Sunday, October 6, 2013

so she stared me right square in the eye, and said, “everyday I wake up, hoping to die”.

 
“I suffer now - and suffered then - from moods which kept my head under water (so to speak) and only allowed me to see the things subjectively without enabling me to consider quietly the words of the other side, and to answer them as the words of one who I, with my hot-headed temperament, had offended or made unhappy.” —Anne Frank
 
Things that you can do to help me through my recovery:
-Reinforce that what I am saying makes sense, and patiently wait for me to finish expressing an idea before you offer advice or respond at all (in hospital I would often use sentences like ‘if that makes sense...’, ‘I don't know if you get what I mean but...’ and ‘I don't think I articulated that very well, it's such a mess in my head’. The night nurse, Alistair, would always reply; ‘yes, that sounds completely reasonable and I understood what you said perfectly’ or ‘I can see what you're saying and I understand where you're coming from, but [insert clarifying question here]’)
-Admit that you cannot possibly imagine what it must be like to be me and feel how I feel (my Nepalese psychiatrist, AP, said something to me a few weeks ago which literally ground my reality to a hault...he said, ‘I am so sorry that you feel this way so frequently and relentlessly. I can safely say I have never felt like that in my entire life’). It was extremely comforting to hear my pain validated like that. Although phrases like, ‘I understand how hard this must be for you’ or ‘I know I can't imagine exactly, but [insert story of recovery here]’, are well meaning, they often elicit an angry response from my depressed brain, (something like ‘how dare they think they understand how hard it is! They could never perceive how much this physically hurts or how hard I have to fight just to stay alive!’), or a passive and slightly sarcastic response from rational me like ‘yeah I should totally try [insert slightly insulting therapy technique such as meditation or going for a run]'! I'm sure that'll really help!’
-I am often treated as ‘lesser’ by my health care professionals, even when I try extremely hard to be well informed about my treatment and the theories behind my condition, and have very different familial support to most people my age. It is as if the role of these professionals, as well as their age and perceived life experience, gives them a position of power over my life (little do they understand that this closely mimics my Dad's attitude and I do not appreciate it at all, and furthermore, it's my life and everything they do or say directly affects me). Please do not add to this frustration by treating me like my illness makes me any less cognitively functional. Even if I cry, speak irrationally or seek reassurance for mundane things, there are increasing moments when I am completely lucid and in control of my actions, and if the role of power is skewed by even my friends and family, it can be extremely hurtful
 
Help me to remember that I am so much more than my illness
 
 
Other more practical tips that might help in specific situations:
-Cooked dinners, baked goods or easy-to-cook packaged food of any kind are always appreciated (I am still not up to meal preparation)
-Regular and structured catch ups are the least anxiety provoking and therefore, most enjoyable for me at the moment (seeing Lou every Wednesday for dinner and Lex on Mondays for a movie are often the highlights of my week because I can properly “plan to panic”...something which my GAD forces me to do daily, but is far easier to implement when the situation is familiar and variables controlled)
-Walk along this mental illness journey with me; become informed about an aspect of my illness, ask questions or open the discussion up for debate (nothing worse than the elephant in the room syndrome). Knowledge is power; and the best way to fight this terrible infliction is together
-Acknowledge physical manifestations of my illness (eg. tremor in hands or legs, rapid eye blinking, walking oddly to avoid cracks, sudden movement to switch on/off lights or touch wood or even fatigue) with comments such as ‘god, that must be really irritating for you!’ (because I assure you, it is!!!). Sometimes even touching my hand or acknowledging that you are aware of it is better than awkward glances and sideways looks
-If I am crying, no matter how many times I say I don't want tissues: give me some fucking tissues. Otherwise I'll get snot everywhere and probably look ridiculous. Before hospital I tended to avoid tissues to try to save paper (seems silly right?), but AP soon saw to that...cups of tea or coffee are also highly appreciated and give me a few minutes to breathe and relax alone while the person is making it (my therapist Susie and her receptionist Steve have made me so many teas that they now know my preference (black tea with soy milk and no sugar)). Also, if I ask ‘do I look like I've been crying?’, please say no. White lies save lives, baby.
 
I promise I'll come back soon, please be there when I do.
 


1 comment:

sabine cara said...

i wish i could bake you banana bread & deliver weekly all- vego pasta dishes to save you a night's stress.

i seriously wish that so much right now.
in the mean time: if you ever get round to feeling like cooking, i suggest you schedule a day where you cook for the week. it could easily become an enjoyable part of your routine. that way, you're cooking in bulk but you can also rest assured you'll have (yummy and healthy!) meals for the remainder of the week :)

take care dear, and always remember: you are not your illness. (i wrote this on my bookshelf in thought of you.)

xxxx much love forever and ever.