This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Ask Me How I’m Feeling

4 Comments

cactus

This week has been full of much singing, dancing and laughing. This week I have been reflecting much over how I handled life whilst recovering from the migraine episodes from 2013. I have discussed at length the full medical escapade that was my Summer from a rather impersonal point of view. Now I want to talk about the emotional and mental side of things.

Firstly, for the status update. I am no longer on steroids (prednisolone) and my first nightmare is over. I am no longer on the first attempted migraine treatment (topiramate) and the unsuspecting torture is past. I am taking Hydroxychloroquine and Effexor, as I was before all this until I hear differently from The New Team in a month when I have had some more tests, seen some more specialist and my body has returned to its normal rhythms. So, you are wondering, what does this mean?

My hunger has returned with gusto, thankfully! I sleep deeply for eight or nine hours each night and I thank God everyday for this blessing more than any other. My confusion is gone and I can concentrate once more without dizzy spells or wonky walking and shallow breathing. This in turn means I have a chance to recover my university grades before this semester goes down the toilet. I have been madly reading all my texts again, making study cards for exams and taking notes on all the lectures from the beginning, since what I had before was not really legible rational. SUPER pleased we are only half-way through and there is still time to salvage without me becoming a crazy lady.

Some things are not so easy to recover, and I do want to share something personal. I have always been aware that my moodiness due to my health was an issue, and I have tried hard over the last few years, as I may have commented on, trying to resurrect the relationships I have damaged and reflect on my behaviour as I mature. I forgive other for their hesitancy, I have a dark sense of humour, a black wit and find the lighter side of morbid topics. Life has dealt me a difficult blow and this is how I choose to cope, through bouts of positivity sparkling with gothic-style bitterness. We all have our coping methods.

See people don’t understand what they cannot see, and for the first little while they find chronic illnesses a novelty and love ‘How much of a fighter you are!’. You may be a an ‘accessory friend’ to talk about in conversations. But slowly it becomes tiring. You can’t go out at night. You can’t eat much. You have another cold.  You can catch up if it is indoors/ away from the sun/ where no one can touch you/ if they visit you. You always cancel at the last second, or just forget to show up. Basically you become a bore. You can see when they start to feel this way because their eyes glaze and their questions are vague, if they ask about you at all. Eventually they stop contacting you, except for the message over the internet on social media sites for your birthday. It’s not their fault. They are healthy. I really don’t mean to sound bitter, I am not. I say this with a smile and an accepting tilt of my head to show I know it is important that they focus on their own life and not worry about us invalids. But it must be understood that it is no wonder why people with chronic, deteriorating or invisible illnesses build their walls so high and strong.

I have spent so much time over the last few years retraining my negative behaviour and manner. The yoga was part of it, counseling and opening up communication with people around me was another. Exploring my studying options, reading and cultural activities provided me with insights. Learning to accept myself and others, regardless of differences was likely the most important key on the path to finding patience and my true self-esteem. I do not make excuses for my health and illness or the medications side-effects as I feel it is a weak excuse. I do not excuse my gender or hair colour. These are all things that are the way that nature intended them and I need first to accept them and then learn how to work with this. Thus I also do not apologise for my behaviour. I am now a grown woman who does not take illicit drugs or drink alcohol so my actions or made clear-headed.

So when I met a fellow recently who showed a supportive nature, that he was caring and attentive and shared many of the same interests as me, I was instantly drawn in. I felt unnaturally comfortable with him and it was easy from the first moment. I knew I had to fight my instincts tooth-and-nail, and work out a way to trust in letting a new person see my vulnerabilities and get to know who I am.

Enter TOPIRAMATE.

Never have I known a more unfair and a more underhanded instant of sabotage. To know that it was inadvertently my fault, as a side-effect of the medicine, was a blow to the guts.  Yes, people will say nice quotes about “the right one” and “when it is the right time” but all I can think is can’t I catch a break???

I am a fighter. I need to be to deal with Lupus. I also hd a good feeling about this fellow, which is why he made it past the first date! I feel like I should fight for this, but I also feel like I can’t be sure the next medicine will be any better and who am I to hold some one back? Who says the crazy wasn’t too much the first time? It seems unfair.

Give me the simple life.

Advertisements

Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

4 thoughts on “Ask Me How I’m Feeling

  1. Wow. I have no words, you’ve said it all right here in your post. Thanks for the share and I look forward to reading more of your blog.

    Like

  2. One step, one day at a time! I appreciated your post and your positive, fighting attitude! 🙂
    Thank you for visiting my blog!

    Like

  3. Your post has left me with tears in my eyes. I do not have lupus, so I can’t necessarily relate to that particular pain, but I felt every word you said, especially about “restraining negative behaviour” and “wall-building”. I build better walls than a contactor on a new construction.
    I can’t talk about my illness because it only makes the few that remain near me uncomfortable.
    You are a fighter, as am I, and one day….one day….our sadness and pain will be replaced with happiness and joy.
    I have to believe that.
    Thank you, for this beautiful post.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s