Still looking for a positive, upbeat, "it's a NEW year," happy rant? Don't look here.... still struggling mentally & emotionally, but physically? ...not bad, not bad at all. Shhhhh.
In a Dark Place : Still looking for a positive... - PMRGCAuk
In a Dark Place
49 Replies
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Powerlessness is what tips me towards the dog or the hovering crow and we do get plenty of that. Battles we can’t win, being wilfully or neglectfully misunderstood. You are one of the few people I would dare walk through that dark wood with, I just know you’d find the way out - just like St Pancras.
in reply to SheffieldJane
I would proudly have you by my side, in that dark wood, my friend... but would rather leave you at the coffee shop and come back for you later! I'd hate for you to have to experience that misery as well.... xxxx
Dear Melissa, it's OK to be in a dark place and admit it. We all go there, but for you who spend a lot of your time finding the funny and ironic side to show the rest of us it's can't be easy to admit, I realise that.
Years ago I spent some years in a long dark tunnel but because I had young children had no choice but to keep on. And I found out what? No more than all of the rest of us already know, that if you keep putting one foot in front of the other, there will be light again one day. Only thing is, it's a bl***y long walk sometimes! oh... and I agree, your feet hurt - and you spend every day wishing you'd thought to bring a torch
Keep on going, one foot in front of the other, and just because you spend a lot of your time making the rest of us feel better, never be the slightest bothered about admitting you aren't invulnerable. None of us are. If we were, we wouldn't be here x
in reply to Mai45
Thanks Mai45... one foot in front of the other is the way to go, for sure! I am thrilled that you say my rants help others "feel better," there is something about that thought, that makes it all worth it. xxx
Love your quote at the end!
We all need light and shade, otherwise how could we recognise them?
I fully support anyone's need to share and let off steam about the negatives, especially of this journey ( since that is why we are on here) . It is so helpful to anyone else who is having a hard time. It is really horrible to think we may be the only one struggling.
I must admit that I don't usually share my times of misery here, but I certainly have them. Right now, I am struggling with a serious lack of mobility, pain mostly in both knees, and having very little I can do, with all the time in the world to do it ( I have just had to retire due to ill health). I am very bored and feel like I am in a kind of waiting room until I see the surgeon next week about having the first knee replaced- privately as the NHS won't touch me.
On the other hand, there is much to look forward to as my son is getting married in June and in July, I am going on safari to (?) celebrate my 60th birthday. Sometimes this does sustain me!
Keep being real and honest about how you feel - it is much the best way!
in reply to suzy1959
Thank you... If even one person reads my rants and it helps them on their journey... I'm pleased. I hope that by now you are better and more mobile! I understand about KNEES, God, knows I do! I'm having my knee done privately as well... Good luck!
Stars can’t shine without darkness. You are a shining star sharing your truth with us, revealing many facets of yourself. Thank you again for letting us in. As a fellow sufferer, I get it (PMR, post partum depression, PTSD). Sometimes enough is enough and our reserves are empty. Hope we can help fill them up again some how, some way.
in reply to PMRCanada
Thank you for entering that dark space. I appreciate you all following me there. ❤️
Just be careful that the light at the end of the tunnel isn't another train...
And you never need go to the dark place alone.
We're with you....
in reply to GOOD_GRIEF
I feel that every day GG.... every day! It's what keeps me going! xxx
Melissa, I'm sure there is sunshine trying to break through those trees. 🔜 🌞☀️🌝
in reply to Patience47
It is.... it is. 🌝
WOW!
That is a hard read. Please listen on line to BBC Radio 4 Start the Week for 7Jan 9am....a professor talking about the relationship between physical and mental health.....an eye opener....but not news to most of us with these PMR and GCA diseases.
I have bought his book. He mentioned cytokines and depression and I was a fan.
Myself, I am feeling well, even excited as after 3 & 1/2 years I am able to put parts of my life back together. The mobility aids have been cast into spare room, as per physios instruction. Tonight I attended choir practice for first time since March (given up when I was too fatigued, achey in evenings ). Tomorrow I am trying a return to Ballroom dance lessons after 3 year gap. And next week we fly to Cuba for a delayed from August Golden Wedding Anniversary holiday. My Pred holding at 2.5 mg per day with symptoms controlled ( but will pack extra for contingencies).
Please believe there will be an improvement in your life eventually.
Try a little Mindfullness.💐💐 😱to🤗
Valerie
Yes , that was an interesting show , I had a great chat about it yesterday on Mark Benjamin's feed.
But it did feel like he was preaching to the choir who had been singing his tune for years with noone listening.
in reply to Valnvaughan
Thank you for reading V.... it was a tough write. I am so happy to hear you are feeling well!!!!!! Keep it up!!!!
Dear Melissa - yet another great post - and one thing - even obvious to those of us who also inhabit a 'miasmic haze' half the time - is that you are a fantastic writer regardless - and dare I say also because of some of your ghastly experiences. The fact we have all gained insights from you through all this Melissa is then a terrible kind of paradox - rather like that reflected in your Nietzschean 'forest' quotation ... One day - yes perhaps 'one day' in the future you will re-read these yourself and will be startled by the strength and determination which rings through despite your current feelings of being shattered and ground down by it all.
But for now in the 'darkness' the notion of any future consolation is likely to sound ridiculous and trivial and just too easy for those of us who are not presently battling such terrible 'beasts' to spout out. So yes - you are absolutely 'right' to say that unless we have walked in those thin-soled shoes ourselves it is almost impossible to understand or even imagine the impact of some experiences. But your great sensitivity and skill as a writer has at least enabled a chink of light, a glimpse and some relativity about where each of us 'is' in our own struggles with PMR/GCA and a variety of other illnesses, complications and side effects.
In this context and importantly - YOU are also giving all of us 'permission' to NOT be the smiling, shrinking 'graceful violets' that many would prefer we are in the face of illness. The idea of the 'nice' - 'sick person' - especially a 'sick woman' is not one we HAVE to be - nor do we have to be anybody else's 'inspiration' - something people from the 'disability' movement(s) are protesting about - ie. NOT wanting to be the (convenient) 'subject' of other people's condescension and 'inspiration' - which only creates a 'pity paradigm' of more helplessness and powerlessness - things I would NEVER associate with you Melissa !!
By contrast real empathy IS empowering and not manipulative or oppressive - it recognises the complexity of feelings and emotions people can experience without judging them for the forms of 'shelter' they seek or the places they must find just to survive - this is about REALLY being human and 'humane'.
Thinking of you and sending our love
D & R
XXXX
in reply to Rimmy
Always the perfect words.... thank you. ❤️
Think how wonderful it will be when the sun shines through. Rimmy says it all for me .
in reply to Chrob
Thank you Chrob, I can just see the sun glimmering!
Melissa, I admire how eloquent you are in times of pain and sadness. I feel your frustration! I have times when I feel I'm reaching the top of the hill ready to go over and down the other side, then pain returns, up the pred and now diabetes to add to the mix!!
Sending positive thoughts to you and ever so gentle hugs xx😃
in reply to York54
Thank you York54. Thank you. I hope you are on an upswing.... xxx
Up and down—down and up. I keep waiting for the doctors to say, "We made a mistake, you don't really have GPA." I feel as if I were going mad. The incessant thoughts of this illness occupy too much space in my mind. I'm tired. I'm angry. I'm sad. I want release. I want to scream out loud. Like you said, "Some have it worse." But, like a psychologist once said to me, "There will always be someone who has it worse. Allow yourself to grieve." I hate the "dark place." Some days, I worry that the dark place will swallow me whole. However, the light somehow finds its way back.
Your posts keep it real. Don't stop.
Wishing All a Happy New Year.
in reply to Canygirl61
I am hoping you are on an "up," and the future "downs," are few and far between!
Hi Melissa, I've been in the dark place with my companion PMR many times over the last 5 years... it can be hell. A Buddhist teacher, Tenzin Wangyal Rinpoche, helped me when I read his teaching about depression and anxiety, " Remember that your true nature is open and clear like the sky and is only temporarily obscured by the clouds of anxiety and depression." You will come back to your beautiful nature when you are ready. xoxo
in reply to coda123
What lovely words... Thank you! I am coming back.... xoxo
Its a long and lonely walk if you never say you are suffering .We all know how bad it can be and if someone didn,t stand up and shout .I am in pain ,I am in misery and I am angry about it .Then others would not feel they could vent and that would be so debilitating .Long may you rant it makes me feel like I am not after all a hypochondriac .I wish you steady walk to better feelings .The dark is what comes before the light . Shout out as you battle thorough the effects of last years trials . If you can,t go through it go round it .If you can't climb it dig under it ,Get through and shout all you want to ,Echo all through the forest we will hear you ! Words of encouragement although not tangible are still a powerful force .We can all help at least with those .
in reply to patriciawhite
The dark is what comes before the light, for sure! Thank you.... your words are insightful!
🌺❤️🌺
in reply to
❤️
Bloody Hell M what a cartload of demons you are pulling.......I daren't join you in the forest, but I am tied to one of those trees and I'm leaning over the pit you are in my hand extended to pull you out! Fondest thoughts MamB xx
in reply to MamaBeagle
Thank you MB! I hope you have been freed from the tree and are now running through the meadow in the warm, sunshine! xxx
MamaBeagle in reply to
I can see the sunshine. But not quite running! What about you?
in reply to MamaBeagle
My visit with Max has lifted my spirits for sure... my freakin knee won't let me run, but I too see glimpses of the sun!!!! 🌞
MamaBeagle in reply to
My OH has had both knees replaced within the last 2 years, what a difference, a positive one. It's v painful afterwards but the more you do the exercises the better the outcome. So pleased you are feeling better, and enjoyed your lovely time with the nipper xx
in reply to MamaBeagle
Thank you, Yup.... I am looking forward to the Post Op Pain! ...as silly as that sounds! I have had enough of this!
MamaBeagle in reply to
I get you! Look after yourself, you gotta timescale for op?
Mine' I just found out is 18th Feb, a repair jobbie, déscente de vessie they say in French.....
And I am definitely not looking forward to post op pain!
in reply to MamaBeagle
Wow! We will be recuperating together!!!!!
in reply to MamaBeagle
Feb 19!!!! 😳
MamaBeagle in reply to
You'll be walking like Hopalong Cassidy and me like John Wayne!
in reply to MamaBeagle
🤣🤣🤣 . I already walk like Hopalong Cassidy!!!!
MamaBeagle in reply to
Yep I expect you are......but not long now. And it can only get better 😊
I Hope you found writing that eloquent piece cathartic.
Allowing the darkness to drain from you in words of woe and wisdom can allow the sunlight in again.
Have a good wallow in that deep dismal pool, it is only by embracing the reality of all our feelings when dealing with this spectre of an illness that we can understand how to exorcise it.
The pretence of happiness is just as emotionally draining as any amount of angst.
You can beat the dog , distract it , and gain the strength to fight again , but sometimes you can only escape it if you do what you are doing and confront the dark.
We are all here for you , most importantly we hear you , you are not alone .
Don't feel scared to hold out a hand after you scream into the dark , there will be someone there to catch you.
Bee xx
in reply to Blearyeyed
Thank you BE... It was healing and cathartic to write and relive that time.... all of the responses were especially healing as well. xxxxx
Brilliant expressive writing Mel. Didn't know whether to laugh or cry!!
Love the picture. I've liked spooky, misty dark woods ever since I was a kid! (Weird)
That Nietzshe! Hey! He's a ball of fun isn't he!! Can't see him writing books about Noddy & Big Ears!! Keep Rocking On Matey.
in reply to
Ohhhhh, you do make laugh PD!!!!!! 🤣🤣🤣
in reply to
Hope so.
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