Grief & Consequences

Five days after mum passed, I ended up facing a serious health issue of my own. 

She passed on the Sunday. The following Friday, I went over to her place. I wasn’t going to start packing yet. But I wanted to do things like look through photos, and even just be there to feel close to her.

It was my first time going over there. And I couldn’t deal with the emotions. I didn't want to feel. I felt lost, and so alone. I didn’t know what to do. I didn’t know where to sit. So, in the early evening, I just lay down on the floor in front of the heater. I took too many of my meds. It’s something I used to do a lot, but not for the last few years, and it was minimal compared to what I used to do. I curled up in front of the heater, on the floor, and wept until I passed out.

When I woke up in the middle of the night, I couldn’t move my arm. It was kinda like when you sleep on it, but worse. More intense, completely unable to move, unable to feel. Then, trying to stand up to get to the glass of water on the coffee table next to me, I fell over. I couldn’t feel or move my leg either.

I managed to drag myself to the couch, with my arm and leg being dead weight, and waited about half an hour, thinking my limbs would ‘wake up’. I used my left hand to Google my symptoms (as we all do), but it only worried me more. Not wanting to be a nuisance to the emergency services, I called 'Nurse on Call' for advice, who quickly put me through to the ambulance.

They thought I’d had a stroke.

All I wanted to do was call my mum.

I didn’t realize it’d been about 30 hours that I was passed out - I thought it was more like 6. I lost an entire day, passed out on the floor.

It took days for them to figure out what was going on. At one point, I was scared I was going to lose a limb - maybe two.

Was it a stroke? 

Autoimmune disease? 

Compartment syndrome? 

Complications from an ingrown hair in my armpit? (not even joking) 

I still don’t quite understand it all. To put it simply, in the way I understand it, I slept on my arm and leg for too long. The blood supply was cut off for long enough for the muscles to literally start to die. When that happens, toxic byproducts are released into the blood. It’s called rhabdomyolysis. My arm swelled to twice it’s usual size (which has thankfully gone down). Thanks to dysmoprhia, I couldn’t even see it until a doctor pointed it out before a scan. Even then, I couldn’t see it unless I put my arms next to each other to see the difference. The swelling put pressure on my nerves, and now I’m left with nerve damage. 

I spent three weeks in the hospital. They wanted to keep me longer to do physical rehabilitation, but I needed to go home. I had spent two weeks there staying with mum during her final days, then 5 days at home, then 3 weeks in as a patient. I went to my mum's funeral in a wheelchair. I felt like I couldn’t grieve, being in the same place she passed away. I missed my cats.

I’ve been home for 5 months. I went from wheelchair, to gutter frame, to walking frame, to crutches. I just graduated to a walking stick last week, although I’m still very wobbly on it. My leg still collapses occasionally, and my thigh is still numb, but no where near as badly as it was. My arm is doing better. I have most of my movement and feeling back. It still gets sore and tired if I use it too much, even basic things like typing or cleaning, but I’m off the hardcore painkillers (oxycodone) regularly. I’m on lyrica to help with the nerve pain. If I miss a dose or two, I really feel it the next day, so I guess that means it’s working. 

I see my physio every week. Every session leaves me feeling weak and shaky. It’s sad how far things have deteriorated so quickly. I’ve been recommended to go twice a week, but mentally, it’s just too much. 

They just did another MRI on my shoulder, and thankfully there's no tumor there. I didn't know that was even a possibility until the neurologist gave me the results last week. I've had so many MRIs, CTs, ultrasounds, and various tests in the past 6 months, I've just stopped asking why. I've got another nerve conduction study coming up in the next few months, so hopefully I'll get an updated prognosis then. 

I’m sorry it’s taken me so long to share this. When I last posted, I had already been dealing with this for a couple of months. In the early days, they didn’t know if I’d regain function in my leg, or especially in my arm, or if the pain would ever go away. After being so depressing this year, I think I wanted to wait until I had some good news about this.

On Monday, it will be 6 months since mum passed. It’s still hard to believe she’s really gone, let alone that it's been so long. I still keep thinking I can just pick up the phone and call her. 

The day after mum passed, I went back to the hospital, just to sit out the front. Because the funeral home hadn’t picked her up yet, and it was the closest I could get to her. I took wine in a travel mug, and sat out the front for hours, because I knew she was there. I did ask the concierge at the entrance (who I got to know very well in those last few weeks, and I still am very friendly with when I go in for appointments), and she said I could go there any time I wanted to. 

I've been spending a few days a week at her unit. Packing and organizing. It's slow going because of my injuries, but I'm nearly there. It's going to be extremely sad once I can no longer go there. Even on days when I have no energy to pack, sometimes I just go over and sit and remember. Losing that will be like losing another part of her. 

I’m not coping with her loss. Some of you will know that my mum and I didn’t get along for a long time. But in the last few years, since moving out separately, we worked hard to repair that. And once we found out she was sick, I spent every day trying to help her. She told me that she was worried about me, that I was spending so much time and energy trying to support her, and that she was worried about how I would cope once she was gone. 

But she was right. I feel so empty without taking care of her. It became my reason to live for the time she was sick. Every moment, I was trying to think of what I could do to support her. I can try to fill the void with spending time at her unit, packing and organizing things. But what will I do in a couple of months when that’s no longer there? 

I still go over once or twice a week, because I have to get it organized. But I only take my night dose of meds with me. I thought it was an issue I was past - I hadn’t misused them to knock myself out in nearly two years. But I was wrong. And I’m terrified it’ll happen again.

When I was in hospital, I couldn’t help but laugh. Only a couple of weeks earlier, I’d poked fun at my mum for using a walking frame at the age of 64 (because I told the nurses that I thought she needed help with walking). Then I was using one, at the grand old age of 28. And when I was stuck in the wheelchair, I had no one to push me. 

I went to mum’s funeral in a wheelchair, with my support worker, with day leave from the hospital. As per her requests, it was a very small, private, graveside service. We had my dad’s headstone re-done to reflect them both equally. A few weeks after we found out she was dying, we had gone to my dad’s grave, to mark 25 years since he passed. We spoke about what she wanted it to look like, what she wanted on it, and I noted it all down. When we left, she patted the ground and said “I’ll see you soon, Bob” 

There was just 15 of us in total. My brother, my support worker and I, my 90-y.o great aunt and her son, four of her closest friends… she also wanted an open invitation to our medical center, so both of our GPs, my dietitian (who used to see mum), and 3 of the receptionists came. It was small and simple, but beautiful.

The words that stick with me were towards the end of the service. 

“In sorrow, but without fear, with dignity, and great respect...” 

Mum might have been without fear, but I'm still scared shitless. 

Christmas will be here in 6 hours, but let's just ignore it this year. It feels uncomfortable, not going over to see mum. Not making my roast chook. I've got a leg of lamb, which mum and I used to cook a lot throughout the year, to throw in the slow cooker. Simple. But I don't know if I'll even do that. 

We never did much for Christmas. Just spent the day together, cook a roast. My brother would visit. It was never anything big or overly special. But this year, I feel like I’ve been falling apart a little more each day. I turn the TV off whenever there’s a reference to Christmas. I hate hearing about it. I try to ignore it. But tomorrow is going to suck, to say the least. 

I'm truly dreading tomorrow. My first ever Christmas alone. I'm scared that it’ll be the hardest day so far, even harder than that first time going back to mum's place. That left me with nerve damage that I'm still trying to recover from after 5 months, and could potentially be permenant. I'm scared of what tomorrow will bring. 

My piercers offered for me to join their family Christmas at their farm. Which was absolutely lovely of them. But the last thing I want is to be around a happy family, and rub salt into the wound that I will never have that again. I thought about taking myself out to a nice restaurant for lunch. But same problem. Too many happy families. I’d probably ruin the day for anyone I was around. 

I thought about setting up at the cemetery for the day. But there’s going to be so many people there. I’m going to go on Monday. I’ve been on the 27th of every month. This is going to be the six month mark.

I've been trying really hard to start getting back to my daily routine, but even now, a few days shy of 6 months since mum passed and 5 months since I've been home from hospital, it still feels near impossible. 

In the couple of months after mum passed, my weight dropped by a little over 10%. It's stabilized since I've been drinking more again, but I'm comfortably 'officially' underweight again (forever fat though).

Thank you to everyone who reached out, both here and on Facebook as well as privately. I'm not okay. I don't know if I'll ever be okay again. 

I'm having a difficult time finding words, hence this post has taken so long for me to write. It's still early days, both in grief and in my injury.

To make things harder, my psychologist (who I've been seeing for many years) is on leave until March. She's been away for 3 months already. It took her a long time to tell me that she was expecting, because she was worried about leaving me. But when she did, I was nothing but happy for her, as much as we were both scared about me facing the holidays alone. She emailed me last night with a photo of her beautiful baby boy. I've been seeing someone new, I've only met them a few times, but they seem nice.

For now, I think I'm going to go have a cry and make a Black Russian. 

I just want to call my mum. 

Merry Christmas. 

Sitting on the porch, watching all the trick-or-treaters on (a socially distanced) Halloween. My first genuine smile in months. 

Day 3. The swelling hadn't even hit it's max yet.

Left – my thigh. Right – my forearm. 

Princess Persephone on her Halloween castle (a gift from my lovely support worker)

xxBella