7 ~ Crawling to the bathroom ~

PAIN.

Physical pain

Pain types vary

Pain fluctuates

Pain changes who we are

Pain changes our outlook

Pain makes us compassionate, considerate & kinder in a different manner (not that we weren’t before lol)

Pain is part of our “new normal”

Chronic pain revolves around “the normal for us” & “flares”

When pain becomes a continuous part of life 24/7, you learn to adjust, push through & “live life” including it in everything. If we have to wait for pain to end, we’ll never have a productive life.

Depending on the severity level the pain is on, there are times we are able to push through.. There are times we’re unable to do anything at all… There are also times where we fervently pray for it to disappear & end.

Usually we smile, behave & appear normal with pain but there are other times (for instance during flares) where we become sensitive, emotional, snappy, frustrated or kinda grumpy.

There are times in pain where we find company distracting & therapeutic.. But there are also times where we do not want to go out nor do we wish to see anyone visiting us (no offence).

By nature I am a person who enjoys company unless I’m experiencing a severe migraine.. (Though sometimes I stop taking visitors in between because I do not get my required amount of rest)

When I am in extremely severe bodily pain you wouldn’t gauge. Apart from the fact that I won’t make an effort to get out of bed & will ask for things to be brought to me – food in bed eating time… I will become more silent or if I try having conversation, it’ll be somewhat disoriented…

I had people judge me saying “she’s lazy” etc..

Your judgement for a condition you do not live with, your sin 😝😂

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That fateful Monday evening when the first pain struck, I did not think it to be anything serious or long lasting.. My mind does not gallop fast or think the worst of a situation.

Although the pain was intense & severe that I dropped the tooth brush down & stood for a couple of seconds wondering what on earth is going on??

I must have sprained a muscle or over worked it with recipes I had been trying out from a new pastry book.. But thinking that to be a weird notion as well, I got done in the bathroom doing everything left handed, came out, rubbed a muscle balm & bandaged the area thinking it’ll settle down..

Remainder of the week continued in such a manner, the pain did not ease.. It persisted & intensified at night making sleep a non existent dream.

(Now with progressive heart failure I tire easily, can sleep anytime, sleep however long & still remain tired. Chronically tired 😂)

[ 24th April 2016 ]

Sunday evening – 7 days later – I felt the exact same shooting pain beginning in the thumb of my left hand referring upwards exactly as it begun in the right hand..

Now??? This is crazy! I don’t understand how I am unable to use both hands because anything I do worsens it..

The nature of it is rather unusual. If I touched a spoon, opened a tap, wore jewellery (touched stainless steel or metal) it shocked instantly 😮😮

If I wore a glove to hold a spoon to eat, it shocked through! This has never happened before!

Sometimes when I touch people also I shock them 🤦‍♀️ I’m like cables of firing faulty electricity 😂 maybe distribute some to Eskom then they’d be able to go about less load shedding in winter 😜.. lol lame joke.

These symptoms mentioned are intermittent.

[ 29th April 2016 ]

5 days later – while in the shower I felt the same pains beginning in my toes referring upwards both legs..

This time I said to myself “you are imagining or hallucinating. It cannot be so.”

As those thoughts roamed through my mind, it intensified. So I said: “Heyy but it is actually real, since when do I imagine such things?”

That night I awoke for toilet & vividly recall crawling to the bathroom on fours because walking was too painful. My feet throbbed and burned as if they were being roasted – a feeling I did not experience before, not even with fever aches… Going down on my knees and shuffling was somewhat easier than placing a foot flat onto the floor..

I also began using a wheelchair due to intense pain not weakness. Sometimes after walking a particular distance my body becomes heavy to move so a wheelchair is needed..

(After adapting – I stopped using the wheelchair due to pain. Now due to my heart rate sky rocketing & breathlessness, I use it for long walking distances – Tachycardia will be related at a later stage)

Talking about showers 🚿 my skin became unbelievably sensitive.. The water flowing on it hurt even though we have gentle shower heads.

The sleeves or pants on my skin would cause pain. If someone touched me it would pain. Basically any little thing done or touched outwardly would cause various types of pain.

(Don’t touch!!!)

Dr Yasser Motala is the first person who was around for work the very same weekend it progressed towards my feet & legs. He administered Chiropractic treatment & explained it to be a type of nerve pain that may occur between periods of remission & relapse.

When he returned to Port Elizabeth I was referred to Dr Mihaad Seedat & she continued treatment but unfortunately to no avail. It made me feel worse instead of better.. Sitting in the car aggravated it as well.

Keep in mind, both Drs are wonderful Drs in their field of profession. I’d recommend people to them anytime. But when it comes to the nature of Neuropathy, each individual’s type is different & what works for others may not work for me. What works for me may not work for others.

I’ve seen few individuals on a Neuropathy support group & people with Vagus Nerve Disorders stating chiropractic treatment is assisting them tremendously. So trying doesn’t harm. It may be in someone’s luck.

[ 17 May 2016 ]

The entire left side of my body went into a complete spasm.. I was unable to turn or move towards my left. The next day an appointment was scheduled with Dr *so & so*.

[ 18 May 2016 ]

Based upon the manifestation & relation of symptoms I recieved a diagnosis!!

For the first time in my life I heard the term

“Hyper Aesthetic Peripheral Neuropathy”

Lol I recall myself repeating it silently so as not to forget & jumbled a few words in the beginning 😂

“An Atypical case”

Because a normal case presents with symptoms beginning from the feet upwards not hands ✋. It takes months & years to progress from one portion of a limb to another.

(Many drs at a later stage accused me of self diagnosing my illnesses from Google, but not once from the onset did it occur to me that I should Google. My hands were in such severe pain, I seldom used the phone.. It layed switched off in the cupboard until many weeks after the diagnosis was recieved, I went online to search for support groups)

An invisible, chronic illness.. Meaning we always “look normal & fine.” People come to visit, many visits are meaningful & uplifting yet others impact in a negative manner..

Instead of trying to understand what the condition is all about, some people would say

“You seeking attention because you don’t even look like you have a flu”

Well, that’s because even though we don’t look sick, I’m not a person who neglects myself. I take pride in the way I dress even if it’s spending the day in pyjamas or simple comfy clothing. Chronic illness has made me love myself more, not neglect my overall care in the process.

Its irritating having to be told constantly how well we look. I have to remind myself to take it a compliment & I’m glad I don’t look what I feel like because if I did I’d scare people away..

Kindly replace the word “well” for another.

From a hand pain thought “ordinary” to heart failure exactly a year later…

Inner peace, contentment & joy filled my soul when I let go…

When I did not focus on where I thought I should be now & what my life supposed to look like..

Instead, accepted & celebrated, for all that it is..