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.
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Zacsmimi
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Goodness, I could have written that - I actually read it to my husband - he said gosh thats you to the last detail. Corporate job - stressful - but still miss it both for the financial security and for the mental stimulation - although I cannot manage that now anyway. I want to do 100 things and can only manage a few, constant frustration and so it continues...... I am 18 months into the journey of PMR/GCA
I will also reply to your other post, it seems we are struggling in a similar way - at least we have this forum.
No problem in having a meltdown occasionally - something we all do, or maybe need to do!
As for returning to your old life, well maybe not in all aspects, but certainly in some.
It may be cliched, but what doesn't kill us makes us stronger. Everybody goes through life changing instances, but it's how we deal with them that forms our future.
We could all sit in a room bemoaning what was, but there is certainly no future in that, and who in time would be interested anyway.
Sometimes you have to accept what has happened, however much you hate it, and move on.
I thought I lived a charmed life - and in many ways I did, never rich, but never in dire straits, with a loving husband and children. So far, so good.
Then in the space of 14months I lost sight in my right eye, and my beloved husband on our 46th Wedding Anniversary, and I'm not telling you this to elicit any sympathy, but to confirm life does go on.
I could have easily given up, but for a couple of reasons - some of the last words my husband said was "I don't want you sitting at home moping, get out and enjoy life as we always have" . Plus I have two great children, and four smashing grandchildren, and feel it's my job to savour their successes because he's not here to, to pass on mine and his philosophy of life, and simply enjoy life as he told me.
Some days it's not easy, in fact it's bl***y difficult - but I'm still here with the same irreverent sense of humour that got us through those 46years.
As my brother says "Never look back!". We need things to change to make us more aware of life's ups and downs. There can be real plusses in the PMR life change in that we cannot carry on the hectic life we had before. One thing for me is that I hated waiting for anything and was generally unrelaxed. I was in the medical centre yesterday waiting for a blood test and was quite annoyed that I was called early as I was having a rather nice rest waiting, how I have changed!
I can also relate to your post....when I got knocked down I realized I had to let go of defining myself as what I 'did' into who I 'am'....still a work in progress....still a lot of grieving, don't know if I'll ever be used to/content with this new life...
First, thank you for your insightful and heartfelt post about your PMR journey and all that major Life Change takes away from (or, as you say, perhaps ultimately brings to..?) our lives and self-concept.
Well, where to start? I can absolutely identify with your account of the corporate / organisational 'circus', the stresses, strains and compromises that it brings - and the potential long-term impact of such on physical and emotional well-being. I've been there and got the T-shirt too, all in the name of Performance Management and 'Achievement'. Ho- hum..!
Sometime ago, I posted here about how an understanding (or not..) of our broadly defined Personality Type and the psychology of the Change process can be as significant in the coping / recovery equation as the bio-mechanical / scientific stuff of tapering plans, dosages etc. Of course, we are all different in our perceptions of Cause and Effect as far as illness and recovery are concerned - and of course it's a very complex topic clinically. But, I firmly believe that there is a little, at least, of the stuff of Mind and Body in managing and surviving this very complex physiological and psychological process unless - of course, the odds are stacked against us totally.
This isn't intended to challenge the very expert and dedicated clinical research around the causes of, and treatment for health conditions like PMR. Just to add that, sometimes at least, there are unknown (or perhaps, as yet un-researched causal factors?) that are yet to be uncovered or measured / proved analytically. From experience, this is where Medical Science and Human Psychology can sometimes be on different playing fields (excuse the clumsy organisational metaphor!). But it seems that the differing professional disciplines are at least starting to talk to, and trying to understand how these factors interact with one one another in unravelling the mystery of the causes and treatment of illnesses like PMR on both levels at once. Work in progress, perhaps - as with coping on the Journey with many other illnesses...?
As for coping in the meantime, I really like your 'Dance' analogy. You are so right in that Life can (and often does!) throw us a metaphorical 'curved ball', and adversity can be a great source of experiential learning and self development. We can lean to 'roll with it', and to quote a couple of old Chinese proverbs: The first is: 'First you take the Test, then you learn the Lesson'. The second: 'You didn't 'get' the illness, the illness got you'.
Keep up these great contributions on the Human side of coping with PMR. Sometimes, the Grieving process helps us either to make sense of what was / still is most important to us in our life (e.g People, Relationships), or to put them into a wider perspective (e.g. Status, Material Achievement), and perhaps to let go, emotionally, of these transient things in our 'past' life? The ultimate question is: 'What matters most?'.
Wow, that was philosophical ! Better open the wine and watch some comedy on TV now - I've always maintained that Laughter can be the most powerful medicine of all. Where are those old Morecambe & Wise / Freddie Starr / Les Dawson / Tommy Cooper DVD's..?
Thanks for your post Zacsmimi I definitely relate to all you said and it helps with me coming to terms with this chronic illness. Yep life goes so we'd better make the best of it before it passes us by. Now where did I put my dancing shoes?
Great post and you have absolutely nailed my feelings . Grieving for the full on life I had and coming to terms with my limitations has been hard. I have now decided to learn something new so have enrolled with the Open University. I can study in my own time and hopefully will give that sense of achievement I miss.
Good Morning Zacsmimi ..well what you have said is So true of this Chronic Condition..I will definitely show it to my partner,he is at the end of his tether with me after having recent bad flare ups which have left me more exhausted than usual and has attacked other areas of my body ..Upper arms, shoulders ,kneck on top of my usual sore areas..legs,left knee..i am often in tears because I am reminded that I am not getting around to finishing off jobs and needing to rest more which I make myself do .This last Flare came with the warmer weather..at the moment even loading the washing machine in the mornings are too much for me. I have a cleaner but at the moment she is only able to come 1day so I must look for more help. I have been in touch with my Rheumatologist and had some advice but it's not helping re pain-level,inthe 13years with this awful condition I have never known what tomorrow might bring and I have been with my partner for 8 of these years .I told him in the beginning that I had this condition..You sound like you have a very understanding Hubby which is nice .Everyday I wake up praying this awful problem has gone away ..i am pushed to do more than I know I can do , Family and Friends think it's all in the mind or I put on that I cant walk ..but my only pleasure is my Bowen Therapy and Therapist who listens and I love the relaxing treatment and at least it helps with the migraines .My next treatment is on Tuesday and I can't wait. All Best wishes to you and I hope you get relief from this illness quickly!! This Forum is Amazing and helps you realise you are not alone .. trish 29
Iwas diagnosed in December (great Christmas present) and have been positive and doing well with reducing the prednisolone until approx 2 weeks ago when I too hit a wall and all you are saying in this and your other post sums me up. I too have worked long hours giving my all for years and thrived on it . Until just like the computer on little Britain 'body says no' ! I guess we have to listen to our bodies and give them ( and ourselves) the lives we now deserve , not easy to accept and i do miss my old life .but I think I have no choice. Glad I've found this site to know I am far from alone . I suppose we need to give our new lives the same drive and focus we have our own and instead of planning work tasks plan pampering . rest periods. Hentre exercise etc Day 1 ...
Keep on dancing... it's fun and you'll get there.. I think everyone on the site feels pretty much the same as you do. It's a great support to know you're not on your own.
I would dearly love to dance again but have accepted that it can only be in my dreams. Thank God for meditation; and less celestial beings for this website!
Agree on every point. I have come to realize that PMR could be my life for years so there are major life adjustments that have to happen for me. I was diagnosed with PMR in February of this year and am still at 20. Below 20 I am in misery I am trying to live life on life's terms. (A good skill to have) You are more than your job. A wonderful woman with God given talents to use in a new place or way. I retire in 5 years so I too am looking at identity and activity issues. It's tough. But we have awareness and support here so all is well😊
well written! As women, we are usually not encouraged to put ourselves first. One of the greatest challenges/lessons/gifts of PMR is that we eventually learn to take care of ourselves in the way we have always cared for others. Welcome to the dance, and leave some time on your dance card to listen to the music.
What a wonderful collection of posts! zacsmimi, I wanted to applaud your post especially for your honesty and as we have seen you have struck a chord for many of us in what you wrote- inspiring! I think that we have all needed to reassess our lives since diagnosis. That is harder for some than others. I have been grateful that I am a counsellor as that has given me some useful tools and meant that I could get the help I needed when I needed it. I.e. Getting some therapy for myself last year ( 3 years in to the "dance" )when I was feeling the weight of elderly parents, a difficult sister, the high level of pain and frequent flare ups both of PMR and OA knees,as well as knowing that I really needed to get to grips with my weight that has been a lifelong battle.
Regarding the latter, I have now lost over 4 stone,despite being quite immobile and mostly on 11 mgs Pred. I say that in case anyone else has that struggle- it CAN be done! It has inspired me to train as an Eating Disorders practitioner, although I also know I can't do that until the PMR has at least abated a bit.
Anyway, love to all who are struggling with this insidious disorder. Xx
Hi Suzy just back from hols and read your post , 4 stone ! That's wonderful. Would you mind if I ask what sort of healthy eating plan you have been using. ? I try not to eat too many carbs and watch what I eat but I seem to be fighting a loosing battle. Wondered if you would be kind enough to tell me what sort of food you eat and when. Then I can be skinney too. Many thanks. E 💐
Are you SURE you aren't eating many carbs? Someone complained she couldn't lose weight despite not eating many carbs - but it turned out she ate bananas and apples as snacks. Most fruit, other than berries, is quite high in fructose so counts quite highly as carbs. I can't lose weight without being below about 50g usable carbs per day - that really isn't a lot. I usually eat no fruit or root veg - when I do, I don't lose weight.
I am definitely not skinny and never will be! I had a lot of weight to lose which is easier than when you haven't got so much. I went to see a counsellor who specialises in overeating issues and she helped me to overcome my conviction that I could never get rid of my cravings for sugar! So, the healthy eating is about making everything you put in your mouth count. E.g. Eat complex carbs rather than white( bread,sugar,refined etc.), anything with nutritional value rather than empty calories. The other important factors were to be kind to myself and not critical, and not to deny myself anything if I really want it! Because I have spent half of my life on a diet, this was a really radical plan for me but it is now possible for me to see that I can do this for all of my life, after all what is the alternative?
Having said all this, we all have our own journey and our own difficulties which I is why an individual approach is more likely to be helpful and effective. However:- DIETS DON'T WORK! I am proof of that!
What a wonderful post and just as I am thinking and feeling myself. I once had my own business employing 24 people and when I sold it I still worked part time right up until the illness, GCA in my case. I too grieve my old life where I once wrote long lists of 'to dos', only being happy when they were all ticked off. It's so hard to do so little, especially feeling so ill with constant flares. What makes it worse is not knowing when or even whether there will be an end to it. Many thanks for your post, it is good to know you are not alone.
I so agree with, and relate to you about being able to do so little after a full-on life pre-PMR. It really is frustrating (and depressing?..) but at least we know why it's happening. PMR is truly a nasty and debilitating illness, and life-changing in many ways. But maybe it's some consolation to keep in mind that it's not life threatening like some illnesses, let alone the tragedies that can come out of the blue.
I guess one of the main challenges for many of us with PMR / GCA is to adjust to things and set new (not necessarily 'lower') horizons for ourselves, physically and mentally / emotionally. And I agree with you that the uncertainty and variables around the whole process (the course of PMR / medication path etc) don't help at all when we have had the sense (at least!) of being in control of our lives previously.
Best wishes and try to keep your chin up - maybe think of this as just another challenge on life's journey? (easier said than done, I know!)
Thanks Mark for your kind comments. Would love to hear from those who have beaten GCA or are at least having a reasonable life and how long did it take.
Unfortunately, most people who have "beaten" GCA (or PMR) don't hang around the forums so you won't hear a lot. However, Celtic and Sambuca have both had GCA, spent 4 or 5 years (about) on pred, getting to zero a few years ago. They are both extremely active in the GCA/PMR charity and support group world.
The two other forums and the northeast support group website all have a section/thread where "recovered" people have posted their stories including some with GCA - obviously there are far more who had PMR.
And there are one or two about who have had GCA and have recovered in that they are in remission - but still take pred because of adrenal function or other problems.
We're all dancing with you. You've put into words what the rest of us are feeling. Thank you for that. It is a "different" life but it can be a happy and fulfilling life. Stay strong.
Oh Zacsmimi. Thank you so much for sharing this. Like Lesley2015 said, (if I had my wits about me) I could have written a good portion of this. Take care x
Zacsmimi - may I copy and paste this to join a set of such posts I have on another forum, mostly mine it has to be said but with "visiting speakers"? Like in this thread, there would be posts that really spoke to a lot of people because it put into words what they still couldn't grasp so on that forum we decided to have a corner specially for them so you could go back and read it again. The pred and the PMR do make absorbing such stuff difficult - but it is important to be able to revisit to do so.
I've often posted on the bereavement aspect of chronic illness of all sorts but sometimes PMR is particularly mean - even rheumies look down their noses at us and no-one realises that PMR is nearly as bad as RA - except it does less physical damage and so we aren't taken seriously. If you have to have an autoimmune disorder PMR is the one to have - it doesn't kill you. But its damage is far more insidious.
However - this is the sort of acceptance that is vital to be able to live well with PMR. There are things I can no longer do - but I have learnt new pastimes and made new and wonderful friends all over the world. This summer I have met up with several of them - a few of them are far more sick than I am and it is a good reminder of how blessed I am.
The psychological / emotional impact and implications of a chronic illness like PMR / GCA can be as serious as (or more so than?) they are physically. Such life-changing illnesses really do force us to face our mortality and re-assess how we lead our lives from day to day in the meantime. This can be especially difficult when we have led active lives previously, as many here will know.
On the positive side: there is often light at the end of the dark 'tunnel' and, in the process, we can make the best of what life's roll-of-the-dice has dealt us.
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! Better open the wine and watch some comedy on TV now - I've always maintained that Laughter can be the most powerful medicine of all. Where are those old Morecambe & Wise / Freddie Starr / Les Dawson / Tommy Cooper DVD's..?
Is there any hope for anyone?
Tapering pred and 'safe' dosage
New to group
