Volunteering

I missed the opportunity on Sunday to make new goals, but I do plan to start again next week. Even though I’ve been still working on the things I put in my lists, it feels good to have that extra push. However, today, I went into one of the charity shops I town where I volunteer. I used to do 4 or 5 hours when I managed regularly, but now I have only been a few times this whole year and while I’m easing back into it, I do 3-5. Mum said today, “There’s not much point going in at this time!” But until I get some fitness back up, particularly following this flare, I am mostly sticking to shorter shifts.

I got the bus down, which involves a fair bit of walking; in the last couple of weeks, my few outings have been with the wheelchair, so it was nice, albeit difficult, to get some walking in today; the bus stop directly across from my house used to be the stop that takes you straight into town, but now it’s up a hill across from my house, so it’s not too long but uphill. From town, it’s just a couple of streets to the shop. It did mean I was pretty exhausted and hot by the time I got there in spite of the rain!

It’s always nice to see everyone again. When I started volunteering, it was in part for something to do, but a large part was to boost my social skills. (As I’ve said before, some of my doctors suspect I have Asperger’s or a similar condition, which I agree with, but I don’t have an official diagnosis.) It’s also nice to meet people in my city of all ages, because the only people I really knew upon moving back from Glasgow were people I went to school with who hadn’t also moved away–so basically, I had no friends here!

Alas, barely half an hour in, I managed to somehow cut my finger without noticing, getting blood everywhere, on a t-shirt I was folding for the customer! She was lovely about it, and took it anyway. I had been about to point out a stain I noticed on the shirt when I realized it was dotted all over me and was running from my finger! It’s quite a deep slit–we’re guessing it was on a paper ticket on one of the clothes, but I didn’t feel it at all and still can’t, so it’s no big deal, although it gave my manager the chance to break out the first aid kit and wrap it all up fancily, haha, which was quite a hindrance! I have a basic band-aid on now, and still can’t feel it.

I was talking to one of the women who works in the office there, so I don’t get to see her as often as the workers in the shop. We were talking about how my health is worse and my plans; she says I’m very positive about it, and should look into disability support for other young people. She was very impressed when I told her about this blog, which gives me an outlet and hopefully some support for people reading. Next week the shop is having an activity day out in a nearby town, so she was telling me that they will sort everything out for taking my wheelchair. It’s just a craft fair kind of thing, but these days I jump at these events to get me out of the house!

While I was helping a customer with the radio she bought, she saw my sticks and asked what my disability is. It was in a way nice that she asked this way, acknowledging that just because I’m a young guy doesn’t mean it’s a temporary injury or whatever. She has MS, so we were talking for a while about our conditions. As she left, we both said things like “Hope you improve”, “Hope things get better”, then kind of stopped and reflected that even we say those things, although we know our conditions tend to get worse anyway and it’s almost a platitude to say, haha.

I did manage to come away today without any books!!! (Maybe that’s mostly because I didn’t bring a bag, haha!) I did buy some buttons for my crochet projects though–I was talking about crochet with the manager, and she’s asked me to do some crochet flowers for our spring display, which will be quite nice. We recently won an award for the Best Shop Window in town joint with Oxfam, which is awesome!

I’ve been treating this blog as kind of a general journal in a way–I don’t know if people enjoy this way, but I miss having a Livejournal for these kinds of posts, so this blog is the replacement! I do want to paint a picture of life in general with lupus anyway, so I suppose these posts have their place. But soon I want to start working on posts of individual symptoms and secondary diagnoses so I can link them up to my diagnoses page. I’m going to recruit my sister soon to take some photos to display my hypermobility, so maybe that’s where I’ll start.

Flare and wheelchair travels

Well, I’m shocked that I haven’t written here for two weeks! I have been suffering quite a flare, and for a while wasn’t able to do much at all. In this time, my wheelchair arrived! It has made me a lot more able to get out and about, thank goodness! My lovely twin sister doesn’t mind pushing me, and we’ve had a couple of days in town; I’ve just been glad to see some of the nice weather! It’s a lightweight travel chair, as we were thinking ahead for possible trips–I think I mentioned this already somewhere. I still take my sticks with me on these days out, but having the chair has been great, and means I don’t have to cut days out so short anymore, and so on. It means I can actually go food shopping and not have to leave the supermarket and wait in the car because I’m not able. Yay! I’d definitely struggle on my own with the chair, particularly on kerbs–I notice how few of them are actually flush with the pavement, which is a problem, and hills are just a no-go. However, when I go volunteering and so on, I should manage on my sticks as there’s not much walking about to be done.

I did pop into the shops I volunteer at while we were in town–while they weren’t too happy to see that I’d declined this bit further, they were happy to see me. And in one of my shops, they had done an Easter draw for the volunteers, and for a change, I had some luck and won the vouchers, which contributed toward an electric toothbrush (easier on the arms!). We went for a walk around one of the inches here (basically a big green park), and it was lovely, although a bird did do its business on us!!! Well, I hadn’t laughed like that in a while, anyway! 😛

Today we took the chair again and went to see the Ancient Egypt exhibit in our local museum, as its the last day. As it’s a small town, it’s a small museum, but it’s always nice for a wee visit. Afterwards we popped into my sister’s old work to see her former colleagues and give them a gift, before going off for some coffee while Starbucks is still doing its happy hour! Nothing too special, but oh, it’s a good feeling to just get out and do these days and not have to labor over every step. Getting on and off the bus with the chair was easier than expected too, so thankfully my twin won’t have to push me all the way into town every time.

It’s just a relief that although my health gets worse, there are aids that help and make it easier. There’s a big mental block when you decline to a new level, I think–I remember how awkward it was for me going from using walking sticks just occasionally to needing them pretty much permanently. Now I’m using the chair occasionally, but we’d been talking about buying a lightweight wheelchair for a long time, and my sister had suggested so many times to use the wheelchairs in the supermarket, but for some reason I wouldn’t. I always think I’ve come to terms with my disability, and then I decrease to a new level and have to kind of accept it all over again! My sister found it rather amusing because recently in a TV show where a character was refusing to get out and about in her wheelchair, I was saying “Ach, just use the chair; you’ll get out; it makes life easier; it’s not such a big deal!” And then when it became my turn, I kind of saw the reservation about it, even if it’s fairly irrational. But I feel good about it now–I know which is the better option out of being in denial while refusing to accept the aids I need and admitting to myself that I do need them, I have gotten worse, then accepting all the help I can get to still have some semblance of normality in my life!

One point about using aids that are so much more visible is that my illness is a lot less invisible to my family now, which overall is a good thing, I think, although I do have days where I just want to be “normal” as I’m sure we all do, without having people be able to see our disabilities. But actually, ultimately, it’s a lot easier in so many ways when it does become visible with closer family and friends. Mum has been asking quite a bit about lupus more regularly now, and while I’m sad to have to give bad news in the answers, such as the likelihood of progression rather than getting better, to have them actually interested after so many years makes me feel happy, validated. For so long I went without a diagnosis, yet when I finally got one, I hadn’t felt like they invested much interest in the condition. But things are getting there. 🙂 At least they’re not being nasty about it! (Which I’ve certainly had from family members when I was undiagnosed, and I think they as well as the doctors thought I was rather a hypochondriac.)

As I think I mentioned a while ago, I’m planning on going back to university to do my Masters in biomedical science. I have to talk with the bank about certain loans, and have to work out somewhere to stay that’s fairly affordable and close to the uni, but I’m applying for a 2015 start so there’s still time. As much as I still have days where I feel sorry for myself and wonder how far I’d have gotten in a career if I didn’t have lupus, I’ve more or less come to terms with the fact that I can’t be wedded to a hectic career such as forensic pathologist as was my dream, but I can still work within the field and find a job I love. Otherwise, I’m just getting on with hobbies, and need to get back onto writing up my weekly goals here! I hope that I become a lot more productive in general as the nice weather sets in.

World Lupus Day – useful links

In order not to clog up the previous blog post even more, I decided to post some links separately if people are interested in reading more about lupus.

Wikipedia entry on SLE: http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus
Lupus UK: http://www.lupusuk.org.uk/
NHS page on lupus: http://www.nhs.uk/conditions/lupus/pages/introduction.aspx
Lupus Foundation of America: http://www.lupus.org/

In addition, I want to include the Everyday Ableism website, where you can get awareness of the bad experiences and treatment that disabled people receive in general from others. It can help you realize when your behavior or speech is problematic and make improvements on it.

http://www.everydayableism.co.uk/

Otherwise, there are many many lupus blogs out there, and rather than linking some at the expense of others, I will simply say that they are easily found out there by Googling “lupus blog”.

Thank you!

World Lupus Day

So, today, May 10th, is World Lupus Day, and I thought I should contribute something, although whether it will be beneficial in raising awareness into this disease remains to be seen! I basically want to talk a little about the disease itself, and also then about how it affects my everyday life.

Lupus is an autoimmune disease, meaning that the immune system recognizes the body’s own cells as “foreign” and attacks them as it would germs. In a way it’s like being allergic to one’s self. There are actually a few types of lupus; this post will be on systemic lupus erythematosus, or SLE as that’s what I suffer from. In this condition, there is no limit on which cells can be misrecognized and damaged–as the name suggests, it is a systemic, i.e. whole body, condition. What this means is that the course of the disease can be completely different in two patients, not only in severity, but in which tissues and organs become damaged. This combined with the fact that symptoms are so generalized through the whole body make it a difficult disease to diagnosis; it is often called “the great imitator”, and many people take around 5-15 years to get diagnosed. It took six or seven years for me.

The effect caused by lupus is mainly inflammation, but this can progress to the point where tissues and organs become quite severely damaged, in some cases leading to organ failure, usually in the kidneys, but as I mentioned, it can be anything. I personally have some damage mainly to the heart, bones, kidneys, and intestines, but also issues with my skin, liver, brain… Luckily for me, most organ damage is at the early stages; no failures for me yet! But also the bones, muscles, and soft tissues are affected. Honestly, pretty much everything. I would find it very hard to point out a part of my body that hasn’t been affected even a little by lupus.

The hardest part of the disease in my experience is its unpredictability; not only in severity and differences between patients, but in an individual’s experience. Many people experiences flares, where symptoms get dramatically worse, and remissions, where they become dampened and even almost disappear for some lucky ones! I am in a flare at the moment, which can last from days to weeks to many months. Unfortunately, I don’t experience remissions as such; things are always quite bad for me, just worse in a flare which will usually keep me completely housebound.

Even day-to-day variation can be quite dramatic; when I was still undiagnosed, family and friends would say, “But you were fine yesterday!” In fact, a very common vicious circle can occur in which we have a good day to the extent where we overdo it, and then we have a long period of “payback”, which can be the next day, or in my case, more often a few days or even a week. My doctors have long told me off for overdoing things on a good day, but I tell you, when good days are rare, it’s very difficult not to take full advantage, even knowing I’ll pay for it tomorrow and so on!

Unfortunately this makes it difficult for me to easily live on a regular schedule, partly because as I said, I don’t know how I’ll be day-to-day, but also building any kind of stamina becomes difficult. For “normal” people, they know the tough days just need to be toughed out, and it should go uphill for them as time goes on, but with lupus, overdoing a day can mean a break for so long that you lose what you’ve gained. Also for me, the pain in my joints etc. is not just because I’m unfit, so it won’t necessarily improve with fitness, and in many cases, by pushing ourselves to build fitness, we can do even more damage to our bodies that gets worse, not better, with time. So the balance is extremely hard to find, and after eight years or so, I haven’t found it yet! I don’t know if I ever will.

Another issue with lupus is that it’s largely invisible. People look at you and can’t imagine that every bodily system is under attack. You just have to look at my symptoms list on this blog to see how it starts seeming very much like no one can have so much going on in so many body parts. This long list of symptoms is what makes it hard to diagnose; not only because it’s very generalized, but because doctors can view you as quite a hypochondriac if you say everything is hurting and nothing comes up on tests! It also affects the way people can treat you; even if they know about the disease and what it does, it’s easy for family and friends to forget just what you fight against every day. They forget that just because you aren’t talking about pain and symptoms, that doesn’t mean they aren’t there. This invisibility can also mean bad treatment from strangers who simply don’t believe you’re disabled, or “that” sick. I’m thankful in a way that I use sticks as a sign of my disability, but even then people don’t realize everything that’s going on behind the scenes.

If you’ve come here to learn about lupus for World Lupus Day, thank you for your interest! If you know someone with the disease, be there for them; remember that just because they aren’t showing or talking about their symptoms, there is always something going on with this disease. When you have such a systemic, chronic illness, it becomes natural to act “normal” even with quite bad symptoms. With my heart issues, I often get quite sudden chest pain and fluttering, but often those around me have no idea because I’ve learned simply not to give any outward signs. This is a combination for me of simply time that has passed, of not wanting people to treat me as though I’ll break (which they would, I’m sure, if I made clear everything that goes on), of not wanting to seem like I’m complaining all the time, or, God forbid, bragging. We will often push ourselves through things and suffer for it, even if we seem o.k.

So my final point is don’t take the unpredictability out on us sufferers, least of all because it’s worse for us than for you to have to cancel plans at the last minute sometimes. We have had to grieve for the lives we used to have and even after many years there are still days where you think, “Why me?”, “Why can’t I be healthy?”, “Why can’t I have a normal life?” I get down some days when it hits me that I simply won’t get a break from this. My sister said to me recently that she felt awful for me because, for “normal” people, the thing that gets them through illness is the thought of getting well again; of course, with lupus, most people get worse over time. I’m only 23, and already most systems are affected; a kidney transplant is very possible for my future, cancer risk is increased in general, and death is a very real possibility for lupus sufferers. But I can’t dwell on that, and you shouldn’t either–provide a space where people can talk about the disease and its symptoms without that black cloud, of being able to talk very matter-of-fact without you drowning them in pity. This is why I try to talk about things more openly, because I don’t think it should be a separate dark discussion but an everyday thing for me to be able to mention something about lupus. Many people say we are not defined by our disease–I think I am, and that’s o.k. What we need is for others not to treat us as the disease–bear in mind that almost every choice we make has to be based on it, but don’t treat me as “that friend with lupus”, or, as someone said once, “that guy who’s always sick”. We have normal likes and dislikes, we can have “normal conversations”. Friends and family also have to find that difficult balance of acknowledging lupus and not overdoing it, having too much pity, or treating us as fragile objects who might break at any time. This blog is part of my effort to work together with those who suffer from lupus and those who don’t, opening a dialogue where nothing is “TMI” and we can learn from each other.

Thank you for your time! (Especially as I went OTT as usual; being concise is not a concept I’m familiar with. :P)

Mainly babbling!

I haven’t checked in for a while, not even to do my goal list for the week. No matter! I’ve been a bit all over the place health-wise, but I was happy to get out of the door today; alas, it was to the dentist for an extraction! So while my face comes back to life, I’m trying to resist keeping my tongue out of the gap. 😛

Nothing too much has been going on other than the general flare. My bald patches are getting worse accordingly; one is pretty massive by this point. I’m thankful that it doesn’t bother me any more, and I keep my hair quite close shaven usually, which keeps them visible; for most of my first year of uni, I had a hat pretty much glued to my head even in the chemistry lab! One day I just thought “Who cares?”, didn’t put it on, and never looked back! I know it’s a lot harder for people whose looks are more important to them; I’ve had people say I’m brave, they could never do it. To make a sweeping generalization, hair is more important to most women than to men, so I understand a woman in general might struggle more – but hey, even I did at first, and I don’t really care much for my appearance either way. It’s just hard to have visible symptoms whatever they are.

Something I’ll have to bring up to the rheumatologist next month is both my sinuses and the muscles in the back of my head. Long before I was diagnosed with lupus, I was on medication for spasms of the muscles in the back of my head. I notice particularly when I play with my nephew how much it flares up; I don’t know if it’s the bending down, because I can’t bend much! But it’s a very strange feeling, not really like muscle spasms elsewhere in the body. Combined with sinus headaches, it’s just very frustrating, especially as I get quite painful mastoids (the lumps of bone behind your ears). I have pain the upper teeth too because of the sinuses – right now it’s worse than my lower jaw, which had the tooth extracted today! I’ll just have to see what she says. My ears are a pain in the butt too with getting blocked up but that’s because I have anatomically irregular ear canals, apparently, so even syringing them can be a pain.

My fitness plan has rather gone out the window due to this flare up. Unfortunately my occupational therapist brought the next appointment forward nearly a month! So I see her on Monday and don’t have much to report. I’m hoping to ease back into the daily walking by going around my garden a bit rather than walking to the store; at least I can stop whenever I need to without having to wait until I get back home. Oh, how much easier would life be if it was a simple case of persevering and building fitness without any adverse effect! Alas, as it is, as I’m sure I’ve mentioned before, using the sticks all the time is putting so much pressure on my upper body joints, which aren’t exactly in a good state anyway. So it’s a catch-22 with getting out really.

On a similar note, my wheelchair arrived! It’s a self-propel travel chair, and I plan mainly to use it for big outings, particularly if my sister and I get on the small holiday we postponed a few months ago, just down somewhere in England. I used a store wheelchair last time I went to the supermarket, and ohhh, it was glorious. It made shopping so much easier–I don’t get to go often because getting around the store is just such a mammoth task, even with the trolley for support. For a while there was a mental block with using the chairs there, but I’m glad I did! My sister is thankful I can come more because I’m a notoriously fussy eater, and she finds it hard to shop for me when I’m not there, and we do prefer to be there in person to pick out products rather than get it delivered.

Otherwise, I’m just getting on with my usual stuff, mainly translating, and working on transcribing interviews for a client. It’s my older nephew’s thirteenth birthday today, so excuse me while I feel ancient with a teenage nephew! It’s hard to think that I was quite a bit younger than him when he was born! I plan to get to the Ancient Egypt exhibit this month in my local museum before it ends, and on the same note, I need to get round to getting my new tattoo, which is Ancient Egypt-themed (Mum was meant to pay for it for my graduation… I’m such a procrastinator in browsing tattooists in this town!) O.k., I’m logging off before I babble on even longer. 🙂 I hope everyone’s well.

(Oh, one last thing: I have a few people interested to do the Lupus UK fundraiser I mentioned a while back, so if I can get them to confirm participation, I guess I’ll be setting it up! :D)