MS is best regarded as an illness that requires compartmentalised thinking, much like the mindsets of men who have the uncanny ability to tuck different events; mental and emotional changes, and professional and functional happenstance in their own version of small shoeboxes with very tight lids.
Multiple sclerosis, the childishly nagging, bullying and slow version inhabiting my corporal time/space continuum is so irrational at times, it just makes for unimaginable breakouts of sarcasm filled with Irish-sounding words of wisdom. In more politically correct grammar, I often feel like replacing myself with newly created brain cells to replace those that somewhere down the line, must have gone missing after being targeted by biological and chemical warfare.
That warfare, in even better sounding grammar, are pharmaceuticals.
But I have no right to complain.
Thanks to big pharma, I am walking.
And, I am talking.
I am, perhaps, annoyingly more talkative than some would like, yet, I am still talking.
Fact is, fifteen years after my first MS symptom, I haven’t crossed the red line of possible progression yet to SPMS that is meant to be there a decade or so after diagnosis. As you can imagine, this is either due to pharmacological fortuity in my central nervous system or to an overly optimistic characterisation on my part of current clinical manifestations.
Nevertheless, what cannot be denied is that trigeminal neuralgia has worsened, as did some of my sensory issues.
This is where the dividing of symptom treatments can either become a blessing or a curse.
When MS began forcing early retirement upon me, I was rather slow taking that suggestion seriously. Trigeminal neuralgia attacks and fatigue were throwing constant spanners in the works with other afflictions following suit, compounded by stress and worrying about work.
No sleep led to more frequent and increasingly painful warning signs, and the vicious circle turned into a squeaky-sounding square wheel that only caused more hardship.
Much-needed, so, were:
More neuropathic pain medication.
More side effects.
More sleep needed to fill up the open spaces left by side effects keeping me awake.
Without a cure
With first-line high-tech disease-modifying drugs (DMT) only changing the course of your MS-progression and not the symptoms, treating them can be a game of hit and miss, trial or error.
You know how to sleep, you surely do. But, at some stage in your disease-process, you receive new medicines that are used for other illnesses, yet they also help certain complaints in people with multiple sclerosis.
For example, one treatment meant for nerve damage due to diabetes, shingles, fibromyalgia or focal seizures, it also reduces neuropathic pain in people with MS.
Another drug meant as monotherapy or adjunctive therapy for partial epilepsy seizures, is also prescribed as nerve pain for trigeminal neuralgia (facial pain).
Third example, medicines for depression, which funnily enough, also help with neuropathic pain whether you’re depressed or not.
Does the dividing-into-shoeboxes idea begin to stick?
You literally are asking your body to accept different treatments for one and the same illness. Granted, your neurological illness has 50+ different symptoms associated with it and without a cure to undo MS inside your CNS, you cannot but treat each separately.
When I picked up my bag of medicines from the pharmacist yesterday, I was once again thrown by my own need for each of them. A paper bag filled with 12 different symptom treatments results in 29 tablets a day for the next four weeks, including a daily Glatiramer injection DMT.
Twelve different kinds of tablets are on regularly changed half-permanent prescription lists after lots of trial and error phases and can be thrown off at any stage due to side effects or non-effectiveness.
Twelve. Each one for a very specific reason in their matching little shoebox.
Twelve. Each with the possibility of being moved to an even smaller shoebox or the bin altogether.
For those that do not have any kind of treatment like sound sensitivity, you store what you know in another shoebox and take it out when that particular sign rears its ugly head.
My body is indeed undergoing enhanced, necessary chemical and bio warfare and it is a daunting idea being dependent on this much medication. I therefore understand that for some, it is hard to grasp why or whether someone could or should be taking so much medication.
The only answer I can give you, or anyone else who asks if their symptoms can or should be treated conservatively with a litany of tablets: I never imagined this would still be the way my MS treatment would be 15 years after first experiencing a relapse. An Occam’s razor type of common sense however states that when pain gets to a stage where you feel like giving up on life, your body will simply decide for you, and you will find a doctor come what may.
When I look back on the period between my first signs and eventual diagnosis and treatment, I still see myself running from doctor to doctor and hospital to hospital to find an answer to why I was having such incredibly painful stabs in my eye and ear, as I knew that this was above mine and Dr. Google’s pay grade.
The past has a nice way of taking the edges of difficult moments. Looking back to the 5 or 6 months without guided neurological care is still unimaginably hard. If you have an opportunity so to treat your MS, do so if you feel it’s what you need.
Don’t just languish in silence. If you have to compartmentalize your life for a while, you will thank yourself when it eventually all begins to pay off.
◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019
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◾ MyTherapy: Best MS Blog for Simplicity 2018
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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2019. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.