It’s OK not to be OK

Chronic pain. Those who have it, can’t wait to get rid of it. Those who don’t, often do not understand what is going on in people’s bodies filled with chronic pain 24/7.

Not to reminiscence too much about the good old days – those where pain was not a constant, unwanted house guest – but I cannot remember what living without pain was like. Waking up feeling jolly, not a single bout of pain stabbing my face, being able to keep my balance on my way to my bathroom, high energy levels… All this was abandoned long ago, and even after 8 hours of sleep I just can’t remember what life felt like.

Healthy people often take their fitness for granted; they don’t question their bodies underperforming for a day or two. However, living with multiple sclerosis – probably the most unpredictable chronic illness out there – is like stepping onto a roller coaster with loose belts. You will feel like you’re bouncing around in your life instead of feeling firmly in charge.

Expect changes to your day as it goes on; planning things weeks beforehand can be difficult and annoying or upsetting if other people are involved. It’s how you deal with these things that will show you if your MS has taken centre stage or if you will guide your illness reasonably undamaged towards the end of the day. Life is hard going without chronic pain. With it, MS is not a joke and not some bragging right you have to impress others. It’s agonising on several levels.

The last four days my hair (yes, you read that correctly) keeps on hurting, meaning I have a massive headache, stabbing eye and jaw pain which makes it difficult to talk and eat. Medication is not working and I am at my wit’s end trying to find a solution. Ice packs, camomile tea bags on my eyes and pain medication are taking me for a ride on that rusty roller coaster; my pain medication is simply not doing what I want it to do.

Further down my body, my left leg is bothered by neuropathic pain. Thankfully, my neuro meds do work for my legs, so in a few hours I could be free of pain in my limbs (once again I have to praise my GP and medical team, as they always do their utmost to help me when I need their advice).

In between my head and feet, I feel reasonably OK. Nevertheless, as every other human being will tell you, lack of sleep does not always make happy people. I will always be happy-go-lucky, but I simply feel mentally drained today because I keep waking up several times each night of aches and pains.

Rising above these symptoms will more than likely be part of my MS life for the foreseeable future, so I have to admit that it’s OK not to be OK. I cannot be demoralised because I know that somewhere, right this minute, researchers are getting closer and closer to better MS medication with fewer side effects, and nearer and nearer to helping part of society desperate for targeted MS healing.

Ambivalent feelings will always be present because staying focused on my health yet looking forward to the future will be paved by questions and the idea that I am not MS, and that I cannot have my days filled with everything-MS. Sure, I have MS, just like I have a pair of shoes (make that half a shoe store!). I may have to wear some that hurt pretty badly, or some that make me all wobbly on my knees.

MS is deciding that chronic pain has several layers of truth and consequences, resisting becoming chronic pain and refusing to give up. Banning anxiety and not dwelling on the illness inside your brain and spinal cord. Embracing what you are still able to do and finding different ways to feel happy. It’s not always easy, but it’s necessary.

You are still you, no matter how much pain you have and how different your life is to how it used to be.

“Everything can be taken away from a man but one thing:
the last of the human freedoms: to choose one’s attitude in
any given set of circumstances, to choose one’s own way.”
(Viktor Frankl)

© WVE and Ireland, MS and Me, 2011-2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to WVE and Ireland, MS and Me with appropriate and specific direction to the original content.


    • Billie says:

      Thank you for your kind reply!

      Life goes on, that’s the way I feel like having MS. Sometimes it takes a bit longer to get rid off pain but at least I do not let it dominate my days :))


Penny for your thoughts...

Fill in your details below or click an icon to log in: Logo

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

Twitter picture

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

Facebook photo

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

Google+ photo

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

Connecting to %s

Godinterest Blog

Your source for insights and information about

Beyond the Masquerade

The girl behind the mask and the world through her eyes!


Meeting Business Companies

G.O.P (Huynh Tran The Anh) - Food - Travel - Fruis - SocTrang Province - Vietnam

My Name: Huynh Tran The Anh Birth Of date: 07/1987 Add:428/3 Pham Hung Street, 8 Ward, SocTrang Province, Vietnam Mobile:0977.436.094

Epilepsy Awareness Squad

Eradicating the rumours and stigma about epilepsy from the face of the earth.

Something Like a Storybook

This is where Morgan Bradham shares stuff.

Sarah's MS Blog

This is my blog to talk about and share my experience of my newly diagnosed MS.


Kildare based Photographer Edward Mooney

A blog about my personal experience with bone cancer and life in general!

MS Warrior

Daily Upside Down Life of a MS Warrior

The Stranger Canvas

Live. Love. Dream. Explore

Explore ideas worth spreading, every weekday

The Dude With A Blog

Personal, Fun Blog That Will Make You Smile, Laugh And Even Cry

New Author -Carole Parkes

Psychological, thriller, mystery, secrets, betrayal, adoption, romance, poetry, art

Rantings of an Amateur Chef - What works, and what doesn't!

Indie Hero

Brian Marggraf, Author of Dream Brother: A Novel, Independent publishing advocate, New York City dweller


A great site


What it's like doing a PhD with disability or chronic illness


Just another human being who's trying to reach new levels of consciousness.

Lots and More

All kinds of stuff and nonsense...

The Daily Advocate By Painspeaks

Advocacy is FREE and its never-ending ripples spread awareness for all worthy causes!

Dream, Play, Write!

Today, make a commitment to your writing.


Get every new post delivered to your Inbox.

Join 1,096 other followers

%d bloggers like this: