Grieving my old life and learning to dance: Adjusting to the bereavement associated with PMR/GCA

[PMRpro]

This is a post from this forum, posted by Zacsmimi. It expresses wonderfully the struggle we are faced with after diagnosis and as we work through the first year or so. Denial leads to a lack of acceptance - but once you have that acceptance you can progress.

"Although I was diagnosed nearly 9 mos ago, I still find myself reading old posts and feeling like its new information at times. The sheer magnitude of learning to live differently is probably the biggest challenge I have ever faced.

I am still unable to work, although my time at home often appears rather "normal", I go about my day quietly and depending upon how I feel, accomplish different amounts each day. I can usually keep up with my house, laundry and supper for my husband, but some days not much at all.

I'm very grateful that I have had almost no pain since the initial 3 weeks... And the fatigue and insomnia which was enough to drive me mad all by itself has lessened considerably.

I had an emotional "meltdown" this week, lost my mind temporarily when I was trying to do more than I could do and frustrated with my perception of less than adequate support from my adult daughter (who has two toddlers and her own life to manage). I yelled and cried and hung up on her. Totally shameful behavior. So, I went to see my sisters who are always tremendously supportive ( and are therapists/counsellors by trade) and cried for 2 hours and got it all out.

This is what I think I realized after all was said and done (is anything ever really all said and done?) I am grieving the loss of my old life.

* I am unlikely to ever return to the life I knew for most of my 55 years. Meaning, I am never going to go back to 60 plus hours a week, traveling hundreds of miles daily, hotel stays 3 nights a week... Always squeezing tasks in between other tasks. That high stress, constant pressure corporate life did not serve me well, and my health has to come first.

* I must learn a new way to live. I must learn to pace myself, and allow this to become my way of life. The gauges I used to measure my ability to keep going are gone, and I must learn to implement new ways of measure.

* I cannot trust my emotions or the way I feel at the moment to determine how far I can go. I may be thoroughly happy and enjoying my grandsons but that has nothing to do with measuring how much activity I can continue.

* I must accept that I have no way of knowing what tomorrow will bring, and I must be able to accept and adapt if plans are disrupted because my body needs rest.

* The reason I am so resistant to so much of the above, is because deep down, I am afraid that if I am not the "bigger than life" successful, competent professional that I was, I won't be anyone. That my job is Not who I am. That I can learn to find new ways to be fulfilled, and make a difference. Facing that fear has been very, very difficult for me.

* it is not weak to pamper myself. It is not shameful to stay in bed if I need to. Is is not a cop-out for me to say "no". I am not a failure because my body is sick.

* I must learn to treat myself and my body with the same care and compassion I would offer my patients.

* Life is a process, a journey. We may think we have a pretty good handle on the plan, or the direction; but the truth is that we really don't. Someone once spoke of her attitude toward this condition as being a "dance" rather than battle. I am learning to relax, and stop resisting what is, and accept... And realize that dance requires movement and flexibility.

* I will struggle as long as I resist. Lamenting the loss of my job, my income, my comfort zone, my strength, and my freedom brings me no peace. I will grieve my old life, and I will move on to see what Life has in store for me, because no matter how hard I try, I cannot change it. I choose peace. I choose to dance.

We must choose to be content, we must choose peace. The misery and the struggle is in resisting what is."

[Evercurious]

Thank you, PMRpro for posting all these great explanations and reminders that we are not crazy, lazy or hazy - just PMR travellers.

[Hidden in reply to Evercurious]

This story reflects my own somewhat. We're blessed that this disease doesn't kill, like cancer does, so must be thankful and feel blessed. Good job it's more an older persons disease, as pretty rotten for the younger ones to cope with job losses etc. I still often think about the lady that went totally blind due to GCA.....how must she be feeling !! We must count our blessing and just get on with it.

[SnazzyD]

Ditto

[Blossom20]

Thanks for posting this - a great explanation- brought a tear! I am still resisting after nearly a year

[scats]

I remember reading this before, so beautifully expressed and worth repeating.

[PMRCanada]

Oh my....reading this brings me to tears!! She has articulated my struggle and her story is almost identical to mine. I could have used this story to share with those closest around me, especially in the early days.

I was so frustrated trying to communicate to others, how I was feeling, but fearful of sharing as I didn’t want to be misunderstood, judged, or have my feelings dismissed (all of which happened anyway at some time over the past 3 years). I don’t have sisters who are therapists, but I did attend many appointments with my therapist in that first year, as she, at times, seemed the safest, the most compassionate and understanding, and she helped me with accepting my condition and making those all important, necessary adjustments (that reminded me of my loss of my “old life” prior to PMR).

Every new PMR/GCA patient should read this at the beginning of their journey with their condition. It resonates, it names the struggle and challenges, but most importantly is “normalizes” our existence with an AI condition.

I would love to share her words, with her explicit permission. Her words remind me that all you folks on this forum are “my people” and that coming to a place of acceptance brings peace....much needed peace as we grieve the loss of our life prior to developing PMR/GCA. As she says, acceptance and peace help us move forward.

I’ve always loved dancing and I love her analogy of “dancing” with the disease instead of denying and fighting. Indeed, 3 years in, I'm “dancing” my way through it all, day after day.

[PMRpro Ambassador in reply to PMRCanada]

She gave me permission at the time to use it on another PMRGCA forum - it is very much in the public domain.

[Blonde61 in reply to PMRpro]

Thank you for sharing this. I wish I could accept the changes that has happened to me but at the moment I feel like I'm dancing with the devil. It's not just dealing with the pain but how it makes me feel as a person and I long to have my old self back and not feel like I'm someone else. I am sorry to be negative and will work towards being positive because I know its the only way to get through this.

[PMRpro Ambassador in reply to Blonde61]

If you can't do it on your own - look for professional help. If nothing else, the energy you put into fighting can be so much better applied learning to live with it and finding by-roads to get where you want to be when the motorway is blocked.

[Blonde61 in reply to PMRpro]

Thank you

[Wraysbury in reply to PMRCanada]

I totally agree with you.

[DodiR]

Absolutely spot on.

[Horizon12]

So very well written. Thank you.

[Cyclegirl54]

Reminds me of myself 🌸

[bright-horizon]

This is a wonderful, and for me timely post. Thank you. I am now into my 3rd year of pred/MTX treatment for GCA and PMR and strangely this year is proving to be much harder than the first two. At first I worked very hard at 'self care' both physically and emotionally, with the support of my wonderful GP. A regime of regular yoga, reciting a daily and ever changing gratitude list, mindfulness practice and a little time with friends now and sustained me and kept my spirits bouyant (most of the time). The second year was harder because of Covid, but was also easier knowing that the whole world is suffering and that living in New Zealand I was relatively safe and 'healthy' - easier to be grateful.

But somehow this year has hit me hardest, I think because the rheumatologists had talked about a two year process. I know, hah! My weakened muscles have now led to painful problems in my lumbar spine to the extent that I am unable to stand or walk for very long as well as still dealing with all the difficulties of PMR and long term prednisone use. I have occasional set backs now that I am tapering between 5mg and 4.5 and no let up of the PMR pain. Even with the extremely slow DSNS schedule the inevitable setbacks have surprised me. I have just accepted that I will be lucky to be off the meds by the end of this year and have any chance of being back to how I prefer to live.

So I am grateful for this post and the reminder of how fortunate I am with what is possible and what I have learned through the illness and treatment.

So yes, choose to dance even if your body can't yet go along with your mind! I am doing my best to follow this advice.

[PMRpro Ambassador in reply to bright-horizon]

It may not be weakened muscles as much as inflamed trigger points and attachments that "stick" and which could be improved with manual mobilisation or other techniques such as needling. I keep upright with physio and pain clinic offerings to deal with the same problem you describe.

[bright-horizon in reply to PMRpro]

That’s very interesting. I do see a physio regularly and recently had beneficial mobilisation treatments by an osteopath. I have a daily stretching and exercise regime combining their recommendations.. Xrays show displacement of one vertebra (from a childhood injury) which an orthopaedic surgeon says is putting pressure on the nerve which runs through the buttock and down my leg. That often sets off buttock and leg pain after a little time on my feet. This became severe about a year ago about the time the Covid lockdown began, ie even less activity than before.

By needling do you mean acupuncture?

Thank you for all the very helpful, practical, informed and encouraging posts. This journey would be so much harder without PMRGCAuk. It’s on my daily gratitude list!

[PMRpro Ambassador in reply to bright-horizon]

No, not acupuncture. Here it is subcutaneous injections of saline or lignocaine over the muscles- generally where the fascia is inflamed and often called "wet needling". In German it is called quaddeln because it forms tiny bumps, like blisters, where it is injected but the English term is needling. It can also be done "dry", and I suppose then the effect is a bit like acupuncture but it isn't using the meridians.

choosept.com/resources/deta....

I had one pain specialist who did it with her thumbs - ouch, but very effective! Not that needling is a painless experience! Who cares when it works.

It might not be the vertebra - it could be as much the piriformis muscle.

[bright-horizon in reply to PMRpro]

Ok thanks for that. I’ll look into needling here. The piriformis is very much involved so some of my stretches are directed there and help considerably.

[Purplecrow]

Thank you for bringing this story back to us. We all walk parts of this trail, and continue to learn as days pass... I wish it were easier, but life's lessons rarely come without trial. Blessings, J

[Grammy80]

What wonderful advice....stop resisting. The forum and the folks on it are the gift that keeps on giving~!! Sort of like the Energizer Bunny--but longer-lasting and more meaningful.💖

[Golfer63]

Hello everyone. I am a little over a year into my PMR and down to 2 mg. The fatigue and heavy legs are challenging enough even without the mental fight. Has anyone or does anyone know someone who has recovered to a normal life again. Just trying to keep the faith.

[PMRpro Ambassador in reply to Golfer63]

There are plenty of people who have recovered and are living a normal life - they aren't here as a result. On one forum we had a thread for people to post they had got off pred, on another a separate section for the same purpose. This forum doesn't lend itself to that. There are several recovered GCA people here hoping to prevent others going through what they did.

But being off pred isn't needed to get back to a normal life - acceptance and adjustment can also allow a pretty normal life even if it is a bit different from before.

[Golfer63 in reply to PMRpro]

Thank you. Obviously getting off the prednisone is important but I was also inquiring about recovery from the fatigue and heavy legs. Thanks again for your dedication to this worldwide affliction and keeping us informed and hopeful.

[PMRpro Ambassador in reply to Golfer63]

You will only get off the pred once the autoimmune part of PMR is in remission - and then some of the fatigue aspect is resolved as well. Then it is a case of recovery - I know a few people who never seem to have much in the way of fatigue now, several years down the line from getting off pred and I assume Skinnyjonny didn't have too much bother with it when he climbed Annapurna IV 18 months ago!

healthunlocked.com/user/Ski...

[Golfer63]

I also had severe spinal stenosis at l2/l3. I had a procedure called LIFT, ( lateral interspinous fusion therapy)which is outpatient, but has brought my legs back to where I can stand straight again and walk further. I still have some nerve issues in my legs but have been told that they were pinched off for so long that it may take up to a year for some relief. You can go to YouTube and search minuteman g3r to get an idea if this procedure. They also performed a laminotomy and a foraminotomy to clear space for the nerves. Takes 3 months to recover. I am also seeing a physiotherapist to help gat my legs back. Hope this helps.

[Blurry62]

I appreciate this post. All so true.....I am remembering the day I stood behind a client fixing her hair, so she would feel beautiful. I had explained GCA and shared a little bit about the process of working through the physical changes prednisone brings; she quietly listened. I had a full royal moon face and had gained 40 pounds. This lady, whom I've known for several years remarked, "It's hard for attractive women to get ugly." I recall acquaintances walking right past me in the market because they didn't recognize me and neighbor commenting that my yard needed raking. Grandchildren didn't understand why Nana wasn't as much fun as she used to be. It's been H-A-R-D ............

These types of experiences are societal side effects of prednisone therapy. We all learn the lesson we try to teach the children in our lives; it's what's inside that matters and is of value. Outsides change constantly- medications take us via rocket blast into a realm we know not of. We learn and grow.

Most people don't understand GCA/PMR is a real disease. They don't see bandages, leg braces, or crutches. Where once was hustle and bustle- they see inactivity and can not see exhaustion/frustration. People can't KNOW this unless they HAVE this. I had to learn to listen when my body tells me to rest. That was difficult for me to learn, but everyone on this forum helped me get there.

The last 3 plus years has shown me those people who really drain me, and I have let them go. I've also learned who my treasures are, and guess what? Moon faces have more room for sweet grandbaby kisses.

Blessings to you all today.

Blurry62

[PMRpro Ambassador in reply to Blurry62]

"These types of experiences are societal side effects of prednisone therapy."

And a product of poor manners and self-centredness. Beauty may be in the eye of the beholder but “Everything has beauty, but not everyone sees it.” (Confucius)

[Blurry62]

Ahhhhhhhhh, lovely.

[Spirograph]

Thankyou. A year since diagnosis of PMR and just didn’t ‘get it’ till now that things have changed and that this flare up I’m experiencing is a result of my ‘denial’. And that I have to say farewell to my highly active life and ‘temper’ my activities and learn to ‘sit stiller’ and rest, adapt, and sort out the pred dosage. You’re words articulated what I am feeling. (Oh, but I miss the big hills in the Highlands; the gentler ‘wild swimming’ with wetsuit, gloves and bootees, my new alternative!)

[Nextoneplease]

I found this wonderful to read too. Thank you to the original poster, to PMRpro for reposting, and to everyone who’s taken the trouble to comment. Sitting here wrapped in a blanket, feeling almost too exhausted to move (though I’ve done very little all day) , the ideas of dancing with the disease, and of acceptance, really strike a chord. Thank you again x