Should I Be Making More of an Effort?

Those that can't do... Rant!

rantingsofamadwomanblog.com...

*Please be advised this Blog post contains some profanity*

[SheffieldJane]

Some mamici1!!

In answer to yet another insightful blog, I would just say that you are not alone in becoming a tad reclusive and you’re not alone in your relentless self examination either. But give yourself a break, we are all a jumble of noble and less noble motivations. Do not think yourself into a brown study. Try some mind emptying and just breathe. You are doing what you need to do right now. Excited to learn more about your artistic project. Do not let the monster spoil it. 👉🏻👹

[Hidden in reply to SheffieldJane]

Thanks SheffieldJane! Now, where is that little monster... she was just here a minute ago!

[BonnyQuine in reply to SheffieldJane]

Spot on, SJ.

[Sandradsn]

Hello Mamici1

You are not alone,I think since I left work at christmas I have found my comfort zone! I'm enjoying being away from the stress at work and people.

I'm recharging my batteries physically and emotionally in my comfort zone and I'm staying here for a while!

[Sandy1947 in reply to Sandradsn]

I am just where you are. In the process of retiring. Resting, spending more time with family, traveling. Was a serial dater but not so much now. Get up early, go to bed early. Breakfast and lunch dates are all I can handle. Mostly one and done!

[Hidden in reply to Sandradsn]

Enjoy Sandradsn! Protect that energy!

[Longtimer]

Don't try to work out what drives the monster..😈..it wastes precious energy....trust me....

[Hidden in reply to Longtimer]

Hey Longtimer! It is indeed a futile effort. ; )

[Sandradsn]

P.s...nice photo!😄

[Pongo13]

You have got a lot on your plate; despite this you mention a new art project! I like the way you find new distractions - I bet when spring properly arrives, you will look back and feel some improvement - I hope so. I am sure I'm not alone in wishing the best of outcomes in the quickest time poss. Hang on in there.

[Hidden in reply to Pongo13]

Thanks Pongo13!! Yes, since my physical activity level is now pretty much non existent, I have had to come up with "distractions" that can be accomplished from the couch or dinning room table! I hope you are well and life is treating you gently!

[Pongo13 in reply to Hidden]

Decopatch is fun if you haven't tried it. And jigsaw app on iPad (plus I may start a huge jigsaw box today with this perfect weather for such an activity! Life is treating me well thank you!

[Hidden in reply to Pongo13]

Oooooo, decopatch! Hmmmmm?

I cant wait to share my "art project" with the PMR/GCA community! It should be completed today and it's being entered (Amateur category) in a local competition... Just for fun really, but the 1st time I have ever done anything like this! So I have surprised even myself!

Stay warm and good luck with HUGE jigsaw!

[Mstiles]

Sounds like you’ve made a lot of progress! Can’t wait to hear about your art project. To create you have to be alone, so being alone has its gifts.

[Hidden in reply to Mstiles]

Hi Mstiles! I know right!!!! I am amazed when I listen to MYSELF! I have come a long way!!! Yes, more on art project this weekend!!! *tehetehetehetehe*

[GOOD_GRIEF]

I still work, so when it comes to weekends, I am Greta Garbo...I just want to be alone! Me, a good book or an old movie, my snuggy, my Pookie, and me. That's all I need.

I get miffed when I have to go to the hairdresser/dry cleaner/manicurist/pharmacy. I just want to be by my self, wrapped in peace and quiet.

I've skipped 4 birthday parties, 2 wedding showers and 2 baptisms since 1/1/2018. (Mark is the middle child of 11 siblings, and we have some 45 nieces and nephews now bearing children themselves. His family could eat my life if I let them.)

I have no guilt about spending my time exactly as I please, especially when some of the good hours fall on weekends. Someday, maybe and maybe not, I'll re-enter the social whirl that used to be my life outside of work. But if I'd rather be on the beach or on the couch, then that's where I'll be.

And no, I don't answer the phone either.

[Hidden in reply to GOOD_GRIEF]

Good grief, GOOD_GRIEF, how do you work???? I left work on Monday the 13th of November and was NEVER able to go back... I do miss it though!!! I also miss volunteering at the hospice, but know that those people need way more than I can possibly give them, at this point, so it's better that I don't even try...

I think it is GREAT that you guilt free about your life choices!!! After all we only get one (maybe) so we might as well do all we can to make ourselves happy and content! : )

Now.. where is my bucket of tea?

[GOOD_GRIEF in reply to Hidden]

I'm PMR, not GCA. I don't know that I could keep working if I was GCA.

As of now, I have no choice. We need the health insurance, which is unaffordable otherwise.

Besides, I love my job, I love my boss and I love my staff. I'm not ready to part with any of them yet. I did cut my hours back quite a bit. Now I do 10-12 hour days (plus the endless commute) and no weekends. Anything not done in those hours gets done by telecommute. My staff has been great, however, picking up new responsibilities and running with them. I'm so proud of them.

My symptoms are nowhere near as bad as they were last year at this time, so I intend to keep going. I take time off for ice/snow on the ground, but that's about it. And if there's a good party going (not just another family gift-giving occasion), I'm usually up for it, even if I can't do the wee small hours of the morning anymore.

As for guilt, I put those bags down long ago. Grandma said "No matter what you do, someone's not gonna like it. That someone might as well not be you."

Grandma was a wise woman.

[Hidden in reply to GOOD_GRIEF]

Ahhhh, right. Sorry I forgot. I guess having the "Double Whammy" makes a big difference. I worked for the NSH at the local hospital as a Ward Clerk.. I loved my job too. I only worked part time 3 days a week, but I just cant image trying to work 8 hours a day!!!!

Yes, keep at it as long as possible... I retired early at 59 (because of stress and lots of bullshit) but had to get a part time job to keep from going crazy!

Your Grandma does sound like a very wise woman.

[Hidden]

Howard Hughes grew enormous toenails!! You be careful with those clippers Mami. I nearly took my toes off on 40mg!! 'Sod em all' that's the spirit. Tell em to bugger off!

[Hidden in reply to Hidden]

Hahahahahahahaha! One of my favourite British expressions, "Sod em all." : 0

Yes, now about these talons!

[Rimmy]

Tooo hard on yourself Melissa - women are particularly prone to this kind of self deprecation about not adequately meeting 'other people's' needs. It's hard enough dealing with ageing anyway without adding insult to injury - and despite the fact I am an avid feminist - appalled by the exploitation of women by the cosmetic surgery industry for example, I also understand how difficult it sometimes is to see 'another' person staring back at me in the mirror. PMR/GCA certainly seem to speed up so many aspects of what we might have expected as a 'normal' ageing process - and I don't care what anyone says about 'moon faces' 'smoothing out wrinkles' - as some form of compensation. I can be Pollyannerish sometimes and look on the bright side - or look for bright sides at all - but we all have times we want to scream - "this is NOT FAIR !!"

Still I now often remind myself that I was actually ageing anyway - ME - who was never going to look anything like I remember my (lovely) Nanna did at the same age. She had the hairnet and tightly permed hairstyle typical of 'mature' women in the 60's - the full floral dress and wide soft arms that were great for a cuddle - her ankles were wide - her shoes were 'flatties' and she swung her handbag and 'kit basket' wildly as we went shopping with her on the bus. This was NOT going to be ME .... !! I liked 'avante-garde' and always loved stylish and interesting clothing (again despite my feminist tendencies) and designed and made many of my own outfits although I wasn't exactly slender and had to struggle to keep my shape suitable for my own inventions. I had some marvellous up-cycled 30's retro gear in my 20's which I wore to nightclubs taking pics (which was less usual then) with a state of the art 'early' polaroid camera given to me by my gadget-mad father - it was fun, I looked good, and it was also quite lucrative when during the day I was usually as bored as hell - at home with my first child. How would I EVER be 'older' or 'old' ....

Time goes by and by and by - people - family and friends pass away come and go and we sometimes live in different places and different worlds, have different jobs, study in different institutions - meet and mix with all kinds of people - that is if we are lucky and we 'grow up' (well hopefully). But as women conditioned to be hyper aware of our appearances and to internalise a lot of negatives about getting/being 'old' in a youth and hyper-sexualised world we cannot ever be completely immune to how we think we 'look' or 'should look'. There is then a temptation not to want to be seen when we feel at our 'worst' or 'lowest' especially if we haven't got dressed by 10am. Then of course who feels like socialising on certain days anyway when you feel awful and exhausted etc etc - it's just easier NOT to ...

I also have many 'art projects' on the go and even submitted recently (I generally hate ALL 'games' - as time-wasters' -card, crosswords, whatever) to doing a 1500 piece (tiny pieces) jigsaw puzzle of a Mucha image - with the rationale that just to be 'sure' (by not just counting them) that all the pieces were there. It makes me sit - while I listen to political chats on our wonderful OZ Radio National - and I do JUST sit while I try to get three more pieces together (I am actually slow and terrible at this) but I have started to feel less 'guilty' ... because like you Melissa I am 'unwell' and I don't want to worry for now about how I look or what other people think and need - that can all wait for now ....

XX

PS - I am thinking how much I look like my Nan at the same age - the last op-shop vintage 1950s-60s dress I found was just like the one I remember her in - and I always wear flatties and sensible shoes these days ...

[Dewdrop456 in reply to Rimmy]

I loved reading your post .I got quite lost in your world. It calmed me down.It is hard to go from a "never sit down and stop person" to suddenly losing your drive. Normally I actually do just keep going at great speed due to circumstances ,but sometimes my chair calls me.(I used to love jigsaws.You could try a much smaller one and work up, then you would find it more satisfying )

[Hidden in reply to Dewdrop456]

Thank you Dewrop456, I'm happy you enjoyed it and what a lovely compliment, that you "got lost" in my world. : )

Good on you if you have made the emotional transition from "never stop," to "sit the hell down." I have made it physically, but struggle mentally and emotionally with not being crazy, busy, active!

Someone else mentioned jigsaw puzzles, thanks... I may try, but I have this creative monster inside that keeps calling me to do weird, off the wall artsy suff!

Hang in there!

[Hidden in reply to Rimmy]

Ohhhhh Rimmy! I so love you!!!! Your Nan sounds lovely, hold onto those memories! I barely remember either of my Nans. I saw them rarely and they were somewhat nondescript. : (

And my goodness I wish, I had known you back in the day! I have a feeling you and I might have been good friends as I would have gravitated towards you naturally! I think I would have learned a lot from you... Hell, I'm learning a lot from you now!!!! xxx

[Rimmy in reply to Hidden]

LOL Melissa - I think we may have got up to a wee bit of 'no good !' (aka 'fun') if we had known each other as teenagers ....

[Hidden in reply to Rimmy]

*laughing out loud*

Mouthfuls of tea being spat out!!!!!!

YES, believe you may be right!!!

My God!!!! When I think about the things I got up to.. I guess I'm lucky to even be here and have PMR/GCA... I could very well be DEAD!

[Rimmy in reply to Hidden]

Me as well !!

XX

[Insight329]

Maybe your monster-that-has-no-name is an introvert. Laughing.. oh the gods are having a good time with you — introducing the analytical extrovert you to the artistic introvert you.

I’ve always been a bit of an introvert. Now, I’m a pro at it.

Twenty-plus years ago when I suffered depression, the psychiatrist and therapist that treated me made me sign a contract that I’d ‘get up, get dressed, and get out (of the house)’.

Reading your blog made me realize that I just might be using these illnesses as an excuse to stay home, say no, etc. a bit too much.

I think I may have to draw up a contract with myself to be a bit more social.

Can’t wait to learn about your art project.

[Hidden in reply to Insight329]

Hmmm? Interesting... I like the "maybe your monster-that-has-no-name is an introvert," concept. Who woulda thought?

*laughing*

Also, I'm glad you see the humour in this! ...but know I feel like the table tennis ball being played in The World Table Tennis Championships!!!

And YES, YES, you got it!!! Am I genuinely not feeling well or am I subconsciously using the illness as an excuse, because I just cant be bothered!!!!

More on the mysterious art project over the weekend. : 0

[Insight329 in reply to Hidden]

Please know that I’m not without sympathy on your ping pong journey. I do forget that aspect because from my seat watching from the outside, I see a seedling being cracked open so the plant can grow.

A bit off topic, but your mobster reminds me of Elizabeth Gilbert’s Ted Talk on her monster.

ted.com/talks/elizabeth_gil...

[Hidden in reply to Insight329]

Ooooo, thanks Insight, I will check this out to tomorrow... I'm much too tired now! *yawn*

Also, please know the tennis ball crack was just that... a crack!!! Just a joke, sorry. (There was no seriousness or pointing of fingers from this girl!)

I so KNOW you have sympathy for my seemingly bipolar relationship with myself and my monster!!! YOU are a constant source of support for me and I LOVE knowing that you are sitting outside, watching... And, of course, only you would say something as beautiful, as "I see a seedling being cracked open so the plant can grow."

I love our banter and look forward to hearing more about your story and know you are on my sideline! xxx

[Insight329 in reply to Hidden]

No worries, the link will still be there at 2:00 am, or whatever your monster wakes you up to play.

Speaking of sleep, I purchased a weighted blanket after hearing that you liked yours. Whoa, what a difference that has made in my sleep! I don't wake up quite as much and I get back to sleep easier. It’s very comforting! Thanks so much for sharing that with us!

[Hidden in reply to Insight329]

OH GREAT! I'm so happy you like it! I really love mine... it's like a security blanket for me now. I sleep so much better with it!

[Neverending63]

That’s exactly how I feel atm. I don’t want to talk to anyone including people I live with and often think shut up and leave me alone. I’m withdrawing into my own shell and am often jealous of snails that have the ability to do that.

I struggle to work three days and that makes me even more antisocial for the next four days.

I too look at my phone when it rings and decide whether I can be bothered to answer it as I know it will result in me having to converse with someone.

I will continue to push myself however to be pleasant and polite and socialise as much as I can but know deep down I am screaming ‘ leave me alone’

I live in hope as the prednisolone reduce I get me back 😀

[Hidden in reply to Neverending63]

Hi Tracey63Anne, I hear ya!!!! I cant imagine working in this state... but yes if I were working I would be MORE anti-social, which is hard to imagine! I have less time for my frivolous activities though...

Don't push yourself too much. I think, there's a fine line between "putting yourself out there," in a good, positive, stretching kind of way... and being "pleasant, polite and socialising," because you believe that is what people expect and you don't want to disappoint them. (My Sage Rimmy, just made that point crystal clear to me!)

Be well and be true to you.

[Hindags]

Just have to say how much I admire how you wrestle with what this passage has brought you. You are still very new to this and the transition has been so dramatic and difficult. Give yourself a little time and answers will emerge.

I’m a bathrobe gal myself. I consider myself to have been very lucky so far without much fatigue or pain. But I amaze myself how late in the day it is before I get out of my bathrobe when I don’t have to get out of the house. I used to have a list of things I couldn’t wait to accomplish on days off. Now I carefully prune that list to the essentials. Fourteen months into PMR I still struggle with that. But I’ve always wanted to accomplish more than I’ve had energy for. Same internal dialogue but at a different level, and I hope a bit more self acceptance and humor after these many months of practice.

[Hidden in reply to Hindags]

Thanks Hindags, I never did have a lot of patience... especially with myself!!!! Waiting for answers... not my strong point! : )

Yup, I usually find that I'm putting clothes on at about 4:30-5:00 before Hubby gets home at 6:00! Ha! He's none the wiser and thinks I've ben up and dressed all day! : )

I find I "accomplish" the things that resonate with me on that particular day... some days it's blogging, others it has ben the art project... others it may be repotting my plants! Sometimes it's cleaning, as my monster (She-Who-Shall-Not-Be-Named) has OCD!!!!

I too ALWAYS want to do more than I have energy! I fizzle out at around 2:00, after getting up at 4:30-5:00 every day! Oh, what I'd give to sleep till 7:00!!!!

And yes, I do love a good wrestle and this PMR/GCA journey has given me soooo very much to roll around in the mud with!!!!! Take care.

[Hindags in reply to Hidden]

Have you considered taking some of your Pred at 2am? It helped me to sleep later, to sleep through the morning cytokine dump that woke me in pain until I started taking some of my Pred in the middle of the night.

I was on 15mg at the time and took 5 @ 2 or whenever I got up to use the bathroom. Take it with a bit of yogurt or peanut butter to protect your stomach, if you choose to try it.

I might have already mentioned this to you. Sorry for the repetition if I have.

[Hidden in reply to Hindags]

No, you did not mention... but thanks!

Oddly enough I just talked to GP about LODOTRA (aka Rayos in the USA ) it is the time released steroid taken at 10:00 pm. It's designed to "release the active substance with a delay of approximately 4 - 6 hours after intake, the release of the active substance and the pharmacological effects will start during the night." My GP did not have a clue as to what I was taking about, but will discuss with Rheumy on Tuesday night.

THANKS!

[Hindags in reply to Hidden]

Please pursue Lodotra if your mornings are miserable and you awaken too early. At least for me, Rayos, made all the difference in that aspect of PMR.

As I said, I experimented a bit with a split dose. I was waking up feeling the pain engendered by the cytokine dump, for me between 5 and 6 am. By the time I took my morning Pred with breakfast at 8am I was already stiff and having to wait for the Pred to reduce the stiffness all over again. When I took just 5 of my 15 mgs of regular Pred. at 2-4am, ( It takes about an hour for regular Pred. to reach peak levels) that pattern went away.

Those were the results I presented to my Rheumy. I think that convinced her to try the Rayos.

I don't know if taking 5mg at 2-4 am and the rest at 8am with breakfast would be ok with GCA. PMR is ok with splitting dosage though GCA not so much from what I've read here. Maybe one of the experts here could weigh in on this. It's not as much of a split as some other dose splitting I've seen. And if your response is as dramatic as mine, then you'd know pretty quickly if it makes sense to fight for the Lodotra.

Just a thought. Good Luck.

[Hidden in reply to Hindags]

COOL!!! Thanks! I didn't know or had forgotten that you took Rayos! Not sure I can justify here as I do wake up way to early (4:30-5:00) but my mornings are pretty god.. I don't have a lot of pain or discomfort, except for 4-5 days after I taper down. The rest of the time I do ok... I just struggle with tiredness, but not sure if it's the meds, the disease or the fact that I only get 5-6 hours of sleep a night. I will discuss with Rheumy on Tuesday. THANKS!

[Hidden]

Love your post. Love all your sayings. I am 77, diagnosed with PMR last Sept, after probably having it for months but didnt realise as also have fibromyalgia and thought it was a bad flare!! Ha ha! Only found out when had pain up side of face for which I first visited dentist and optician and was told to go to docs. On 40 mg pred first, now down to 15mg. Have gorgeous (not) moon face, but go to fibro support group where I said should I stay at home till better or face the world, and was encouraged to face the world. Also have arthritis in knee on one side and hip on other and lower spine so lots and lots and lots! of pain which cant find right painkiller for. Also have husband with ADHD to boot who can only cook beans on toast! My settee is my woman cave with enormous load of cushions, nearby side table with books, newspaper, art materials, yes i go to art group once a week which doubles as counselling session. I dont answer phone if can help it, too hard to get off settee. I love this site, and this is the first time I have ever posted on any site so thank you. Pauline

[Hidden in reply to Hidden]

Oh my goodness Pauline!!!!

If my post prompted you to post for the very first time... WOW!

What a very special gift that is for ME!!!! Thank you!!!!

I am so happy you liked my post and that they inspired you! Please POST more often.

It sounds like you have had your fill of health ups and down... and yet have kept your enthusiasm and sense of humour! God on you!!!

Although I absolutely LOVE the description of your comfy, cozy settee... my monster has OCD and I (even now, from here) have this twitching sensation to come to your house and remove 3/4 of the cushions, and clear the books, newspapers and art materials! My husband is constantly say to me, "Have you seen my... ?" Hahahahahahahahah

I'd like to hear more about "Pauline's Weekly Settee Counselling Sessions! ; )

[Slowdown]

Who needs to go out into the Big Freeze to prove something? Just put the 'need to socialise' thought into a large mind-bubble and push it up, up and away until the sun and warmth re-appear to lift our spirits and peel the dressing-gowns off. I get lost in Photoshop in winter and either end up ditching a gallimaufry mess or something I can share with virtual friends on Flickr. So here you are, 2592 hours + 14 (can't be bothered to add!) keeping a lot of your virtual friends very happy with your blog, and looking forward to whatever it is your creative energy is hatching!

[Hidden]

Oh Slowdown, How beautiful!!! "... push it up, up and away until the sun and warmth re-appear to lift our spirits and peel the dressing-gowns off." Fabulous!!!!!

Yes my "virtual" friends on "health-unlocked" have become my number 1 priority. I love knowing that there are people out here who know what I'm going through and understand!! You all know first hand that this so sucks! My friends and family just do not get it! Here I feel part of a close knit, community! And if my rantings make people feel happy or make them feel more understood... all the better!

I never thought of PhotoShop! I have a gazillion photographs!!! That could be a GREAT project!!!! Thanks, good tip!

[Slowdown in reply to Hidden]

Just need another 3 or 4 lifetimes to learn how to use it .. it's the 'happy accidents' in processing that keep me absorbed and having fun Hope you give it a whirl!

[Hidden in reply to Slowdown]

Yes, I will!

[Jackoh]

Oh you put into words a lot of what perhaps many of us have felt at some point on this journey. Don't try, I feel, to work it all out- just work at trying to get better. You need lots of rest, you need to put yourself first, you can't help others if you're not well yourself. This is a phase- I personally don't think things will ever be as they were but they can be different and be better as we've learned such a lot. Xx

[Hidden in reply to Jackoh]

Hi Jackoh, Yup, I hear ya... but did I mention, I'm a natural, born analyst?

I cant help but to try to work it all out! It's like a challenge. It's like a "double dog dare!"

Believe me I have never had so much REST.. although my mind still travels at warp speed... my body has NEVER been this calm and motionless.

I agree... things will never be the same, but they will be different and possibly, better.

Cheers!

[katie-w53]

I read an interesting scientific article the other day (not sure if it was a link from this site or something I randomly came across in cyberspace) - but there was some research suggesting that inflammation in the body directly causes social withdrawal (in animals as well as people). The authors were postulating that it's the body's reaction to protect itself from danger when you are ill (and therefore vulnerable). I found it really interesting because that has definitely been the case with me. I'm also a classic introvert and so I find that socialising with people, particularly in large groups, takes energy (apparently extroverts gain energy from social interaction - lucky them). And of course energy is something we have precious little of with PMR/GCA.

The good news is that a year in (PMR only, not GCA) and now on 10mg of pred, I'm starting to have more energy and feel more sociable again.... So you will get back to "you" eventually.

[Hidden in reply to katie-w53]

Was it this:

theguardian.com/commentisfr...

[katie-w53 in reply to Hidden]

Ah yes - that's it. I clicked on the link in paragraph 6, which takes you to the actual piece of research in Neuropsychopharmacology magazine.

[Hidden in reply to katie-w53]

It was an amazing article!!!!

[Zofitmogelijk in reply to Hidden]

A little story on the subject. On my 27th I restarted my job , being a social case worker. I Made homecalls to invest what sort of help people needed to cope. One of the first visits the lady of the house opened the door and shouted o no why do they sent me a kid. I hastend to

[Zofitmogelijk in reply to Zofitmogelijk]

Tell I am an adult , mother of two and a husband, what else could se ask for. And I am not proud of my thought Some people could pull themselves together. Looking back the lady was right and only now I really understand what it is like, having not much energy. Maybe

one should live the other way round and die as a baby, aletta

[Hidden in reply to Zofitmogelijk]

Great story Zofitmogelijk!!!! Yes.. it's not until we "unexpectedly" find ourselves in a similar situation, that we can really relate to and understand someone else's pain, and troubles... I sit with people at the the end of their life and help them cross over... I must say (although Thank God I am not dying!) this experience has given me so much insight and understanding into what it's like to be unwell, to need help, to feel desperate, to have no energy or interest in anything. I believe I will be better prepared to relate to those on that end of life journey.

[Zofitmogelijk in reply to Hidden]

Yes, you wrote about that and I admire you to do this valuable work . I reckon it can be very rewarding. Love, aletta

[Hidden in reply to Zofitmogelijk]

It is... it truly is. I miss going to the hospice. I have not been there since November.

: (

[Zofitmogelijk in reply to Hidden]

Let’s hope the time will come soon you can ‘restart’or it is time to find something else that fullfils you From what I read you have lots of potential.

[Hidden in reply to Zofitmogelijk]

Ha! Thanks. ; )

[Pipalina]

Hello Mamici1 - You ask... is this acceptable behaviour for an otherwise healthy, used-to-be-social, 63 year old, extraverted, woman with what is now a old, boring, mundane illness?

Yes, I believe it is very acceptable behaviour because it’s instinctive behaviour and you don’t actually have too much control over it whilst you are enduring this period of “unwell-ness”.

I think it’s the way your body and mind helps you to manage the onslaught caused by the disease itself and the powerful drugs needed to control it. To me it’s as though the body puts itself into self-preservation mode.

When I have an acute flare-up of my ME/CFS symptoms I seem to go into hibernation for the duration of the “blip”. I don’t make a conscious decision to do so it just seems to be the default position my body seems to take.

Friends and family well know that if they don’t hear from me for a few days it’s because I am “blipping” and don’t have the capacity or inclination to talk to or socialise with anyone.

This is not my nature – I love to talk. My mantra truly is why use one hundred words when two thousand, seven hundred and forty-nine is so much better! But, it becomes my nature when I am under attack by the array and severity of symptoms thrown at me for the duration of a relapse.

As soon my symptoms settle down to chronic – I chat to everyone I meet like a slightly manic budgerigar – whether they are interested or not.

All those personality traits that are the very essence of you are still there – they’re just in temporary hibernation… Kathy x

[Hidden in reply to Pipalina]

Hi Kathy, Thank you! You may have "hit the nail on the head!!!!" If it's "instinctive," maybe it's actually an innate behaviour designed to protect us from ourselves?

[daworm]

princessinthetower.org/the-...

[Hidden in reply to daworm]

WOW! Totally Cool!!!!! Thank you! I love it!!! She lives in BRIGHTON!!!! : )

[daworm]

I can't find the link anymore but I just read last week that there is a real chemical action in the brain that causes people with a chronic illness to withdraw as a protective action...happening with me, I'm finding more comfort staying close to home now..

[Hidden in reply to daworm]

Is this the article you're thinking of: theguardian.com/commentisfr...

[daworm in reply to Hidden]

Good article but not the one..the one I read was more for Drs, more scientific type...can't find it now..oh well..

[BonnyQuine in reply to daworm]

Within the George Monbiot article (Guardian) there's a link to a 2016 one fr Neuropsychopharmacology: 'In Sickness and in Health: The Co-Regulation of Inflammation and Social Behavior'. Is that the one you meant?

It's extremely interesting. Thanks for drawing attention to it.