Joy lies in the fight, in the attempt, in the suffering involved, not in the victory itself


Friday, May 20, 2011

like playing solitaire in a cyclone

Sick, sick, sick.
Tired, tired, tired.

After three weeks of 100% attendance, I had yesterday off work. Just could not go. I know I don't need to explain this to anyone from the madosphere. Anxiety, depression, anger, self-injury, self-inflicted post-binge comedown...we've experienced it all, eh?? And there are any number of reasons to go back to bed and pull the covers up over our heads rather than get up and go to work. Sigh. I'm just so damnably SICK of being sick, physically and mentally. I'm completely over it. I sometimes look at people I know who have strong work ethics, positive attitudes and iron-clad constitutions and I just want to kill them!! Jealousy is overwhelming. I want to be really well, not just a little bit, copingly well. I want to have true energy, not fake caffiene-induced bursts of effort.

All this whinging does nothing, so I shall stop it. I went to see my doctor on Monday after work and he showed me the results of the blood tests, which aren't good. Not only am I in all likelihood suffering from a lupus flare, I am also extremely anaemic and possibly bleeding internally (therefore causing the anaemia) from an ulcer or bowel polyp. Polyp is such a funny little word. Anyway, I have to have a gastroscopy and colonoscopy, but can't get bookings for them until late July (and that's in the private health system). So I just have to wait, and take massive amounts of vitamins and minerals in the meantime hoping to raise my iron levels. I will see my rheumatologist Dr Paul sometime in the next couple of months to update him on this latest information and see if he has any insight. A couple of other areas of the blood count were abnormal too, in ways that can represent a lupus flare.

In some ways, lupus reminds me of Borderline Personality Disorder. It tucks itself away, hidden somewhere deep inside so that you think you have it licked. Then when you relax, pat yourself on the back and congratulations for a job well done then BAM! It comes back full force, and makes a total fool of you. I can fight it, and strategise against it (immunosuppressant, anti-psychotic, NSAID, anti-depressant, mind/body medicine, DBT, CBT, therapy, meditation, rest, blah blah) but in the end, it never, ever, ever goes away. Not permanently. Not for any length of time. Just long enough so that you take your eye off it for a second, and thus give it chance to take over again. I'm just so damn tired of having to be VIGILANT.

Yesterday's "mental health day" off work was made marginally better by the arrival of a fantastic parcel of zines I bought from Sarah at This Lunatic Express. I think most of my followers also check in over there, but for anyone who doesn't know Sarah, she's a great writer and has experienced a lot. Her zines cover all aspects of her eating disorder, BPD, bipolar, anxiety, hospitalisations and more. Reading them made me admire her even more, she is brave and honest and I need a kick up the ass for feeling so sorry for myself when people like Sarah have a lot more to deal with than me. Get her zines, people. Read them. She rocks.

This morning I got up and showered and dressed, then laid back down in bed. "I can't go today, honey" I said to Neil. He hugged me and said "You need to go to work, babe. You need to try, even if you come home during the day if you feel bad." I didn't know whether to slit his throat or hug him back. "Otherwise, it just gets too easy to say "I can't" and no longer try," he continued. Hating him, loving him, knowing he was right, I got up and went to work. He's right. For me, it does get easier the longer I avoid things. And I need to work. Financially I just can't afford to go back to the way things were unless it's completely 100% unavoidable. Today it wasn't 100%. Tomorrow, who knows...

(Title from Darren Hanlon's song "People Who Wave At Trains". I like to wave at trains, by the way. Not local, public transport trains, but definitely long distance holiday-maker trains. When I travelled across the US on Amtrak trains I loved waving out the window to the little kids who waved to me. Good times.)


Pixie said...

Oi, you.

Firstly there is nothing wrong with sharing truthfully how you are feeling right now - it is NOT moaning. Moaning is those strong, energetic people who break a nail and go on all day about it. You have genuine reasons to want to talk about all that is going on. And yes, you do want to kill them, the buggers. As for Sairs, yes she is all those things you said, yet she still has bad times like the rest of us. You, young lady, are one of the bravest people I have had the honour of knowing. You may not feel brave right now, and you may want to scream 'MAKE IT STOP', and it seems like so many of us have felt like that recently, but, my word, you have everything to cope with. What's all this, such and such has it far worse? What's that quote.. something like, Every person has their own courage, and is betrayed because they seek in themselves the courage of other people (something like that said by somebody clever ;-) ).Look at everything you are trying to deal with and look at you working and moving and all the rest. Lil, sod the day off, you are doing amazingly well. I don't think you can see all that you have to face and deal with and get on with. As an outsider, I can, and I think you are remarkable.

Yes, Neil is dead right. I remember the cycle I got myself into at times when I felt I had been away from work and it just felt like I couldn't go in. But sweetheart, you have got to listen to your body too, and right now your body is poorly, so don't feel bad for wanting to mentally and physically rest and pull the covers over your head.

So bloody well shout and scream and share and cry and laugh, and don't think for one second that anybody here doesn't see what is happening to you, regardless of that constant smile you wear and your incredible ability to pull out all the positives, and do not doubt for one second what an absolutely amazing person you truly are.

Love you, Lil xxxxxxx

Pixie said...

Oh, forgot to say, go check your facebook xxx

Borderline Lil said...

Pixie-love you are the bestest. I'm snivelling right now from reading all the lovely stuff you said. Thank you for believing in me my friend xx

Miz PRN said... sorry to hear about your recent lupus flare. My friend had SLE and all the complications that come with it...not a nice condition at all.
...such that it sounds like your mental health day yesterday was legit, and called for. It's enough to be dealing with a mental illness or physical illness let alone both!
...P.S if you're unable to go private with your gastro/colonoscopy and it's urgent, there's always the public health system?
...Congrats on going back to work, though I know how easy it is to not want to go!
Hope your're feeling better soon. :)

Sairs said...

Sorry to hear about your flare up and that you are feeling under the whether. I am so happy that you got my zines and that you liked reading them. Thanks for the good rap too :) I hope you start to feel okay soon. Feeling sick really sucks.

Anonymous said...

I hope you start to feel well very soon. You're in my prayers. Also thanks for all the positive comments! You have great advice and insight.

Linda said...

The analogy between BPD and Lupus is a good one. I feel the same with my Hep C. That's rough that you can't get in for the tests for over a month.
I understand what you're saying here and genuinely hope you get better soon Lil. Having no energy just makes life all that much more difficult. Whining is good for the soul. We get it out and then we can move on. God bless sick days anyway.