Learning to Reclaim “Me”!

I’ve never been one for focusing on “me.”  I’ve always naturally put everyone in my life first, including family, friends, church, volunteering, and work.

I realised this week that I’ve even been doing this from a medical perspective,  especially since being diagnosed with complex chronic, often acute, illness.

I also realised I have to stop doing this. It’s literally draining the life out of me, certainly quality of life, as I have lost the ability to relax, to think, to dream, to breathe, and in essence, I have lost “me”.

Medical PTSD

I was chatting to my occupational therapist a few weeks ago and explaining how I couldn’t bear the thought of going back to the hospital, how sick and tired I was of appointments, and how exhausted I was.

She said it sounded like I might be experiencing Medical post traumatic stress syndrome (PTSD).

My immediate response was, ” yes, I’m pretty sure I am”.

It’s been 13 years of dealing with chronic and progressive illness. Over that time, it has felt like I’ve had a new diagnosis or complex new symptom at least every six to twelve months, not to mention my twenty surgeries.

Every year, I have at least twenty GP appointments and, on average, a specialist appointment every month.

I can’t even remember how many hospital stays I’ve had since 2010, but I am referred to as a “frequent flyer” patient by nurses.

At the beginning of my journey, every doctor and specialist was scrambling to treat me and be on my team. I was the girl with the weird, rare disease and an unbelievable femur break that just happened as if I’d been in a major car crash. My x-ray of the break was passed around the hospital as if it were a print of a famous portrait.

Please Play Nicely

Fast forward 9 years, I now can’t bear the thought of certain specialist appointments and procedures, and the thought of needing a hospital stay, especially a prolonged one, makes me feel physically sick.

It’s just been too much for too long, especially when nobody can really do anything, despite their best efforts.

After a while, I also think doctors get patient PTSD.

Our complexities and no solutions just wear them down. They still need to see you as they have a duty of care, but they likely dread your name coming up on their patient list as much as you dread seeing the upcoming appointment on your phone calendar.

I have one specialist who now just constantly lectures me about being on Prednisone, even though they were involved in prescribing it. It’s the only medication that really works, and as soon as we try to taper, I become critical with serious symptoms. My Pain Management Specialist and some of my other doctors want me to stay on it, and this is causing significant tension among my medical team.

That tension is passed onto me, and I feel like I need to find a way to resolve their issues, to help them,  when what I really need is to feel supported and cared for.

One of my most empathetic specialists said to me during my last hospital stay, he was just so sorry as he felt my husband and I had been left out in suburbia to just try and manage an unmanageable situation. He then hand wrote a seven page report for the rest of my medical team, ensuring everyone pulled together to support us, and he ordered a huge range of tests that actually proved useful!

It’s Time To Debrief….It’s Time To Reclaim Me

In an effort to start “reclaiming me,” I’ve agreed to have an appointment with an occupational therapist psychologist in a couple of weeks just to debrief. I’m really looking forward to it. I need to speak to someone neutral, someone who will listen and allow me to be me for a while, not a patient, not a patient advocate, not a wife, not a friend, not a blogger, not a forum administrator, a writer or a podcaster, not a manager or a leader…….just me!

I need to identify what I should be focusing on at the moment. I need to find a path that will allow me to relax, reconnect, and recuperate. It’s only six months since my major hernia repair and stoma relocation surgery. It’s only three months since we found out the hernia repair failed and is now inoperable.

I’ve lost 15kgs in 3 ½ months, and while I needed to, everyone is worried as to why it’s dropping so quickly, especially when I’m on 32mg of Prednisone. I should definitely gain weight on that dose as you generally do on any long-term Prednisone dose. I’ve been on it for ten years, which is why I gained the weight in the first place.

I need to ensure while “reclaiming me”, I’m also reclaiming some control over my health. I need to use my time wisely and see doctors who will make a difference and treat the priorities concerning my diseases, rather than just going through the motions with the doctors who can’t do anything more for me.

I need time to have fun again, to block out all the “have too’s” and spend blocks of time feeling free to focus on unimportant things, trivial things, moments of not worrying about commitments, health and other life stresses etc. I need quality time to spend with my husband.

I need time to just be……whatever that looks like. I know as I reclaim “me,” things will become clearer. The way forward will open wider. My extreme fatigue will become a healthy tiredness.

I’m not sure how long this reclaiming process will take, but I know it’s so necessary that I take the time it needs.

I’ll be better able to continue helping others if I take time to help myself. I’ve told countless  people that in coaching and counselling sessions over the years but failed to heed my own advice.

It’s time I practiced what I preached.

Let my soul be at rest again,

for the Lord has been good to me.

Psalm 116 v 7

Life is too short to spread ourselves so thin with various, whilst worthy, commitments we forget to actually live.

Our medical management, while important, also needs to have boundaries.

So, here I go. Embarking on a new journey. Perhaps the most important journey I’ve ever been on.

I feel excited about what lies ahead as I “learn how to reclaim me,”.

If you are feeling overwhelmed and consumed by life and medical commitments, I hope you take the time to learn to reclaim you.

Take care

Sam xx

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