This Lupus Life

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

Packing is a Chronic Pain

2 Comments

I like to think that having a chronic illness isn’t that much of an issue. It doesn’t seem to interfere with my day-to-day life so much. I must admit I choose to not let my ill health get in the way, or get me down, so perhaps it is more of an interference than I realise.

The biggest complaint heard about people with chronic illnesses is that they become a recluse to a point as they live through their conditions. Much of this is due to the unique nature of each ailment. More still is due to the fatigue that comes with carrying the burden and reality of the various chronic symptoms. Finally there is the consequences of juggling a typical life with the requirements of a constant patient.

A simple meal away from home must be juggled with medication taking times. What you eat and drink with the meal must be considered in regards to the illness and medications. This means some venues may not be viable.

A spontaneous overnight stay may well be out of the question. If you don’t carry your morning medication on you, the alternative would be an early rise to return home while there is time to resolve the situation. For me I know it can be tricky, as I need a sleep aid, and I have to wear an eye mask as one eye doesn’t close. Others may need pumps or machines to connect to.

Sometimes the illness is the spontaneous issue, not the event itself. Migraines, seizures or allergic reactions are all severe ailments that come about at unprecedented opportunities. The handling of these are all vastly different and the outcome relies largely on the location at onset and ability to recover afterwards.

In other times there are fortunate souls, such as myself, who have the chance to mostly plan in advance how to manage my health. As luck would have it I know mostly what may happen and am able to carry the necessary treatments with me to prevent or handle my own misdeeds. That is only on the provision I am well informed of events beforehand so I might plan.

With the recent Rituximab treatments I had for my Cerebral Vasculitis, as well as taking up the new immunosuppressant treatment Mycophenolate, I knew things would change. Over the past few weeks I have had highs and lows. I have lived like the average person, with the average immune system. I have had colds, cold sores, allergies and gastrointestinal issues.for the first time in my life, some of these ailments have come upon me, believe it or not.

Now I am planning a holiday. More so than that, I am leaving in the wee hours of the morning. I have authorisations to carry the drugs in my possession, and have duplicate quantities in case one set goes missing. I have ‘aids’ for every possible scenario I have come across in the last few weeks, as well as in case any of my ‘big issues’.

Let’s be honest, I have a few!

So I’ve packed. It was fun. It was insightful. It made me feel like a basket case hyperchondriact.

Let’s see how wise I was. I’d like to hope I have over planned. I really do.

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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.

2 thoughts on “Packing is a Chronic Pain

  1. Wow! I love this blog! I totally understand this. When I finally start writing about illness, I will write about packing and travelling under these circumstances. Your pill picture looks similar to all the pills I pack. So much extra weight haha, so sad!

    Liked by 1 person

    • Thank you Charlie. I do not travel often, but I think it valuable to include as it shows the polar opposite of my predicament can be possible and how to manage the two worlds. I will definitely read your opinions!

      Like

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