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


Monday, May 2, 2011

we wear our bruises like watermarks

Thank you so much to be darling friends for your comments previously. I wish I could say things have improved. They are made markedly worse, at the least complicated, by the re-appearance of my lupus in a hideous whole body flare that threatens to render me inert. (FYI - Lupus, or Systemic Lupus Eurythematosus is an autoimmune disorder, whereby the body's immune system attacks itself, eg: organs, joints, skin, rather than attacking external threats like bacteria or viruses. It's usually hereditary and incurable).

I'm not foolish enough to gloss over the connection...mind/body medicine is one of the things that cured my fibromyalgia (kind of similar to chronic fatigue and sometimes connected with lupus) and helped control my lupus, so I know that what I think and feel is reflected in my physical wellbeing. The fact that I've been struggling with some emotional issues has left me fatigued and rundown, and a perfect target for a lupus flare. So far it has shown up as joint pain (particularly my hands and right knee), constant nausea and neck pain. I'm lucky, in that my degree of lupus is very mild (so far). I am medicated for it, which helps, and thus far my autoimmune system hasn't attacked any serious organs. I know people who have kidney and liver or heart disease from lupus, and people who have lost eyesight and mobility. My paternal grandmother died because of it.

Anyway. I am now feeling even sorrier for myself, and struggling even more to maintain a positive outlook. I am even tireder than I was when my problems were "just" mental/emotional. The way I beat fibromyalgia and controlled my lupus in 2005 when I was first diagnosed was through fairly strict mind/body medicine - predominantly meditation and diet, as well as the medication.

I just don't think I have the energy it will take to get well again.

Last time I was ill, my mental state was strong, I was in (what seemed then to be) a supportive marriage, I was barely working in a casual job. Basically, I had a lot in the positives column. seems like things were just starting to take shape for me in my new work/home, and BANG, life throws me a curve ball. Ain't it always the way.

Neil is even more concerned than before, now I'm even more bedridden and exhausted and complaining. I have to make an appointment to see my specialist and find out if my medication needs changing. There really is only one medication for lupus (Plaquenil) but maybe I need more, or something new might have become available. I was so complacent and cocky... I thought I had the lupus whipped.

My mental state has kind of taken a back seat at the moment. I'm feeling okay, coping mostly with work and getting on well with my adorable man. Big picture is kind of blurry. Finer points are kind of rough round the edges. I haven't felt BPD-ish for quite some time, which is mostly (I think) due to the basic CBT/DBT I have ingrained in me, as well as the medication and a strong relationship based on honesty and boundaries. But the scary part is, I feel like I may be slowly unravelling. If I have lost control of my physical health, is my mind the next thing to go??

Title from Perth band Birds of Tokyo's song "Plans".


Pixie said...

My beautiful girl,

I am SO sorry to hear this. It must be such a horrible blow. The body certainly does catch up eventually. I know a few people with some of these things, and I myself was question marked over fibromyalgia, and vaguely diagnosed with CFS (they are reluctant to diagnose anything over here). My Mum has CFS too and has flare ups. I think mine certainly was connected to my emotions, and can see that my Mum's is too, though she won't have it.

You are one heck of a strong woman and have worked so so hard to get your mental health in a good place. It doesn't mean your mind will go next. Right now, your body needs nurturing, love and care, and that is priority. If the mind follows, well, that can be dealt with if it happens.

There is nothing, I feel, you cannot do, girl. I think you are just amazing, and admire you so so much. You want me on a plane? I'll get on one! I can help Neil fetch you things and when you get pissed off you can throw things at me and call me names!!

I am ALWAYS here darling. On here, on fbook, and on my email, which I will make sure you have on fbook inbox now. DO NOT HESITATE.

PLEASE, take it easy and be very gentle on yourself. Let yourself heal. You are too too important.

Loving you, Lilly-Loo. Big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Linda said...

Lil,I am so sorry to read about your flare-up. Your energy will come back with rest and meditation. Believe this and it will.

I also have a couple of autoimmune diseases--Hep C and Lichen Planus. Just yesterday I came out of being so very sick for over a week. It is so odd to me how these things go as quickly as they come, and out of nowhere and into nowhere. My Hep has gotten to the stage where after 40 years, I am now dealing with the repercussions, and so I try to accept that I will have more periods of "being sick" or having no energy. I may do the treatment when a new drug comes out this fall, but have not made up my mind yet since it involves being sick for a year and the odds of a cure for my genotype are low.

I'm telling you about "my stuff" with the hope it will help you somehow in the knowing that this last week I was so terribly sick and now I am doing well again. My understanding of Lupus is it acts much like Hep C and also comes and goes with regard to the symptoms.

What helped me the most this last time was knowing it would go away. I'm sure you know the best things to do but hopefully hearing from others will help. I hope you are better very soon Lil!!!

Anonymous said...

I'm very sorry to hear that you're not feeling well. Be strong - I know how challenging it is to balance both mental and physical health symptoms. Sending you lots of love and best wishes for wellness and happiness. *hugs* Feel better! :)

Sairs said...

I'm sorry to hear that you aren't doing so well. I hope that you can see your specialist soon and that they can help you get your lupus under control again. I also have a medical condition outside of BPD/Bipolar that can cause me chronic pain and am on medication for it. It sucks doesn't it. I find mine tends to flair up with stress, usually work stress but occasionally from sleeping in a bad position. I hope you feel better soon.

Lisa said...

:( *hug* I wish I could do something for you. Hopefully your team can help. Let me know if there is anything I can do for you.

ps- i love the title of this entry