This Lupus Life

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

That awkward feeling between well and unwell

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I cannot help but feel that what I am about to share is not something that I alone go through. I also cannot help but feel that many people who have never experienced a chronic illness, particularly one that fluctuates in intensity over a prolonged period (yes I know chronic means ongoing but some go on more so than others) may not understand and may confuse what I want to say for the whine of a girl who is suffering withdrawal from a big limelight.

What I want to talk about is the state of mental health that follows an intense whirlwind of questionable health such as mine has been these past two months.

I can’t help but think to myself, “Has it really only been two months?” It is hard to fathom really. I admit my mental health was shaky for at least six weeks before that, but I was otherwise coasting along relatively ‘as per usual’. The significant turning point did indeed occur at the start of August and I spent most of that month in a hospital bed somewhere between Fiona Stanley Hospital, Royal Perth Hospital and Sir Charles Gairdner Hospital.

QANTAS I have a proposition for your frequent flyer program! hint hint

Following my surgery I have been simply recovering. Twiddling my thumbs. Resting up. My mother even felt so comfortable this past weekend and the success of my progress that she left my side for the first time in what seems like eons. She went to visit her husband (my father) and have a weekend at home. This meant that I have had time to myself, and I must emphasise that my feelings are not a reflection of an absences from her company. They were there anyway and to be honest it may have been beneficial for me to have a brief length of time away from her to get my head in order. I was going stir-crazy!

When you live in such a state of flux you are forced to acknowledge deeper concepts in life that many people only touch occasionally. If you live in pain, you live in a different world. If you live with a disability, disease or disadvantage you are made to meet and work alongside your mortality. The frail nature of life and your body is an ever present guest in your mind and you not only are aware of it but you need to actively make accommodations for this fact in a case much more constant basis that others may realise.

This awareness can screw you up mentally because when you are going okay you live with the memory of when you were not. When you are not going okay there develops this suffocating hazy divide between the life you lived, the parts of it that are almost within your grasp and the small amount of achievable tasks. Perhaps you have heard of the Spoon Theory? Well I’m talking about the state of flux that people like me exist in.

To clarify what I am feeling is a form of depression. It is not so much a depression induced by the illness, or medications. Nor is it triggered by any one particular event, or lack thereof. I am not suffering from a slump caused by lack of inactivity or attention following the supreme amount of activity and attention I had been receiving.

Yes, I admit that it was full on. And now the dust has settled. And much of the feelings can be identified as being somewhat related to the fact that I do not have as much to do now. Both in my studies and in my private life. My projects and hobbies are all boring me, I had my licence held when I had my last stroke. I am still only working my stamina and physical strength up and it is a slow process. I wasn’t able to work while I was unwell so my finances are depleted.

Yet my depression is not necessarily triggered by any of this.

I can tell you what is happening and why.

I straddle two worlds and I took a step way too close to a third. The first world is that of My Life. The one I was born in and grew up in. That girl runs, drives, dances with her friends, stays up late on Saturday nights at restaurants, whisky bars, dance parties and friends places. The other is the place I was thrown into at the end of my teenage years. This second girl needs to move slower, plan activities  for the morning when energy levels are assured of being high, when pain is less likely to creep in, each outing needs to be followed with a day of rest and a good meal and absolutely no alcohol or heels can be considered. Finally, the last world is a lack thereof really. Once more This girl has had to make the decisions, have the conversations and share the information and feelings that come with the final progression.

Like an awfully stretched occy strap, the hooks have been let go and I have to release the tension without doing damage so it can be put to rest until next time. There is a reason those things are illegal now!

So I’ve been from a world of Can Do, into a world of Making Do, overlooked the balcony into What I Will Never Do.

Everyone is telling me that I can begin my old routines again. That very soon I will be able to get back to my old ways of life. But let’s be honest. If I got the lesions and the vasculitis once, I may get it again. More likely than not.

So just for now, I don’t feel that great.

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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 “That awkward feeling between well and unwell

  1. I understand what you’re describing. That in-between phase is one of the hardest in my opinion, because you’re seen to be improving physically, which is obviously a great thing, and people start to get excited. They tell you that you’re doing so much more than you were, and that life can go back to “normal”, but severe illness is traumatic. It changes us mentally and emotionally. I don’t think things ever go back to normal. I think we always carry this sense of it with us, particularly when we have chronic illnesses that do fluctuate. They can rear their ugly heads at any time, and when we are coming out of the critical disease management phase, that realisation often hits us really hard. I feel like I grieve for old me every time I experience a severe flare, and over the past few years, there have been a lot. I’ve been dealing with illness most of my teenage/young adult life, but there is still always a renewed sense of loss when something else changes.

    I think I’m rambling now. But, take all the time you need. It makes perfect sense to me that you don’t feel okay. I wish I had words of wisdom, but all I can say is that you’re not alone. Big hugs xx

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  2. Pingback: Rituximab – First Infusion, First Attempt | This Lupus Life

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