|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.