This is a difficult post for me to write. Finally, I went to the doctors today to disclose the deterioration of my mental health as my physical challenges progress.
As a man, it feels like failure but I have to remind myself that it takes a strong person to recognise that you need, and to seek, help. I would also challenge anyone to go through the physical changes that I have in the last few months and not break a little.
This post carries on from my last ‘My Story’ update found here:
This post is preceded by: Preparing for the Biologics appointment Trouble on the horizon Today was not a good day. As some of you know, I had my biologics review as it has been three months since the recommencement of Humira. You may also know that Humira has not really been working this time around, […]
The wake up call finally came this weekend. Somewhat inevitably after the news I received recently from the hospital and pretty much having to cancel all of my plans the last few weeks from poor health. I was feeling pretty flat. It’s been a difficult 13 months since this flare started but the last couple have been particularly tough. Clearly the biologic that had served me so well in the past is no longer having an effect. Plus I have all these new symptoms, such as the fevers, chronic fatigue, cough and sore throat etc. Chronic pain is hard enough on its own, these other nuisances on top are just cruel.
Then on Sunday, I had a fall. I had woke up in a lot of pain so probably wasn’t concentrating as much as I should have done when descending the stairs. Around 4 steps from the bottom, my knee gave out and I tumbled down like a sack of potatoes. Thankfully, I got away with just a twisted ankle – and the usual disproportionate immune response.
What does this have to do with mental health? Let me explain…
To most, it’s just a trip down the stairs, it’s nothing, an accident. Yet to me, it’s a progression, a weakness in my joints that I didn’t have previously. I always had problems with my right knee as a 12-13 year old. Regularly, I wore a leg brace to try and stop me walking with an aggressive limp. The knee would dart inwards with each weight-bearing step to meet the perfectly straight left knee. I recall it being something I was particularly conscious of in school. There was no hiding it.
Thankfully, with a lot of intense physio, hydrotherapy, supports, cortisone injections into the joint and the introduction of Methotrexate, the leg was straightened out, literally. The same knee has been a problem for me since last Summer and completing RideLondon 100 in August was the last straw – it is also the sole reason I had to stop cycling. But that was down to pain, not weakness.
The leg giving out is not just a sign of disease progression but also a sign of things to come. What if I was carrying the baby down the stairs? What if I was walking the dog at night when that happened? What if it gave way on the top step etc.
This one simple accident was like another straw on the camel’s back that had already broken months earlier but this time, for whatever reason, I knew I needed help. I was officially miserable.
I have always been a positive person with my conditions, an advocate for what can be achieved with arthritis (within reason) despite the challenges. I raise money for charity, ride 100 miles in a day, talk about ‘breaking the cycle’ and helping yourself. Yet here I am. Unmotivated to move, fearful of the gym, not getting any enjoyment out of things I used to.
I am numb
I’m a diluted version of me
I have no resilience
I am broken
The important thing for me to remember is the reason
I am not depressed because I am weak, can’t handle stress, taking too much on or pathetic. I am depressed (there, I said it – that’s a step forward, right?) because in the last twelve months I’ve gone from being fit and healthy to not being able to walk the dog some days. From extremely sociable, playing in sports teams, to isolated and unable to participate in hobbies. From somebody with a good work-life balance to somebody with no life. Pain-free to 24/7 discomfort.
The fact that my mental health is now unwell is not because my mind is sick, it’s because I’m ‘not a robot and humans can only handle so much’ as my Doctor uniquely put it this morning. I think I handle pain as well as anybody but the change in circumstance, my fears for the future and seeing my body destroy itself in front of my own eyes has taken its toll. My body has taken my mind down with it.
Time to respond
So either I can continue on this path, keep isolating myself because it’s easier than talking to people. Writing dark poetry and focussing on what a burden I am to everyone. Or I can do something about it.
I can’t help my physical situation, I didn’t cause it and I’m certainly not qualified to put it right but I can stop it polluting my mind. The creation of this blog and talking more openly was step one and that’s certainly been a huge positive step for me. Despite my preference to avoid, the next step requires therapy and medication.
I’ll talk about this in Part 2 of this post tomorrow.
This experience has made one thing clear to me – it is simply not possible to live with a long term chronic illness and not experience an impact on your mental health at some point. No matter how strong or resilient you think you might be. So if you are in a similar position, don’t beat yourself up like I did. Consider it a natural byproduct of being dealt a sh*t hand in life with your physical health. Much as you wouldn’t feel ashamed of your physical challenges, don’t hide the mental ones. As given our circumstances, we’re an inspiration to those around us just for getting through each week.
Stay strong, ask for help when needed and remember it’s ok not to be ok.