Archive for fibromyalgia
Is it really fibromyalgia?
As I sit here, sick for the third time since November, I wonder if it’s really fibromyalgia I have. Could it be something else? This time it’s strep. I didn’t know that adults really got that, but I guess I have. It has been less than three weeks since I was sick with a pretty severe sinus infection. I woke yesterday alone in my apartment with a fever of 104. I was delirious. Luckily I was coherent enough to send a text out asking for help, which arrived. It’s such a strange feeling, having a fever that high. Everything feels like it’s in slow motion, and my hearing and speech were much different. I just don’t understand… I never used to get sick, and now it seems like I constantly have something. No fun. Anyone else with fibromyalgia get sick this often?
The Amazing Fibro Aunt
Yesterday, if you hadn’t heard, I finished my first week at a new job. Hopefully that will mean no more privileged, insensitive, ableist comments from bosses, at least for a little while. I’m really enjoying the new job thus far. I’m not just doing data entry all day and I’m gaining trust from my colleagues to undertake projects on the basis of my competence, not my age or the fact that I have not completed my degree.
One of the most difficult things I’m dealing with right now though is trying to raise my partner’s nieces and nephews that I mentioned previously. Don’t get me wrong, it’s immensely rewarding, but at the same time some times I feel like I’m crashing and burning. We had negotiated a bed time of 11:00 for the kids because it is summer, but my new job starts earlier and I have to be up by 6:30. My partner isn’t home in the evening, and I can never get them in bed with the lights out before 11:30. That puts me at 7 hours if I’m lucky. Usually though I don’t get to bed before midnight. Those of you with fibromyalgia or chronic fatigue probably know that that amount of sleep is not enough. In fact, it’s nowhere near enough. I’m subsisting on Redline energy drinks to keep me conscious until 11:30, which is making me incredibly nauseous all the time. Thursday, my partner’s day off, instead of keeping with my usual Thursday plans I was so beat that I just lay down in bed when I got home and slept.
Did I mention I’m out of Lyrica again and the insurance has decided that they’re not going to cover it? Because it’s not a “necessity”, so I probably will not be taking it anymore. It’s far too expensive without insurance. I hate insurance companies.
Trying to relate to the kids has been a trip, too. When they get angry, they lash out in ways that I haven’t figured out how to deal with. They say things they don’t mean and react violently (hitting each other, etc). Sometimes I just don’t know how to respond. I know it has a lot to do with things they’ve observed from others, but it’s just so hard sometimes. I have to say, for those of you who have kids, I have a much greater admiration. Raising kids is no easy feat.
Hope everyone is having a great summer.
Anniversaries and Racecar Beds
Well, Tuesday officially marked the four month anniversary of this blog. If you want to buy me something nice to celebrate, I accept all major credit cards, good red wines (bonus points for sparkling wines), and deep tissue massages. All jokes aside, I’m glad to be writing this and want to thank those of you who read this blog.
This week has been hectic. I wanted to have written Tuesday, but I have been so busy. To make a long story short, I now have four children ages 5 through 14 living in my house, my partner’s nieces and nephews. I got a call on Wednesday saying that we (my partner and I) were going to go pick up the kids because their mother was about to be evicted from her apartment and she couldn’t afford to feed the kids anymore–my partner and I had bought groceries and brought them over several times in the preceding weeks.
My head was spinning as I got off the phone, wondering where we were going to put all these kids. We had one “bed” in the house–ours, a mattress on the floor, and that certainly wasn’t going to hold six people. My mind was reeling when I got home, so I went on a search for bedding. By some miracle, we found enough. I found a mattress and box springs in my attic for one, my father brought over another, an extra from his house, we found a toddler size racecar bed in the garage, and an inflatable mattress to suffice until another actual bed can be brought over. We found three sets of sheets (we had to buy a set for the racecar bed), four comforters (including two that I had made myself!) and four pillows.
Setting it all up proved to be difficult though. Stairs, as you probably know if you read this blog, are my arch nemesis. I climbed the flight in our house way more than I wanted to that day, trying to get everything set up and ready. The room looks really cute though… my Ultram and I are just going to be BFF for a couple days while I recover from too much strain.
Thanks for your patience with me while I try to get settled into all of this. I appreciate your continued reading. By the way, I added a cool little widget so that if you don’t use an RSS reader that you can be e-mailed when I update this blog. It’s up at the top, sort of on the right side, so be sure to fill in your e-mail so you can know when I write a new blog. Otherwise, add me to your RSS reader and I promise I’ll start writing interesting things again soon. TGIF!
Here kitty kitty
I’ve been absolutely horrible about blogging since I’ve been back home. I’ve been so busy with the job hunt, catching up with people, trying to get the house in livable condition, family crises for both me and my partner… it’s been hectic. I intend to pick blogging back up though now that things have calmed down a bit. I have wonderful news though that may seem entirely unrelated to disability, but I assure you it’s not–I now am the mommy to three adorable kittens!
I have one more furbaby who’s not pictured here, a little black and white girl, but they are just sweet as can be. Research has been around for several years about how companion animals have a therapeutic effect on those of us who deal with illnesses and pain. My kittens have been wonderful for me–petting them and watching them wrestle around and play with each other has lifted my spirits, thus making the pain at least a little more bearable. I hope all is well for all of you out there. Thank you for the kind comments you all have left me. I hope you will keep reading, I have been thinking about this blog a lot lately and all the things I still want to talk about, so stay tuned for that. I hope you’re all having a good summer so far!
Blogging Against Disablism: The Right Not to Be All Right
“You need to lighten up…”
Oh, how I dread hearing these words. No, I don’t want to watch a romantic comedy, and yes, I do take myself very seriously. It’s the end of the year and I have more work than I can handle, and additional stressors have been added to the mix. I have run out of my Lyrica and am far away from my prescribing doctor, so I don’t even have that to take the edge off and I am TIRED. I need some actual rest. I am trying to deal with additional problems that are way out of my hands, and I’m then told that I need to lighten up. To take myself less seriously. I have not until this week considered the implications of these words.
It was through talking to a fellow disabled friend today that I began to look at things differently. People are right, I am cranky right now. I am subject to spells of crying, insecurity, self-deprecation, complaining, moodiness, apathy, anger, frustration, sadness, self-righteousness, hopelessness, and that’s just before lunchtime. And indeed I am sorry to those who bear the brunt of some of my bad moods. Still, I have realized that the comment that I need to lighten up was highly problematic on a number of levels.
First, it does not acknowledge my illness. I don’t think many would argue that when any of us are sleep-deprived, stressed, or in pain, we are likely to not be in the loveliest of moods. Chronically ill folks often deal with all three of these at once. To expect us to always be in a good mood or to feel like laughing and joking and having a good time is to not acknowledge our illnesses, to not understand that we are, in fact, tired and hurting and we have wants and needs when we don’t feel well, just like everyone else.
Second of all, it draws upon an issue many of us with disabilities have: the expectation of “normality”. It’s something I’ve talked about when dealing with Disability Services here (oh, and how that office could have its own blog post about the rampant ableism/disablism that exists, but don’t even get me started on that!); the expectation that things won’t come up at the most inconvenient time with our disabilities. Let me tell you though, flareups and fatigue are my normality.
I suggest then that my disability is not the problem, that perhaps it’s some others’ attitudes and expectations that are the problem. We have a right to not always be all right. We have a right to hurt and to cry and to be cranky sometimes and to be treated with neither apathy nor pity, but with understanding and patience. Accessibility is not and should not be just about ramps and elevators (though these things are certainly a lifesaver for me personally), but it should also be about addressing mental needs, emotional needs, spiritual needs.
Happy Blog Against Disablism Day.
Some Spoken Word…
“What’s wrong with you?” she says smirking
stoic staring
watching my broken body
slowly climbing eight cement steps
my own personal mountain
letting the heavy wooden door
slam in my face–
at my refusal to answer
“You’re too young to use a cane” he says
unfamiliar, uninvited
looking me up and down
as if assessing the damage
And I’m tired
of inaccessible buildings
nonworking elevators
and walking to
the furthest side of the building
to find the ramp.
But mostly I am tired
of you.
Of your adolescent curiosity
as you try to place me into categories
that don’t fit
Of not using the tools I need
because I can’t deal with
one more rude question
one more rude question
one more fucking rude question
posed by
you, southern sticky sweet
nice girl
concerned girl
cultured girl
charity-lovin’ débutante
but hey, your father’s brother’s mother’s
second cousin twice removed has a neighbor
who has one of those “cripple” kids
so you must really get it
But before you give me one more
tokenizing, stigmatizing
self-satisfying query
please
mind your own
mind your own
mind your own
fucking
business.
__
We did a spoken word workshop for my college poetry class. Spoken word is certainly not my forte in the world of poetry. For me, this was the result. Just thought I would share for those who are tired of explaining. Happy Monday.
Last thoughts on a school year
As I am finishing up my second year of college and preparing to transfer, I am left with a lot of mixed feelings. This last year and a half has been the most difficult for me health-wise as I’ve observed the deteriorating of muscles and tendons, of my mental clarity, and of my general sense of wellbeing. People ask me frequently what it’s like to be in pain all the time, and honestly it still baffles me. It baffles me that though I have gotten used to feeling this way, physically, I’m still not used to all the repercussions.
I have virtually lost my ability to do some of the things I was once able to do, such as climbing stairs by myself. In the event that I have to climb up or down more than two or three, I have to have someone to lean on, to balance most of my weight on, because the muscles in my legs get tight and spasm. As many who are disabled probably know by now, having to rely on others puts a person in a very vulnerable position. For me, a former significant other would hold this over my head, would shame me, would complain about how much of a burden my disability was on her.
This idea of the burdensome disabled person is not unique to relationships I’ve had, however. It’s something I have, if you’ve read my posted e-mail from disability services, felt from my school as well. It seems to be a common trend among students to be othered by their schools’ disability services offices, to be treated as if the students’ needs for accommodations are unreasonable or unwarranted or untrue or giving some sort of unfair advantage to the disabled student. Indeed my school’s inability to accommodate me, or to listen to my grievances when I’m not being accommodated, is one of the main reasons why I’m leaving–well, and then there’s the blatant classism, but that’s a story for a different post perhaps.
Any school, however, that that has demonstrated to me that it is going to allow their administrative officials say things that are insensitive and disrespectful to ability, class, race, sexual orientation, gender identity, belief, country of origin, or any other way a person identifies or is marked without repercussions is surely not getting my money next year. I’ll take my butt somewhere else, thanks!
Social absenteeism
One of the most difficult things for me in dealing with my disability is not being able to do as much as I used to. Not only that, but with my commitment to my school work, it’s difficult to make time for much else. It’s so disappointing to be invited to things and to have to tell people that I can’t because I’m behind on school work. I want to have a life outside of school work, but at this point in my life I can’t seem to do that.
It’s especially hard to explain this sentiment to others who can’t understand why I can’t go to things. Trust me, I want to go out and have fun. I just don’t have the time or the energy most days, and I’m so behind that I really can’t afford to have fun.
ButYouDon’tLookSick has an article on being a student with fibromyalgia, chronic pain, or chronic fatigue that is worth checking out not only for those of us living with the condition but also for those who know someone who does. The part about learning a language is especially interesting to me. I used to be so good at Spanish in high school. Once the fibromyalgia really hit me though, language in general has been of the utmost difficulty. Fibro fog–the term from which this blog came–has made me feel less intelligent. I can’t even remember simple words most days. One day I couldn’t think of the word “shirt”.
All this makes homework a much more drawn out process. Some days I don’t even have the energy to work on my homework at all. I guess I just wish that those of us living with these conditions could help people to understand that we’re not blowing them off, that we really just can’t do some things.
Relief
Finally, after a week from hell, I am back to blogging. I filed a complaint with the Office of Multicultural Affairs here against the way I’ve been treated by disability services, and they are going to set up some sort of a training, because evidently there have been several complaints from students about the way they’ve been treated by that office. Disability services isn’t even its own department, it’s tied with academic advising. I can’t even begin to address all the problems that are wrong with that. I know I will be gone soon, but I just really hope that things change around here.
Ableism from disability services
Dear [My name, which only has four letters, spelled incorrectly]
I am sorry you are still not feeling well. However it is not really appropriate for me to ask for an extension on semester work. We can confirm with instructors that a student has a medical problem and I know [the nurse practitioner] has seen you before break about your fibromyalgia; I did notify your two professors before break about that but your best approach would be to speak with your instructor directly. You can let her know that I am aware of a chronic medical problem that may be affecting your ability to meet your academic obligations but you’ll need a real plan for each of your courses so that you don’t continue to get behind.Sometimes I can be of help in this process by assisting you in mapping out each assignment or test and breaking down a schedule that is reasonable. If you’d like to meet to do this, just let me know.
Best,
Dean *.-
[My name, spelled incorrectly again]
I did email Professor ******* today to confirm that you have a chronic medical problem but I am concerned that you are waiting until the day before the deadline. It is best if you deal directly with your instructors about problem with meeting deadlines because I can’t compel extensions on semester work but I can confirm for them that you are dealing with a chronic condition.Were you able to meet the deadline or get an extension from Professor *******?
Dean *.
I wait until the day before the deadline because I’m not totally defeatist. I think that I can get things done, and then the fatigue hits. I can’t predict that. Disability services obviously does not really understand my disability works, or disability in general. I suppose it is important to note that disability services is staffed by able-bodied folks. Because there’s nothing totally problematic and paternalistic about that. Nice. Thanks for a whole lot of nothing.
