So, I've been good about getting to the gym twice a week now for the past month. This has resulted in a bit more energy, less pain, and... nothing else. No weight loss, barely a centimeter has disappeared anywhere on my body. I'm still a size "you-may-think-I'm-pregnant-but-I'm-not". I blame this on my unrelenting appetite (for carbs and butter), which in turn can be blamed on my prednisolone and Enbrel. Arthritis sucks.

Given all the visits I've been paying to the gym, I was very surprised to wake up feeling like I'd been run over by a steam-roller this morning (you knew there had to be a reason why I suddenly have time to write, right?) Apparently I can do spinning classes, use weight machines and do core-exercises using a gym ball and such, but swimming is out of the question. I didn't even do any proper swimming - just visited the pool and horsed around with my four-year-old in waist-deep water for an hour. Perhaps I shouldn't be surprised, considering that an innocent walk in the woods can make me bedridden for two days.

Did I mention that arthritis sucks?

I think I might actually be getting better at taking care of myself:
Since having my doctor tell me that my meds are "working", regardless of the pain I am suffering from, I started looking at how I can fight my arthritis symptoms and fatigue more. Physiotherapy was just the start. Now I am also taking supplements, getting to bed at a more reasonable hour, and simply putting my body first.
My first week  back from summer vacation was murder, but now I am actually feeling a little more clear-headed and spending less time in bed. Of course it just be a placebo effect from my supplements, but in that case, I'll just switch supplements every couple of weeks - lord knows there are plenty of the out there :)

I need to find a new way to post on LJ. My computer is just about ready to give up the ghost and it overheats very easily in my bed. I tried posting an update from my cell phone last week via the LJ-mobile page, but for some reason it never appeared here. The longer between posts, the longer the posts get and the harder that is on my hands (if I use my cell phone). I have to spend more time in bed, but I want to post more often.
I'm thinking maybe I could use Twitter, but I can't seem to find the information on how to post tweets on LJ. Another option is to e-mail posts from my cell phone. Any ideas?

Otherwise, I had a good vacation. I have a new physical therapist who is helping me get back on track with my exercise while rewarding me with acupuncture. Me like! There have been a lot of family outings, mostly local, but also a trip to an amusement park in Gothenburg that pretty much put the last nail in my arthritis coffin, hence the massive amounts of time I am now spending in bed.

But now I really need to wrap this up so that I start my week back on the job with a lack of sleep.

There a a few things I need to get off my chest before work today :

I saw my doctor on Monday, a visit I had been looking forward to for weeks, ever since the effects of my last cortisone injections wore off. As has happened before, he could see no signs of inflamations in my joints. Because of the pain, I had assumed that my new meds were not working. Apparently they are. I suspect that the prednisolone I still take daily is what is keeping me afloat, so we agreed to remove it two weeks before my next appointment, in December, to see if my joints are okay on "just" Enbrel, Methrotexate and Sulfasalazine and paracetamol.

One thing about being in the health care system for too long is that you stop asking "why". Most of the time that question is met with "Those are the rules" or something equally frustrating and uninformative. But this is my life. So yesterday I asked my doc why I sometimes experience so much pain when he sees no sign of inflamation.
"It can be like that with a rheumatic disease".

Maybe I can google it? *sigh*

We also discussed work and I told him about the current job offer at 20 hours a week. He said he would write an affadavit for the other 20 hours so I could apply for early pension (or perhaps you call it disability in the States?). I told him that the unemployment agency seems to think I should do more OT in a year or so. "There's no point, " he said, "The work you have been doing is lightweight, the medication is working, nothing is going to change."

"Well, what if they disagree?" I asked, "Can I go on sick leave instead?"

"No," he replied, "But you can appeal. The county council sometimes sees things differently"

A half-time job won't pay the bills. I so don't need this hanging over my head right now - I'm supposed to get my first proper vacation in years this summer. It looks like I will spent most of it filling out forms, doing research and trying to come up with a solid financial plan that doesn't involve selling our house in case I don't get the pension.

My vacation will start with a meeting with the unemployment agency and my handler at Försäkringskassan next Tuesday. My contact at FK has been dropping hints all spring about her reluctance to okay an early pension. I can't think of any way to prepare for this meeting, other than bringing my hubby along so they can see who will be feeding our kids and putting them to bed every night if they expect me to just take a full time job if I don't get benefits part-time. (Whenever I have tried increasing my work hours this year, I have ended up going to bed without dinner as soon as I get home and sleeping until the following morning. The family didn't enjoy it much.)

Come September, it will be time for the Swedes to vote. Last time, they chose respresentatives that interpreted their wishes as incentive to make it impossible for many of the chronically ill in this country to make a living. Although opinionated, I normally try not to be outright political, but right now I hope that the Swedish people choose differently next time. I worked hard from the age of 13, not a summer vacation without a job. From high school I rarely went a weekend without working either. I paid my taxes, voted, educated myself and was kind to my fellow man and gave time and money to charity. When I became ill, I did everything in my power to bounce back, get better, and overcome my limitations. I have followed every piece of advice given by my doctor and the authorities, taken initiatives and been perfectly open to changing my line of work in order to be able to work more for the past six years. And yet there is doubt that I will be entitled to benefits (not a fortune mind you, but about half of what I would have made working those extra 20 hours and just enough to keep us from having to sell the house). This is what my fellow Swedes chose for me. It wouldn't be so bad if they were at least consistent about who should or shouldn't get benefits, but the new rules are open to interpretation and differentiate between diagnoses rather than allowing the possibility of a person having several illnesses or one person having more severe symptoms than the next.

If this is what the Swedish people really want, they better pray that the people they love never get a rheumatic or psychiatric disease (if it's cancer or neurological, they might be ok... if they don't die).

Summer finally arrived this weekend, warm and lovely, perfumed with lilacs and barbecue. I didn't see much of it, unfortunately. I've been more or less bedridden for nearly a week with the most annoying, trivial head-cold. This petty virus in itself should not have been enough to keep me out of the garden when seeds need sowing, the lawn needs mowing and the kids are full of sunshine and joy. No, without the help of its cursed accomplice, arthritis, that virus would have been nothing but a harmless sniffle, easily disposed of in my hanky.

I suppose what viruses do to an arthritis sufferer's immune system is invite it to attack every cell in sight. Normally my ankles will ache, or my wrists and fingers, but during this past week I have been aching everywhere. Even lying in bed hurts, but at least it hurts less than doing anything else.

It's not missing the fine weather that has me the most bummed out, though. What I really needed this past week was to be at work. I have been pushing for a decision on my future with the company for weeks and it was finally looking like they had come to a consensus when I was forced to go on sick leave on Thursday. So each painful, boring day in bed has also been another day of uncertainty about the future. I'm not expecting much to begin with, just a temporary position until year's end, but if that doesn't happen, it's goodbye first summer vacation in a decade, hello summer of job-hunting and anxiety and pinching pennies.

I am sick of being sick, sick of the pain, sick of my bed, sick of waiting, sick of not knowing, and now, after this rant, I am finally sick of whining too.

Somehow, despite cutting back my work hours, a long Easter-weekend and loads of sunlight, I just seem to be getting more fatigued and have more difficulty focusing my mind on one thing at a time.
I have even been too tired to track my sleep-statistics lately. For all I know, I am sleeping a lot less than before. One thing is for sure: I am getting less consecutive hours of sleep, thanks to my two-year-old.
I'm thinking of trying Ginkgo, but I seem to recall it being related to ephedrine somehow and I won't be taking anything like that without a prescription, thank you very much. Perhaps a proper work-out will do the trick -it's been awhile.

I take it as an additional sign of my of my ditziness that I fell for not one but two outrageous April Fool' jokes. I am too embarrassed to say what they were, and that's saying a lot for an anonymous blogger, yes?

 This week, I was to change my work hours so that I would start putting in 5 hours a day, four days a week and take Wednesdays off.
At 10:20 a.m. this morning the phone rang. The teacher at daycare said my 2-year-old was asleep and there was clearly something wrong with her and could I pick her up?
So I hobbled out of bed, threw on some clothes and off I drove. My youngest was drowsy but afebrile and thrilled to see me. At home, she settled on the couch and requested a bottle. Then she stole one of my (breakfast) sandwiches. Finally she demanded an apple. After that, she entertained herself in the sun room for a bit while I cleaned house. Then she required my help in playing a game on the kids' computer, and reciprocated by helping me bake a loaf of bread. At three she requested a nap and woke after an hour in distress over nothing she could explain, thus cutting my nap short as well.
Thankfully, the hubby picked up our eldest from school on his way home from work, because by this time I wasn't hobbling very gracefully. I cleaned the kitchen while he put the girls to bed.

And that was my day off.

I'm texting this entry today, though I would prefer not to - given a choice between bed and computer, bed wins this time.
I have felt achy and exhausted all week and my sole consolation was that I'd be seeing my doc on the 25th. Only today a letter informed me that I was supposed to be there on the 17th. So not only do I not have a lovely cortisone injection to look forward to next week, but I also have to cough up 300 sek for the appointment I missed- this at a time when our debts are piling up like poop in a cat box.
Also, I have to cut back on my hours of OT, so I won't be getting a proper paycheck anytime soon. :(
Here's hoping for a perkier me tomorrow!

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So I've been meaning to let you all know how things are going at work, only I needed to take a nap, then pick up the girls from daycare, get everyone fed, do some dishes, respond to urgent email, catch a tv-show and then sleep and then I had to go to work again.

Other things I have been trying to do are: get to the gym, talk to friends, do laundry, read blogs, vacuum upstairs, and tweeze my eyebrows. It would be nice to have some time for contemplation once in awhile, but you can't have it all (or so I hear).

For the first two weeks on the job, I slept 6½-7½ hours a night and napped for an hour and a half during the day, with two nights a week to catch some extra Z's (á 10 hours), so it feels like the important thing to do now is to get to bed earlier every night so that I can do away with the nap. I'm trying to go from four to five hours of work per day this week, which will help force me into bed before 11 p.m. It feels like I will be able to handle quite a bit more work if I can just do away with the nap. At the same time, I want to be able to stay awake past dinner time, which has been impossible when I have skipped the nap before.

My body might actually be on my side in all this: I haven't had this little joint pain on so little cortisone (5mg/day) in years. I think the Enbrel could be working!

The trick is to keep my anxiety in check - when I'm not worrying about whether I will ever be pain-free or the fatigue will disappear, I worry about whether I will be good enough at my job for them to give me that really real job in a couple of months. I know that I need to get through my OT before I get hired, so I know how much I can work, but the whole business of being an employee, but not quite being employed is a but nerve-wracking. There a couple of occasions a week when I am told that "if" I am hired, I can buy office supplies, use parts of the intranet that are now off-limits, etc.  My job is to build lasting relationships with other companies, but my temporary job title is "administrator". The "if" is there in mind constantly, making me perhaps less assuming and proactive than I need to be.

But now it's bedtime again!

So, I guess you all heard my big news? About the job? Well, I'm adding the details here because I felt like they were more related to  swb than my other blog. Here's what happened:

I went to my usual rehab group meeting last Wednesday. Two members of the group had started their occupational therapy and seemed to have forgotten that we all are still supposed to meet up once a week. Two more were no-shows for no apparent reason, leaving four of us sickos and a counselor to brainstorm ideas for places to do our OT.

The counselor and I agreed that I would pursue some new lines of inquiry and she would get back to the people she talked to before the holidays and see if they were better equipped to have an intern now. I made a couple of phone calls from the office and the rest of our time was spent drinking coffee and discussing sicko-politics. I debated the idea of basic income (Medborgarlön)  with a couple of skeptics who, despite our mutual status as benefit-leeches, could not see the point in providing every citizen with the means to survive, regardless of their willingness or ability to work. Their argument against such a system was that they didn't want to work and pay taxes so that someone else could sit on the couch all day and do nothing.  "You are paying for that now," I said, "As well as paying for government case-workers to harass sick people to make sure they are really sick, or really trying to find work etc. What we pay now for all this bureaucracy could finance the reform itself"

They weren't buying it. They felt that there will always be people who will lift benefits and commit criminal acts - whether it be stealing cars or accepting money under the table - regardless.  I feel that it all boils down to how one regards people in general. I refuse to be cynical.


Anyhoo... I mention all of this because of what happened the next day. Because perhaps something I said or did that Wednesday affected it.

On Thursday morning, just as I was going to e-mail my CV to a semi-interested employer I had spoken with the day before, my counselor from rehab called. "As you know, we have opened a new office in XX..." (a five minute drive from my house).

"Yes..."

"Our organization is growing and we need more contacts with different companies. We won't just be handling people on long-term sick-leave anymore, but also people who have been unemployed for a long time. So we need someone who can build up a database and make contact with more companies and keep track on what is going on at the different prospective  workplaces."

"Hm, that sounds just like what I would have done at that school - didn't get the job though."

"Well, I was thinking that you could be the person we need. It has to be someone with computer skills, who is communicative. And after your OT, there would be a real job for you."

When I picked myself up off the kitchen floor, she continued, "Would you be interested in that? Because we already know you and the new office is close to where you live..."

"Yes, yes, yes!"

"Great!. Well, I have to run it by my colleagues at the staff meeting tomorrow, but you should be able to start next week or the week after."

So, these people who have seen me on my very worst days, but - on the bright side - have seen me pull myself up by my bra-straps and carry on a number of times, feel that they would benefit from my being on their team. And I really like them! And it's a job with a purpose - helping people like me. Who would have thought?!

I have been waiting for the counselor to get back to me ever since, but she must either be really busy or out with the stomach flu or something. The pessimist in me doesn't want to do any more bouncing around and whooping until the papers are signed and I know my actual job title, but I am this          ||           close to being a respected member of society again... after nine years of being a reject, a gimp, a leech.