In Sickness and In Health

By Susan Urwin-Monk Fibro Active Member

When I regained consciousness, I awoke in a strange bed, a different room and in a different body! I’m not talking reincarnation here. I awoke with Fibromyalgia; I just didn’t know it yet. Every fiber of my body was screaming at me, I could barely move. I pulled the tubes out of my nose and looked down at my chest, black and blue. Woah....why couldn’t I remember the accident, the articulated lorry that had obviously nearly killed me? A nurse approached me, and oh boy did I have questions. Trouble is, so did she.

What was my name? Well I did know it, but I couldn’t pluck it out of my brain. I was right on that one, it’s not an exciting name but still, a bit weird not knowing it. I got right the year, pat on the back for that. Finally, did I know where I was? I was looking at a nurse in a sterile looking room. Even in my confused state, I managed to figure it out. Wasn’t rocket science. Did I pass, could I go home now?

Balancing between Life and Death

Apparently not. Apparently, I had been “very poorly”. That explanation turned out rather an understatement. My body had crashed after an anaphylactic reaction to a drug given to me intravenously. I nearly died. No lorry involvement whatsoever, just a nurse who hadn’t noticed my red wristband. “Ok” I said, and went back to sleep, desperate to wake up from what must be a pretty rubbish nightmare.

I awoke straight back into the same nightmare. Turns out I was actually in my new life, and I’m still not entirely happy with it to be truthful. I had some visitors, my mum and my sister. Mum called my name; I made a mental note of it and resisted the urge to ask her why she chose something so dull. After a few “OH MY GOD’S” and being told I look like death warmed up, I thought to myself, you don’t say. I actually was death warmed up wasn’t I. Another note to myself to think twice before using that analogy again! Then I was told how lucky I’d been. Really? I mean, Really?! I wasn’t feeling it.

Role Reversal

Fast forward to home time. Loss of weight and muscle meant I had to go home with a new friend. The wheelchair. It was all arranged; my son and his fiancé would move into my ground floor flat with me. In reality, going back to the marital home with stairs and 4 teenage stepsons was going to be rather tough. Oh boy, did my son get his revenge. Did he nag me? Did he stand over me checking I’d taken my pills? Did he tell me to do as I was told? Did I stick my tongue out? Yes, to all the above. Role play is one thing (I worked with primary children in my previous life) but role reversal did not suit me at all.  

A couple of months later, Christmas arrived. I had gained some weight via liquid meal replacement and was slowly building up solid food intake. I was able to sit up unaided and walk slowly from one room to another without falling over. A month later I left the house for the first time. Being wheeled around in January was not great. My family was so happy, but grateful as I was, I was freezing in places I didn’t know possible. Why was I still feeling like I’d gone head to head with that “lorry”, and lost?

The Tsunami Aftermath

So far this has been all about my diagnosis. What I haven’t addressed is what this journey. I came out of hospital so broken and physically fragile. I looked emancipated and ill. So, trapped in this new physical state I was unaware of everything else that had changed that night. I was in so much pain, waiting to feel better, to get better. Unaware of the beginning of a crashing domino effect in my life. That night had dragged my old body and subsequently my identity away. I didn’t realize this until many months later.

Reinventing my Story

Valentine’s Day arrived. My wonderful husband bought me a special gift to go with my roses. A sparkly new red wheelchair! With balloons tied on it of course, so we could return the borrowed one. I was touched by his thoughtfulness. Inside, however, I was crying. It was taking some getting used to, the wheelchair and having to depend on others. I felt diminished. Unused to complete strangers asking me, or worse, the person pushing me, what was wrong. How rude! Well I didn’t know did I.

Rewiring my Brain with No Cure

Finally I was diagnosed. This gave my husband and I a fleeting moment of euphoria. They figured it out, they knew what was wrong, it had a name, it was real! We’d never heard of it, but now they knew they could fix me...yeah!!  No. Fibromyalgia has no cure, they can only treat my symptoms, help with the pain. Something about the correlation between being “very poorly”, and my brain waking up differently wired. I was handed a form to go immediately to the physiotherapy and occupational health department. I looked at my husband, he looked at the floor. I could only imagine his thoughts.

I need a bigger swear jar!

At this point we had only been married 18 months. He never said, but I suspect he was haunted by the ‘in sickness and health’ vows, he had made.  I was looking better but was still in a constant pulp of pain. I felt like a massive black hole had sucked all of the good bits of me away, leaving a shell that nobody could possibly want to spend time with. Physically the strain of that appointment took weeks to subside. Mentally I was numb. The news was too much, brutal. To find out I’d be dependent on those who would normally depend on me was a crushing reality. Thankfully when my body crashed, my worst personality trait survived. Stubbornness, not such a bad thing at all it turns out. No way was I having this. They are wrong. They got it wrong. Ironic considering I’d spent months trying to find the truth I had decided not to accept it. I just needed time to recover from being “poorly”, time and a bigger swear jar.

Trying to Negotiate with Boom and Bust

I had to be brave, put a happy face on. After all there is only so much misery people can bear to be around. I had to give my husband some hope that he hadn’t married faulty goods till death us do part. With this new happy face on people started to relax around me, telling me I was looking better. I tried not to laugh at that one. The people I loved had been dragged alongside me on this journey. Scared and screaming inside I became an Oscar worthy actress. I was even convincing myself! I became good at not only hiding my condition, but negotiating with it. I became insular, adept at hiding the devil I felt inside me. What was the alternative? Drive everyone away with my reality? No way. I had this under control. How deluded was I? Turns out, very.

Ripping the Mask Off

I wasn’t fooling anybody. I was forced to apply for financial aid as I was told to accept, I could no longer work for the foreseeable future. My physio doubted I would “make a sustained recovery”. My husband wrote a covering letter during this process. I’d been so wrapped up in my pain, my loss, fear and anger; I’d convinced myself I had succeeded. He wrote:

“I have watched on as a vibrant, industrious, independence woman has been struck down and reduced down to someone who now will need care and attention”

Reading those words was devastating. I felt I had failed him. It was like ripping a mask off, I am no longer myself, not in his eyes, and never will be. He mourns me, our hopes, our plans. Everyone around me had tried to help, but how could they? I hadn’t trusted even my own husband with the truth about my daily struggle.

Grieving Ripples

I have Fibromyalgia and without realising it I’ve not been the only one grieving. Just because you don’t see it does not mean it doesn’t exist, I know this now because I feel it, I live it. The ripples created on that fateful night have spread out to those around me. We have all had to go through the shifting of our previously natural dynamics.

I have Fibromyalgia, and by association my loved ones do too. I am a member of a support group now I’m no longer hiding and pretending. I am not alone in this. That nightmare, that play of sorts doesn’t have to be a monologue. Nor should it be.