Being grateful to yourself

As a volunteer and patient in my local lupus association, I have spoken frequently to patients and family members about their experiences as patients and caregiver. Last Saturday, a fellow para-counsellor raised a question that some caregivers had a bit of challenge to answer.. even I stumbled when I answered it!

The question was: What do you feel grateful about yourself?

I had a long list of people that I felt grateful towards, and I cited them out feeling thankful of all the loving people around me. However after I finished my answer, the para-counsellor said: Yes you are grateful to everyone else who lent a helping hand, but what about yourself? Is there anything to feel grateful about?

I gave it a good thought, and then I said: yes, I am grateful that I am able to live like a normal person, before I got lupus!

Then the next person was the husband of a new patient who had a hard time to think of something that he felt grateful of. At first he said that he was grateful that his wife’s condition is stable, and that there is a support group to listen out to their woes. When the para-counsellor reminded him the question was about whether he felt grateful towards himself, he paused for a while, and he asked “Being grateful means something that you are happy about right?” The husband was going through some emotions and I thought he was going to flip and say “What the heck can I be grateful about having a wife who’s got lupus?”

I actually was wondering if there is any point in pushing that question further, because I think it is very hard for new patients and their caregiver to feel grateful about anything. They need time. I still remember the time when I will cry whenever someone asks “How are you?”. Would I be able to give an answer if someone insist that I say that I am grateful with myself?

But thinking about it with hindsight now, I realised that I have so many things to be grateful with myself back then. I would not be able to see it then when I was sick. I am grateful that I worked hard and had a job that was able to finance my sickness even if my personal insurance did not cover it. I am grateful that my lupus decided that I could still do sports, once it stabilises. I am grateful that I do not have photosensitivity, at least not the type where I must wear long sleeves wherever I go. I am grateful that I myself have built good relationships around me that I get the support I need when I am ill. I take credit for these good things that happen to me.

I find this exercise to think about the good things that we take for granted in our lives and be thankful extremely important. Sometimes we get so much frustrations in life that we felt that as if nothing is working according to plan. We forgot about very important things that we are blessed with, and felt that life owed us more. It’s good to take a step back and see the forest for the trees. It probably is difficult especially if you have not done that before. It takes some practicing to start to takes thing into perspective and see what good luck you are blessed with. The para-counsellor suggested one thing that we should at least feel grateful for: that we are alive. I think that is a good starting point.

So what are you grateful with yourself?

What have you done in the last 6 years?

For some reasons, I had to reflect on what I have done in the past six years. Six years was a definitive milestone in my life. Somehow a discussion between colleagues made me decided to re-think what had I achieved in the past six years as I was starting to feel that I had not achieve much.

I made a little life chronology of my own as follows:

2013 Life milestone

2014 Took on a bigger project

2015 Same bigger project. Got Lupus in Dec 2015.

2016 Spent around 3 months to contain and get acquainted to my Lupus.

2017 Got into two very stressful projects (May and Nov), temporary change of department. Lupus relapsed in Dec 2017.

2018 Readings got back normal in April 2018. Changed back to the original dept.

2019 Lupus contained so far (up till early June 2019)

Looking at this, I think I am now more forgiving of myself.

Half of the time I was trying to manage to stay within a zone that my Lupus is comfortable with. Staying afloat was already considered the milestone that I could manage. Looking at the chronology above, it is true that a relapse happens when stress piles up. It does not happen immediately when the triggering event took place. It normally takes around 3-5 months for the floodgate to build up and then unleashed. When it relapsed, it takes 3-4 months to contain the effects of the relapse. It was a period of uncertainty, and a whole new process to accept why it happened, and then to not worry too much about it.

No doubt that at some point of time in the near future, I have to re-think about my future. For now, I think I need to give some credit to myself for staying alive. Cheers.

What about you? Do you think I should cut myself some slack?

Never thought I’d cry for a fictional animal, and here we are..

Ghost was the runt.. almost forgotten and left to die..

Jon was the only Snow amongst the Starks, neglected and had to take the Black to prove his worth..

They had a bond that runs deeper than any other Stark dire wolves would ever have with their Stark masters..

And yet, here we are.

This scene now breaks my heart more than ever.

Happy 3 years’ anniversary, Lupus!

Tasked as part of the writing committee for our local lupus association (Persatuan SLE Malaysia), I have no worries on the contents for our bulletin next year, because I know that in the event I could not get anyone to share their lupus experience, I will always have a trusted back-up plan: Myself!

Wow, I cannot believe that it is already 3 years since I was diagnosed.

It feels like yesterday, when I wondered why I felt this crippling pain every night, and how one week ago I was climbing walls, and one week later I had problems climbing down the staircase. I recalled the helplessness I felt when my insurance agent told me that eventhough Lupus Nephritis Class IV is part of the 36 critical illnesses, due to an untimely update, it is not covered under my personal insurance policy. I remembered that I felt like crying everytime someone asks me: “How are you?”.

Of course I also remembered the care from my parents and brother, the helping hands of my boss, the patience of my bestie, the warm wishes from my old school mates, the concern of a boy, and the encouraging words from my rheumatologist. Acceptance of the illness was not possible for me, if were not for the inspirational and life changing movie, Meru by Jimmy Chin.

It all made a difference.

My memories associated with lupus has already been stored in a corner of my mind, not something that I could recall instantly. I do not think that I consciously chosen to forget about them. Lupus has changed my life in many ways, most of them for the better.

Before I had lupus, I knew I was working very hard, and I felt like I had no choice but to work hard, just because. After I have lupus, I started to understand the meaning of  the fragility of life. I understood that I am not invincible, and life does not always head towards the direction you wish that it would head to. There are always unexpected twists around the corner. If you can live your life the way you wish to live today, do not wait until tomorrow. If you can talk to your loved ones, give them a few pleasant words, a smile today, do that to them today, and do not postpone it to tomorrow. Would I still have these realisation even if I did not have lupus? I will not know the answer to that question, but I knew that I learnt a lot from lupus.

I do not like the hospital, and I dread the long hours of waiting in the hospital. But I know that I will definitely be able to see the doctor on the same day or one or two days after. I learnt to cope with it. I learnt to see the positive sides of everything. I learnt to appreciate a long wait at the specialist’s clinic. I learnt to appreciate the help that the doctors and the medical staff provide to me. I learnt to appreciate the honesty and directness in the doctor’s communication. I have gotten to know many new friends, people whom provided support, and in return, I provided support to, throughout our lupus journeys. I have started reading a lot more than before I had lupus. Mostly because during the earlier days when I was first diagnosed, I had to be in the hospital on my own, so I had more time to read.

I am now quite comfortable with lupus that sometimes I almost forgotten about it. Medication and keeping track of stress levels are things that I do on a daily basis. When my stress level elevated too much, lupus will give me a gentle tap on my wrist, instead of a violent jolt. I suppose my lupus is a mirror of myself. There is always some quid pro quo arrangement between me and lupus. I do not push it to the edge, and neither will it give a big surprise and push me to the edge. We respect each other just like that.

I had a good one this year, so I would like to toast to my lupus for 2018! Cheers!

 

 

I hope I’m not pushing myself too much….

Time flies.. and I am in the exact period when I found out that I have a lupus flare-up last year.

Life has been hectic, work has been stressful, and my eyes are getting more and more sore as a result. Sore eyes is normally a direct result of stress. This type of stress arises when I need to conduct courses. I have no issues conducting courses, but I often worry if people would learn during my sessions, and whether my sessions will achieve the intended objectives. I sworn off courses in October due to the high levels of stress caused by my own expectations. Ironically, I had to conduct another two day course again this week. I was supposed to have several colleagues assist me with the instruction of the course, since I prepare most of the materials. And yet, 2 out of the 4 instructors that promised to help did not turn up due to compelling reasons. So I had to be there both days.

After two days, I am glad it is over. I could not help but think: everyone has got their reasons why they fall apart.. What about me? It was inconsiderate for those people who just go ahead told me that they could not make it, and then did not offer to find any replacement. Just because I am still alive, does not mean I need to shoulder the world, no?

This is not the end yet. This is the nature of the job I am in. After you finished saving one fire, there are more fires waiting for you ahead. There will never be real peace of mind, until the day you quit. I have not decided to quit though. I still need the insurance for my lupus. Haha. I could pay for my medical expenses, but if someone else is paying for it, why not?

I am due for another check-up the week after next. I really need to manage my workload for the next two weeks so that my lupus do not flare-up again and cost me another one year of same heavy immunosuppressant dosage again. I am used to eating medication every day, but it would be good if I could taper down slightly.

Everyday is another day. Everyday is a day we fight for our survival. Gods be good and please do not let my good old friend flare-up again.