I feel grateful, because in my tights and my running shoes and my new cute red jacket I feel like the person I was before the diagnosis and the hospital visit. I don’t feel like a sick person, I feel like *me*.
Of course I sometimes worry about how much time I have until the next flare-up. Will it be three months or until the summer? Or do I have a year or even more? But there is no point in trying to plan for what I cannot predict. I’ll cross that river when I get to it.
11 November 2007
Reclaiming my life
After pouring out all my uncensored inner darkness in the last couple of post, the last days have been much better. I have been sleeping more, which makes me feel more awake and energetic during the day. I feel more like myself. I am still very tired and nowhere near my old energy levels yet, but I feel like I am gradually reclaiming my life.
Wogging is a huge part of that. When I get my tights and running shoes on and head out to the park I feel like the Jenny I used to be. Most days I can probably walk was fast as I wog, but the bouncy movement of jogging makes me happy and relaxed in a way walking doesn’t do for me. On Friday we had a storm coming in from the North Sea and I headed out the door before it would hit us. It was already windy and soon it started to rain. It was a “bad weather” day but I couldn’t be happier. I jogged my old recovery-loop without taking walking breaks! My heart rate is way out there because of the cortisone and all the inactivity, so although I was slow as molasses it was like a tempo run for me, judging by HR. I rested yesterday and today I will get out there again for another wog or jog, depending on how I feel. Just being able to wog/jog/run again makes me so much happier and feels like a huge accomplishment. Wooho!
I have also been able to incorporate some new foods: lentils, pomegranates and oranges. This means that now I can eat almost anything I want again! I seem to be tolerating the new medication just fine so far, and today is the last day with three cortisone pills. Tomorrow I am down to just two pills, with only two more weeks on the cortisone!
I have regained a couple of pounds and I feel more at home in my body, at last. I am still much weaker than before and it will take a while to muscle up again, but I no longer feel like my body belongs to some other girl. It is my body, and I will take care of it and treat it well.
In general, I will treat myself with kindness. I will try to not be so hard on myself and so self-critical. I have been so hard on myself, looking down on myself for being weak and sad and almost feeling like less of a person because of his illness. I wouldn’t treat any other people that way, so why do it to me? I will work actively on not treating myself that way either.
Now it is time to head out for my Sunday wog! The sun is shining and it is a bright, cold fall day. Later we plan on lunch at a cute Italian café and maybe a walk in the city. It is such a nice Sunday, and it makes me happy to be able to be out there enjoying it again!
Wogging is a huge part of that. When I get my tights and running shoes on and head out to the park I feel like the Jenny I used to be. Most days I can probably walk was fast as I wog, but the bouncy movement of jogging makes me happy and relaxed in a way walking doesn’t do for me. On Friday we had a storm coming in from the North Sea and I headed out the door before it would hit us. It was already windy and soon it started to rain. It was a “bad weather” day but I couldn’t be happier. I jogged my old recovery-loop without taking walking breaks! My heart rate is way out there because of the cortisone and all the inactivity, so although I was slow as molasses it was like a tempo run for me, judging by HR. I rested yesterday and today I will get out there again for another wog or jog, depending on how I feel. Just being able to wog/jog/run again makes me so much happier and feels like a huge accomplishment. Wooho!
I have also been able to incorporate some new foods: lentils, pomegranates and oranges. This means that now I can eat almost anything I want again! I seem to be tolerating the new medication just fine so far, and today is the last day with three cortisone pills. Tomorrow I am down to just two pills, with only two more weeks on the cortisone!
I have regained a couple of pounds and I feel more at home in my body, at last. I am still much weaker than before and it will take a while to muscle up again, but I no longer feel like my body belongs to some other girl. It is my body, and I will take care of it and treat it well.
In general, I will treat myself with kindness. I will try to not be so hard on myself and so self-critical. I have been so hard on myself, looking down on myself for being weak and sad and almost feeling like less of a person because of his illness. I wouldn’t treat any other people that way, so why do it to me? I will work actively on not treating myself that way either.
Now it is time to head out for my Sunday wog! The sun is shining and it is a bright, cold fall day. Later we plan on lunch at a cute Italian café and maybe a walk in the city. It is such a nice Sunday, and it makes me happy to be able to be out there enjoying it again!
06 November 2007
Tired, angry and full of chocolate
It s strange, how some days I am so tired and sad and having a really hard time with all of this, and other days I feel much better. I guess I am still healing, both mentally as well as physically. I feel very angry at times. Angry with the universe for making this happen to me. Angry with healthy people not taking care of themselves or complaining of “petty” stuff. Angry with my body for not healing faster or having more energy. Angry with myself for having all these dark, ugly feelings.
I had a couple of really tired days over the weekend, where I was just dragging to get through the day. I had trouble sleeping, so I was in that tired, sleep-walking stage all day. Once the cortisone kicks in after breakfast there is no chance of napping so I can’t catch up on sleep during the day.
The positive stuff:
1.) I still made it to the chocolate exhibition on Sunday and it was amazing! All the local chocolatiers were there and representatives from the best chocolate houses in Europe, introducing their finest chocolates. And you could taste it all! I had been looking forward to it so much, so I was kind of prepared to be disappointed, but I was pleasantly surprised instead. I tasted a lot of different kinds of chocolate and bought a lot. Good stuff is so expensive, though… I had better eat it slowly and savour every bite! :)
I bought:
Dark chocolate with cinnamon from L’Artigiano di Gardini. I love cinnamon *and* dark chocolate, so it was a big hit with me!
Dark chocolate with sea salt and a liquorice note from the same maker, which was excellent. It sounds strange, but apparently that is very trendy in the chocolate business right now!
I also got a couple of interesting flavors from Delfin that came in small (30g/~1 oz) tasting bars:
Milk chocolate w/ Konacha green tea from Japan
Milk chocolate w/ chai spices from India
Dark chocolate w/lavender from Provence
Milk chocolate w/green tea and jasmine from Marocco
(The chai one was amazing, and I also like the Moroccan one with jasmine a lot. I haven’t tasted the lavender one yet, maybe tonight.)
A pistachio-marsipan cigar with dark chocolate from Bräutigrams, a local chocolatier.
And six lovely truffles from Fröknarna Kanolds, another local chocolatier. I tried to be brave with the flavors and tried among others “Goat cheese and pine nut” and “Chilli and Saffron”. I am not a big fan of chilli fruits in chocolate, but the goat cheese worked, much to my surprise!
I am sitting here now, trying to *not* think about how I have all this delicious chocolate within reach…
2.) I got my hair cut yesterday and it looks nice. I am still not looking like myself, but I try to work with what I have…
3.) I am down another 5 mg on the daily cortisone dose this week.
I had a couple of really tired days over the weekend, where I was just dragging to get through the day. I had trouble sleeping, so I was in that tired, sleep-walking stage all day. Once the cortisone kicks in after breakfast there is no chance of napping so I can’t catch up on sleep during the day.
The positive stuff:
1.) I still made it to the chocolate exhibition on Sunday and it was amazing! All the local chocolatiers were there and representatives from the best chocolate houses in Europe, introducing their finest chocolates. And you could taste it all! I had been looking forward to it so much, so I was kind of prepared to be disappointed, but I was pleasantly surprised instead. I tasted a lot of different kinds of chocolate and bought a lot. Good stuff is so expensive, though… I had better eat it slowly and savour every bite! :)
I bought:
Dark chocolate with cinnamon from L’Artigiano di Gardini. I love cinnamon *and* dark chocolate, so it was a big hit with me!
Dark chocolate with sea salt and a liquorice note from the same maker, which was excellent. It sounds strange, but apparently that is very trendy in the chocolate business right now!
I also got a couple of interesting flavors from Delfin that came in small (30g/~1 oz) tasting bars:
Milk chocolate w/ Konacha green tea from Japan
Milk chocolate w/ chai spices from India
Dark chocolate w/lavender from Provence
Milk chocolate w/green tea and jasmine from Marocco
(The chai one was amazing, and I also like the Moroccan one with jasmine a lot. I haven’t tasted the lavender one yet, maybe tonight.)
A pistachio-marsipan cigar with dark chocolate from Bräutigrams, a local chocolatier.
And six lovely truffles from Fröknarna Kanolds, another local chocolatier. I tried to be brave with the flavors and tried among others “Goat cheese and pine nut” and “Chilli and Saffron”. I am not a big fan of chilli fruits in chocolate, but the goat cheese worked, much to my surprise!
I am sitting here now, trying to *not* think about how I have all this delicious chocolate within reach…
2.) I got my hair cut yesterday and it looks nice. I am still not looking like myself, but I try to work with what I have…
3.) I am down another 5 mg on the daily cortisone dose this week.
Baby Envy
We met up with our friends C and P and their baby Freja at a cafe. Freja is almost 12 weeks old and so cute that the entire café comes to a standstill when she giggles and waves her chubby arms. I watch Emil hold her and I can see how his face softens and his eyes almost glaze over with love for her. He wants a baby so badly.
We are at his parents’ house and they show us the latest pictures of Kärsti, the 16 day old baby of K and M, part of their extended family. She looks like a small alien with huge eyes and wrinkly skin. I don’t think they are very cute at that stage, but Emil does. Of course he does. He really, really wants one of his own. We haven’t visited K and M and baby Kärsti yet. I think we are avoiding it.
I wish I could give him a baby but I can’t.
This is the way I feel, in all its ugly honesty: If you are lucky enough to have functional intestines AND a baby I have no sympathy for your 16 hours in labour, your c-section or your lack of sleep. You have it all. Just shut up and count your blessings.
We are at his parents’ house and they show us the latest pictures of Kärsti, the 16 day old baby of K and M, part of their extended family. She looks like a small alien with huge eyes and wrinkly skin. I don’t think they are very cute at that stage, but Emil does. Of course he does. He really, really wants one of his own. We haven’t visited K and M and baby Kärsti yet. I think we are avoiding it.
I wish I could give him a baby but I can’t.
This is the way I feel, in all its ugly honesty: If you are lucky enough to have functional intestines AND a baby I have no sympathy for your 16 hours in labour, your c-section or your lack of sleep. You have it all. Just shut up and count your blessings.
Wogging
It is Thursday morning and I am feeling brave. I want to test my legs with just a little running. Or rather, walk-jogging or “Wogging”. Normally I detest the word “jogging”. I wasn’t a jogger, I was a runner. But at this time in my recovery I have to break away from all expectations of things being like they used to be. I can’t go out there after spending time in the hospital and while still on loads of medications and expect to *run* like I used to. I have to give myself room to explore what my body can do now without comparing it to what I used to be able to do. So at this time I am not running, or even jogging. I am wogging. And there is no performance goal and no pressure.
I am a bit scared as I tie on my running shoes for the first time in almost four weeks. It feels good to wear tights again. But I am nervous. What if I fall over? Or if I feel like crap and have to take a cab home from the park? Can I handle a failure?
The first few steps are wobbly. I am not sure my legs remember how to run. It feels very strange to be out there, jogging again. I alternate jogging very slowly with walking on my usual loop in the park. To others it might look like the most pathetic run ever, and when I am passed by old men with huge bellies I *am* a bit embarrassed. It is a humbling experience and I realize how much courage it takes to get out there if you are really out of shape. But at the same time I am almost bursting with joy. I have to wipe the tears off my face as I wog the final stretch under the bright, burning orange foliage. When I close the door to my apartment the tears are running down my face. Tears of joy. I did it. And what could have been the worst “run” of my life, performance wise, was instead the best “wog” of my life.
I am a bit scared as I tie on my running shoes for the first time in almost four weeks. It feels good to wear tights again. But I am nervous. What if I fall over? Or if I feel like crap and have to take a cab home from the park? Can I handle a failure?
The first few steps are wobbly. I am not sure my legs remember how to run. It feels very strange to be out there, jogging again. I alternate jogging very slowly with walking on my usual loop in the park. To others it might look like the most pathetic run ever, and when I am passed by old men with huge bellies I *am* a bit embarrassed. It is a humbling experience and I realize how much courage it takes to get out there if you are really out of shape. But at the same time I am almost bursting with joy. I have to wipe the tears off my face as I wog the final stretch under the bright, burning orange foliage. When I close the door to my apartment the tears are running down my face. Tears of joy. I did it. And what could have been the worst “run” of my life, performance wise, was instead the best “wog” of my life.
Subscribe to:
Posts (Atom)