Optician’s

Phew, it’s been an active day today, but I feel pretty good about getting out. I had an appointment at the optician’s first of all; I saw a new optician today who was really nice! It wasn’t for the eyesight test, but to check my eyes because I’m taking hydroxychloroquine. Basically it’s looking at the back of the eye in particular for signs of retinopathy and damage to the macula. Last time the optician said I was borderline for Sjögren’s syndrome, but this time the new one said the previous one had written that I do have Sjögren’s in the notes. I’ll have to talk to the rheumatologist in June and see if it’s a set diagnosis for me. I do have diagnosis of Meibomian gland dysfunction but I guess I’ll see for Sjögren’s; anyway, the good news is that the tear strip test was better than last time, and my retina looks good. The dye test, to check tear drainage, wasn’t too bad either. She said that the sensation of my vision field suddenly shifting is probably due to the tear film suddenly breaking up, so it’s thankfully not a vision problem. The peripheral vision test was also good.

While I waited for my sister to finish work, I went to the barber for a haircut and then pottered around the bookstore for a bit. We were going to go to lunch but she bumped into a colleague and ended up chatting for over an hour! I didn’t mind though, as we went for lunch after, where Mum picked us up to go to the new bargain store in town. I used the trolley to lean, but still was very glad to get off my feet! Before I met up with my sister actually, I just popped into one of the stores I volunteer in, but I haven’t made it in barely at all since my surgeries last year as I’m prioritizing the other one at the moment. The manager was glad to hear from me and how I’m doing and I assured her that I do plan to get back at some point!

The weather’s getting very warm, and I think that’ll make it easier for me to get out and about more; although being in the sun is supposed to be bad for those with lupus, I fare so much better in summer than in winter, partly because of how painful my bones get in the cold and partly for mood. The bargain store is looking for workers, so I’m going to try to apply there for a checkout position, and the local council is also looking to fill various positions so both my sister and I are going to see about that; she currently works in retail and wants a less hectic job than the one she’s got, where she is rushing around all day in a department store. I would like to make a bit more money for the plans of getting back to Glasgow, but also to have a motivation to get out more and actually see some of the nice weather!

This week’s bite-size goals (27 April – 3 May)

1. A repeat from last week that I failed to do: sort through clothes and choose which to donate.

2. Work on coding the template for the “Family” lessons on my language blog.

3. Solve requests on LyricsTranslate.com to reach 100; I had 10 to go but as I did one today, I have 9 from the time of writing this post.

4. Translate my current little blurb text into more of my languages for practice in writing in them. (I’ve done German, Russian, Italian, and French for this one.)

5. Work on my novel.

Goal review (20-26 April)

Well, this week was a write-off! 😛 I only completed one goal, which was number 2. I completed a Czech and a Swedish translation. For number 1, I forgot to take note, but anyway I think I only worked on my Polish project. Ah, well, I have been not very well this week, and hopefully I’m better at the coming week’s goals.

1. Work on three separate translation projects.

2. Work on lyrics translations to bring X–>English up to at least 5 each. (Dutch: 2 remaining, Czech: 4; Slovenian: 3; Swedish: 2; Latin: 5. All other languages have more than 5 complete.)

3. Register for PIP! And also phone my doctor in Glasgow to rearrange an appointment that I missed, and so I can meet up with a friend! 🙂 (And cry when I see how much I miss living there!)

4. Work on music theory.

5. Sort through some clothes and donate those unwanted to make space.

Checking in!

Whew, I’m going through quite a flare just now, which is partly why I still haven’t been very active on social networks, etc. Nothing too dramatically new has been going on – in my health nor life in general – but I just wanted to check in here. On Fiverr, I got a fairly long-term transcription order from a client, so I’ve been working on that along with my usual work on languages and translation, etc. One thing I have been neglecting, however, is my language blog (polyglotscot.wordpress.com if anyone is interested) as I do my actual learning on paper or offline on my computer with the translation projects, or practice via websites like Lang-8 or Vocaber; I hope to work on putting up some more articles and vocabulary lists there especially as the blog recently hit 1000 views. Yay!

As I massively overdid things last Wednesday, I took a week or so off from the fitness plan to recover–it wasn’t an intention to stay off for so long, but I simply hadn’t fully recovered by the Wednesday after! Unfortunately, it meant I had saved up quite a lot of errands for the one day which would have probably meant a repeat of massively overdoing; however, I didn’t even have the strength for this, and I only made two stops: the dentist and then just up the road to the library.

Happily I did manage to go grocery shopping; I think I’ve seriously only managed to get to supermarkets fewer than five times in this whole year as it’s just too taxing. So I used a store wheelchair that you can hook the cart onto, and ohhh, it was soooo much easier! We have been considering getting me a wheelchair for a fair amount of time now, especially as my sister and I had planned to go down to England for a short trip and we wanted to ensure I would manage. So today we’ve ordered quite a lightweight travel chair that I can propel myself, and I’m quite excited.

There is a mental block in moving up from unaided walking to sticks to wheelchairs, for sure. I remember how weird I felt when I was only using my sticks for the worst days. There was a kind of self-consciousness if my family saw me. This year I’ve been pretty much using them full-time, so I’m used to the idea, although some days I still think “bloody hell, I’m only 23 and using these full-time, when I was managing a lot better barely two years ago at uni, and things are only likely to get worse as the lupus progresses”. But in general, I have to not dwell on prognoses, the possibility of becoming very seriously ill as things progress, the possibility of dying. I think I’ve found a happy medium of not dwelling so much on these issues yet still acknowledging everything to a certain point, because staying in denial is just as unhelpful. And life has been much easier since being more able to admit when I need help, that I do need the sticks, that I need the wheelchair, etc.

(Incidentally as an aside: my sister handed in an application to the store with mine at the same time, and she got a call for interview barely half an hour later! I haven’t heard back, so I assume nothing’s going to come from it. I will keep looking for low hour part-time positions, and also to get more substantial options for loans etc. for going back to uni.)

I’m hoping things improve soon for me. From using the sticks so much, my upper body joints are very bad just now as well as the lower, and my sinuses are also playing up mightily. I’m getting even more intense headaches when I lie down. I’ve also fallen over more than usual recently. My balance is bad as it is, but the falls are just getting ridiculous! 😛 Yesterday it was quite bad, and one of those times where I’m half down before I even realize it. Luckily at home my sister’s there to try to catch me, haha. My cardiac symptoms are giving me that horrible fatigued feeling of “grayness” again, so I’ll probably be taking it easy for a bit.

I just want to throw in a special thank you to all the followers here. I value each one of you, whether you’re a lupus/chronic illness sufferer here for solidarity and information, or someone here to learn more about lupus in particular or chronic illness and disability in general. I reached 50 followers recently, which is just mindblowing to me! I know I often write a lot of crap, haha, and I still haven’t written the posts for my symptoms page to talk about each in more detail. At least with the goals pages, I know I’ll get on at least once a week and update in general! 🙂 I just value this space so much for myself as a space where I can write this stuff in detail, and not worry any more about whether people think it’s “bragging” or something. While I haven’t explicitly shared it on my FB – mainly because I have more vague acquaintances on there who don’t exactly need to know every little detail; it’s nice to preserve some semblance of normalcy, haha – I do share it frequently on Twitter, because I think it’s important for people to know just what we got through with extensive systemic diseases, with treatment from other people based on disability, the struggles that we go through related to chronic illness and disability but not a direct symptom of it, such as how we cope with it, how we relate to family and friends over it, etc. Thank you for reading!

This week’s bite-size goals (20-26 April)

1. Work on three separate translation projects.

2. Work on lyrics translations to bring X–>English up to at least 5 each. (Dutch: 2 remaining, Czech: 4; Slovenian: 3; Swedish: 2; Latin: 5. All other languages have more than 5 complete.)

3. Register for PIP! And also phone my doctor in Glasgow to rearrange an appointment that I missed, and so I can meet up with a friend! 🙂 (And cry when I see how much I miss living there!)

4. Work on music theory.

5. Sort through some clothes and donate those unwanted to make space.

Happy Easter — general update

As I mentioned in the goal review, I’ve been more or less not in too social a mood! 🙂 I haven’t really been checking FB, Twitter, or anything like that. I fairly regularly get to a point like this where even socializing online feels too much for me for a while. I’ve been spending my time mostly reading and working on languages. I’ve been happy to get out when I can, but using my sticks so often means my wrists and elbows in particular are getting worse, so I’m feeling like I can’t much win right now!

I have decided to apply for the degrees starting in 2015 to give myself time to sort everything out. In the meantime I hope to find a small job to get more used to getting out and about, and hopefully I can keep up the volunteering. I haven’t really decided what I want to do with my life yet, but I’m not worried too much about it just now; I do want to work in anatomy/clinical setting in some capacity, even if it’s just a small lab job. Perhaps translation is in my future (right now I don’t feel confident to take money for my work at all!). I do hope to publish my novels, but I know it’s not easy to reach the success where one can live off novels full-time! (Same goes for music, which I’m nowhere near in a position to put anything out anyway.) Maybe a mix of all these. I do some odd jobs on Fiverr, mainly transcribing and proofing, and I’m hoping to add e-book building to it soon; some people do manage to make their money full-time on it. I’m trying to remember too that life is not all about striving to an end goal; I’m trying to enjoy the ride even now and try not to worry too much about it, while keeping options open and having plans at least in a next couple of stages.

Happy Easter – unfortunately we didn’t do our family tradition of egg-rolling this year due to a continuing feud between two of my sisters, so it hasn’t felt the same. We didn’t even miss it on the year that Easter fell on my youngest sister’s birthday and my Dad was having surgery! I think my sisters did take their kids out and do something themselves. So it’s been a bit anticlimactic this year. Still, hopefully as the weather’s getting nicer, we will get out more, for barbecues etc. (I can’t believe that last year at Easter it was snowing here.)

It’s nice I seem to be treating this blog in part as I used to my Livejournal, for these disjointed entries on the not very exciting events of my life, haha.

Something else I’ve been considering lately is a fundraiser for lupus, probably Lupus UK. I was thinking that because Christmas 2015 marks my ten-year anniversary with the disease, by that point I would like to raise a certain amount of money, probably through an online page, which of course would rely more on promotion and the sharing of the link than anything else. I guess it just wouldn’t feel like I did a lot myself, but I can barely get out more than a couple times a week, and the funds would be the most important thing. 🙂 We’ll see. I’m investigating ideas that I could manage.

Goal review (13 – 19 April)

This is technically a day late as I didn’t really do much on the computer yesterday; in fact for a while I’ve only really switched on to listen to music and access my translation projects. I have felt rather “meh” for a while about interacting with the online world, so I’m still on a sort of break, just concentrating on my hobbies for the moment, and I’m sure I’ll get back on checking Twitter etc. in time, as usually happens eventually. The tendinitis in my right hand is flaring up anyway, making typing rather annoying just now!

1. Complete and actually make a record of each part of “Stage 0″ of my fitness plan, i.e. walking to and from the nearby shop each second day, completing one set of my core physio every day, and volunteer once a week. (In the run-up so far, I’ve just been doing as much as I can, but not necessarily taking a record.)
I did well in the first half of the week, when I did my walks, kept up to date on my pills, and went volunteering; alas, the day volunteering on Wednesday was strenuous enough that I’m still recovering! I’m hoping tomorrow to get a walk in before volunteering again on the Wednesday, on which I also have the dentist. Progress is slower than I hoped, and it doesn’t help that the occupational therapist has moved my appointment forward by a few weeks; in any case, I’m just trying to keep it up as much as I can, trying to remember that it’s not just a means to some end goal, but to remember that any level of fitness I can achieve is an improvement to my life.

2. Work on my novel – I have to get this one in every week, haha!
I didn’t get much done, but it was something! More time was spent on reading to confirm details for an upcoming scene.

3. Make the phone calls I need to, i.e. register for PIP (disability benefit) application, make an appointment at the optician’s, and cancel this “free trial” thing for my mum before they take a payment!
I made the phone call to cancel the free trial – although it was meant to be a local UK number, I seem to have reached a women in the US so we’re not looking forward to the next phone bill! I went in person to make the optician’s appointment, and still didn’t register for PIP yet.

4. Finish and hand in job applications for part-time jobs. (I’ll post about it separately.)
My sister handed in the applications today – and she herself got a phone call for interview merely half an hour later! I’m still hoping to hear back myself but will keep a look out for other low hour jobs.

5. Work on any translation project.
I really went for it a few days ago and did 1500 words of Russian in one day as I was approaching the end of the short story I was working on, one of the longest in the book. I also did a bit of Polish which is a lot slower going!

Part-time job

As I mentioned a few posts back, I’m seriously considering going back to school for my Masters. I think it’s more likely to be in 2015 to give me time to work everything out. Getting my fitness up is also part of it. But in the meantime, I want to work even a little, and while job searching found two at a clothes shop here that are very few hours; one is at customer service for four hours a week, and one working in the cash office for eight hours a week. They don’t ask for any experience with the cash office one, so I don’t think it can hurt too much to apply to both? (I have the service experience from volunteering.) I was just unsure because both positions are with the same company; I wouldn’t take both, because I wouldn’t manage. I don’t know whether it will hurt my chances to apply for both. Anyway, I don’t think I’ll find another job with so few hours as the four-hour one. I was also considering applying for one and waiting to see if I hear back, risking the other being taken. Ideally I’d earn money from home – I am on Fiverr.com but not earning enough yet. We’ll see what happens with the clothing store!

This week’s bite-size goals (13 – 19 April)

1. Complete and actually make a record of each part of “Stage 0” of my fitness plan, i.e. walking to and from the nearby shop each second day, completing one set of my core physio every day, and volunteer once a week. (In the run-up so far, I’ve just been doing as much as I can, but not necessarily taking a record.)

2. Work on my novel – I have to get this one in every week, haha!

3. Make the phone calls I need to, i.e. register for PIP (disability benefit) application, make an appointment at the optician’s, and cancel this “free trial” thing for my mum before they take a payment!

4. Finish and hand in job applications for part-time jobs. (I’ll post about it separately.)

5. Work on any translation project.

Goal review (6 – 12 April)

Already it’s another Sunday! I try not to find myself discouraged, even though I still haven’t had a week where I easily managed all the goals. I’ve also had to pull back the fitness plan to a “Stage 0” as I mentioned last time, so it’d be easy for me to think this is never going to work! But giving up and going to square one would be worse than the little bit I’m managing, even if it isn’t as much as I’d hoped. I have to learn that although, yes, I am stubborn, I can’t make things happen just by wanting them to – I have to let my body catch up. 🙂 I always believed in the “little and often” approach!

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!)
Happily I did this even though I had used up most of the “easier” combinations! I did an English to Dutch text, and also a Russian to Finnish for new combinations; on top of that I did some others, such as Italian to English, German to Russian, German to English. I do translate books as well, but having a set of lyrics to translate is also good for various reasons; being able to finish quickly and get feedback online from native speakers; to sometimes discover new music; and to feel good in helping people with their requests.

2. Work on my novel.
I didn’t do much, but I did it! I always freeze up toward the end of my novels, for some reason. I think I’m just afraid to let my beloveds go! I’m just over 170,000 words at the moment, and should finish up at the most in the next 30K, and more probably closer to 15K. My first novel needs a lot of work to finalize it, as I started at 18 or 19, but this one I’m almost 100% happy with the way it is. It’s so important to me.

3. Write some entries to Lang 8 in my languages.
I wrote a little blurb mainly about family, and chickening out somewhat, I posted it first in German with few issues before finding the courage to post it in Italian. Hopefully in the next week or so I can work through the other languages for this piece. I sometimes wonder why I learn so many, thinking how good would I be if I just focused on a few! I sacrificed French when I was learning German, with the result of being reasonably fluent only in one foreign language, but I can’t bring myself to abandon some for others; I have to force myself not to take on new ones as it is!

4. Work on gesture drawings on Quickposes.com
I didn’t get round to this as I just never felt like drawing. I don’t really get round to drawing very often, least of all because it’s physically exhausting after filling in large areas of tone and so on! I bought watercolor pencils recently so I’m hoping soon to venture into color. Again, I would love in a way to devote myself to art and become more proficient, but as it stands, it’s just a side hobby. 🙂

5. Choose a recipe to try and buy in ingredients.
This is another I didn’t go, mainly because I never got to a store this week! My sister has recipes collected though, and she will buy in some ingredients when she goes shopping. I’m probably going to choose a nice dessert too, even if it’s just more sponge cakes!