278 ~ My life jargon ~

“Drink more water”

“Are you drinking enough and how much?”

Understandably, an emphasized statement but also a pesky question that can sometimes be equalized to unsolicited advice.

I appreciate a gentle hydration or nutrition reminder because it stems from a place of pure love and care. During exercise sessions, my biokineticist would remind me to sip between each set of exercises.

However, with all the above being in its rightful place; it does not help the situation when a person hears you were “dehydrated again” or became hypotensive close to another “organ shock” and then holds you blame worthy or accountable for the dehydration because they are unaware of the invisible battle raging within and hasten to assume you have neglected yourself by not drinking sufficient water.

Instead, it only adds unnecessary fuel to the mental distress they may be experiencing from their bodies not being able to hydrate as necessary.

Trust me, we are not lazy to drink. Infact I keep fluids at my bedside and a top up bottle in the medicinal section of my cupboard as a fill-in.

Who isn’t tempted to lift a pitcher of water or any other drink to satiate their thirst? Who do you think purposely makes their body dehydrated only to suffer more from its consequences and then for their arms to be poked and needled in the search for a reasonable vein? No person who is mentally stable and sane.

Remember the term Isotonic Hypovolemia which was repeatedly discussed in previous chapters. Postural Orthostatic Tachycardia Syndrome entwined by Gastroparesis causes a chronic type of dehydration and like I mentioned in chapter 276; the only method of keeping the body stable and boosted is by administration of IV fluids – since those of us who have both conditions cannot drink two to three liters a day.

Each patient is different and unique as their fingerprint

Gastroparesis doesn’t simplify hydration. It’s not a plain rule of “just drink more water to prevent the body from shutting down”.

Early satiety, nausea, gastroesophageal reflux, the feeling of your pipe about to overflow or force out abdominal contents if one more sip is taken, and being resistant to certain antiemetic medications while others cause rebound reactions on your remaining symptoms. There are numerous factors that form grounds for inadequate hydration.

My only option is to choose between fluids or nutrients. Either I sip liquid which leaves no space for food until some time after. Or eat a small portion in order to recieve some nourishment but then again liquids can only be drank later.

If I decline an offer for oral fluids, it means I cannot digest more.

The dilemma stems from our bodies not being functional enough and therefore failing to take in satisfactory amounts of both. With the result being; we perpetually depleted either in terms of hydration or malnutrition or both in many cases like myself.

I am acclimatised to few toilet visits with little urination that it actually feels abnormal when I egest water normally after infusions which is a good sign. The strange ways chronic illness messes with us!

On the same note; dehydration makes IV access problematic. If passably hydrated, my veins are easy and a professional can spot the perfect one from an arms length. But when I peripherally shut down or signs of shock slowly appear, they collapse and not one dot of blood will ooze out after a needle insertion and removal.

So the paramedic mentioned; if they are caught in a situation between life and death and cannot gain IV access in the case of major accident trauma causes or expectant mums, their second recourse is an IO (Intraosseous Infusion).

Intraosseous infusion was also discussed in chapter 269

269 ~ A phenomenal miracle ~

An IO involves drilling into the bone marrow of patients who have a 3/15 orientation level – half asleep, drifting in and out of consciousness, but you still hear a scream or cry.

A port extends out of the connection set and they also administer Sabax Plasmalyte B. One does not want to imagine how excruciatingly painful it must be!

Alhamdulillah I am incredibly fortunate to have been saved from an IO when medics struggled for access and eventually gained entry into the one and only most fine and tiniest vains after several deliberative and professional attempts.

Although, the fine and tiny veins do not hold in too long because when circumstances are more acute and a person requires fast flow fluids along with a bolus of medications, pressure is placed on the vein and it often blows afterwards. Tiny veins situated at the wrist are not the best of places and they can be slightly painful which is not the general case but anyone will rather opt for that pain than hearing of an IO “come to your rescue”

The more times a person is poked in search for a suitable vein, the lesser chances one has to set up fluids. So my medics rule is not to poke excessively or hastily without a careful attempt at one that seems to be your best bet at entry because during the next round, the veins will collapse and then it takes weeks to heal.

Frequent and repetitious poking overtime also makes the veins lose their elasticity and thereby decreases a person’s chance of peripheral access gradually; which means you then reach a crossroad of bigger decisions such as a central venous catheter / other types of placement not recommended for prolonged periods due to infection / thrombosis especially when immuno-compromised.

Basically all these treatments are essentially in place to improve life quality and prevent or potentially delay organ damage resulting from the consequences of Gastroparesis but none are detached from specific disadvantages.

Each option has a list of pros and cons so the patient and his / her family has to discuss options with their medical team and opt for one that has minimal or low disadvantages and will be fully worth the associated risks.

Decisions can be weighty because of the clear-cut and unmapped turns fate can take, but through it all my heart and mind is reassured by a verse that makes the crossway easier to traverse

ان معي ربى سيهدين

Surely my sustainer is with me and he will guide me

For indeed, one among his beautiful attributes is Al-Haadi

Knowledge is empowering and this video was produced in August 2020 for Gastroparesis awareness month. Please watch / read and share for educational purposes. It enlightens people to comprehend the nutrition & hydration dilemma more correctly. In no way are we answerable to others but it’s crazy to think we have to justify dehydration / malnutrition not happening by choice / personal fault.

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 )

Facebook photo

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

Connecting to %s