I guess my biggest fear is the loss of me as I was.... fun outgoing physically able ... will i ever get me back or am I gone forever.
Just scared: I guess my biggest fear is the loss of... - PMRGCAuk
Just scared
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TJ03
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Oh I hear you. That is the biggest fear and causes grief and a sense of loss. But it is not like that. Yes you will need to adapt but you will get relief from that. Xxxxxxx
TJ03,
You will get back to your old self, it just takes time and a low carb diet. We do adapt to these terrible diseases, PMR and GCA, and learn a lot about ourselves. I learned to handle stress better and not worry about the little things and it has helped me. Be strong and be patient.
Enan
That is the truth. We don't have any choice but to change and make life work the best it can. Saying NO I can't do that today is getting easier and easier.
Everything changes over time. Of course you will be physically able and a fun person again. Perhaps you will also be deeper, wiser, kinder. This thing gets better, help it by cherishing yourself. X
I hope so. X
TJ03, those are the thoughts that go through my mind sometimes. I liked the old me and I feel a part of me is forever gone and I miss that piece (peace). But, there is also a part of me that is stronger, more understanding of what a disability does to people and what they go through to get through. I was a caregiver for many years and helped people get through their days and had to help many to get through what the medical field calls transitioning (dying). I helped my own husband get through cancer and go on to heaven. I cannot do that anymore and it has taken out a big part of who I was, now I'm on the other side and I'm hoping that now I'll be able to transition, when It is my turn, with the courage and the grace of my Husband and all the people I have known and grown to love. That is how I get my strength and I know I'll be a better me when I get to the end of the road my life has put me on. I hope you find your road. God bless you and all of our friends on this PMR/GCA road.
Hello. This wilderness of bewilderness is quite normal it seems. I was 54 and literally over 48 hours my life disappeared. Of course it seemed out of the blue but it wasn’t really; for years (in hindsight) my body was trying to politely tell me it wasn’t coping, but like we do, we carry on out of duty, various desires, financial pressure, ego, identity blah blah. So, it attacked itself, given a push by something else like a virus possibly. I’m not surprised if I’m honest. We often carry on in life expecting things to never change, but change it does. All we can hope for is a slow progression so we don’t feel too hard done by, but for some of us it comes in one whallop, like a major accident. I was grateful that on the whole this isn’t life threatening, which is quite a luxury after cancer, and IT WILL PASS. However, you have to hold up your side of the bargain by making changes to look after yourself properly.
So, on the up side:
It does get better
The Pred side effects improve.
It gives you an opportunity to make real positive changes to your life.
You’re not alone (cue bow from GCA/PMRUK)
New doors open, in time
It gives you time to look.
Yes, all this sounds lovely and happy clappy but there are many dark days, you can feel anxious, depressed, out of control, ravenously hungry, very weak, restless yet massively tired. Just ride it; it will go as the dose goes down. It very important you don’t thrash yourself and try to shoehorn your old life into a shape that doesn’t fit right now. I’m still getting over losing my job, gym, running, being supermum but I know doors will open at some point, I’ve just got to be patient to see how I turn out.
We all relate and sympathise with how you feel BUT - 15 months on, for me, I don't really feel there is anything wrong with me! I am on 9 mgs pred (going down to 8 and a half). If I try to taper too quickly, my body tells me about it (be sensible and patient). Be really careful about what you eat - in my case low carb, no processed foods, lots of healthy home grown (if possible) vegies, ginger and turmeric tea, regular exercise (find what you enjoy) and above all a (POSITIVE) attitude. I meditate each morning using Insight Timer (download on your phone) which really helps with the acceptance - send healing love out to the rest of the world. Try to embrace the bumps in the road - they are there to grow you and make you STRONG!!!
Hmmmm? I have no words of wisdom... or even confident words of hope, for you. The simple answer, from MY perspective is, "I haven't a clue." ...but regardless, you will always be YOU! These diseases are powerful, but they cannot strip your essence. You will be the you, that you were meant to be. Don't be scared, embrace the change.
I am not living the life I used to, but I think that life (saying yes to everything, people pleasing, working too hard blah, blah) is what led me to the gift that is Polymyalgia. Yes that’s how I see it now! Lower doses of pred and I don’t feel too bad. I can do some exercise...just not too much, some work....just not too much. I can socialise, but need to have a pm rest in order to do so, and if I DON’T want to do something, I just pull the Polymyalgia card. Wonderful! I know I am lucky compared to some, but luckily I am not hankering for my old life.
All throughout our lives we change but in our own time and at our own pace ,or so we think .This makes us feel as though change has been forced upon us because it has in a way .Suddenly and without warning just when we thought we were invincible . I was a child carer and an adult carer and I have been the main breadwinner and later shared the care of my grandchildren . Bang without any warning while I was still saying ,Ha i am fine I can do it all I always have . I couldn't .I have found change hard but as it was forced upon me I have accepted it .I didn't like that but in our lives change is normal .Just not in this instance does it seem to be .Find alternatives ,different ways of being you ,different ways of having fun with the kids . I got so stuck refusing to change ,Its hard to face up to it . You will always be you ,try to embrace the new you and make sure every one else embraces the new you too .Thats one of the problems you expect too much of yourself so you unwittingly teach others to expect too much .Look after YOU now . I never knew how to do that but it has been forced on me by this and if I can make you see that YOU are a priority then I will be glad .This is not a lecture just an attempt to help you see .You have to give in to the fact you are going to change and that will be a good thing .
DorsetLadyPMRGCAuk volunteer
No you are not gone forever!
Physically - just pottering along in the slow lane for a little while whilst you gather up a head of steam!
Mentally- slightly bruised and battered at the moment, but you will rally and the old you will resurface.
Hang about on this forum for long enough and you’ll realise we still can be fun and outgoing! and lots of other things.
Understanding, sympathetic and non judgmental just for starters. 🌷
I can empathise completely. Sounds like you are a super hero and a fighter and you don’t want to lose that. But fighting this condition means taking care of yourself, pacing activity, saying no when your heart is crying out to say yes, eating a low carb diet to keep the steroid pounds off and keeping mobile. There is definitely hope and I’m coming out the other end. Your inner strength WILL see you through the tough times. The love and support of family, friends and the information and help provided by this group make a huge difference.
I’m down to 2 mg, aquacise 3 times a week, a bit in the gym, walking most days, lost 3 stone so far and enjoying all that life has to offer. Everyone’s journey is different. Keep enjoying the small things.
Acceptance of yourself in gentle ways is key to getting to a good place. We don’t look sick so others have the same expectations they always had. We learn to develop our “no” muscle. Evidently, many on this forum went to an unexpected and abrupt slow pace. Simply do the best you can without the harsh judgment.
PMRproAmbassador
Some very profound thoughts have been expressed in this thread - think very hard about them. Do not try to fight to be "normal", to "beat" PMR - you will just end up feeling worse. Keep the energy for getting on with life. PMR doesn't kill and doesn't usually cause long term damage - if you have to have an autoimmune disorder it is not too bad. It's a pain in the anatomy - but pred helps a great deal there.
The real you is still there inside - and need not be lost. It won't happen overnight but you will steadily improve - in a year you will look back and see you have come a very long way.
Dear TjO3, dare I say that I am a 'Man' -well was once, amongst all these caring Ladies, but I am still a PMR sufferer- last 5 years and feel it today, was an very active scubadiver then , pain across the shoulders etc etc , my Lady friends have advised me to go back a couple of mg's- pred. and following their advice. and have done for a few years. thanks to all. Do try to keep up a modicum of exercise, fresh air, diet and food, good entertainment- the beautiful type and above all keep up with the company of your fellow sufferers - your 1st step you have carried this out- thank goodness for Women-creep ,creep, regards John
trish29• in reply to
Hello scubadiver, l so hope that your PMR is treating you kinder. We have been In touch a few times in the past .lf l could walk l would get out more as l am now in a wheelchair, the upper body is struggling to use my mobility scooter but l just hope 1 day these problems will lift away. Best wishes trish29
Might an electric wheelchair with a joystick control be better than a scooter?
Hello PMRpro ,Pete and l have discussed this but at the moment l can hardly use my arms or pick up anything and l need to go and try one out. The exhaustion at the moment just takes over.l am giving myself a bit longer to see if this bad spell will pass.l even thought of maybe hiring one rather than buy one as my mobility scooter is so new. I love reading your reply to most posts and l've joined a Research Survey for PMR/GCA given to me at St Peter's 2 weeks ago .love trish xx
A year into this at a young age diagnosis and Im still figuring out the new normal. I do believe in a higher power and its brought me much closer, maybe his plan all along
We were not brought here to be left here, its just a leveling before the next leap.
TJ03, best wishes and many blessings. Im in a much better place a year later, even with some symptoms that pop up daily. (for the record I am on 6mg pred and 15mg Methotrexate with almost no side effects. I avoided the MTX but had no choice a few months ago and its working!) Your healing is already happening, you just may not see all the ways yet!
XXOO
You are not alone! It’s over 3 years for me, I was extremely active, healthy, always watched my weight. My life went ‘to hell in a hand basket’ quickly. I now know things will not go back to the way they were. I try desperately to think 🤔 of those worse off, and not feel sorry for myself, but at times nothing helps. The forum Patient.com was a tremendous lifesaver, so I didn’t feel like I was alone. I guess the best advice given is ‘listen to your body’, and hang in there! Best wishes to you on this unwanted journey we are on! I am in MI, USA
Your words resonate with me TJ03, as I felt very much the same before, and shortly after diagnosis this past May. My emotions were all over the place going from being petrified pre-diagnosis that I had something fatal as I deteriorated and became less able, less mobile, to shock and disbelief when finally diagnosed. Although I was glad to be diagnosed and treated (what relief), I was now afraid of the pred I was taking and potential side effects.
At one point a very good friend came over to colour my hair, after a long time of not having contact from me. I had felt I had become someone I didn’t recognize anymore. I was only 55, and before PMR I was very outgoing, confident, loved the skin I was in, loved life, etc. Now I was exhausted, sore, stiff, unsure, afraid, angry that PMR had interrupted my retirememt, my relationships, my life! So I isolated myself. My poor husband watched me deteriorate despite his efforts and support.
My good friend and I had a heart to heart and she managed to bring out some of the “old Leslie”. We sang, and laughed, and I cried letting out a whole lot of fear that I had been carrying. She hugged me and reminded me that I am still the same person and that she would be there for me no matter what. That is what I needed to feel, hear and believe.
Four months since I started pred and I have now come to terms with my situation. I cannot control the PMR, but I can control what I eat (I’ve adopted a low carb, sugar and salt diet and have lost 22lbs), when and how I exercise (easy does it, build up slowly, water exercises are best for me), and who I share my story with and get support from. My husband, adult kids, friends and therapist are my supports, as are the wonderful folks on this forum. Like a big online support group who “gets you” in a way others don’t. They have helped me greatly with everything from tapering to tantrums.
Feel what you feel, it’s part of the process, a process that can resemble a rollercoaster, but eventually you will get off this wild ride. I’m hoping when I get off I will be a stronger, more patient and empathic person who lives a healthier lifestyle. I will still be me, and you will still be you.
Take good care, ask us anything, we will be here for you!
PMRCanada. Such an honest, realistic and uplifting reply that so resonates.
Think of yourself like a bite size Snicker. Still you but in a bit smaller package. We all completely get what you are saying. I have been doing this for 2 and a half years and I have had few days where I feel normal but I'm getting better and my quality of life is very good. I have just retired so that helps. I'm 62. Don't compare your journey to anyone else we are all very different and beating yourself doesn't help. You will learn how to handle your life in a new way.
Well I have been 2 years now not being "me". I am slowly being able to do things in the garden, with frequent stop to rest, and there are still a lot of things I can't do, but I am still optomistic for the future. I think once we accept it we somehow learn to cope with the limitations eventually.
'Fun, outgoing, physically able' isn't lost entirely nor forever. It is inbred within you. It is merely less consistent at present since these attributes require much energy! The good news is that this disease is not terminal and there is light at the end of the tunnel, with many variants of light and dark when travelling through. On reaching the end of the tunnel I am confident that you will rise like the Phoenix in all it's splendor completely in tact, especially since you have age on your side.
I am sat here in tears, so many lovely considered, answers and as is often the case on this site just what I needed to hear as I'm feeling sorry for myself again.
I too am missing 'me'. It comes and goes, some days are much better.
I do not envy you your responsibilities, I'm not sure how best to advise you except to say stick with us.
As you can see there is so much help and support here when you need it. Whatever your problem one of us will have experienced it and will be here to listen, even in the middle of the night!
Hope the responses reassure you. Wishing you all the best on your journey.
Hey gorgeous scats, how are you today??? DO you feel any better? Thinking of you lovely one. xxx
Thanks Daisy, better this morning, Had to increace by 0.5mg that should help. Had the grandchildren here for the weekend, don't see then very often so I over did it a bit!.
Then of course I had just said goodbye to them not knowing when I will see them again....
Yes that sort of emotional pain is going to stir up so much darling. I’m sending you my love and friendship and hope you see them very soon xxxx
Hi Darling, just wanted to write more to you. I am on laptop now. First up. The hardest thing I reckon is to get to a place in your head where you can accept it. I am not there yet and I was diagnosed a couple of months yet. Only yesterday I was moaning to a friend that she had done so much over the weekend, we are the same age and both have fibromyalgia, yet I had done hardly anything and had to rest in bed most of Sunday because I have been trying to walk round the block once a day and I got overtired. She said to me, "But Linda I don't have Pmr and you do. I am not trying to manage my steroid intake, you are". I swear this sounds mad but I had actually, on some level, forgotten all that when I was judging myself. I sat there and went "OH my gosh I forgot" and I felt horrible. I had to take in,all over again, how much my life has changed, how much it will continue to change, and it made me feel absolutely vile.
When I was a single mum I had two young kids and that is when my own health began to deteriorate. I got glandular fever followed by pleurisy that would not get better. I was the only person bringing money in and it was terrifying. My kids definitely were affected as yours are but darling they survived it and are definitely nicer people because of it. They saw my struggle and they now know that life can be tough but the fact that I always cuddled them and showed them I thought they were wonderful and interesting and the lights of my life made it all bearable for them. Kids are like that. If they are loved and secure they can cope with so much. If they see that they can bring a smile to mummy's face it makes them feel so good. You are in the hard bit of PMR right now, getting your mental processes around it.
I am so sorry you don't have support. i didn't either. I had no family. I had a mother who lived a long way away and who had not been involved in my upbringing. I had no siblings or other relatives. It was lonely and horrible but I did it. It does mean that you work harder at friendships and some friendships are intense then burn out, the trick is to let them go and to accept that you are making room for new ones to come into your life.
Are you in the UK? I would urge you to get every single bit of help you can. This is no time for pride. If the social services or whatever can help in any way, or the local doctor's surgery has any contacts for help services that are free or heavily subsidised grab them. Get a disabled sticker. See if there are any volunteer agencies that will help. If necessary ask for help via social media or local paper. I mean it, pride is an empty and pointless thing right now. You need human contact and support. Ask for it. I did and I still do.
You also need to get enough pred ...if you are out of extreme pain you will be able to start walking once a day. No one wants to be on it. I had to be on 75 mg while they tried to find out if I had giant cell arteritis and then I had to wean down, its been so so hard. I went from 75 to 20 in a week which was ghastly.
NOt sure what else to say other than please hang in there and come here every day it will help. xxxxx Linda xxxxx
Dear TJ03,
Now forgive me, for telling 'it', like it is. In answer to your question....NO you, almost certainly, WON'T get back the OLD 'you'. Now I have THAT 'Cleared Up' I can' and, YOU can, move on.
All that said, is that 'Fun Loving' person, so far away? Look in the Mirror, isn't she Hiding there? Are you SURE that you didn't see her? There she is, there all the time! Your 'Relationship', with her, will change, I can almost Promise you that, but she IS still there. Look closer, isn't the love still there too? Can you 'feel' her, isn't she calling to you? Put your arms around her, she is crying! Tell her that you never really left, that you are only 'next door', that you never really abandoned her. Now tell her that YOU will help heal HER. Dry your eyes...you just took a BIG step. You know that 'Special' treat, that you were 'Saving', open it now...Share it with her....You both deserve it!
Sorry to have you 'Howling Buckets' TJ03 maybe now you can, in part anyway, start to answer your own question. Yes it IS an 'Uphill' struggle, good days, bad days, reasonable days, great days, sh.t days (plenty of them) but mostly 'Coping' days. One 'thing' though...Don't try to Go Back, always Forward. Yes, of course, you can Remember the past but, please Don't, Dwell on it. You are, what you are NOW- not what you were THEN. You Remember a, very lovely Childhood Time- perhaps a wonderful Christmas Present, how happy you were, about it....Back THEN- a 'Wetting/Pooing doll' wouldn't elicit the same feeling NOW, would it? Do you see what I'm Driving at?
Anyway I think that I've 'Drambled on', quite enough, now. Go and have your Treat you, really do, deserve it. I hope that you understand why I said, these 'Things' TJ03- it, really WASN'T intended to 'hurt' you. Please Forgive, my Bluntness.
AndrewT
Hi Andrew.
Ugh not sure if I hate it reply or love it's honesty.
I need to come a journey to accept this situation I guess.
I preferred old me and old life. I'm feeling very frustrated worth is and downs and good days and bad.
Thanks. TJ
TJ honestly we are all just doing the best we can. I look back at young Linda who rode horses. Swam like a fish. Danced and could drink gallons of wine. Working full time and the word exhausted not in my vocabulary. Now I am a wreck of a woman. But. I can find so much to be happy about and I am way older than you. It’s not all doom and gloom. You won’t always feel like this darling. Xxx. Linda xxx
It is hard at first. I compare it to mourning your previous self, the first stage for all of us is denial, then very slowly acceptance to a greater ot lesser extent.
We are all different and hopefully,as you are younger than most you will have a better chance than most of rediscovering 'you'. Daisychain is right get all the support you can. Good luck to you.
What doesn't kill you makes you stronger.
PMR doesn't kill us. Therefore it makes us stronger.
Yes - even this morning I was asking myself the same thing - though I've asked it here on the forum too - the physical change in me gets to me at times - the extra weight! But emotionally I feel most peculiar - not myself at all. (My husband asked one day "where is my wife gone" - he was not being nasty at all but I wasn't my usual sympathetic self to something or other). But I think its the constant battle with the tiredness - takes up all my living day trying to cope in work. And waiting on that magic day when it all lifts!!!!! I've had ME and fibro for years but never did it get to me like this PMR. But you WILL get yourself back - as I will - when this has run its course!!! So that keeps us going. Very best wishes.
Hello TJ03..l understand you feeling scared and l send All Best Wishes for you to stay strong. I ask you to fight for answers about your condition all the time because we as sufferers don't get told enough . After 14 years with PMR and other things mixed in l'm still trying to get strong.This year has been so hard and l am now mainly housebound, l can't even manage to get to my PMR/GCA Support Group meetings in Chertsey which l used to find so useful talking to other members .l saw my very kind Rheumatologist 2 weeks ago and had a good discussion and now that l can't seem to get my upper arms,shoulders and neck free from pain that it appears there could be some Fibromyalgia mixed in as well. I told him I want to give in but he said l was made of stronger stuff than that. I went to my Osteopath on Tuesday who fitted me in for strapping that Sports Players have and it has released some of the pain. She said that she remembers the fun loving me when she first met me about 10 years ago, but these days l spend most of my days in tears. We must keep fighting. Best wishes trish29
Trish your story is so sad I send all my love from Ireland. It's easy for others to say don't give up but when the pain is so bad I understand what u mean. Missing my old ability is the hardest thing. I often question y I have been dealt this card.
I hope today is a better day maybe if u have had some relief from the strapping.
I cry most days to. Have u made your consultant aware of your moods?
Thinking of u TJ
Hello TJ03..l agree with you and yes my Medical team are aware of my low moods at time but a lot of that is because l am constantly on Doxycycline antibiotics due to recurring Cellulitus which doesn't get better if l go below 14- 14.05 mg pred.l would love to be able to do more as others around me don't understand that l only do what l am capable of. I confide in my Osteopath as she knows me, l used to have Bowen Therapy and sometimes ultrasound which l used to really relax with but Dr Hughes my Rheumatologist suggests just sticking to strapping for now because of the PMR inflammation. Where in Ireland are you ,l have cousins in County Mayo .l will be watching your posts with interest. trish 29
I'm in the north near Belfast.
I've had a tough day today and pain relief was all that got me through
I understand what u mean about wanting to do more. I become so tired and sore so easily and have to rest doing silly things. I feel so unfit. The other day by boyfriend called me lazy I was so angry with him.
TJ
Good morning TJ03..l hope you are feeling better today. I have frequently been got at for not being able to keep up with the jobs around the house even though l pay for a cleaner twice a week. Feeling inadequate most of the time, maybe your boyfriend can do something to help you. You mention being sore, is this in one area .l am useless without my upper arms ,they seem to stop the rest of my body from working and feel like they are down by my ankles and feet. Rest is the only answer.l pray you have a better day today trish29 xx
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