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.”