Double Whammy

I’m in the midst of what feels like of a double whammy – both my Sjorgern’s and Fibro are raging right now  – and of course I’m behind in EVERYTHING to begin with and getting further behind each minute. So I really haven’t felt up to posting.

A little girl in a sun bonnet circa 1973

When life was simple, the world was good and a kiss could make things all better.

I also haven’t been posting because frankly, I’m hurt and I’m angry and I’m sad and feeling completely worthless and defeated, and I really don’t feel it’s fair to subject you to that right now. I can’t even begin to put into words just how bad things are. I’m not just talking physically, I’m just talking all the way around. Frankly, it doesn’t even seem like it’s all real because this kind of stuff doesn’t happen in real life. Things are supposed to get better when you have faith and you have people who love you. Only I guess they don’t.

Any way. That’s why I’ve been posting pictures. Trying to put something happy where I should be. So today I offer-up something to the Throw Back Thursday Gods…going way back to the early 70’s…When things were simple, and a kiss could make things better.

Advertisements

Down the Chronic Illness Rabbit Hole

I feel awful about not keeping up with things here on my blog. I decided late last summer that I would be posting at least twice a week and that I would be talking about things that would be helpful and hopeful to other people with chronic illness. Then winter rolled around and I started down the Chronic Illness Rabbit Hole.

You know what I mean, when all the little tricks you have to pull yourself out of a flare or pick yourself up don’t just do not work, they seem to make things worse. The times when you feel like you’ve finally reached the bottom and feel just as awful as you could ever feel, only to wake-up the next day and discover a whole new level horrible. I feel like I’ve been traveling down this particular rabbit hole for months. In reality I skirted the edge for a while, started to fall and clawed my way out a few times only to have the ground give way underneath me again. But as I’m sure anyone who’s been in the hole will agree, it doesn’t matter how far you’ve fallen or for how long, it’s always too long.

Logic would say I should call my doctor. The one who told me it was vitally important to immediately go get my hip x-rayed, then didn’t follow-up for more tests after getting the results for 3 weeks. Which was more than 2 weeks ago and I’m still waiting to find out details about the additional tests. (I’m guessing it’s nothing important – and since it’s gotten better, and worse and better again it really might be inflammation/flare like I tried to tell them.) If you’ve read about my experiences with the new doctor you know I don’t have a great deal of trust in her or her office, this latest…hiccup…fiasco…call it what you will…is not helping.

She hasn’t seemed at all interested in anything to do with my Fibro. She hasn’t really asked about my quality of life or interested in how I’m doing in a total sense. I did fill out a questionnaire at my last visit (granted it was my 2nd with her practice and we have no background or relationship yet) that asked some quality of life and general wellbeing questions, but she never followed-up on them. Her intern didn’t follow-up on them. Why have me go through the exercise of filling out a whole page of questions about ability to walk up and down stairs, fatigue, etc. and then not even look at them?

So why should I call? I’m not having specific or steady inflammation in any particular joint (though there is some wide-spread inflammation), and thankfully I’m not in a ton of pain. I’m not having specific symptoms that she’s found acceptable in the two conversations we’ve had. I just feel like hell. 24 hours a day. No energy. No strength. Just hell.

This isn’t really about her or her office. Maybe it should be. Maybe I should call. But this is more about that nasty little hole you get sucked into when your illness rages on and on and on.

Part of you tries to rage against it. But we know that doesn’t necessarily make things any better — more often than not it makes things worse. Part of you wants to crawl deep inside that hole and hide until you feel better — but not doing anything doesn’t help in the long run either, it just makes it harder to crawl out of the hole. You get up each day and do the best you can to survive and try to figure out how to get out of the hole.

Here I am, not the farthest down I’ve ever been, but definitely further down than I’d like to be. All I can say is that I’m doing the best I can. My focus has to be taking care of the day-to-day things like getting my kids to school  and making sure they’re fed each day and in bed at night. As much as I want to reach out, to be part of the world, sharing with others and helping others going through the same things, I really need to spend my energy (or my spoons if your familiar with the term) on taking care of the absolute our needs and try not to feel too guilty about all the things not getting done.

I’m interested in hearing from you. What do you do when you find yourself going down the Chronic Illness Rabbit Hole? Share your thoughts below in the comments.

Feel Like A Slacker

I feel like such a slacker right now. I have had a horrible week. Scratch that, horrible few weeks. Not every day has been bad, just the majority of them. At one point we had to call my mother-in-law to come help with the kids while Hubby was working.

I’ve been getting the bare minimum done. Most of the dishes are getting washed. Dinner is getting made some nights, other nights the girls have to wait for their daddy to get home at 7 pm to make dinner (poor hubby has an hour commute each way on top of a pretty physically demanding job and has had to make dinner as soon as walks in the door). Some email gets read, not enough are getting written. I’m trying to stay on top of the job search, but I know I’m missing things. And, as I’m sure you can tell, my blog has been a little less…bloggy.

Cocker Spaniel mix asleep on couch

Wish I could kick back like this and not feel guilty about it.

I shouldn’t feel bad. I have a good reason for frick’s sake. I mean I had to text my husband while he was down stairs watching TV to come upstairs and help me out of bed so I could take my contacts out…I fell asleep while my daughter was doing homework and when I woke up the house was dark…This is not exactly normal behavior. I shouldn’t be beating myself up about all the stuff I’m not doing.

But I am. Just like so many of us with chronic illnesses, I tend to measure my day by what didn’t get done rather than by what was accomplished. Despite my best efforts to be kind to myself, I keep getting caught up in the thought I should be doing more.

I’m praying the tide turns soon and I start to feel better. I’m basically without health insurance until the end of November when the coverage at Hubby’s new job starts, so I can’t go see anyone. Even if I had insurance I don’t know who I would go see. The appointment with the new doctor was…interesting – I don’t know that I want to see her again but I’m afraid to switch doctors after something she said. Frankly I think the stress and anxiety over the fallout from that appointment is causing a serious Fibro flare which is really strange for me. Usually I have major Sjogern’s flares where my knees or ankles or everything swell for days or weeks and have lots of little few day Fibro flares. This would be the first serious long-term Fibro flare.

I know I need to relax and take.care of myself. But just for most of with chronic illness, that’s easier said than done. I’m going to focus on doing the best I can and try to celebrate my accomplishments instead of feeling like a slacker. I have a feeling it’s easier said than done.

Looking for Work with an Invisible Illness

As luck would have it I had my first in-person interview since loosing my job in February during Invisible Illness Week. My health issues were definitely a factor in loosing my job. And, to be very honest, I’ve struggled like most people with chronic health problems with the questions about working. How long will I be able to work? And, at times, how much longer can I keep doing this? How much more can I take?

Woman peaking over a Hire Me sign

Do you think they’d get the hint? Image courtesy of Stuart Miles/ FreeDigitalPhotos.net

But being rather stubborn, and having a family to support, I’ve been looking for work. I’ve had some requests for additional information, a few phone interviews, but this was the first real interview I’ve had. It’s the kind of job I have been looking for. It has all the things I like to do, involves my strongest skill set and is in the location I’ve been trying to get to. This could be the job I have dreaming of for years.

Only I have to wonder if this is the right time for it. I had hoped that without the particular work environment I had been in, without the tough commute and without the long hours my health would improve a bit. No such luck. If anything think I may be getting worse. My days seem to be non-stop fatigue, brain-fog and pain.

So I go into the interview after having been flared up for a few days, and I should preface this by saying I got a strange vibe about the interview from the first email I got  from them, thinking that this should be interesting. I was right. I forgot the names and versions of software I’ve used, I forgot the title of books I’ve read. I’m pretty sure I didn’t make sense a couple of times. In general, I sounded and acted like someone with an invisible illness.

You know what? I don’t have a problem with that. I do have invisible illnesses. This is who I am. This is what happens when I’m tired and stressed.

The thing is, you can’t exactly look across the desk at the person interviewing you for a position where the ability to communicate clearly and professionally is a high priority and say, “Sorry, I am having a really bad case of brain fog right now – can we take 5 minutes? Oh and my mouth is so dry from my Sjorgern’s flaring that I may lose my voice, can you get me a glass of water? I’d get it myself but the fibro is killing my legs.” Okay, you could say it but you and I both know that you would never hear back from them. You probably wouldn’t hear from anyone else because it wouldn’t be long before people started to hear about it.

Artistic photo of pills

Maybe it’s time to be realistic.

I don’t know what to think right now. Obviously I didn’t do well in the interview (I don’t think they did either, but that’s a different story for another time), and I’m really not confident I could perform in the position that I’d want to. And that is so scary. As someone who was always praised for their work ethic and dedication and their ability to communicate, the fact that all of those things are basically shot to hell at this point is just gut-wrenching. And knowing that basically there is nothing I can do about it makes it even worse.

This is the time to be realistic and reevaluate where I am physically, mentally and emotionally and what is possible. I have an appointment with my new doctor next week, and that will tell us something too. Then I have a may have to change tactics a bit. It could be the kind of work I look for, it could be something that allows me to work from home. It could be having to take a step that I’m not necessarily mentally prepared for.

Just like everything else with invisible illness, I’ll take it one step at a time.

Never Ending Flu

Cheey tissue box

There are some illnesses cheery tissue boxes don’t help

People have asked me what having an auto-immune disorder is like. The best way I can describe it is like having a never-ending flu.

Some days it’s like coming down with the flu. You feel achier and more fatigued as the day goes on. Your brain gets fuzzier and you the only thought you can seem to keep straight in your head is the one about climbing into bed and staying there for a few years. Your body gets heavier, your joints get more painful and each step gets harder to take until you finally fall into bed.

Some days are like the worst days of the flu. Your body feels like it weighs a ton. You’re so tired and sore that even lifting your head takes an incredible effort. Your joints burn and ache. You’re so fatigued that you almost have to remind yourself to breathe, but you feel so incredibly miserable that you can’t sleep. All you can do is lay there and try not to be too annoyed by whatever is on TV because you’re too tired to be bothered to turn the channel. It doesn’t really matter because you can’t think clearly anyway.

Then there are the better day. The days you feel like you’re getting over the flu. When you feel like you’re getting some energy back. Some (not all, but some) of the pain and the inflammation in your joints is gone. You can think a little clearer. You have a bit of pep in your step. You feel a little more like you…a little more normal, whatever that means. These are the best days I get, there are no more “healthy” days for me, just little bit better days.

Maybe it’s a little simplistic, but it’s the best explanation I can come up with.

I’m curious. How do my fellow Spoonies and Chronic Babes describe what it’s like to be sick? We’ve heard the well know explanations and descriptions, but what’s it like in your daily life.