“… but anyone looking at you, wouldn’t know you were ill.”

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We had friends, from California, stay with us over the weekend; and although I knew it was going to be an exhausting 36+ hours, I was looking forward to it and knew it was something I wanted to do and that I would enjoy.

They are aware of my situation and we had agreed in advance that if and when I wanted/needed to rest, that no explanation would be necessary; I was to do “what I needed to do.” 

I tried to, with the help of my OH, be organised and prepare as much as possible before they arrived, late afternoon on Friday.  The white wine (of which I know knowing about) had been selected, with the help of “Michael” (the maybe 25-year-old, wine expert from our local Majestic Wine shop) and brought home the weekend before.  It laid chilling, on the bottom a shelf in the refrigerator.

The cheeses, carefully chosen and paired with the white wine selection by “Allen” (who is also barley 25!) were ready to be brought out and served at room temperature; which on  Friday afternoon, was bloody HOT!

{And not to go off on a tangent here, but when I was in my twenties, I drank (and served) Mateus Rose or a Boone’s Farm and if I served a cheese, it was most likely an artificial cheddar from a “spray can,” served on a Ritz cracker!  When did these children become so savvy about wine, cheese and entertaining…   it blows my mind!} 

Dinner had been pre-ordered, and would be picked up by OH, on his way home from work;  gourmet pizza, fried calamari, eggplant parmesan, an Italian meat platter… “Bob’s your uncle!”

Friday evening, sorted. 

We were all in bed by midnight and the evening was lovely!  Although, I admit… there may have been just a wee bit more consumption of cheese, carbs, wine and sugar than there should have been, on my part, but no worries.

Saturday saw much cooler, windier weather and Brighton/Hove was alive with activity.  The sea-side is the place to be on a day like that, so after a hearty breakfast (for some of us) off we went!

The strong South Easterly winds had the sea looking like a blue-brown Margarita, being mixed up in a giant blender!

We walked down through historic Brunswick Square, across the street to the Hove Lawns, over to the Boardwalk and as the winds pushed us east towards Brighton, I swear, you could see the i360’s, “Big Grey Poll,” swaying from side to side! {insert green, emoticon face here}

After a  sneaky early afternoon cappuccino, we continued our stroll through the South Lanes for a bit of window shopping and a quick taxi ride, had us home by 3:00.  I think a 3 mile walk was good, don’t you?  And that welcome one and a half hour nap found me refreshed and ready to “party,” by 6:00.

Saturday evening had us booked in at a lovely, casual, local Hove restaurant; the 7:45 reservation pretty much ensured we’d be home before I turned back into Cinderella (the servant girl version!)  I didn’t monitor what I ate, but did my best to “go slowly” on the alcohol intake.  Home by 11:45ish, in bed by 12:30.

Cinderella did good; no lost shoes, no wine induced muddle. 

Sunday was a dreary day and it was “pissing down” all morning… Hey, I’m not complaining, because “YES,” we needed it!

Our friends had planned to leave early and get back to their primary, hosts in Eastbourne, so we had a quick coffee and chatted about future meet ups.  Our guests were gone by 10:30 and OH and I sat here, listening to the sound of the rain slashing against the window panes.

With the dish washer loaded, sheets stripped off the bed, towels gathered… and all the “junk” that had been hidden away in cupboards, put back into their cluttered places, we chilled.

And then… “Ahhhhhh, the couch.” 

As I think back, I perhaps, at some point, actually felt the energy and adrenaline oozing out of my pores and into the grain of the purple, leather couch; but at the time it just didn’t click with me that, that is what was happening.

The day was filled with me, semiconscious and horizontal on the couch; mindlessly binge watching several TV series, we had previously recorded.  Dinner was a hodgepodge; with eggs for me and tuna for OH.

Each of us were lounging, comfortably on our own individual purple palanquin (me definitely the more comatose of the two) when I sensed OH looking across at me…  As I caught his eye, he had a strange look on his face and said something to this effect;

“You know… I was watching you over the weekend and it’s funny, because no one would know, by watching you, that you’re sick and that you’re like “this,” more often than you’re not…  anyone looking at you, wouldn’t know you were ill.”

As I thought about it for a minute, I quickly realised he was 100% RIGHT! Our friends had heard all about how debilitating these two AI illnesses were; and how they  have “kicked my ass,” upset my life and my screwed with my very existence!  Yet, here…  over the course of about 40+ hours I had apparently put on a performance where I had possibly come across as cool, calm, collected and more ludicrously than that, HEALTHY!

At least I think I did… obviously OH thought I had!

People impacted by PMR and/or GCA (or any invisible, chronic illness, for that matter) have often talked about how unexpected (and off-putting) it is when family members and/or friends say;  “… but you don’t look sick?”  

And fair enough, we probably don’t! 

However, I do believe, that when we’re put into social situations, we are able to  (like Bruce Banner) consciously or subconsciously summon an inner strength or energy, that allows us to  deal with and actually enjoy, the occasion!  We “dig deep,” and flex our memory muscles to recall and replicate what we remember to be “acceptable social behavior,” from a time when we were well and then we mimic that conduct.

It’s not that we don’t want to have a good time, or at we are incapable of enjoying ourselves at these social gatherings;  it’s just that they require an inordinate amount of “spoons,”  and we have only so many appropriated to us, for any given day!  Oh, of course we can consciously decide to use more than our daily allotment, but we will sure as hell pay for it, by having to spend the next 24 hours on the “purple” couch!!!

It’s a trade-off, we know it…. we accept it.

{Tangent Alert: I am sure my friends from California are reading this blog and I want them to know that spending this past weekend with them, was worth every single spoon in my arsenal and MORE!  It was a trade-off , but one that I willingly made!  I had a wonderful time and I would happily do it again this coming weekend! Give us the address and we’ll see you in Cortona, say Friday night?} 

I’m still not sure where my OH was coming from and I must ask him this evening (I just didn’t have the energy for that conversation last night).  Was his keen observation of my “healthy one minute,” “comatose the next,” a reflection of his own personal scepticism; or was he wondering what our friends had thought of my behavior?  After having heard so much about my immobilizing illnesses and then watching me frolic around the flat, like the “hostess with the mostest” (well, okay that may be a slight exaggeration!) but seriously, what were they thinking?

Are we are own worst enemies?

Do we conjour up a false stoicism to give off the impression that we’re healthier than we really are, or that we feel better than we actually do, for the sake of others?

Do we willingly over-spend our spoons, knowing that we’ll pay for it tomorrow, just to have a few hours normalcy today?

I think we have all agreed in the past, that we do… we do indeed.  We want so much to be “normal,” to be perceived “healthy, hardyrobust, etc.” we consciously (or perhaps subconsciously) simply, make it so.  We “will” it to happen…  at least for a short period of time.

Perhaps, unbeknownst to us, those of us inflicted with one or more of these hideous, invisible, long-term, chronic illnesses, have had bestowed upon us, a unique and little-known “Superpower?” 

Maybe we’ve been gifted with the ability to (temporarily) turn the illness off, in order to accommodate our family and friends; and to give the impression, at least for a short period of time, that our lives are normal and have not been turned upside-down by these dreadful illnesses?

Okay, so it’s not, in any way, as spectacular as Bruce Banner’s ability to conjure up the green-skinned, muscular humanoid hulk like figure, but hey, it’s something!

And maybe…  just maybe…  once we realise that we have this Superpower, we can capitalise on it, develop it, awaken it: strengthening and magnifying it to the point where we can actually sustain it longer and longer…  Maybe even to the point where we are normal and well and healthy for a longer periods of time, than we are weak and fragile and ill!

Can you imagine?

Well… if you can imagine it, it can surly happen!

 

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12 Comments

  1. Loved this. I feel and do the exact same things. AND from time to time my thought is that the people I have told, including my husband obviously, only “sort of” believe I am ill. Every so often with him. I have a bit of a melt down and say, I am sick!!! I think just to remind him! As for friends, I’m glad they think there is nothing wrong with me, and I don’t bother to mention PMR because I know my long lounge in bed with book awaits.

    Liked by 1 person

    1. Ohhh, Bonnie, Thank you for validating this! Yes, I wasn’t (still not, actually) sure if it was my husband’s personal scepticism, or if he was genuinely speaking on behalf of out friends. I’m so happy you like the post… thank you for reading and for supporting me! xxxx

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  2. As we are the California friends, let’s hear our thoughts on the weekend. First and foremost, it was QUITE LOVELY! The thoughtfulness of the wine selections, amazing cheeses and dinner in on Friday evening, laughing, talking, looking at photos was just perfect! As you stated, we agreed you could get up and leave at any time, no questions or excuses necessary. Having last seen you after a week of hiking the Tuscany hills, it was obvious your energy levels were lower but the mental stimulation of the evening seemed to keep you relaxed and engaged. Fixing that “English” breakfast on Saturday morning was just showing off! We walked a lot on Saturday, questioned your knee response and intent to walk, rest, drink coffee and finally agree to taxi home, although we did have Nick shop and walk. We all enjoyed the afternoon nap, and were pleased that you felt well enough to partake of the lovely, relaxing dinner. I think we were there 3 hours, again, laughing, talking and enjoying the evening. The weather on Sunday gave all of us an excuse to “veg” and we knew you had used up all your reserves, hell, we used up plenty ourselves. Was it having a break in your routine, focusing on showing us a good time, just saying “shit, I just wanna have some fun, sickness be damned”, who knows. I’m sure you are paying for it physically this week, but I’m not sorry because it was such a pleasant time for everyone. Were you sick, yes, of course, we have seen you at your blazing best, but this was pretty damn good, even if you are now down to THREE WINE GLASSES! Thanks for the lovely visit, 12 San Benedetto, see you Friday night❤️

    Liked by 2 people

    1. Hahahahaha! Thank you for that recap! It was perfect! I am actually not too bad this week. Sunday was a “couch” day, but as we both agree, well worth it!!!! You guys are he best and whatever energy I was able to muster was brought about by wanting to hang out with YOU! Thank you for reminding me what “normal,” feels like! xxxxxx

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    2. Loved reading this. I can totally relate because over the last few weeks, we’ve been on holiday and had also had short breaks with both my daughters and their families. When I’m away with them, like you, I use plenty of spoons, but first couple of days home, I am a zombie. Here’s to spoons and zombies. We shall have fun…. then lots of rest

      Liked by 1 person

  3. What a lovely post Melissa and it sums up PMR for me. We want to be normal, we want to enjoy time with friends and family. Life is precious and short. I really believe we summon up a superpower when we have social events planned because we desperately don’t want to miss out. I don’t want pityng eyes, I want to be part of things, attending my grandaughter’s first birthday, along with her little baby friends..it was great. Ok, we’re shattered afterwards but hey, that’s a small price to pay for just living life. By the way, your American friends sound delightful.

    Liked by 1 person

    1. Thank you! I’m happy my rant resonated with you! And you are so right, life is precious and short! We need to enjoy every minute we can! I wish you all the best and hope your PMR is under control. PS – My American friends are delightful. : )

      Liked by 1 person

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