Living a normal life which may not be normal

Life is slowly going back to "normal" but deep inside me I know it is "not normal" as before.  Taking a cocktail of medication has become a new routine now.  Though still clocking an average of 55 hours for work, I know my energy level is not the same as before.... and even shopping which suppose to be a "therapeutic" event can be a tiring task now.  Tend to get infected by bugs and viruses easily since immune system is weak and probably due to immune-suppressing drug.....  Many times, I just feel tired, uncomfortable and sick but for no apparent reasons. It's a feeling but I find it difficult to explain and express it to others.   For others who do not know what I'm suffering from, it is probably my excuse to be lazy....   but even for my hubby who is very understanding and considerate, I think it is difficult for him to comprehend why I am fine a while ago but may suddenly feel unwell and tired all of the sudden.

Just like my hair loss problem.  It could still be very bad a while ago, but all of the sudden, it stopped with no apparent reason and started to go new hairs. Not something I groaned about but it just goes to show that things are pretty unpredictable for me now.   And now I am left with a new and unused wig made of 100% human hair.  Wonder I should put it up for sale now :))     

Viewing Lupus as a Positive Life Changing Event

I somewhat believe things in life happened for a purpose.  But as we are always forever busied ourselves in this world with so many demands and so many distractions, we do not always discover what is that purpose that certain things that happened to your life are trying to tell you.

Knowing that you have an unpredictable chronic illness like lupus can be a devastating blow to many. 

For me - it slows me down at least for a while - it let me discover or reconnect with many aspect of life - warmth, love, priorities in life, reading - to learn about many things - impermanence of life, diet, ..... and of course writing,  Things that were lost when I buried myself with the day to days demands at home and at work.

At least compared to the past, I am now more aware and appreciative of the things that happened to me and my loved ones - that's being present which is most important thing.   I should not delve in things that have passed and worry too much about future that has yet to happen. I need not wait for all conditions that I have set to be happy to be happy. What is matter most is the present.... and I should always enjoy my time with my loved ones. 

Without lupus - I suppose I would continue my life without much reflections  -  not with a life without a more meaningful purpose. 

Fear of Hairloss

It has been a crazy month since I went back to work in early Oct.  Things and issues just cropped up continuously.  While I tried to take things easy, it could be tiring at times and I also did not get enough rest.  Blogging has take a back seat for a moment. 

Doc increased my Azathioprine dosage to 100mg while he reduced my prednisolone gradually.  But then, not sure whether it was lupus flare due to stress (dealing with issues and office politics!!!) or not enough rest or due to increased dosage of azathioprine, I started to experience severe hair loss in the last 2-3 weeks.  For a person who have thick hair, watching your hair thinning at an alarming rate was not pleasant.  I told my hubby and kid that it was depressing to know that I might get bald patches in the near future.  But then, it was a case of no choice given my medical condition.  Doc advised that I should continue with the medication and the hair would grow back when the recent active lupus was better under control.....   Anyway, got to focus on what I have and not what I have lost.  So meanwhile am on active lookout for a nice wig.....:)).

Down with thrush

The last few days were tiring but fulfilling as I tried to resume my household routine given my increased energy.  I went marketing, prepared meals and fussed around the house.   It made me felt independent and useful again.  I started to work from home slowly so to ease myself back to work.  I took less rest compared to the past weeks.

Hubby was busy with his work and did not have time for his regular run. I think stress caught up with him and he fell ill with throat infection and running nose.  Since lupus patients taking corticosteroids have low resistance to infection and guess I did not rest as much too, I got a sore throat just 2 days after he caught the bug.  Immediately I could feel the difference in energy level.  I felt much weaker and have to breathe a little harder as usual at times.   I thought it was throat infection like what my hubby had.  But my doc said it was fungus infection, i.e thrush, which was likely to have caused by the prednisolone that I was taking.  Apparently corticosteroid is one of the medications that could upset the balance of microorganisms in the mouth and may cause thrush.  I have never experienced thrush before and so this was something new that I learned. The doc was cutting down the dosage of my prednisolone slowly from current 40mg to 30mg and then 20mg for the next 4 weeks.   Wonder how long it would take to cut down to 5mg and to none completely.  On the other hand, he was increasing my dosage of azathioprine from 200mg to 300mg and finally 400mg (which was dosage based on my weight).  Again, I wonder how long I need to take this medication since one of the side effects of long term consumption of this drug was damage of retina cells that could lead to blindness.  For now, I just have to take one thing at a time and see how things go.    

Meditation

Since I did not want to rely on drugs to solve my insomnia, I looked for non-drug sleeping aids.  I decided to try meditation since the sleeping pill given the doc was supposed to calm me down.  I have tried meditation by focusing on my breathing while I was in the hospital. But guess I was just too impatient, frustrated and worried then that it did not quite work out.

I read in MM Lee Kuan Yew' recent interview with NY Times that he started meditation a few years ago. He did it to calm himself whenever he heard sounds of his bedridden wife's discomfort.  And this was what he said “The problem is to keep the monkey mind from running off into all kinds of thoughts.  A certain tranquillity settles over you. The day’s pressures and worries are pushed out. Then there’s less problem sleeping.”  So I said to myself, let's try it again.  

I read more about meditation. This is one web page I thought is simple to read and understand about meditation and sleep.  http://health.howstuffworks.com/wellness/natural-medicine/alternative/natural-sleep-aids5.htm

Soon I figured out the key is practice and perseverance, especially for people whose minds are constantly in active mode, thinking and also worrying I suppose.  I started slowly, trying to stay focus on the Present like my breathing or the movement of abdominal area.  Like what I have read, it was difficult.  The mind wandered easily.  In any case, since I have nothing much to do and cannot sleep, I told myself just keep practising it.  If it's work, good for me.  If it's fail, I lose nothing since I can't sleep anyway.  I repeated the process and kept focusing on the regular movement of my abdominal area again.  After many repeated attempts over a few nights, I discovered my breathing began to go slower and my body felt more relaxed. I stopped when I felt my body was tired but relaxed enough.  I got into my usual sleeping position but did not get too anxious 'trying" to sleep.  My mind again wandered to many things and there were some I did not understand or have encountered.  Before I knew it, I finally slipped into my dreamland the night before!  While I still did not get to sleep through the night, I managed 1to 2 hours of quality sleep now. It's definitely a good improvement compared to the a few winks I have during the last 3 weeks!         

Look Good and Feel Good

It's hard to look good when your are ill and suffering.  Yet for lupus patients, based on what I have read on the net and experienced so far, it seems one common exclamation from people is "but you don't look sick!"  When my insurance agent visited me at the hospital while I was pancytopenia , I remembered one of thing he said was "you still look quite okay".  Not sure whether he really meant it or he said that to console me then!

Anyway when you are sick with low energy, many of us don't really care much about our appearance.  I was one of them.  My hair was thinning and messy, I dressed sloppily and I felt lousy.  After a few days at home, I decided that enough was enough. I trimmed my hair, resumed my skincare routine and took effort to choose my clothing when I visited the doc.  While I don't look 'fabulous", I look neat and I feel good. 

Guess when you feel good, self-worth and self-esteem increase and so is the energy level (of course with the help of medications!).  I am now able to do some housework and other stuff without the sense of uselessness or helplessness.     

Stress Triggered Lupus?

My close friend texted me to say based on her doc she saw during her regular medical review , lupus can be stress triggered.  So she advised me to stay relax not only for now but especially when I go back to work.   She understood very well that stresses, negative emotions like fear, anxiety would always ensue in the workplace.

I told her not to worry about me and joked that given the research and reading on lupus I have done so far, I am a quarter of a lupus' expert, if not a third. While it is not conclusive, stress seems to one of top triggers for lupus flare. Given stress means different things to different people and my GP once told me there would always be stresses in life, but the key in the degree is how the individuals manage or cope with these stresses.  For one who manages the stress well, that stress is motivational and healthy.  But for another person who is facing difficulty in managing that same kind of stress, then that stress becomes destructive.  So now I am kind of hypothesising personality or character such as those with Type A personality traits (i.e. perfectionist, competitive, impatient, time urgency, achievement-oriented)  can a predisposition to trigger lupus.  Since one is always so tense-up and work up, the immune system also follows.  So overtime, the system also gets "job" burnout, loses focus, slowly goes haywire and finally cannot even differentiate the foreign or own cells in your body!
      

Anyway, I cannot change the fact that I have lupus now.   But what I can do is to adjust my lifestyle and career to work around it positively.  Sometime I wonder my positiveness now is the side effect of prendisolone (since euphoria is one such side effect!).  I do not know for how long I can sustain this positive attitude, especially when lupus flares up and you are suffering from it. But I certainly do not like to make my loved ones suffered because of me.  Having been through 2 major illness within a short span of 6 months, you would know that when you are ill, the ones who are feeling more stressed may be your loved ones as they have to watch you suffer. 

I saw this quote somewhere that I cannot remember: "the happiest people are not those who have the best of everything but they are ones who make the best of those things that they have".  So to be happy, I just have to make the best of the current me! Love ourselves so that we can love others.