Demons and Self Doubt

Those who cant do... "rant."

rantingsofamadwomanblog.com...

Warning: Contains some strong language and what could be considered "depressive" content... DO NOT READ if you're having a good day! : )

[Hidden]

Melissa I am so glad you rant. You put your finger on the main feelings imposed by long term debilitating illnesses. Unfortunately the rollercoaster is a scary one and you will be up and down especially on high dose of pred. It might not be a straight and even road to wellness but you will get better. I remember 6 months into PMR sitting trying to roll stuffing balls for family Christmas dinner. A ten minute job took an hour and a lot of pain. This past Xmas it only took 25mins and less pain. I also managed to stay up until 10pm whereas the year before it was 8pm. I am not 2 years in yet and I have good days and bad days. The other conditions I have have taught me that I shouldn't look too far ahead. There have been times I have been bedbound for a week and like you say stare at an inanimate object for ages with my mouth hanging open. Historically i have called myself all the words for lazy you can think of. Now I know that as soon as I am able I get up and at 'em. The trick is not to then rush around. I take 1 day activity...one day rest.

You are still in the very early days and it gets easier. Hopefully as the inflammation is controlled the pred will come down.

Ps I always build half an hour lay down on the made bed after changing the sheet..and God help me...the quilt changing. If I had an other half they would be doing those mundane tasks so I could save my energy for more pleasant things. Keeeeeep ranting.

[Hidden in reply to Hidden]

The fact that you can relate to it and it resonates with you... is amazing!!!! I really thought, this would be the one that people would be offended by... because losing "hope" is bad for the individual, but detrimental to the larger group. I don't want to cause anyone to lose hope or become melancholic. Besides.. I do it so well for all of us!!!!! : )

[Insight329]

Mic drop. Mamici1 walks off stage to tremendous applause.

(Announcer: “Ladies and gentlemen, Melissa will be in the lobby for a meet and greet in which you can have her sign your copy of her latest book. Please be understanding if her fingers wear out and she uses her signature stamp.”)

It’s that good. It’s our ‘voice’. We can share your ‘rants’ and say “This”.

Ohhhhh, how I wish you (and us) didn’t have to go through this.

[Hidden in reply to Insight329]

Oh my goodness, oh my goodness... I was so afraid that the PMRGCAUK community would ostracise me for being a foul mouthed, anti-social, depressive, bad influence!!!!!!

The fact that you actually like it, gives me hope!!!!

THANK YOU!!!!!

[Insight329 in reply to Hidden]

More like authentic, raw, real, open and honest with a touch of Betty Davis.

[Hidden in reply to Insight329]

Ha! Well there ya go... You can never go wrong with Betty Davis!!!!! Thank you!!!! And authentic is the BEST compliment you could ever pay me!

[Hollyseden in reply to Hidden]

Melissa You are just putting into words what most of us have thought and felt at one stage or another. You say it so well too 😊 "this too shall pass" just maybe not as quickly as we would like. Here's a wee virtual hug in the meantime 🤗

[Hidden in reply to Hollyseden]

Ahhhhhh, thanks for the hug! Good one. ...and thank you for the support and validation that I am touching on something that perhaps a lot of people in this community are feeling. That is really important to me. : )

[daworm in reply to Hidden]

May god have mercy on your...ah fuck it, excellent rant..having a bad day myself...pissed, angry enough to cry for the wife, very frustrating this thing..and I'm only 4 1/2 months in!!

[Hidden in reply to Insight329]

😂😂😂

[Hidden in reply to Insight329]

😂😂😂

[TooSore]

Oh I so know those thoughts and feelings! But I was so much worse off pre diagnosis. I had that lovely euphoria of prednisone for a few days when first starting (so happy to have a name to the pains, a plan, some relief, that I didn't even care that it was an autoimmune and would take years to go away) I've had rough rough days following a crazy tapering schedule from a doctor who didn't listen and then relief again when I found a new doctor who is more sensible. The fatigue for me is the worst part of the journey. "I want to do more" is in constant battle with the need to rest, complicated by being a single working mother of a teen girl. But now almost three years in I can comfortably say that it does get better - your body adjusts to the prednisone, your mind settles to the new reality, and you learn to celebrate small successes. Maybe for me it's easier because I'm used to celebrating small steps for the children I teach, I don't know. I can say that I found cranio-sacral therapy helped me feel more like myself, almost a chance to reset. Meditation, with deep relaxation did as well. I've hit the stage where I'm trying to rebuild. Regain some muscle strength and endurance (without crossing the line of overdoing things -not easy) and find my house which has really gotten away from me. Looking forward to spring and warm weather when all things seem to be more in the realm of being possible. Hang in there - there is a light at the end of the tunnel! Hopefully not from a train 🚂 coming at me 😄

[Hidden in reply to TooSore]

I hear ya sister! I vacillate between a hesitant acceptance, indignation and outright rage! Hmmm? I like the "celebrating small steps with children," comparison. Maybe that's my problem... I worked for American Express (Global Technologies) for 35 years... as a Project Manager! I was used to "MANAGING, DIRECTING, CONTROLLING" every aspect of EVERYTHING! ...but this damn PMR/GCA just won't be managed!!! What's up with that? ; )

[Insight329 in reply to Hidden]

Yep, it dares you to get into the ring with it (on your good days) just so it can sucker-punch you. PMR was added to my GCA this week. I’m not surprised. I’d known it, my Rheumy knew it and we’d danced around it the last couple of visits. This week we made it official. It demanded to be recognized. PMR/GCA won’t be managed and wants to be spotlighted, it seems.

[SheffieldJane]

Having a better day now that I know you are back in the land of the living and still shouting and swearing at the fates. If you are ever meekly accepting, then I’ll be really worried. Please stop collecting evidence for the worst case scenarios. Remember that high doses of Pred do distort your thinking, so don’t believe everything she tells you, she’s not herself. If you get my meaning. Hugs. X

[Hidden in reply to SheffieldJane]

Ohhhh slam! Nail... Head... You are sooo right! "She" is filling my head with distortions and misconceptions! She is not herself.

And yes again, if I ever "meekly accept" anything, call 999!!!!

xxx

[MichaelW]

I did a Masters degree in Project Engineering so I can really relate to the anguish about loss of control. I’ve found that one answer may be setting SMARTer objectives - no longer trying to run the marathon but now walking to the local shop to pick up the paper. Not necessarily a recipe for happiness but a source of contentment nevertheless.

Michael

[Hidden in reply to MichaelW]

Yup... my goals and objectives are waaaaay to robust for my present capabilities. Need to rein them in.

[JulianJ]

Wonderful, sums us up so well. We do a "little" task and are wiped out for hours.

People just don't understand how the little things affect us. I do love reading your writings, they convey how you feel about this debilitating curse we have to live with.

We need to read about things that will help us, this is important, but we also need to know how we feel about what is happening to us, what we can and can't do and what we have done.

Keep on writing.

[Hidden in reply to JulianJ]

I agree... I'll leave it to Kate and the "Aunties' to write about the medical/clinical side of things. If I can even scratch the surface of the emotional/mental/psychological effects of these diseases, than I'm happy. Thank you for the support!!!!!

[bunnymom]

Complaining is my strongest weakness! I laughed and laughed and look at her beautiful satin nightie.

[Hidden in reply to bunnymom]

Yes!!

She is is in agony... but looks fabulous!!!!!!

PS - I do not look like that!!!!!

[teesher]

Melissa, rant away. Writing all those annoyances down is good for the soul. Keep writing and posting. I particularly liked "Let that sink in… All you have done, is change the fucking sheets!" Sounded like you were on stage doing stand up about PMR. This condition certainly has plenty of mileage.

[Hidden in reply to teesher]

Hahahahahahaha! I love that you liked that! And you're right... these conditions certainly do have unlimited mileage!!! However, I think I'd rather not have so much to work with! : (

[HeronNS]

You know, I sometimes feel that I'm a real whiner, but one day I happened to say to someone in my husband's hearing that I'd had a difficult six months and the expression on his face made me realize he hasn't had a clue. So maybe it's really still all bottled up inside, and just because I think all the time about how hard it is to do things, and how tired I am doesn't mean I've actually expressed it aloud to anyone.

My Lenten resolve to tackle a tiny bit of decluttering/tidying every day has turned out to be good. I don't beat myself up because I didn't achieve a sparkling house in a day, but congratulate myself because I've emptied a box of old papers, or found some art supplies that went awol months ago. 😀😎

Baby steps. Mighty oaks from little acorns grow.

[Hidden in reply to HeronNS]

I hate that I am "whiner," but I also know that if it doesn't come out, I'll explode!! So better out, than in, I say!!!

If I unearth these feelings and verbalise them, it feels like I somehow set them free and that takes away their power... allowing me to move on. Hopefully.

Good on you for the decluttering/tidying! And finding stuff!!!! Totally cool!!!

[HeronNS in reply to Hidden]

No you aren't a whiner. I was afraid that might appear to be what I was implying, once I'd posted and I knew you were on line and had already read what I said.

[Hidden in reply to HeronNS]

Oh NO, I am a whiner! I bitch, I moan, I complain. I rage against these diseases like I have a half a chance of beating them!!!! HA!

It's my dark side and I must embrace it... yin and yang, my friend, yin and yang!

[HeronNS]

You do express the feelings brilliantly. 💖

[Hidden in reply to HeronNS]

Oh, thank you so very much! I'm humbled.

[Hidden]

Hi. Mami. Just give those wings a little rest if you can! An coast a while. Top flyer you are.

Time to be easier on yourself now though & stop beating yourself up. This is Mr Perfect speaking!!! ( The mad squirrel hunter) ATB

[Hidden]

Not sure I'm a "top flyer," or even what that is... but you are right that my wings could use a rest! Feels like I've been flying for miles and miles... coasting sounds lovely! Time for you to be easier on YOURSELF too and let that squirrel roam free! ; )

[Mstiles in reply to Hidden]

I loved your rant Mamici1! Giving voice to those feelings sure helped me to feel OK about “being negative, complaining, etc. and asking for help” on this site, “ a big no-no instilled in me.

I’ve only been diagnosed with PMR/GCA 6 weeks ago and still struggle to believe I even have it and how serious it can be. Is this really what I have? Will I really be on prednisone for years? Family members don’t want to believe it either, and besides I don’t want to subject them to constant recitations of symptoms, so I’m so grateful for this forum where it’s OK to be real. Also for the empathy, the encouragement that it will get better, and the focusing on what we still can enjoy in life found here.

Your writing is amazing. Truly a gift. Thank you.

[Hidden in reply to Mstiles]

Wow! Thank you... thanks so much. I am happy (and somewhat surprised) to hear that my words resonate with so many people, but as we are all in the same boat, I guess I should not be so surprised at all!!! I understand what you mean about "not really believing" we have these awful diseases... I went to a second Rheumatologist, to get a second opinion, because I was subconsciously convinced that he would say it was a virus, or he's have a magic pill that would make it go away! Hahahahahaha! And yes, if one more friend or family member tells me, "Ohhhhh, you need to get off those steroids they are sooo bad for you!" I will scream! Thank you for enjoying my writing...it seems to be all I have right now so happy to share and know people are relating to the content. Cheers.

[rosajur]

For the first time ever I actually laughed over the depiction of PMR. I am 4 years, 3 months into it..2mg pred per day & sitting on the couch after doing a touch of housework, starring out, at trees here thank goodness, not the lamp, occurs on a daily basis. What gets me through is that not every day is the same. Some are actually ok & when the hard times hit, I'm a zombie. Very tempted to share this on FB but then not everyone knows my situation. Thanks for sharing it here.

[Hidden]

Good to hear that someone else has that "lost time," staring out the window at trees! (or lamps!) I don't feel so bad now... I'm glad my words made you laugh! If we don't laugh, we'll surely cry, soooo. So you are another 4 + year person, huh? See that scares crap out of me, for all the reasons I wrote about!

If you feel the need to share, please go right ahead... I figure the more people who have even the tiniest inkling of the devastation these autoimmune diseases wreak, the better. I think it helps my friends and family to read my rants, because I don't really talk to them in those terms or with that much detail... Thanks again.

[rosajur in reply to Hidden]

Yes, I was fit & active until the morning I woke up & couldn't move at the age of 53. Fatigue issues dogged me prior to that & in hindsight would have been related..Taking pred. 9 months later restored a degree of normality to life & I moved to the country (In New Zealand). Still am in la la land though...ha ha.

[Hidden in reply to rosajur]

Wow! 53!!!!!! I thought I was too young at 63! Same story... woke up, went to work, got a massive headache... it was GCA, and it changed my life in a matter of hours! And yes, I have had PMR for years... kept going to GP and he kept telling me I had all the normal aches, pains and fatigue of "a woman of a certain age." I'm in La La Land too but it's the 65 mg of Prednisolone!!!!! Hahahahahahah : )

[Hidden in reply to Hidden]

Lost time? I am missing biiiig chunks. My 20s and 30s are hazy (cough) and my 40s and up to 56 has been a series of missed months. I put it down to my brains way of dealing with severe pain. Once it's gone or greatly reduced I forget it ever happened. And I always truly think that at least one thing will be better tomorw than it is today.

[Hidden in reply to Hidden]

Hehehehehehe! Yeah... My 20s and 30s are a bit of a blur too! Hopefully yes... tomorrow will be better than today!

[Rimmy]

Hi Melissa

I really appreciated reading your 'explosive' expression of all the frustrations many of us share and are often rendered 'speechless' by - and I think that your approach is MUCH healthier than internalising all that destructive 'crap' !!

I also think about 'who' I will be when I emerge - possibly in years - from the tunnel - and wonder about ever being able to recollect or resume my 'old' self. I realise now - unavoidably - that I WILL be someone else - older for sure but hopefully with some insights from this whole PMR/GCA experience - and I am guessing like all other intense stuff I have had in my life - I will be in someways 'better' and in others not. But although I tell myself that NOW - this IS my life - what is happening at the moment - that nothing is more sure than it will keep changing and changing again and one day today looking at a sunrise it will seem a distant memory ...

I hope you feel much better soon !!

[Hidden in reply to Rimmy]

Thank you Rimmy, I t is what works for me.. better out, than in! You hit the nail on the head... it's the who will I be when I emerge on the other side that scars the shit out of me!!!! And yes... perhaps I'll be in some better "better," and in some ways "not."

Ch-ch-ch-ch-Changes

(Turn and face the strange)

Ch-ch-Changes

Don't want to be a richer man

Ch-ch-ch-ch-Changes

(Turn and face the strange)

Ch-ch-Changes

Just gonna have to be a different man

Time may change me

But I can't trace time

[S4ndy]

Great rant, I totally get this. You just missed out the head sweats which make you look like you just got out the shower 2 years into this PMR journey and doing a reduction to 16mg a day! Onwards and downwards! xxx

[Hidden in reply to S4ndy]

Not at all sorry I missed the HEAD SWEATS!!!!!

My new motto: "Onward and downwards!!!!"

[Jackoh]

Hi Melissa you are able to express your frustrations, fears, confusion, despair and emotions so well and I 'm sure some of the things you have expressed has resonated with many of us as we continue our journey and try very hard to "roll" with these difficult conditions of GCA/PMR.You are perhaps in one of the hardest parts of the journey:- on a very high dose, which can make everything feel unreal and dealing with the grief of a previous life and the precarious journey of another one. You will never be a "loser" as you mentioned Melissa. Part of this journey, certainly for myself , has been the more stark realisation that I am a human "being "and not a human "doer" Life I believe will change but many good lessons can be learnt along the way. We just have to look and learn - easier said than done , I know.

[Hidden in reply to Jackoh]

Thank you... very insightful!

Yes, the high doses of Pred are playing tricks with my mind and my emotions.. thank goodness, I very aware of this and remind myself of it often! And yes again, I do live in this "surreal" world where MY reality and the reality of others are in fact two, very different parallel universes!

I like what you said; I am a human "being," not a human "doer."

Words to remember!

Thank you.

[podo]

You're still a young woman Mamacia1, me PMR 15 years & still going (80 this year). With a sense of humour like yours, you are going to survive this and come out the other side still smiling! Best wishes and keep posting, PODO.

[Hidden in reply to podo]

15 years?????? What happened to these diseases burning themselves out???? I hope you're right about me sense of humour seeing me to the other side! Thank you for your support, I will keep ranting!!!! Cheers.

[Lanakay]

I’m getting closer to my expiration date too and enjoyed your honest post so much. I, too, wonder if I will ever feel like me again while I am still young enough to enjoy it. I’m 71 and am making the most of the good days. Thank you for the post. It made my morning.

[Hidden]

Thank you... Thanks so much! I am happy you enjoyed it. I guess we will just have to try and enjoy whatever iteration of our "self" we end up being, before we expire. (?)

[Janicep]

I too love your post and I struggle to do daily tasks that used to be completed so easily. I was diagnosed with PMR in November 2017 after about 2 months of intense pain in shoulders and upper back. Down from 20 mgs to 17.5 and managing the morning pain ok. Not used to taking things “easy” though and at 69 years age not ready to “slow down” and being not sure what is in store for me over next few years leaves me feeling cross with this “autoimmune” disease. I had never heard of it and I have been a nurse for 50 years!! Certainly not talked about much, so time we spread the word about how much it affects so many people.

[Hidden in reply to Janicep]

Thank you. We have something in common.. I was diagnosed (with both PMR & GCA) on November 13th, 2017! I'm surprised you (as a nurse) had never heard of it, but then again "they" don't really care to much about it, do they? Both conditions are considered "elderly" diseases (God knows the elderly are not valued!) and are treated with a drug that is "dirt cheap." No need to raise awareness or put time and money into research!

OH! sorry! Not sure why I'm so cynical this early on a Sunday morning! : (

Enjoy you day and thank you for your support!

[SheffieldSonia]

Oh! Melissa, you say out loud what I go around saying all day and often through the night in my head.

I am the eldest of 6 girls, had five kids, single parent, family matriarch etc, studied for and worked at two professional careers, never stopped. Lost my youngest granddaughter aged 21 to a rare cancer six years ago and have survived it all. Have a stent in my heart Currently caring for my husband who has dementia, emotionally very wearing. Am 77 on the last day of the month and often feel about 90.

I was brought to my knees early December stuck on the toilet at 3am unable to move with pain and stiffness and not knowing what was wrong with me.

I do now and it stinks. I was lucky to get a quick diagnosis of PMR and straight onto steroids.

I have managed people, difficult situations and come through the other side.

At the moment this ' thing' appears to be managing me. Powerless, embarrassed that I am not the usual me, moaning in my eyes, explaining all the time and yet looking normal and 'So well' as everyone says.

I have been in Scottsdale for a month and haven't been for a walk as I have pain in the hips, i normally walk a couple of miles every morning when here before and shock horror haven't been in a clothes shop yet. Unheard of !!!!!!!!!!!!!

I can't plan for this damm ' thing ' either, so, shall we go out for a meal tomorrow night turns into, well I will have to see how I feel.

I feel I have lost me and am finding it hard to build another me as I am not in charge of the components that would make, in my eyes, another workable me as this damm ' thing ' stops me when I think I am just getting there.

I know I am grieving for a lifestyle that has been snatched away from me, as I jokingly say I will be dead before I am cured of my PMR. Its like going to prison when you haven't committed a crime.

So Melissa you can rant for me any day of the week. You so eloquently put into words what I am thinking. Do rest in between rants though or there will be no energy left for you to change the sheets.

Have to stop as the pain in my right shoulder has reared its head and I cannot type anymore.

My last moan for tonight honestly.

[Rimmy in reply to SheffieldSonia]

What a life - SheffieldSonia - you are clearly one 'tough cookie' - and i just want to say i admire all your resilience - but also feel for you in your current battles !! I hope you get through this (PMR) part of your life sooner rather than later - and have some 'quality' time for yourself - cos you damn well deserve it !! Meanwhile a good 'rant' as Melissa has shown us can at least help us to let out some of the sense of 'unfairness' and the frustrations we all inevitably feel.

Take care

[Hidden in reply to SheffieldSonia]

Thank you SheffieldSonia. I am honoured that I was able to write something that seems to have resonated with so many people. You too are in "touch" with it all... the powerlessness, embarrassment, loss of self, change in lifestyle, etc... It sucks. You are obviously "one tough broad," and I mean that with the utmost respect!!!! It will be my honour to "rant" for you! Please take care of YOU! Namaste.