Old 09-04-2016, 01:35 PM #1
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Join Date: 2016
City: Toronto
State: Ontario
Country: Can
Diagnosed: 07/2016
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 27
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Default So incredibly wiped...

Our daughter has attended the same child care facility since she was quite young. We were very fortunate, as it was local to the area that we lived, worked and played. The staff were always really great, much like a tight-knit family. We loved how progressive, nurturing and supportive they were. They helped us grow a really well-rounded child. Like only a real community could.

When plans changed and our daughter was no longer attending the daycare, we continued to send her there during the summer mos as we both worked. Since being off ill that has not changed as I need the break and it would not be fair to her to be home w/ sick mom all summer long (despite the costs).

A few years ago we got an email informing us that one of our child care providers was ill with cancer. I was completely gutted, as she was young, had only been married a couple of years and had a new baby. We kicked into high gear and made sure she knew how much we cared and threw together a huge care package, checked in often, chatted online, kept in touch via facebook etc. Things went up and down over the years, but she was well enough to return to work for a stretch, the cancer was gone, she had another baby and things were really looking up.

Then out of nowhere she started to decline. She got bells palsy, then tingling and numbness in her legs, a blood clot in her lung and scans revealed the cancer had returned and moved into her brain. She's now paraplegic w/ a preschooler, a newborn and been given 2mos-1yr.

The director of the daycare knew we had kept in touch w/ her, so sent us a message the other day letting us know that she had a bucket list wish and invited us to join them in attending an event. We were on time, but she arrived a bit later. We hadn't seen her in years, whereas others have from time to time. So, we decided to swoop in and snag a big hug before she got buried in the crowd. Much to my surprise, she bawled. Hard. Unlike any greeting w/ others.

The place was quite packed in support of both her and her husband (who was performing), so we let them settle in and they were surrounded by all of their loved ones.

When people began clearing out, we were invited to join their table of 6 which eventually left us alone w/ her. We told her we'd be happy to keep her company while her husband mingled w/ the crowd as he was well loved.

Suddenly we realized that hours and hours had passed, that she may have missed her visit from the personal support worker and we all quickly gathered our things and
were off.

Today, I am still reeling.

I cannot, no matter how hard I try, get over the fact that this 33yo wife and mother will no longer be here w/ her family.

I am floored at how my experiences with ill health, though completely different to hers, brought us together in a way that created a real, genuine connection and understanding. I don't get into my stuff (in fact, she has no idea what is wrong w/ me), but it seems I am able to talk on her level and my understanding was different to that of her friends/family. She was so open, so grateful to have an understanding, empathetic, compassionate ear that she literally became mush. All the other interactions around her were heads tilted w/
"so nice to see you", "you're looking well", "you've got this", "nonsense, we will not have any of that negative talk" etc, so no one to really process this madness with. Just a lot of half-smiles and nodding.

I know I have said this here before, but there have been times in my life where I would just pray for an end to this hell I am living w/ my body. There were so many times that I was convinced that this could not possibly be anything BUT cancer and really mourned hard about the idea that I would have to live out the rest of my life in this state, but yesterday I was able to use that hell to help provide genuine comfort and support through my lived experiences w/ illness/disability and my true appreciation of loss, the fight to maintain independence, swallowing ones pride, pain management, isolation, difficulty in delegating when ppl offer help, the need for people to just take charge and get on w/ things etc

I sent this attached meme to my mother yesterday, as she has been having a tough time w/ her fibro. It's seriously the worst to have to think of it in this way,but we can totally appreciate it, as it's our reality.

Perhaps it's helped that I am taking Cymbalta, as I don't think I would have been able to see this a few months ago, but as awful as all of this is for that family, it was a really healing moment for me, despite the emotional/physical toll it's had.

I am in bed today. No idea when the exhaustion will lift, but I know that we are both better for it.

Take good care of yourselves friends. I do hope you find some relief, no matter how big or small.
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bed, brain, cymbalta, decline, disability, family, good, happy, healing, health, hope, ice, isolation, lift, pain, pain management, relief, rest, sick, swallowing, tingling, understanding, wrong


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