Happy Mother’s Day!

I just wanted to write about how happy I am at my mum’s progress with my disease and disability. It also happens to be Mother’s Day here in the UK, so it’s a perfect fit!

I don’t want to dwell on the negatives of the past, but like anyone whose family member has an incurable debilitating disease, my family has struggled with both the implications of my physical and mental illnesses. My mum hasn’t really been insidious about my physical struggles as such, but just misunderstanding, especially throughout the years without a diagnosis. More recently, the issue has been not taking lupus as seriously as it is, and so I’ve taken it upon myself to be more open about things with my family in a way that doesn’t feel like complaining to me.

This year I’ve been using my sticks virtually every time I’ve been out of the house (which hasn’t been often!), whereas before I did have more days where I’d manage without them. I find myself less conscious of them now and more able to say to my family that I can’t manage something. Before Mum would usually say “Why?”, “Why not?”, “But you managed before/yesterday etc.”, and now she will often just say “O.k.”, and acknowledge that I really can’t manage things a lot of the time. Although I will get the bus to and from town when I manage to go, often she will happily drop me off and pick me up, as she did for my work adviser interview, even though she had to come back only 20 minutes later! (The letter said it could last up to an hour, so we decided she shouldn’t wait!) She often runs errands for me or with me, making my doctor’s appointments if she’s there, picking up prescriptions, taking me to the library when I need to return books. I have guilt over this as well as a feeling of lack of independence, still relying on my mum at 23 years old and having managed to get around more while I was at uni, when I didn’t use sticks or anything.

I feel I can talk more about my conditions and how they affect me. I find it hard to talk about my mental illness and self-harming in detail with her, but I can talk more vaguely about my depression and that’s a relief to be able to do it. She would run me to my psychologist and pick me up, and she would ask me each time how I got on without pushing for details I didn’t want to give, and I began to be able to talk at least in vague terms of how the therapist was helping me. I told her about my worries about having high-functioning autism, and that the therapist agreed it was likely, and we spoke about many of my idiosyncrasies from youth in particular which would make sense with the diagnosis.

Last week when she picked me up from the adviser appointment, we did some errands. She makes sure I manage in the supermarkets, letting me push the trolley for support even before her hip replacement when she used it for support too. I can’t remember how the conversation came about, but I mentioned at some point that I saw an infographic that said the average age of death in lupus was 26; I didn’t do it to scare her, and assured her that the average was partly a result of those deaths before effective medication was found, and that with a diagnosis so young, treatment, and seeing a rheumatologist regularly, it is perfectly possible for me to have a normal lifespan, but it was the reminder that this disease can and often is fatal. I found I could openly mention that I am at the start of kidney damage and that kidney transplants are common in lupus patients – we often talk about how sister is all set to give me a kidney in the future, but I think Mum thinks it’s very hyperbolic – and that although this might be in my future, I can’t dwell so much on each prognosis like that, having various organ involvements already. We talked again about what causes it, and I think she has a lot of guilt because I inherited hypermobility from her which gives me a lot of issues, but also because the entire family was sick with the flu that triggered my lupus; everyone else recovered just fine.

Being a twin means that my sister and I were often seen as one package growing up, and more and more, even so late as 23, I see our family separating us. We are similar in many ways, and very close, but really so different too, as any two people, no matter how similar, will be. This issue of separation made it somewhat more awkward to deal with my illnesses in the first place, I think, for the rest of my family, and for a while I was guilted by them that my twin was taking so much on herself – although I wasn’t able to, we had all become so accustomed to my sister and I doing the same things, the same level of chores and errands, etc. People would often label us both with something that only applies to one of us, even on a basic level as getting my sister to fix computer-related issues even though she relies on me for that. On another level, even family members would not explicitly know what degrees we studied for even though they were so different. “Which one of you does the languages?” wasn’t a rare question! So although much of this is a twin issue, it made things difficult for me when I became disabled; however, I am thankful to my illness that they helped create this distinction even more between us.

Basically, Mum is just becoming a lot more aware of the issues around my disability in general (she herself was legally disabled with her hip arthritis, and now although she has it replaced, she has arthritis in other joints) and my conditions in particular. She used to say things like that my twin and I are lazy for not getting something done, and often my sister would get so angry and say “Call me lazy if you want, but never call him lazy for not being able to help”. My family know that I never take advantage and say I can’t manage something if I could! They also acknowledge more now that sometimes I can manage something, but have to plan carefully around scheduled events to conserve my energy.

I went through a long period of not wanting to worry my family, and I think that contributed a lot to them not realizing the extent of my disease and the probable progression. I would very much resent them going on and on about the little parts of their health issues while not acknowledging the extent of mine, but I know now that in part that was because I would keep quiet. (Don’t get me wrong, a lot of it they just conveniently ignored!) Becoming more open about it does mean that my family share more worries, but it means they are more informed. As I said about myself, I found it much easier to cope when I fully acknowledged that this disease was forever and will likely progress, which might seem paradoxical, and I think it’s the same for my family. They take me more seriously the less they harbor the unlikely wish that I’m going to just suddenly get better one day. It’ll be easier for them in the event that I do need a kidney transplant that I don’t just walk in and land that bomb on them, but if they’ve known in the run-up to it that I already do have kidney damage, and if I let them know if it progresses.

I know it hasn’t been easy for my family, so I am grateful to them for the progress they are making, Mum in particular. My twin has been an absolute rock from the start. We were 15 and I became suddenly ill with no answers. We were both bullied at school, and apart from that a 15 year old has enough to deal with never mind all this on top of that for her; the worry, having to do so much for me, having to face the bullies on her own, not knowing whether I was severely ill, at risk of dying even. At this point, I slept over 18 hours a day and she would often have to feed me. I also had a severe mental health crash at 16 and she had to deal with a lot of it that my parents just didn’t realize. Even she has progress to make in some parts, which I help by letting her know kindly if she’s said something off; for example, at some point she alluded to “spoons” (Spoon Theory) and I let her know that it’s very dismissive and insulting to have non-disabled people appropriate this concept. A lot of things that non-disabled people say are not vindictive, so it can be hard to say to someone that they are insulting you when they are trying to empathize with you. If you mention an issue and someone says “Oh yeah, I get tired/sad/a sore back etc. too!”, it can be hard not to seem like an asshole by telling them that’s pretty dismissive. So I try to tell her more casually, and she amazingly takes it on board well. She still has days where she resents me not being able to do something, or acts like maybe I’m not as unable to do something on a certain day as I make out, but she does apologize. Disability impacts your family as well as you yourself, and it is a journey for all of us to make, and all of us to contribute to. And I’m happy with how my loved ones are making an effort.

This week’s bite-size goals (30 March – 5 April)

1. Work on planning more explicitly for any of my forthcoming novel projects.

2. Transfer miscellaneous bags of yarn to the new box my sister bought me.

3. Work on finishing the Family vocabulary sheets for my folder.

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.

5. Work on any translation project.

Goal review (23-29 March)

With these weekly lists, I notice how fast the weeks are going by! Along with it is a disappointment that already it’s April next week, and yet weeks go by and I’m not getting much done. But! The point of these lists is to encourage myself slowly, and I want to focus on what I have done rather than get bitter about what I haven’t. There will always be something more that we could have done each week, each day, but this is the case even for non-disabled people! With the lists, I want to remember not to only complete them and then stop for the week, but if it inspires me further, then that’s good, but in learning to pace myself (even after eight years with the disease) I must stop viewing every little thing as obligatory. Even hobby-wise, I have so many of them that it’s hard to devote time to some of them, such as keyboard and songwriting, art too, but it will never work for me to feel obliged to regularly work on them all within a short space of time, say a month, because I will stretch myself too thin. It’s simply a case of prioritizing certain hobbies above others, and working on others more occasionally; I did do a sketch of my cup of tea yesterday, so I’m chuffed! Not bad for a relative beginner who has little time to devote to art, I don’t think. 🙂

Anyway, onto last week’s goals!

1. Move laundry to other room for sorting.
We did more than just move the laundry, happily! We sorted it on the same day, and one load was done here at the house; we just need to wait on a nice weather day and get the rest done at the launderette. And when the backlog is done, I must must must keep on it regularly and never let it pile up like that again!

2. Get back into taking pills regularly and keep weekly pill box filled. (I’ve been rather lazy about sorting my pills and so haven’t been taking each day’s pills for definite.)
I did fill the box, didn’t take them as much. I need to make it a more regular point in my day so I actually remember. My occupational therapist suggested keeping them downstairs but I barely make it downstairs on some days. I think I need to start making sure I take them with dinner, which I do have more regularly because my sister cooks with me.

3. Work on my novel.
I wrote around three pages yesterday, which amounts to somewhere around 900-1000 words (I won’t know until I type it up, as usual). I stopped only because I was interrupted to play with my niece and baby nephew. I’m getting scarily close to the end of this novel, so I think I need to specifically devote time to more thorough planning before that happens, because I hate being stuck in between projects while I work on the planning.

4. Start on a new translation for a language I’m learning but I don’t have a project for (i.e. Latin, Slovenian). (My sister is still in the process of convincing me to start Ancient Greek! I’m learning 12 languages, plus I’m an absolute beginner in Japanese and haven’t done much at all for it, and I’m still tempted to add more!)
I failed this one! In fact, I didn’t work on any translations all week, otherwise I would have chosen Slovenian, I think. I think I should make a deal with myself not to add any more languages (specifically Romanian and Hungarian are the ones I’m closely considering, as I have some Romanian knowledge already and am tempted to put in another Uralic other than Finnish) until I complete a substantial part of the translations I have already!

5. Work on a current crochet project (i.e. either the baby cardigan or the Granny squares for my niece’s Scooby Doo characters!)
Unfortunately another failure. Yesterday my niece stayed overnight as usual on the weekend, and she inquired about them, but because I had done the drawing that day, it massively flared up the tendinitis in my hand so there was no chance of working on crochet! I feel like a rotten uncle. 😦

Thinking about Masters degrees

I mentioned very briefly in the previous post that I am thinking about further study. I finished my anatomy degree at the University of Glasgow in 2012, and haven’t really done much with myself since then; I very much needed the break! The planned year off stretched further as I realized it wasn’t such an easy thing to jump back into study, mainly for financial and health reasons.

Before I was disabled by lupus, I had intended to devote myself to a job and become one of those men married to his career; since I was a very young child, I wanted to work in forensic pathology, and in the last year of my anatomy degree, I applied to medicine, knowing however that such a degree is a struggle enough for able-bodied people. I think it was a blessing that I failed the interview (it wasn’t a traditional panel interview, but “mini-stations” with some very odd tasks!), and I realized I had to stop planning my life as though I wasn’t sick. Of course I grieved for my plans, my passion, but I think I’m more or less at the stage now where I realize I cannot manage such a job as forensic pathologist, having to be on-call etc. I now desire to have a lighter job at least something to do with clinic, so that I can still do my hobbies at home.

This week I found two Masters degrees I would very much like to study; one is Forensic Science and the other is Biomedical Science. The forensic course is unfortunately full-time, and involves going to scenes, etc., so I have mailed the convener explaining my disability and asking if I can have any idea of how physically taxing it will be, e.g. how often would the students visit scenes, what physical requirements are there when we are there. (I had wanting to become an embalmer at some point, but know from my anatomy degree that it is very difficult to lift and turn a body, even for my able-bodied colleagues!)

More likely I will manage the biomedical degree, and in fact this is what I’m tending toward. Forensic biology and medicine are my passions, and so considering my health, I thought it might still be possible to have a “background” job in one of these subjects, working in a lab, for example, either for the police or a hospital. The biomedical course is offered part-time, which is fantastic.

Both courses are at Strathclyde University in Glasgow, where I lived for four years for my undergraduate degree. I have had a yearning since leaving to move back to Glasgow, but it hasn’t really been financially feasible. (I am currently 60 miles away.) The tuition costs of the degrees aren’t too bad; I don’t have that money sitting about, of course, but neither does anyone in my family who could lend it to me – my friend from my undergrad already completed a Masters, but she was lucky enough that her mother could lend her the cost of tuition. My twin sister and I are the first in our family to go to university, and we are all struggling for money, particularly as my parents have been chronically disabled as well as me, although my mother doesn’t receive disability anymore since her hip replacement, the arthritis is extant in her other hip and knees. Dad does work, but as a lorry driver, and he doesn’t earn much. My sister, the able-bodied one, studied Classics at university, which isn’t the greatest for job prospects! 😀

I have options. There are career and development loans whose interest rates do not start until the period of study is over. However, I would have to factor in a move to Glasgow, into a private flat instead of with three others in my family who could help with bills etc. My twin would probably move with me – the only time we’ve been more than 24 hours apart is when I was in hospital 100 miles away! So she’d be there to help me, but finance is the issue. Oh, how delightful to have the money to simply choose a place and degree to study, and be able to act upon it! 🙂

Nothing is for sure yet. I will probably have to apply for 2015 entry to ensure I have made all the arrangements. I have to talk to the bank and Jobcentre re loans and my options. I don’t know where it will lead me, whether I will actually find a relevant job I can manage in the end, but I never know if I don’t try!

Employment and Support Allowance – meeting with work adviser

I receive a benefit here in the UK called Employment and Support Allowance (ESA), which is a benefit to help those ill or disabled who are unemployed or working under 16 hours a week. There are two groups into which claimants are placed, the work-related group, or the support group. There has been a lot of issues recently concerning disabled rights here in the UK, and many people who felt they should be placed in the support group have been placed in the work group and been unable to manage, and it’s been a very difficult time to get changed. Many disabled people have struggled to get ESA in the first place as well as disability allowance (for which I lost my appeal last month), and there have been many awful stories about various people who have been sanctioned by the DWP (Department of Work and Pensions) for the slightest little thing; to give the most awful examples, a man was sanctioned for “leaving the assessment” when he had a heart attack during it! I read of a mentally ill man who was not only sanctioned but arrested for making a joke in the Jobcentre.

Anyway, as such, I was getting very anxious about the first appointment with my work adviser, as I closely follow much of the benefits scandal and disability rights, and I thought because I was put into the work group that they would give me many mandatory workshops etc., and push me into work beyond my capabilities. Well, I got very lucky, and got a lovely adviser! Before I went, I was thinking, “I’m going to put all of the lurid details about this appt on this blog; people need to know!” Yet thankfully I have a positive experience to relate.

She was very sympathetic toward lupus, and listened to me as I explained the limitations it has, particularly the unpredictability and having to avoid going out surrounding scheduled events; as an example, I had been hoping to get back to volunteering the day before the interview, but explained to her that I decided against it as it would risk me not being able to get to the interview.

As of now, I have no mandatory tasks. I am free to find part-time work under 16 hours a week if I can as long as I let them know. I told her how I’m looking into further study too, part-time. If I need any further help, I’m free to drop in – the biggest issue for me is being able to find a sympathetic employer because of the unpredictability of the disease; not many are going to be happy with an employee who doesn’t know whether he can work until the actual day!

I am so relieved that I’ve been one of the lucky ones so far, and my heart goes out to everyone who has been screwed over. I very much want to work and I hope that with my adviser’s help I can find a manageable position for me, even if it means working at home on my own hours. I am applying for PIP (Personal Independence Payment, basically the standard disability benefit after DLA was removed) after losing my DLA appeal, and although it’s stressful as hell, I’m not going to give up. No matter how long it takes, my needs are my needs, and I’m going to try to not let them grind me down so far into not bothering anymore!

This week’s bite-size goals (23-29 March)

1. Move laundry to other room for sorting.

2. Get back into taking pills regularly and keep weekly pill box filled. (I’ve been rather lazy about sorting my pills and so haven’t been taking each day’s pills for definite.)

3. Work on my novel.

4. Start on a new translation for a language I’m learning but I don’t have a project for (i.e. Latin, Slovenian). (My sister is still in the process of convincing me to start Ancient Greek! I’m learning 12 languages, plus I’m an absolute beginner in Japanese and haven’t done much at all for it, and I’m still tempted to add more!)

5. Work on a current crochet project (i.e. either the baby cardigan or the Granny squares for my niece’s Scooby Doo characters!)

Goal review (16-23 March)

I was moderately successful with the first week of mini-goals! I didn’t do them all, which is a bit disappointing, but I also have to remember everything else I’ve done in this week that didn’t appear in the list. I was particularly proud this week of managing to get out to the cinema with my sister, and then the next day, my guilt was eating away at me enough to sort out the bookshelf, because it was in my goal list!

1. Sort out my bookshelf of “permanent books” and put the unwanted ones in the donate pile; move the temporary books to this shelf, and replace temporary bookshelves with my yarn boxes.
I took all the “permanent books” away to be taken to charity; I don’t like to keep many books at all now because I’m not much of a re-reader – because I have far too many on my to-read list! We also put all of my sister’s classics (ancient Greek and Latin texts) separately so it’s more organized, and our multilingual Harry Potter collection more separately. Some books I will read once more and then donate, such as the Anne Rice Vampire Chronicles that I own – I would donate them now but I want to re-read the first ones before continuing with the series. There wasn’t as much space as I had anticipated, so I couldn’t move too many “to-read” books, but I moved enough to clear a small shelf for one yarn box, as planned.

2. Prepare one bag of laundry for the launderette.
I filled half a bag with black clothes only, although technically I’m sure this was before last Sunday. 😛 We are so overrun with dirty laundry, it’s astonishing, so we plan to move it all into another room to properly organize it for washing. It’s so ridiculous but combining the winter and me not being able to do a lot has made it spiral out of control. I am very much hoping to have made a lot of progress by my appointment with my occupational therapist, as I won’t be able to stand telling her it’s still a problem!

3. Work on my novel.
I didn’t write much, maybe a page’s worth in my notebook; I don’t know how many words yet as I write longhand and then type up, and as I haven’t typed it yet, I haven’t counted. Anyway, the word count isn’t the important bit for this goal! I’m getting close to the end of this novel, my second.

4. Work on at least four of my translations.
The week before I made this goal, I was mainly focusing on my Russian translation, and so this week was a nice variety due to this goal. I worked on the Russian, but also Italian, Spanish, and Dutch.

5. Complete my core physiotherapy at least three days. (10 stretches)
Considering I went from not having much physio at all for months, I thought I didn’t do too badly by only doing my core work once this week. Although gentle and low-energy for most people, these stretches are painful and exhausting for me. I was at the point before of doing them most days, and I want to work back up slowly to this again, before phasing in some of my other stretches, such as hip strengthening. I did less than intended, but I still managed once on top of being quite active by getting out this week, so I’m not too disappointed!

This week’s bite-size goals (16-23 March)

1. Sort out my bookshelf of “permanent books” and put the unwanted ones in the donate pile; move the temporary books to this shelf, and replace temporary bookshelves with my yarn boxes.

2. Prepare one bag of laundry for the launderette.

3. Work on my novel.

4. Work on at least four of my translations.

5. Complete my core physiotherapy at least three days. (10 stretches)

Bite-size goals

I didn’t want most of this blog to be about mental health, but I don’t mind that that’s how it seems to be turning out; after all, the mental health effects of lupus are often neglected by most people. Of course any chronic illness can cause depression in itself, and lupus can directly affect the brain, or, as is my case, it can make existing mental illness worse.

Making goals for myself has always been something I aim to do (I aim to make aims, haha) to boost my productivity, which has taken a dive since I graduated and have been back living with my parents in a small town instead of the city. As my health has gotten worse and my stamina has decreased, it makes things even harder to keep up. I know I’m the type of person who likes lists and being able to tick things off them, and I enjoy being able to see progress in numerical goals, such as how many books I’ve read this year and watching the percentage increase. Last year I had set up spreadsheets with goals in it for each month such as how many words I wrote for my novel, how many poems I wrote, how much I earned on Freerice, how many quizzes I write on FunTrivia, and so on and so forth. It helped if I was sitting about thinking I want to do something productive with my brain, then I could look at the list, and think “Oh, I didn’t do much translation this month”, and then work on that.

But eventually, the maintenance of the spreadsheet became a task on its own, and I started to neglect it to the point where I haven’t updated it for about six months. Similarly, I downloaded a To-Do list program on my computer, but setting it up with all my goals became a mammoth task in itself!

My psychologist suggested I keep a journal with my sister where on a set day each week we write down problems or things we want to sort out, such as ideas for careers. She said to write down the next small steps in each goal, or any problems we’re having in general, and then next week come back to the book and note down any progress we made. My occupational therapist keeps getting on at me for walking in and saying “I need to sort out my WHOLE LIFE.” She emphasized that I need to cut my goals down to smaller chunks: instead of “I must catch up on the entire backlog of laundry, I should sort out and wash one bag of clothes this week.” But I would write down goals when I was with her on a sheet of paper and then not really look at it until the next appointment where I would confess to having done virtually nothing!

Recently, as the weather improves, my sister and I are really getting going on spring cleaning and pushing ourselves toward productivity again. I’ve been talking with a few friends fairly recently as well about setting small goals instead of large ones that we’re less likely to embark upon never mind complete very soon. It is so difficult balancing physical and mental health, and there’s just no point in me getting geared up in a session with my therapists and saying “Yes, I want to sort everything out, I’ll make a massive list of goals and actually do them”, and then find in the coming days that my body’s not having it like that!

I believe that actually more can get done with many small goals than if you wait until the mood or right conditions take you for a larger goal. To use tidying the room as an example, I find that it takes a long time until I can even face a session of a big tidy up, and if I spend a few hours on that, I’m going to be paying for it for a long time, and so I can’t keep it up as regularly; usually by the next time I manage to go for a long session again, the room has recovered most of the mess from last time, so no progress is made! More can get done if I say to myself that I will tidy for 10-15 minutes a day, for example, or set a specific goal such as “Sort out the bookshelf” and only do that even if I feel up to more. This means that I will be a lot more likely to do another task the next day. So it seems kind of paradoxical, but I think this method works for me, and more gets done with smaller tasks than large ones.

So, for some inspiration, I thought I would start committing to small goals on this blog. I find that I’m more likely to carry things out if there’s someone I have to come to and say “No, I didn’t actually bother with that this week”! I’ve decided to simply set five goals each Sunday (happily I was busy yesterday categorizing my 300 DVDs into alphabetical order to write this post yesterday; they’re now filed away in the cupboard instead of my desk so I have a semblance of a working space!), with no numerical component: it won’t be “Write ____ words for my novel” this week, but simply “Work on the novel”, even if this is only 100 words, or Hell, even one! It won’t be “Complete the crochet project this week” but “Work on it”.

This is a nice combination of both therapists’ suggestions, I think, and I believe it will help boost my productivity long-term more than the things I’ve tried previously (which often work great in the short-term but it’s hard to keep up). I think as well, even though some of the goals will end up things I would have done in the week anyway, marking it up as “completing a goal” will boost my self-esteem and feeling that I’m getting things done! I’m not going to keep track of how many I complete and how many I fail; I want each week to be a clean slate. I am quite a meticulous person with perfectionist tendencies (see above with the DVDs; I have spreadsheets of my novel’s word counts, a four-page one for my books, haha) and wanting to tick off goals each week will hopefully spur me into things. We’ll see!

Feeling better

I didn’t want to leave the last post without any follow-up. I wasn’t really 100% in the right frame of mind, and was worried I was on the brink of another big mental health relapse. I can’t say for sure that this storm has completely passed, but in the last few days I have a sense of normalcy again at least.

I told my sister immediately when she came home what I’d done, and she was so good about it, making sure the wounds weren’t too severe, which they weren’t, and that I was o.k. She reads this blog, and it’s good for her to get the insight of what I can write down but can’t bring myself to say aloud face-to-face. 

A few days after she asked me to come meet her after work and we would go for coffee, nothing too dramatic. I’m ecstatic to say that I did make it, although physically I was struggling. It was only my fourth even vaguely social event of the year (twice volunteering an afternoon in my charity shops, my niece’s sixth birthday dinner), and when I got up that day, I knew I was struggling physically, but I also knew that there was the mental block there, and I knew getting out would be good for my mental state. I barely made it up to the bus stop even with the walking sticks, but I was glad just to get the fresh air! I’m getting cabin fever seeing this bedroom all day every day!

We met at her work so she could show me some coats she was thinking of buying, to get my opinion. Then we went to her work’s café for some lunch and coffee. I did spend much of it telling her, a classics graduate!, about the details of the second Persian invasion of Greece, but she and I often talk about detailed subjects, haha. She left me there while she went to the gym for an hour, so I could work on my novel; it has been such a long time since I just sat alone in a café, earphones plugged in, writing. I did it all the time while I lived in Glasgow for uni, but it’s rarer these days, as I mainly leave the house to do something in particular.

In honor of World Book Day, we also popped to the library – and as always, I maxed out! I was thankful to be on the last library book I had, but now of course I have many more to get through (I should stay away from the library, as I’m overflowing with physical copies of books at home that I need to read and get rid of!). The librarian knows me well enough by now, and kindly overrode the maximum so I could also pick up the books I’d reserved.

Nothing too much has changed, but I have been glad just to get out again. I haven’t explicitly harmed again in the meantime, and today I started on my translations again. My sister has also acknowledged sometimes she’s been unfair with me – but she’s mostly been absolutely amazing and I don’t know what I’d do without her. In her “unfairness” it’s mostly been things like acting disappointed if I can’t help with the food or something, or come out, and she doesn’t explicitly say crappy things to me about it! Anyway, we’re so close, that usually I can say to her if she’s having unrealistic expectations of me! 🙂 Right now she’s making our dinner, and she saw my face because I felt guilty not being able to help, and said it was absolutely fine, because she realizes she’s been a bit unfair recently.

This is her two weeks off from work, and we wanted to completely tidy the room, but I don’t think I’m going to be able to be much help any time soon. But hopefully Mum will agree to help and I will be able to sit on the bed and organize things, as we’re spring cleaning.

Unfortunately, we had planned a trip on these weeks off, maybe just a few days down somewhere in England, and I feel bad that we’ve had to cancel, but my sister is being amazing about it, even though of course she’s disappointed and for a while felt I was just being obstructive. We’re planning just a few outings here in our city this time, maybe a cinema trip, and a meal at a restaurant she’s wanted to take to me for ages. And when it gets further into the summer weather and she can get another two weeks off, we will plan the trip to York, Bath, Oxford, London, we can’t really decide exactly where! By the time I had mentally prepared and decided I wanted to go somewhere and get away from familiarity for a while, the lupus flared up and I knew there wasn’t much point going if I had to really struggle just walking. We’re thinking of buying a lightweight travel wheelchair though, which should help a lot, and I’d be more eager. 🙂

I’m feeling optimistic just now, but cautiously. I always told my therapist I am a “realistic optimist”; I hope for the best but prepare for the worst! I’m just taking things a day at a time just now, and hoping that the meeting with my ESA work adviser this month gets me going a bit more with career plans, but I’ll take it slow. I’m still considering going back to psychotherapy, but maybe to see someone else; my therapist Caroline was absolutely lovely, but I don’t know what else we can go over, and think maybe a second pair of ears might help.