[ AUGUST 2016 ]
One night 🌉
*Me trying to sleep thinking*
Ugh! These legs are gone crazy.. they are so edgy & only when I move them the edginess stops. Once I stop moving, It’s this terrible restless feeling that takes over & keeps me awake.
No matter how exhausted I am, sleep is impossible.
At night I get into one side of the bed. In the morning it looks as if someone had a war with the duvet, cushions & everything on it.
These legs drive me insane. I shift wiggling through the whole bed because nothing else provides relief. It jerks & twitches uncontrollably.
In the morning I look like this
Lol but true.
You have no idea whether you’re coming or going because all you can do is think of having good sleep for one night.
Diagnosed a few months later as a condition called Restless Leg Syndrome ( RLS ) commonly associated with Peripheral Neuropathy.
To read more regarding it please click this link: https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/symptoms-causes/syc-20377168
After being told magnesium helps for constipation.. I began taking the miracle magnesium liquid posted in chapter 10. Within few days I was absolutely amazed to find the symptoms of RLS lessening. It provided the most amount of relief so i continue taking it regularly..
1 teaspoon a day is enough for me as 2 teaspoons cause diarrhoea. Now I hardly deal with the issue of needing to move my legs around & the muscles twitches etc have also subsided..
It comes up during flares but most nights are normal & calm 😀. I indicated towards this in chapter one: “my legs move around as if they haven’t ran enough when little”
One Friday afternoon my sister in law & I were chatting.. As we spoke I told her:
“Can you believe I’m beginning to feel the same electric-like shocks & tingling sensations coursing through the left side of my face.. how can it be?”
She was shocked!
Let’s see what happens, can call Dr in the morning if it does not subside I decided.
That night I could not allow the pillow to touch my cheek.. Speaking, brushing teeth, all sorts of things like washing my face & wind triggered off these symptoms.
Saturday came – it progressed to the right side of my face.
Sunday came – it progressed to my throat & upper chest area.
Monday morning i went early to see doc hoping to figure out what exactly is happening
Only to have him insist
“it’s a very bad bacterial infection in your throat”.
Yes, I had an infection. I took the antibiotics prescribed but no infection causes symptoms alike to the Neuropathy i already have.
Tried questioning but of no use. In his mind, he made the neuropathy better. Contrary to what my body felt.
One can wonder how some drs tell us what not to feel in our bodies.. As if we have control over it anyway. Confusing! When they confused themselves! Having no one to answer your questions becomes frustrating.
How can a bacterial infection which clears afterwards leave behind Neuropathic symptoms?!
That’s not common sense. Maybe common sense is rare like the type of my disease 😅
We requested a referral to a Neurologist but it was refused.
Few days later it progressed towards my head ( scalp ), neck, entire back coming through to the front sparing no portion of my body free.
My pain travels more than i do 😂
Like I said previously, pain types vary but the sensation of insects ( bugs, ants, spiders ) crawling atop / beneath the skin is something which tests all ones patience.
Scratching does not help, it makes the nerves more ‘irritable’ (as I say) so just gotta suck it up.. be patient until they decide to be happy.
I usually lay still & listen to soothing sounds or poetry. It helps drown out these sensations / sound of the pain screaming deep within during major flares / pay back times.
PAY BACK is the time spent recovering after being out, socializing, doing chores, walking too much etc. The time unseen to most besides family members living with us.
When the pain spread through my scalp.. Having hair became the biggest issue!
Trying to brush caused sparks to fly out as the bristles of the hair brush touch..
Leaving it loose caused the skin around my neck to become more poky as it reacting to the hair touching..
Tying it up with a band hurt.. If I used a hair grip my scalp pained more.. Making a plait made no difference..
It became a no win situation. Worst is feeling the sensations of insects run through the scalp.. I would feel like ripping my hair out from every root. It can make one go bizerk.
So I sat 2 months contemplating on whether I should? or should not cut my hair to make the burden easier 💇?
I always loved long hair, admired people with it & tried growing mines long.. At one stage it reached my thighs but because my growth is very thick, the weight became too heavy with the migraines so I cut it shorter.
When summer set into full swing, having thick hair made things unbearable so I finally made the decision of chopping it off! All that’s needed was some bit of comfort.
Told my family because it would be a big change on me outwardly.. They supported me fully, only sad realising I am in a lot more pain than ever showed & thought.. Knowing how I desired long hair.. I should be very desperate to make a decision of cutting most off.
It was not an easy decision..
I was the type who would take time to make different plaited styles not on special occasions but daily.. I miss that part but now nothing matters as long as I’m comfortable with my head being attached to my body lol.
Looking into the mirror properly after having the first cut..
I saw a new person!
Hey who are you?
Are you the same girl I know?
I do not recognize you?
Where’s all the locks gone?
I asked myself… And unknown tears stung my eyes.
Everyone cheered me up saying:
“It suits you.. Don’t worry you dont look too boyish.. You look cute.. We like the cut.. You look so nice“
One brother said:
“As long as you look more like me now, be happy. I have a twin sister instead of a sister”
Trying to lighten up things for me. Though it worked lol. Made me forget about missing long hair!
Once I felt the difference of weight & pain I could not be have been happier!!!
Up until now when I have a cut every second month… It’s as if a HUGE burden is taken off me. The pain relief obtained is difficult to explain unless someone has Small Fiber Sensory Polyneuropathy.
It no longer matters how I look, rather how I feel. The less hair the better. My hair dresser thins it out before cutting it short.
All thanks here goes to a very special family lady who comes home to make it easier for me instead of me having to go out..
She understands exactly how I need it cut, I don’t have to bother about something going wrong or looking odd, she does it with pleasure never making me feel like I’m troubling her,
She takes her time, does it carefully & does a thorough job, no slap dash whatsoever!
May you recieve tremendous reward for always being at my “hair service” (lol) & providing sincere help.
The youngest child & sister who’s brothers possess more hair than her or the same length sometimes 😂😂😂
While in hospital June this year (2017) I could not help being extremely fascinated seeing a psychiatric dr who came in to check up on the psychic patients.. having the exact same cut as me.
Only hers was kept spiked up lol. It was so alike that a new shift of nurses came in confusing me to be a dr while walking to toilet past the main ward desk.
I took this pic of the back of her head. Sent it to our sibling group asking them:
“Do you know who’s this???”
Reply: “Its you. But when did you take that pic because your hair is over grown now?”
They had a good laugh when I explained it’s a Dr, not me.
(This turned into an entire hair post which was not my intention initially starting the post.. However I felt it necessary to elaborate because people do not understand that excess hair can be really painful)
These pictures can perhaps give an idea regarding the types of pain experienced.
After realising I am not receiving proper answers with the first dr when the final stage of pain progressed. I decided to take a second opinion..
Thus, began the first of many visits to 8 different neurologists.
A path that proved the hardest for 16 consecutive months…