Greetings All, whether PMR / GCA Veterans, Newbies, Confused.coms, Plain Bonkers PMR and GCA Survivors, or any or all of the above.
A much-discussed topic on this great Community Forum (aside from the multitude of others) is that of how, as I call it, the Dreaded 'DF' (Deathly Fatigue) can affect our progress, energy and confidence in the almost daily, sometimes hourly process of coping with, and hopefully eventually recovering from what really are very nasty Auto Immune illnesses.
I'm sure that, for many of us, the DF isn't a Laughing Matter. There are numerous, very valid medical explanations for how Crushing/ Deathly Fatigue is 'part and parcel' of AI illnesses, and this should help us in our process of understanding what's going on medically.
That said, I've come to realise that, by giving the DF a name and 'Personality' of its own, it might also help some of us to see the DF not so much as the Enemy: but perhaps more to help some of Us Lot to Recognise and Accept that we perhaps can negotiate with and accommodate it (albeit reluctantly) on our often unpredictable Health Journey? To my mind, at least, this is an important part of the Coping Equation too.
So here's my 'DF Perception' Brief for any of You Lot who want to reflect on the DF phenomenon - and also have some Fun:
1. Can you describe, in Witty Style, how the DF affects you mentally and physically? (!)
2. Also, can you give your Personal Experience of the DF a Name or 'Personality'? Have a go, and let your creative Mind play - it might help you and others here to explore and share the Lighter Side of our perceptions and experiences of our health conditions, and how they affect us, for better or worse.
3. TLAs (Three Letter Acronyms) are allowed - so long as they are not offensive (Beware the HU Moderators!) ;-). That said, I stand by my personal acronym of 'BUM' (Bonkers Uncle Mark). But we'll have to see what the Moderators say about that one...! ;-/
Hoping this Alternative Take on how we might perceive and accommodate our PMR / GCA Symptoms will give some of You / Us Lot something to think about - and hopefully will bring us all some innocent fun along the way
Best wishes as always, and try to keep smiling on the PMR / GCA Journey.
'Uncle' MB
Written by
markbenjamin57
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Marvellous idea Mark but I am just too sand-bagged to respond with anything remotely witty.
Did you know that Tedski had gone to a picnic to celebrate Actemra being allowed by NICE for GCA? Just in case you were missing him. See Kate’s post. 🐻🐻🐻🐻🐻🐻🐻🐻🐻🐻🐻🐻🐻🐻
Hmm describe in witty style - I would but my wittiness seems to have eloped with my ability to be able to stay awake in the afternoon. If or when they return from their honeymoon I will be able to attempt this.
My name for it is ok brain fog set in give me a minute...........
Oh yes IAAH as in I am awake honest. Often preceded and postceded by zzzzz. Sorry I extended the 3 to 4 letters 🙄
Ah yes, CT as I call it. Many would probably think it stands for Chronic Tiredness but it's actually Cat Tendencies. As a cat groomer and life long lover of cats I think I've now turned into one! I am quite happy sitting by the window all day observing the birds at the feeder station but try moving me and I get very scratchy. I do an awful lot of sleeping during the day but not so much at night when I'm often to be found prowling around the house. I have the ability to fall asleep at any given time and in fact have done so mid conversation on many occasions. I have not yet resorted to eating from a bowl on the floor but only because I fear I would never get up again! Keep smiling!!
Me to, I think I’m a cat , I board cats, so like you I’ve become one. My other half keeps me in at night, although I’ve been spade. But it stops the toms calling round . !!
"Roid mode" for when computer says no! Even when "rebooting" (having coffee) error messages continue and sleep mode is entered frequently with no warning
Mine was named BAT (Blinking [Bloody for those less refined] Awful Tiredness.
But then, as you know I’ve always been batty so maybe I didn’t I notice the difference?
Just got back from Pilates, think I must have left my wittiness there! So I see if I can find in in the garden this afternoon along with the weeds!
Enjoy the sunshine!
To the Batmobile Robin! 🏎
Too tired for any whit. Sleepy sleepy catch a nappy. Not low dose yet either! Want to be alone. Just f off. Not really of course! There you go Mark that's how it is! KRO.
Okay you asked for it and don't say I did not warn you!!!! I don't often post but I read and learn a lot and if have have crabby fatigue I just don't post. I have been diagnosed with GCA in 2015 and now also have PMR as well as other autoimmune disease. But such is life.... But to get down to the deathly fatigue which visits me everywhere, in my living room, kitchen, bathroom, bedroom and well just all over my house. It has actually become my best friend. It helps me to understand myself and clearly I have had a lot of time too do this! I have 7 grand children from the ages of 4 to 13. They have met my best friend and know her well. My 4 year old granddaughter spends a lot of time at my house and she likes to interact with my best friend. Her most common expression is "you can't get me" and she is right I can't! She knows I will make the noise of coming to get her but they are only words but her giggles and laughter always perk me up. She really only knows me this way but accepts both me and my friend. She also knows I am a sucker for whatever she wants to eat because most of her choices don't require much energy from me eg smarties, cookies, popsicles etc. I watch her ride her bike with a dandelion tucked behind her ear. She always says "watch me watch me" that I can happily do. I may have no energy but have all the time in the world. My13 year old grandson who lives in a suite in my home, has known me many years before my diagnosis and knows my best friend probably better than anyone. He checks on me throughout the day and merrily forgives me when he arrives home from school drenched because I could not get it together to pick him up from school. He runs out to help me when I drop the pizza cause I tripped going up the stairs and we laugh hysterically together cause who falls up the stairs....I know its a bad day when I have to take a break before I get off the toilet or I take 10 min to put my pants on! unloading the dishwasher is like I have won the marathon. I feel pretty pumped when I can accomplish this feet pun intended cause my feet get pretty tired! But best of all when I am so tired I can hardly stand it I read all your posts and don't feel so alone and feel much better others get the fatigue piece. I am now down to 2.5 mg of pred but I have done it extremely slowly my endocrinologist is very supportive and understands the dead slow method and that we need to carefully watch the disease and manage it appropriately. One day at time for me. Today I sit in my nice rv with my hubby in the mountains of bc so thankful for the day whatever it brings. Mind you today you have the nice Debbie but the day is still young......crabby fatigue is the worst and why I am in the mountains!
Thanks for your lovely and insightful reply, I can relate to so much of what you say about Fatigue with PMR and / or GCA. Yep, the bane of my life nowadays is also painfully stooping / kneeling to get things out of the freezer or dishwasher - and taking 5 minutes to straighten-up afterwards. Ohhhh... so much for Action Man!
It must be great to have the 'Little-Uns' to cheer you-up. Although I don't own any myself, I know that they often have great and natural intuition.. and a sense of Fun and Compassion without a trace of Judgement (although they can be Very Cunning and Naughty!). Something a few of us adults could try to re-learn..?!
In writing this Post, my main aim was to get a few of Us Lot to try to comment on the Lighter Side of our illness (if possible). You've 'come-up Trumps' with your reply (excuse the political pun..), thank you.
I'm trying to imagine you and your hubby in the RV (I know - Recreational Vehicle) in BC. Sounds very exciting, enjoy! As you say, 'be thankful for every day'. So true, and a reminder to all of us that Life is precious and not to be wasted..
I find DF particularly helpful.😀 It is my excuse for anything I don’t want to do - visit people, walk, housework, etc. etc. I just say “sorry I have a PMR attack” (note - not pred attack)! None of my friends have ever heard of PMR and see me get out of a chair, struggling to walk, etc and feel sorry for me. They don’t realize it’s the OA that is really affecting me!
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