If I had only known…


My Mom used to say,  “If you don’t have anything nice to say, don’t say anything at all.” 

And come to think about it, that used to shut me up (for a short while, anyway).  So, if you’ve noticed that I’ve been quite lately…  it’s because I haven’t had anything nice to say!

Earlier in the week, one of the members, of our esteemed circle, shared a Post titled; “Cheer Up.”  A great title, right?  It caught my attention immediately and I was keen to read it, as I thought it would be some uplifting news about a great personal achievement or observation; or perhaps there had been a revolutionary breakthrough on the research side of PMR/GCA! (Ahhh, wouldn’t that have been wonderful?”)

However, as I read the short, but expressive piece, I couldn’t help but feel a little disenchanted.

Apparently there was no breakthrough in PMR/GCA research and the writer wasn’t sharing good news about a personal achievement…  S/he was simply implying that (in the past) s/he had found this site,“helpful,” as it gave people (including her/him I assume) an opportunity to communicate with “fellow sufferers.”  … but, then s/he goes onto to say, that recently, s/he had been getting the impression that some of us were,  ” …getting too absorbed in {our} illness,” and s/he felt compelled to tell the us miserable lot, that we needed to “cheer the f _ _ k up! 

Okay…  brilliant!  Fair enough!  Why hadn’t I thought of that? 

The message hit me hard, “Cheer the f _ _ k up!” The message was obviously intended for me, and me alone; and it shook me to my very core.

Who was this sorcerer?  What makutu, from angels or  demons, had been conjured up, allowing this mage to peer into my very soul and discover my forbidden secret?

Lately, I had been allowing my illnesses, aches and pains to control me!  Like an unwitting mark in one of the greatest swindles of all times!  I had been led to believe that as a “sick person,” I had no choice, but to act, feel and be sick.

What a con!!!!  

I had allowed myself to be shaken by the withdrawal side effects, of reducing to 30 mg of Pred!  I had willingly succumbed to that “sand bag” feeling in my arms and legs, believing I couldn’t walk up that hill or up those stairs!  The fact that my feet are numb, aching, burning and have thousands of “creepy crawlers” running around under the skin, shouldn’t get me down, I should ignore it!  I should not let the fact that I can’t walk more than a mile, without being in excruciating pain, stop me from at least trying to walk, or run even!!!  Damn that knee replacement surgery!

I was so very easily convinced that being/feeling ill and being in pain was a good enough reason to allow myself to feel sorry for myself, and occasionally wallow in my own self-pity.  Silly girl.

How pathetic am I?   

What other words of wisdom did my shaman have for me? Here’s the line that did it for me:

“There’s a world out there, rest when you must but live life. 😀” 

Fuck me…  why didn’t I think of that? Live life!  Of course… how profound.. how simple… just LIVE my freakin LIFE! 

Yes, of course, there’s a whole world out there!!!!  Wow! I must have totally forgotten that, because I guess, I thought “living life,” consisted of laying on my sofa, feeling sorry for myself and thinking I didn’t have any choice, but to be and feel sick…

Why didn’t someone tell me this 9 months ago?  All the precious time I’ve wasted being ill.  Damn me.


Okay…  apologies.  And all kidding and sarcasm aside.

But come on…  if it were that easy, don’t you think we’d be doing it?  Living our lives….

If given a real choice between living a fun-filled, fulfilling life, out there in the real world; and being here (feeling/being ill) and finding only a semblance of happiness, commiserating with friends in a virtual reality world, which do you think we’d choose?

Don’t get me wrong, I understand where you’re coming from and I apologise in advance for my bluntness, but personally, I found the post somewhat insensitive and condescending.

I totally respect your right to post what you posted, and I applaud your bravery; as 69 comments indicate that you definitely got a rise out of all these old, sick people who are absorbed in their illnesses… however, that doesn’t mean I have to like or agree with your opinion.

What we see, of each other here, in this space, is just a tiny slice of the actual lives that we each lead.  “Yes,” sometimes we do get “absorbed,” in our illness and we wallow in our own self-pity, but I for one think we deserve the right to wallow!  We have earned the right BITCH about not feeling well and commiserate with our virtual friends here in this safe space.

I have a life and I live it to the fullness that I am capable of living it, at this particular moment in time.

Now… I guess everyone understands where my Mother was coming from when she said; “If you don’t have anything nice to say, don’t say anything at all.” 

*stepping off soap box…  going back to laying on the couch feeling ill and sorry for myself.*






  1. I noticed you had been very quiet lately Melissa and in my naivety thought that you may be feeling a lot better and HAD been living a more (normal) life. How wrong was I? My heart goes out to you. That post was really condescending and I read it,felt annoyed, and moved on. Suppose we just have to realise that some people are very opiniated and quite frankly a bit batty!
    On a lighter note, will you still be attending the meeting next Saturday. I really hope so.

    Liked by 1 person

    1. Thanks Sue T, I ignored it at first, as I wasn’t even strong enough to voice my opinion… I just shrugged it off, which is so not me! …but a week later it hit me like a ton of bricks and all that sarcasm and bitterness came out. I feel bad about that, but better out than in!!! YES I have every intention of being there on Saturday… I will post soon about a possible meet up before hand for a quick coffee… xxx


  2. I am so glad I found you! You are a JOY – Cheerful or Sad. I need a realist to keep me grounded – set my expectations as I am just 4 weeks and 4 days into this strange journey of PMR/GCA diagnosis after walking around for 8 weeks and seeing an orthopedic and an urgent care doctor one who told me I was bone on bone and needed a knee replacement and the other who said “your inflammation markers are both elevated, but that could be anything.”

    I am just recently turned 60; had a high stress Manager of Global Event Strategy career at a huge tech firm on the west coast and finally realized I need to medical leave to see how this is going to impact my life. I can’t do my job with a constant headache, a radiator buzzing in my ear and my hands shaking like i need a fix. So any advice I know we are all different in how this attacks us is appreciated.

    I am spending the day reading your beautiful prose, Oh – and Anonymous is an ASS. that particular piece was one of your most poignant. just remember not everyone has good taste…

    Liked by 1 person

    1. Hi Mary Kay, I’m glad you found me too!!!!! Thanks for your support! Wow, only 4 weeks and 4 days into your journey… I am almost a year in and do not know where the time has gone! We have similar situations… PMR/GCA, bad knee, I’m a bit older, 64. I worked for American Express for 35 years, in a high stress role as well; in Technologies as a Programme Manger. There is NO WAY I could have continued working anywhere after my diagnosis as I spent months just lying on the couch, in a comatose state. The only advice I have is rest, rest, rest… Every time I felt good and tried to resume normal activity I was back on the couch again! so take it easy and be kind to yourself. Hahahahahahaha, And yes Anonymous was a bit of an ASS! Thank you for that! Thanks again for your support and good luck on your PMR?GCA journey, I hope it is fast and uneventful! Melissa xx


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