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| CC pic by Barclakj |
The thing that has always surprised me about my illness is how hard it is for me to get a grip on my symptoms. So often, trying to identify what is going on in my body, even if it screams, has the feel of looking through the wrong end of a telescope. For example, yesterday I was speaking to the admin assistant for my CFS doctor who is writing up a medical report for me so I can claim some disability to make things a little easier. She was asking me questions about symptoms for the report - did I have cognitive issues, did I have fatigue, did I have pain.
I answered no on the pain, even though right at that very time my shoulders were aching like a bastard. The grand laboratory experiment that is Susie's body is always fiddling around with something, and lately it's been taking two different forms of folate. Many CFS patients report doing well on them, as do MTHFR people, who often lack the ability to process the standard form of folate in vegetables and food. After a consult with Dr Google I came across some people who report having problems using folinic acid, which is one of the forms of folate in this latest experiment, along with 5-MTHF. And so after a few days of achingly sore muscles, I think I can safely say that giving the folinic acid the boot is the subject of tomorrow morning's experiment.
It gets confusing.
So when I was answering my doctor's assistant's questions, I answered no on the pain and then today had to email her and explain that actually, on second thoughts, I do have problems with pain. I don't have problems every day with pain, but I do a lot of the time. The report is a worst-case scenario of how you feel on your worst day. So the pain symptoms go in too. I feel so weird and silly when I do this sort of thing.
Even though I answered yes to every single symptom she asked me to report on, I still have this problem with applying for disability. I feel like people are not going to believe me. As part of the assessment for disability I now have to go and see a Centrelink GP. And I'm scared that they are going to think I'm skyving, that they aren't going to think I'm debilitated enough because on my very good days I can work part-time and study part-time and walk the dog. And I feel scared that they are going to think I'm skyving because I feel relatively happy at the moment. As if I should be on the point of suicide in order to get disability.
It's a strange situation.
Yesterday I was doing some transcribing work, and I was wondering why it was that I was struggling sooooooo much. Concentration is a big problem with me at times, and yesterday was excruciating even by my ADD standards in terms of being productive. Did I take into account the fact that my shoulders were aching harder than they have in a very long time? Not really. I mean, I was aware of it, but it was like the synapse in my brain between cause and effect was old, dangly and stringy, like some Christmas lights from 1943.
Weird, that. It happens all the time. The strange distance between that which is so close to you that you sometimes cannot recognise what has crept up on you until you're on the couch. Even while in another part of your brain you are achingly aware of it, and it is filling up all the spaces that clay and paragraphs would if that particular symptom wasn't there.
Like I said, it's weird.
So for those of you reading here who are struggling to manage yourselves, to understand what's going on with your body today, and to pace yourselves with whatever your health is throwing up at you, take heart ~ it hasn't become second nature to me either. Not even after 14 years.
ooph, i SO identify. today is a good day. i went for a walk and had a spring in my step, wasn't fatigued, don't have a headache or muscle aches or general malaise, though i'm SO tired at another level. but two days ago i could barely climb the stairs into my apartment, like my legs just couldn't get enough oxygen. but i've gotten so used to pretending that i'm ok, or used to a new normal that isn't so normal, that i don't know that i notice or would name much of what's going on.
ReplyDeleteso thanks for writing this. as i delve deeper into my stuff, i think i need to get much more aware of what is really happening so that i speak honestly to doctors and caregivers.
Hey, Jenn. Ooh, a walk with a spring in your step and a relatively-pain free body - bliss. That dual "okay on one level - exhausted on another" thing is bizarre!!
DeleteIt's good to know that others can relate to this ... well, you know, not good because that means you're having to experience it. But it always helps sharing our stuff. Gives me courage to know that others struggle in the same ways and areas as I do :)
It is so sad that much of the population can't/don't relate to such ailments. Many people are "affected", but still so little is understood. Perhaps because it isn't in the media as much and therefore people aren't educated and informed, I'm not sure.
ReplyDeleteSo, often sufferers are considered malingerers. I hate that. Just because there isn't a visible symptom like a tumour/broken limb/blood/deformity, doesn't mean there isn't suffering.
It's the same with depression. A very real concern. Yet, people have been told to, "take a happy pill", or, "look on the bright side". Or myriad other flippant comments.
My mother was driven to alcohol at a young age and suffered the rest of her life with dependency and deep depression. I grew up in an unhappy "home".
Doctors saw her as 1. a cash cow and 2. a malingerer, and treated her abysmally.
It does little to help one cope and, importantly, to help one heal.
It is important, I think, to reach out and be able to connect with others who relate.
It can be a lonely existence otherwise.
My heart goes out x
Aww, thank you, Vicki :)
DeleteAh, the thoughtless comments of ignorant people - I guess they are never going to go away no matter how much education people receive. I wonder why that is? Is it because people have lots of ignorance, and it takes a lot of work to turn your ignorance around (like, admitting you were wrong, for a start)? Or do people just not give a shit? Or are the jealous? My friend, who is quite debilitated, has had people saying to her, "What do you do all day?" and to me that indicates a sort of whistfulness and a bit of jealousy. People see the extra time that sick people have while neglecting to see the extra health within which to enjoy it. I think some people really, really have problems with putting themselves in someone else's situation.
Oh, your poor mum. That's so sad (and sad for you, too). It's just too easy for people who don't have issues in a particular area to judge those who do. Easy to play the moral card, or the lazy card, or the just try a bit harder card. When in fact, I think a lot of time it's just the genetic luck of the draw. Victims of circumstance.
I dunno if I am just willfully naive by merit of my own particular genetics, but I can't help but feel that humans are better than this sort of thing. If we didn't have to live in a cuththroat world where we are forced to compete against each other, where "lack" is manufactured by the stupid fucking systems we live under, would we be better people? I think so.
I hear ya.
ReplyDeleteAnd no, you're not naive. Just cognisant of the inherent goodness in (most) people. And, thus often (like me) frustrated that "the system" is doing its best to divide and alienate the populous, which creates fear, paranoia and mistrust.
We need community!!
Yep, it's achieved its aims awfully well. 'Cause we all hate each other's guts, or at least we seem to. I hate it. There's enough to go around for everybody.
DeleteI have been struggling with that idea of community for so long. I desire it on the one hand, but it scares me on the other.
Community. It can be scary, as it has had dubious connotations.
DeleteI find I wish for it more as I get older. Even though I've always been a "lone wolf" and very much guard my privacy, there are times when I just wish people were more considerate... and friendly - where has THAT gone? Everyone seems so insular these days.
Even though we are all so "connected" via the internet, we live in an ever increasing world of dis-connect.
Hmmm pain in shoulders and elsewhere, many weird and changing symptoms including pyroluria and methylation issues, brain fog, etc etc... have you considered you might have lyme disease? I have been down all the same pathways but at base it was lyme. It's hard to diagnose, hard to treat when it's chronic, but the difference is, you do get better instead of slowly worse and worse. Anytime I see someone with many things going on healthwise, my mind begins to throw around the idea of lyme, and you know what? A few times I've been right and other times I still think I'm right but the person has yet to take on the idea. I get that, it's hard to think when you are sick, and scary to consider, and most docs will put you off, but please do do some reading and have a think. I's still be sick if I hadn't given the idea a go, and os would my husband who had it too. xxx http://www.lymedisease.org.au/
ReplyDeleteHi Keechy. I've certainly considered it. It's on a long list of things to test for when I have the money. At the moment I'm dealing with the MTHFR mutation angle. When I get that somewhat under control I am definitely going to look into Lyme. Thanks for sharing.
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