Fitness plan modification!

Just a quick post to say that already on Day 2 of the fitness plan, I have decided to make a slight modification and add a “Stage 0”; unsurprisingly, going from being virtually house-bound to walking a half mile every day is something my body’s just not putting up with. If I didn’t have the lupus to think about, then yes, it would simply be a case of pushing it, but alas, it doesn’t work like that when your body’s systems malfunction. πŸ˜› So instead of giving up, I am simply introducing this stage before I move onto the planned Stage 1, and this stage comprises exactly the same as Stage 1, just doing it on alternate days rather than every day. And when this becomes easier, then I can move on and do it every day. Unfortunately it means I’ve missed volunteering today; I may have been able to make it for a short time, but I have to travel to Glasgow tomorrow to see one of my doctors, and I know that going from struggling from one outing a week even here in Perth to three days in a row of activity would not work.

Being disabled and having a progressive chronic illness means life consists a lot of finding accommodations and modifications that work for you. Instead of feeling disappointed that I’ve already changed the plan to make it easier, I’m more confident that I will be able to work up as planned. Coming to terms with one’s disability means a lot of learning not to continue convincing yourself that there is some way to manage plans that deep down you know you either can’t manage or must work up to. I came to terms with the fact that I can’t pursue my dream career in forensic pathology and it’s made it a lot easier to find a new plan rather than say to myself that there is some way I’ll manage… And I know that while getting “fit” means I’m never going to be able to run or become Superman, by doing things based on my own experience and limits I will be able to find a plan that works for me – and I won’t feel guilty for having to modify things and ask for accommodations. Being disabled means we can’t base our abilities and limits on a non-disabled default.

“Fitness plan” for lupus

My appointment yesterday with my occupational therapist went really well! Usually I go to her and feel that I disappoint her because of how little progress I’ve made since the last appointment; she never gives that impression, at all, but I feel guilty nonetheless.

I finished uni in about June 2012, so it’s been nearly two years since I moved back to my small hometown, living with my parents. Soon a year off molds into the next one, and I’ve made no progress career-wise. As my health has gotten worse, too, I have felt how I’ve ground to a halt, and for a long time have been trying to pick myself up out of it. Both my occupational therapist and psychologist told me I aim too high, by coming in and saying “I need to sort out my entire life”, or that my current goals are things like “Tidy the whole bedroom, organize all my things, sort out a course, go back to uni”. Too much. And then inevitably I stretch myself too thin and have to take such a break that things tend to relapse again, particularly the state of my bedroom!

More recently I have been learning to accept that it’s o.k. for me to say no to things, to take breaks, not push too hard, and look after “number one”; however, this can be hard to balance with my stubbornness to push myself too hard. Also because I have been off uni for so long, my “base level” of activity has decreased a lot, and this means that the smallest tasks can feel like such a big deal for me. I have long known that I need to increase my basal activity level in order to build some stamina – to get “fit” by lupus standards, which isn’t much by “normal” standards, but hey! Being disabled has its own level. πŸ™‚

Having decided to go back to school this year or next year, I acknowledge I’m going to have to increase my fitness quite a bit from what I’m managing now (which is barely able to get out more than once a week, if even) to getting out most days, walking around campus. This time the occupational therapist, Jill, and I worked out a more explicit plan, which combined with the mini-goals I write here will hopefully be better for motivating me. It’s kind of based on the “Couch to 5K” system, which you can find more about here. As the name suggests, it’s a plan to get beginners from the couch to being able to run five kilometers through weekly stages, which you repeat until you find it fairly easy and comfortable before moving on.

Now, I’m not ever going to be able to run 5K, but my plan should still allow me to build significant fitness on a personal level. We defined each part of my plan as “weeks” like the Couch to 5K, but “stages” is probably more appropriate. The key is to choose relatively small things, a few of them, things that you can slowly build up over stages. If I suddenly aim to get up, get showered and dressed and into town every day, I can tell you that is never going to happen! Also, I know from experience that trying to meet too many goals only works in the short-term, as my body permits. So along with the five mini-goals each week, here is the outline of my fitness plan so far:

Stage 1:

  • 5 reps of my two core exercises for physiotherapy, once a day
  • Walk to the shop near my house, which is about a 0.4 mi walk all round according to Google Maps, once a day
  • Volunteer in my charity shop, once a week (I’m scheduled on Wednesdays) – on Wednesdays there is no obligation to do the other tasks, as it’s already such a venture

Stage 2:

  • Continue the walk to the shop each day
  • Continue the volunteering once a week
  • Increase my physio from Stage 1 to doing 5 reps twice a day.
  • Shower at least twice a week (I tend to shy away from showering if I have nothing scheduled because it’s so strenuous despite having a seat in there; I feel kind of sad I have to put this as a goal, but, hey I do wash!)

We had said to do Week 3 the same when we still labeled them “weeks”, but the general idea is to repeat these stages each week until it gets easier and I feel comfortable moving on. I have written on the sheet of paper “IF I FAIL ONE DAY –> DO IT THE NEXT DAY!” (Jill didn’t even like the negativity of me using the word “fail”, which is a good point!) This is the advice I give friends on many subjects, particularly self-harm and addiction, and for self-harm I follow it myself; I don’t count how long it’s been since I have not harmed, so that each time I do relapse, I simply tell myself “Tomorrow is another day”, and try not to beat myself up too much for ruining a long stretch. As with anything, you only really fail when you stop trying, so no matter if I miss days, or I do relapse with self-harming, or whatever issue is at hand, I must simply continue on the next day. One of my favorite adages is a Japanese proverb: “Fall down seven times, stand up eight.”

Hopefully as Stage 2 becomes easier for me, then I can make some more increases. The key is to go slowly. I shy away from doing my physio every day because there is so much of it that I feel I’d be doing nothing else all day; but hopefully by getting used to a higher basal level of activity, doing the core work will be more normal for me, and adding in something else will feel like a small extra rather than both of them feeling extra as they would if I started doing the whole lot now every day. I hope to add my physio slowly, move up to volunteering twice a week (as I volunteer at another store but don’t often get there as I give the first priority), maybe extending the daily walk, for example. I’m still going to get tired, I’m still going to be in pain, and I’m still going to have to use my walking sticks, but I think life will be a bit more manageable with this higher basal level of fitness, and it means that I won’t so much have to take days off surrounding scheduled events, have to save up all my errands for one day and then pay for it for days afterward. And importantly, I hope it means that I will manage if I do get back to school. πŸ™‚

Colonoscopy results

Well, I feel like I’ve gone through a lot of torment, having not eaten since Friday evening (it’s 5pm on Monday now), and not to get the magic answer to my issue! But that’s life with a systemic disease for you. The test itself wasn’t too bad; it was a sigmoidoscopy rather than full colonoscopy, and it certainly was nowhere near as bad as having a gastroenteroscopy as I did a few years ago!

In the test nothing much was found, which is good and bad: good of course because nothing major is going on, and bad because then I don’t get an answer to the issues that prompted the test! We were hoping it’s just inflammation due to the lupus. Because of all the color issues in the stool, liver involvement is possible, so that’ll probably be the next track to take. All they diagnosed today was confirming internal hemorrhoids, which are thankfully only Grade 1.

The actual test, as I said, wasn’t too bad; it was mostly a lot of waiting in the department. I was told I might be in there for up to four hours, but I managed to get out in half that time. The test itself was only about 10-15 minutes long. There was some pain as the scope turned corners of the bowel, but it wasn’t too unbearable and each wave passed fairly quickly. I could see the images on the screen, although fairly blurry because I didn’t have my glasses on, which was cool. As both an anatomist and a chronic illness patient, I find it all very fascinating; when my surgical wound opened and my bowel came through last year, I thought it was very interesting and fascinating, albeit somewhat worrying!

By the time I was waiting before the test, my blood pressure had dropped quite low, and I was feeling pretty ill by now, especially because my sinus tachycardia has been flaring quite badly for a few days. (I always warn nurses as they take my blood pressure, as they inevitably think I’m very anxious.) I began to hallucinate a chair moving across the floor, haha – it didn’t even have wheels! They offered me to stay at the end for tea or coffee, but I was just eager to get home and eat! And I’m glad to say I enjoyed a mince pie (a meat pie, not the Christmas treat :P) for my dinner!

It was definitely worth having the test anyway, as it’s invaluable to know that your bowel is healthy or not. So many bowel issues go undiagnosed because people are embarrassed or play down symptoms to themselves, but doctors really have seen just about anything. Having been on the other side of a clinical setting as well as a patient, I can honestly say that you shouldn’t be embarrassed; but even if you are, your health is worth more, and also that people will generally need more invasive care if they leave symptoms unchecked and they develop into something more.

Colonoscopy prep., part 2

(Somewhat TMI!)

To be honest, this isn’t much of a part 2, as the purgative has not been as bad as people had me think! Personally I thought having an enema was a lot worse, but then this was after a week of not going to the toilet and after two surgeries, and my bowel had come through the wound, as I mentioned in the last post. Anyway, while it has been generally unpleasant, I’ve had bathroom trips nearly as bad without purgatives, with my IBS, haha. The biggest surprise is that I haven’t been doubled over with cramps like with the enema; mainly it’s just been the churning feeling and a bit of nipping, but not anything near the cramps I suffer anyway. A few people on my support group said it’d be like Niagara Falls, and indeed it’s been somewhat like peeing from the backside, haha! So really it hasn’t been too bad, and still the hunger has been the tough part to deal with (especially as I have to smell everyone’s food cooking and my niece is still teasing me!). I’m counting down to 6pm tomorrow as the likely latest time I can eat (26.5 hours!), and I can’t wait to stuff my face! Fingers crossed now that the results are good.

This week’s bite-size goals (6 – 12 April)

1. Translate from/to a new combination of languages for lyrics. (Because I am learning so many languages, there is a possible 156 combinations! I’ve done at least one translation in 27 of them, though I don’t think I’ll be doing something like Finnish–>Slovenian any time soon!)

2. Work on my novel.

3. Write some entries to Lang 8 in my languages.

4. Work on gesture drawings on

5. Choose a recipe to try and buy in ingredients.

Goal review (30 March – 5 April)

Wow, nothing much happened for me this week. However, I did go out on Wednesday (woohoo!) and wore myself out for the next few days; I was at the dentist, and so took the opportunity to drop books off at the library and did a bit of volunteering as I’ve only been to each store once this year. This meant I wasn’t amazingly productive for the few days after that, and certainly not yesterday as I was dealing with the hunger of a liquid diet. So most of these were not achieved!

1. Work on planning more explicitly for any of my forthcoming novel projects.
If I remove “explicitly” then sure! But the point was to commit more to paper, which I didn’t get around to doing unfortunately. At least things still percolate around my head; that’s still some level of progress!

2. Transfer miscellaneous bags of yarn to the new box my sister bought me.
Not much to say here; it didn’t happen!

3. Work on finishing the Family vocabulary sheets for my folder.
The only ones I had left were to finish the Swedish sheet and write the Finnish one; I did neither! But I did do some translation on which I haven’t done for a while, including a German–>Swedish and an English–>Finnish so at least I did something of those languages.

4. Phone the library about a job opportunity (I need to confirm if it’s closed) and pick up an application for a local supermarket.
I didn’t call the library, but I asked while I was in there and the woman I spoke to thought yes, it was closed, as they were interviewing that week. I haven’t been to the supermarket yet, but Mum and my twin forgot to pick up a form when they were there, so I’m thinking that one’s closed too!

5. Work on any translation project.
I worked on Italian a little early in the week, but lately was focusing my translation less on my book projects and more on lyrics.

Colonoscopy prep., part 1

I was going to say “here comes the TMI train” but I already resolved that there’s no such concept as TMI on this blog! Plus, the real “TMI” is reserved for the next blog post when the purgative kicks in, haha!

So my colonoscopy is tomorrow, and on top of the prep day that involves taking the purgative/laxative and going on a liquid diet, I added in an extra day of the liquid diet because my guts move so slowly; when I had a gastroenteroscopy years back before my lupus diagnosis, they refused to believe that I had stopped eating when I was told to as there was still food in my stomach. This is the second day, so I’m currently waiting for the purgative to take effect.

At least today I’ll have a massive distraction from the hunger! I get angry when I can’t eat, haha, (I get “hangry”!) so all day yesterday I’ve been despairing, especially when my sister was eating, or when she called me from work asking if I wanted lunch brought it! I simply wailed “I CAN’T EAAAATTT!” My six-year-old niece was also very cruel, waving a chocolate bar in my face and being very amused by the thoughts of cameras going up my butt!

I’m already sick of chicken noodle soup (without noodles, of course!), jelly, and pear drops (especially because I can’t eat the red colored ones due to the coloring!). The hypoglycemia has been the hardest thing to cope with, particularly as I had a bad tachycardic attack the day before with some fluttering, so it has all contributed basically to me feeling very nauseous all day. By the end of the day when my stomach wasn’t rumbling so often, I actually felt that it hadn’t been too hard to do; at least I could eat at all, and I thought if I could survive at least a week on hospital food, I’d be fine for another day. Frustratingly, I haven’t really been able to sleep off the hunger, as today I had to be up at 8am to take the purgative (it’s 8.45 now) and tomorrow, although the appointment is at 3pm, I have to go to the hospital earlier in the day to see my occupational therapist!

It occurred to me fairly recently that although I’ve had gut issues for a long time with the lupus, I wonder if the recent issues have had any cause from my abdominal surgeries in October; the first surgery was planned, but the wound opened up when I went home, and after a few days had widened enough so that my bowel was coming out, so I went back in for emergency surgery. They examined the exposed bowel, but luckily I didn’t need any removed, which I was relieved to find out when I came round! I don’t really think it has anything to do with it, but of course I’ll mention it tomorrow.

I’ll probably check in when this purgative kicks in, wailing, haha. I’m nervous because most people I’ve spoken to say it’s worse than an enema. Saying that, going to the toilet can be enough of an event for me without any extra ingredients, so we’ll see! In any case, it’ll be worth it, even if nothing is identified. It never hurts to have the bowel checked out! I simply can’t wait until around 6pm tomorrow when it’s all over and I can stuff my face!