What Side? – #medications #experiences #thoughts #truth #autoimmune #realities

Over the last few years I have read millions of different people write a million different relationship stories. The fact that successful relationships are so rare that they become extremely inspiring. Successful relationships are clearly the minority and very few couples will make it to their 30th anniversary; even healthy couples.

There are so many combinations and compromises and always, always their are realities. There is nothing truer than when they say “you have to kiss a lot of frogs to find a prince…” So you start kissing… and hoping.

This is the perfect metaphor for life with medications and how hard it is to find medications that ‘work’ or are at least helpful. There are a lot more drugs that won’t work and wont be your happy ending… And the side effects can be nightmarish.

If you are one of the unfortunate ones to be told you have Autoimmune Disease/s you will be given treatment options, none of which will cure you, but are designed to help stop your body attacking itself i.e. Slow down what it is doing so that it does the least amount of damage for the longest amount of time.

Your doctors (and I am not being unkind here) will start a guessing game of what might work. A medical version of spin the bottle. If you are really lucky and I mean really lucky, they will tell you possible side effects. Most don’t. Mine didn’t. Why? I don’t know.

I always read the bottle, I check the literature, I scour the internet…but, generally, they all say the same thing – May cause headaches, diarrhea, stomach pains, blood pressure, depression and every other thing under the sun. In short, they don’t know what it will do, or who it will do it to. What they don’t ever tell you is the emotional and physical journey you will go through.

Painful side effects can last for hours, days, weeks or never stop. Side effects can wax and wane. Side effects can be the mild type or can be worse than the diseases.  It can take you to the edge of oblivion and then may make you jump… or they can be helpful in the sense that they do more good than harm.

Calls to doctors and visits to the ER will not change anything and only return you to the point of confusion and frustration. There is nothing SIDE about the EFFECTS …and therefore they should be called risks, complications or effects. There should not be a need to down play anything.

You have only a few choices to make. Stop or keep going. Take or not take. Spin the bottle again or don’t play.

I don’t blame the players, I blame the games.

There are no easy choices because these are not easy diseases. I would just like to see that spoken about and acknowledged more by doctors and the entire health profession as a whole.

Often sufferers huddle together in internet chat rooms and support groups to give each other anonymous pep talks and discuss how frightened and sick we really are because their is no one else you understands or listens.

There is no easy answer how to cope with or prepare for side effects, and we all deal with different drugs in many different ways. I have learned to assume and expect nothing. I am very sensitive to medications anyway… even ‘mild’ medications like antibiotics and pain killers …so I make sure all my doctors are aware of this.

I try to prepare as much as possible. Before I start ANY new meds I make sure that I have NOTHING organized or important commitments. I make sure I have all the support I need for nausea, oxygen (yes, oxygen. I have Autonomic Dysfunction and CNS issues). I always make sure I have simple foods and electrolytes on hand and anything else I might need.

I don’t assume that after the first 24 hours that it means I am out of the woods… It can take me several days before some drugs start to take hold… some drugs are DESIGNED that way. And I don’t assume that side effects will end within days. I have had some drugs affect me for several weeks later, even months.

Medications are things that I have learned to take very, very seriously and I don’t really know what is going to work and want isn’t. I can only try and prepare myself for what might happen, yet still hope for the best.

The saddest, most heart breaking part of these Autoimmune diseases is when you have gone through so much, taken such risks, gone through the cruelest of side effects, all in the hope of relief only to face the realization that all the pain and suffering has not made any improvement at all. That is when the side effects become the sad effects. We have to fight the diseases AND the drugs; It can feel like TOO much and too overwhelming.

I personally don’t like that medications, and their side effects, are not properly discussed by doctors and specialists in this country, and often they are down played and dismissed. If we react severely or in a way that scares us or immobilizes us we have to either hibernate and learn to work through the pain and reactions or go to an emergency center; 9 times out of 10 the ER will send you home and tell you to contact your specialist if you are not in any immediate danger of dying on the spot; there is nothing else they can offer.

I empathize with all of you out there who have had your difficulties, your sadness, your struggles and your ‘failures’ with drugs and their effects. My heart goes out to anyone and everyone who goes through all these things in the hope of relief or … better still… remission.

Many of us get to the point where we may be inclined to resign ourselves to either continuing with meds or trying to achieve some quality of life without them and their effects. These are not easy decision to make and almost impossible to make in pain or battling relapses, flares or progression. You can only ever do your best and make the best choices you can in the moment. Follow your heart and listen to your body. Only you know what you can bare…  ultimately its you who must live with the outcomes.

I would like to see changes in the way we think and talk about ‘side’ effects. I personally would like to call them simply ‘effects’ or drug ‘risks’ since that is precisely what they are and downplaying them by calling them ‘side effects’ does nothing to changing the real experiences and repercussions we go through.

Gentle hugs,

Trish

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