Taking The Bad With The Good

I have spent this morning contemplating the ways in which life can be so good and so utterly awful at the same time. 

Life offers many wonderful experiences, opportunities and pleasures. Some of those are simple, some are constant, and others are once-in-a-lifetime events. Little things happen every day that can really blow your mind when you stop taking them for granted. 

One of my most constant joys is that I am blessed with wonderful friends. Sure, I’ve known the pain of broken friendships, and the shock of discovering someone who I thought was a friend was the exact opposite of that. But I am also enormously blessed and privileged, because I have some of the most amazingly loyal, loving, supportive, and caring friends on the planet.

At the same time, everyone in my circle of closest friends is struggling with something awful. There have been victories, there have been defeats. There are ongoing issues that don’t look as though there will be resolution or healing anytime soon. Those friends would all consider that I am in that same boat with my chronic pain and spinal health issues.

Everyone suffers something awful at some point in their life. The hard times are balanced and put into perspective by great days, wonderful experiences, and the love and encouragement of those near and dear to us.

Still, the news I received from one of my closest friends this morning was particularly devastating. She has taken this news the same way she has dealt with her entire battle against her illness: in true warrior style. Although her future is unsure, her faith and courage are not. I am so inspired by her attitude and her strength. 

I feel as though I am the complete opposite of that. I’m full of tears and anger and questions and fear. I cried more than she did during our phone call. There is no point in pretending though, because this is all part of the grief process and it’s not healthy for anyone to suppress any of that. 

I don’t know what the coming weeks or months hold, but I do know one thing: I don’t want her to die. I don’t want to be without her. And I know that is a sentiment shared by every member of the family and probably everyone who knows her. 

I am keenly aware of not putting the cart before the horse, and treating her as though she’s already on her death bed. Although painfully aware that is the likely outcome, I will keep hoping and praying reminding myself that it might not come to that because I do still believe in miracles. I want to make every opportunity, shared moment and experience count. We already have a lifetime of memories together, and because I treasure her and her friendship so much, I want to make more. They don’t have to be big or magical. They just have to be.

So, as far as is possible, I will embrace and make the most of the joys while never forgetting or praying against the bad. None of us knows the number of our days, but we can do everything in our power to make every one of them count. 

It’s not about denial. It’s all about focusing on the good while living with the bad. There are no rules against tears, or frustration, or hating on whatever hurts. The only thing I refuse to do is give in to it and let it steal what is good, too. 

PS: Please don’t feel sorry for me. I am truly blessed – just very human.

FibroMyFriday

The aim of this post is not to complain. My spirit is still quite positive, albeit a little weary after working hard to tick things off my “do or die” list this week. Instead, my purpose is to raise awareness of what it’s like to live with Fibromyalgia. 

People cannot see my illness. It’s easy to feel sympathy for someone in a cast, a wheelchair or a hospital bed. I notice an immediate difference in people’s responses on the days I need to use my walking stick. Some are kinder, and most are more physically careful around me. 

Of course, there are always some who couldn’t care less about someone with a cane, but there is no point losing time or sleep getting upset about them. Their attitude only highlights the good in others’. 

My disease is invisible, although some of its effects are not. I may look tired, or upset, at times. My emotions sometimes get a bit messy, although I am a good actor so most people don’t know that. 

After a busy and somewhat stressful week, my body is letting me know how unimpressed it is. 
My pain levels are in the “stupid” range. 
My legs don’t want to bend anymore. 
I have zero need to take my pulse because everything is throbbing. 
Even  typing this is slow because my fingers hurt too.

To anyone else, I probably just look like someone in a recliner, covered with a quilt on a cold night, typing on her iPad. The truth is, I want to go to bed but I don’t want to move because I ache so badly.

My pain levels are in the “stupid” range. My knees don’t want to bend anymore. I have zero need to take my pulse because everything is throbbing. 

I have medicated, but it’s not touching the pain. That’s always good. 

In a further act of bodily insubordination, my very dodgy spine is giving me spasms— yet another an indication that I have probably (read: definitely) overdone it, yet again. 

I don’t want sympathy. I don’t want medals or admiration, or people telling me I’m brave.

What I want is for people to understand that Fibromyalgia and other “invisible illnesses” are not imaginary. They are not something we adopt because they are “trendy”. 

Fibromyalgia hurts. And it sucks. And it doesn’t go away. 

And if you think I “don’t look sick”? Just remember, you can’t see my superhero cape, either. 

Fibromyalgia And Me

I could have spent most of Fibromyalgia Awareness Month writing about my experience of this condition. I could spend a year writing what people don’t know or understand about it.

However, I plan for this to be my only post on that topic during this Fibromyalgia Awareness Month, because I don’t like to complain and I don’t want to sound like I am hiding behind my disease or making excuses. 

Fibromyalgia is a diagnosed medical condition— now. It wasn’t always. It has a wide variety of symptoms, although they basically all contribute to chronic pain and overwhelming fatigue. 

Because of Fibromyalgia, I have pain all the time. Think about that. 

Pain.
 All.
The.
Time. 

It doesn’t ever completely go away. The best I can hope for is that it will ease off a bit, and that I’ll have more good days than awful ones. 

When people present to the Emergency Department or paramedics with pain, the standard procedure is to ask them to rank it between 1 and 10, assuming that 10 is the worst pain they have experienced. I wake up most days to a starting level of about 4 or 5 for me. With medication, I can generally keep it down to about a 3. 

That’s why I have structured my working week so that I start a bit later in the mornings. It’s not because I don’t want to get out of bed: it’s because when I do, I am stiff and sore and it’s really hard to get moving. 
As the day wears on, my pain levels start to increase. My legs feel heavy and hard to lift when I walk. My feet  begin to ache, and that often turns into a throbbing pain that starts to work its way up my legs. It can take hours for the aching to subside enough to let me sleep, especially if I have been on my feet a lot. A similar thing happens with my hands and arms if I am using them a lot, and especially if it involves holding or carrying anything with a bit of weight in it. It’s not unusual to end each day feeling like I’ve been either beaten up or body slammed by someone or something a lot larger than me. 

Anytime I get stressed or anxious, or when my depression is messing with me, my pain levels flare. Overtiredness also increases my pain. Sometimes, I reach that level of tiredness by lunchtime and still have two classes to teach and a 40 minute drive home before I can rest. Add in a work deadline or two and things can get pretty horrid. 

All of this is completely separate from my back pain, which is a different thing and a different type of pain altogether, and which I am able to manage fairly effective for the most part.  

The problem with pain is that people can’t see it like they can if you have cuts and bruises or a cast. You can hide a lot behind makeup and a smile. 

When they call this an invisible illness, they’re not kidding. If I had a dollar for every time someone said to me “But you don’t look sick,” I could quit work and live very nicely on the interest. It’s such a shame I can’t bill people for their insensitivity or ignorance. 

I know it’s not a death sentence like some other diseases are. It is, however, a life sentence. As things stand, there’s no cure in sight. All I can do is keep up my painkillers and anti-inflammatories and hope for the best. 

None of this makes me, or anyone else with Fibromyalgia, weak. 

It takes strength and courage to get through each day, and sometimes that’s on a moment-by-moment basis. It takes resolve to blink away the tears and keep showing up for work or social or family occasions. It takes guts to say, “Actually, I’m not doing so well” when people ask, or to write a post like this one. In a world that prioritises health and beauty, brokenness is often an unpopular confession. 

I have Fibromyalgia. I don’t want sympathy or pity. I don’t want people to tell me I am strong or brave. You bet I am! 

What I really want is more awareness, better understanding, and more effective pain relief. And a cape. They can’t see my pain or my superpowers, but they’d be sure to know I have something if I were wearing a cape.