Can't grieve my old self. Have you?

[IlGattoPanceri]

Hi all, hope you had a restful night.I was wondering if and how did you manage to grieve your old self?

It's been quite a few years now that I am very affected by fibromyalgia, still can't work a cause of it, and still I don't accept how my life is now full of pains, physical and mental limitations, instability, etc.

I still have the mindset and hopes that I once have, to be very active, wanting to have a good career and wanting to do so many physical things like traveling, constructive stuff, going out without being crushed by chronic fatigue..

It's very isolating, people don't understand how brutal this illness is as you "look healthy".

I am going through bad depression as I can't seem to accept it. Every time I go out trying to do an activity, even a very basic one and pacing myself , I get with so much pain and fatigue that everything comes down crushingly on me, that I will never be able to live a fulfilled life.. and let alone being able to have kids.. I can barely look after myself. And just the thought of it makes me want to cry.

I am taking it day by day, hours by hour, I do celebrate the very little things, but still.. I am in this horrible place where as soon as I have hope to do something, I try to do it, it get crushed with the illness.

I have asked to have more psychotherapy to try to accept this illness. It's in the process.

I also asked to participate to another course of Pain Management. I am still waiting for an answer..

Do you feel like sharing your experience on how did you manage to grieve your old self? Or at least accept somehow what you have become?

Bare in mind I am in the UK alone, I have no support from anyone, actually had an ex that continuously put me down as lazy because he can't understand this illness so that surely didn't help with my mental health.

On top of everything I am fighting to have another knee surgery as last operation created other painful and mobility issues, still using crutches.. I asked to change surgeon as I don't trust him anymore and they are gosting me or avoid to move the referral to another surgeon , making me waste months and so having more pain... and this stress and pain of course doesn't help with the total flare ups and depression.

Anyway I apologise for my rant. Only you can really understand.

Please I will be grateful if you share what helped you to accept the illness and your new disabled life, what within you made you accept it?

I hope you are having a good day today, sending you a big gentle hug,

J

[Nothing_but_books]

I could have written much of what you posted.

My husband and his girlfriend both know I do everything wrong. They're not remiss about sharing said knowledge.

It never occurred to me to formally grieve the loss, but it never stops hurting.

For me, the absolute aloneness, no way to explain what my life has become and be understood, is devastating.

I wish I had a solution for us both.

Are you utterly convinced your old self is gone? I'm an old woman, and like all old women I'm a girl under the wrinkles and grey hair you can see.

We're both real. I still lie in the warm grass under the blazing sun. With my eyes closed I see yellow light. I hear birds.

I open my eyes and the light is dim around the chair that supports me. It's night and I'm alone.

[IlGattoPanceri in reply to Nothing_but_books]

Hi dear,

Yeah I feel you so very much.

Pretty same here.

I love how powerful and truth the feelings that you wrote and expressed at the end , especially when we open our eyes and the memories of freedom and beauty of before vs the harsh reality of today's life.

I am in my early 30s, but being sick since several years now. So frustrating I have got sick so early in life.

I can't see how can we properly grieve who we were before the illness if we still have hopes that one day can be better?

My old self it's not gone, and I think that's the issue.. I still want to do so much in my life, that I no longer can now.

I would love to be there with you, giving you a big warm hug and then go together to a nice big prairie enjoying the natural smells and sounds of life around us.

Having by magic a nice long chair in the middle of it because dear me I couldn't really lay on the ground or either stand up from it anymore 😅

Thank you for your reply,

Take care x

[Nothing_but_books in reply to IlGattoPanceri]

🌳🫂

[Yassytina FMA UK Volunteer]

Hello, I agree so much you have written here a lot of members will relate too and it’s finding ways too keep postive from this horrid condition, some days you want too scream from the hill tops why me , you take it hour by hour and day too day something I’ve learned I must do , I feel for you as people with children must be extremely hard , mine are grown up and I was diagnosed in my late fifties.its better too talk here with people that really get what you re saying and we all have too share our feelings sometimes. Me personally I will be honest and say I will never accept Fibro /othere conditions fully , but I aim too keep fighting for the good things and days where things make me smile. xx

[IlGattoPanceri in reply to Yassytina]

Thank you for sharing and for your kind words Yassytina, I appreciate it a lot

[Cat00]

I waited a long time to have children in the vain hope I might get better but every year I just got worse. I have many other conditions and none of them have good outcomes. Every 5 years or so I get another condition, this year its ADHD and a Leidens Gene Mutation, during covid I developed Bladder Pain Syndrome, pain begets pain sadly. That's why when I was 38 I decided to have children anyway, I'm in pain all the time, I always will be. I've had chronic migraines from childhood, IBS, Insomnia fibro etc etc if I didn't have children I'd still be in pain all the time. I had my second at 42, it's not ideal but nothing about our lives is ideal. It's exhausting, neither of my kids sleep, just like me, but it's worth it. Don't give up.I found acceptance comes with time. Everytime I develop a new condition I have to go through the process again. You get better at it gradually.

Life is best if you have interests, hobbies, passions. Anything that gives your mind an input that isn't just a microanalysis of pain. Try and occupy your mind and body with other things.

[IlGattoPanceri in reply to Cat00]

Hi Cat00, Thank you for sharing, I understand and appreciate your advice.

I am trying to keep myself occupied, and it can work yes, but I find that depends on the day, some day makes me very happy and others it's just puts me even more down as it outline the things I can't do.

Thank you for giving me hope for having kids one day.

What do you do as hobby?

Big hug

[Cat00 in reply to IlGattoPanceri]

I would say you need to do more than keep yourself occupied, you need to find something that really inspires you, reminds you why being alive is a good thing. We need reasons for living when in pain all the time bc it's easy to forget.I'm an artist, I trained as an artist but have never been well enough to put my degree to any use but I still produce artwork. I do martial arts and embed myself in exercise and strength training. I'm particularly inspired by the greatest cliché of all, nature. I scubadive every few years if I'm well enough, work with plants as much as I can. I also have a huge interest in geopolitics so there is endless amount of reading there, the list goes on. Try and be as curious as you can, it can stop the downward spiral inward.

[IlGattoPanceri in reply to Cat00]

Yes you are right ! I am already doing the most that I can, bare in mind I also awaiting another knee surgery and I am still in crutches so that limits a lot what I can do. Most things I like are physical in some way but I am already doing a lot of reading and Info, trying a sewing course now and hopefully when I will recover from the surgery my quality of life will improve, and who knows, maybe find someone to share my life with. At the moment my only job is to physically and mentally looking after myself, and it's a full time job that is..

Thank you for your message anyway, seems beautiful the things you are doing! Happy for you. big big hug

[Cat00 in reply to IlGattoPanceri]

Good luck, I hope you knee surgery comes soon and works well!

[Cassandra66]

Hi Good morning, hope that u managed to get some kind of sleep.

I get u fully as when I read your post it's like I am reading a mirror image of myself, I have been diagnosed 14 years now and so many other illnesses after that. I hope that everything works out for you. Give yourself a big tight hug 🫂

[IlGattoPanceri in reply to Cassandra66]

Good morning to you too Cassandra66 ,Thank you for your wishes, I appreciate it 🤗

Yes I have read tht many people gets worse and worse over the years, it scared me, but it also kinda motivates me to do the most that I can now, even do it's pretty much out of "desperation" if i truly think about it as I am not ready to give up yet.

It just that the constant battle to trying to be functional sometimes gets too much.

Thank you for your message anyway, wishing you many good things too ,

Big hug

[S21lyb]

Morning all,So I've read all of your posts and being a very long time suffer I still dream, try and hate the thought that I'll never see me again. I feel that I darent give up looking for her again, but every birthday that goes past it's harder to reach her. Regards grieving for her, I feel I can't let her go. She's the real me, not the person who sits here alone 98% of the time, but with my two furry companions.

I was always an adrenaline junky and I struggle to find a hobby and I've tried alsorts. I'm a people person at heart to and hate feeling emprisoned in my home. The bills get higher and I'm looking at moving to a bungalow. I have 35+ years worth of clutter 🤣, no memories really to clear. I try for as long as I can, but then spend three days in pain and depressed.

Anyway enough moaning from me.

I wish you all a fantastic day, painfree and full of sunshine and love.

[IlGattoPanceri in reply to S21lyb]

Good morning S21lyb,I feel you so much and understand what you are saying yes. I see myself in that.

I am worried about the clutter part, as it's not safe in many levels. Also mentally it's really not good for you. I have spent alot of time decluttering, and the more you do, the better it gets. It's very hard at the beginning, but then, after a while, you get "used" to it and will see more and more benefits comes from it. Check on YouTube motivational videos might help.

Less clutter= less stuff to clean, better quality of air, you feel calmer, less stress (as bare in mind, every time you see something's that needs doing it plays in the back of your head that you need to be doing something about it).

Be ruthless about it. We really don't need much to live. You can also watch "sort your life out" , I really like the show, and helps motivate and gives good tips on how to declutter.

For us I will say to don't to a lot at the time as it will create flares up, but a little bit every day also goes a long way.. you can do it !

Big gentle hug

[S21lyb in reply to IlGattoPanceri]

Thank you so much I shall take a look at the motivational programmes and set my stall.thank you for you kind words to ❤️

[Wobblygirl in reply to IlGattoPanceri]

Thanks for yr upbeat message abt decluttering.I'm trying; in fact I've been trying for the last 8yrs! I had some professional help initially to motivate me and since I've attacked only a corner at a time, when able!!!

2024 has bn a tough yr health wise for me, so not a lot of decluttering has happened! However a few wks ago I decided I could dump my professional papers...

It's only a start but it's taken me 20years to dump all those papers from my first career! It does take ages to grieve for a lost career or whatever...

I can now enter that room without slipping on those old papers... There's loads more to sift through but it's not an easy process to let go, is it???

I understand your quest to grieve for your former self but think abt what made you proud of yourself and enjoy those memories...

I think you should become proud of yr decluttering progress and how you've been willing to share your supportive ideals to others...

Fibromyalgia is so harsh but I know I've learnt so much through it, often through folk on here sharing, like you've done...

It's a process within this wonderful fibro community!

I still need the meds as the pain never ends but I can look at those moments when I'm comfortable and feel fortunate...

Thinking of you,

Wxx

[IlGattoPanceri in reply to Wobblygirl]

Thank you for your kind, supporting and motivating message, so so much appreciated ❤️Yes I would only keep one or two things that really have meaning, and the rest can go.. or if you are keeping it as a reminder, you can always take a picture of it, and discard the object.. so you keep the memory of the object without it taking over your precious space. You can do it! Be ruthless and you will be thanking yourself (it's very hard I know).

Big big hug, and thanks again for your kind message, it warmed my heart

[Fra22-57]

I was so angry as about 8 mths being diagnosed that I also got diagnosed RA.I suppose with out that I wouldn’t have got meds that help the other partially.Although it stopped me from ever being able to hold a grandchild again it isolated me because I couldn’t now be part of friends groups who went hiking etc .My family hardly visited as I couldn’t babysit I presume. So it’s us who do the visiting because we love them.Since being diagnosed in 2011 which I was told was brought on by the death of my beloved Mum my health seems to just collect autio immune diseases.But I have always been stubborn and I won’t give in so I try to do things and get away and travel with my husband who is a constant help.I know it will knock me back but I keep getting up again until I can’t .I still think of what I would of been able to achieve if …

[IlGattoPanceri in reply to Fra22-57]

I understand.. sorry to hear that. I am happy for you that you have a supportive husband, a family, and a home.. all things that I am dreaming about to be honest and wondering if I will never have.If I want to see my family I have to take a plane, and then if I want to see my brothers family it's even further away and as much as I love seeing my niece I can't look after her a whole day, too exhausted and painful.. so how the hell will I be able to have kids.. on my own I don't think its possible no and that breaks my heart.

I am happy for you that you travel, I find that very therapeutic (big flares up later on yes, but it's worth it I think).

I always too being very active, extreme sports, always out and socializing and wanting to try everything once in my lifetime . Now I am the empty shell of myself. But hope it's what keep me going, I constantly get knocked down by exhaustion and pain, then depression and then I try again. I am worried what would happen if I won't have any hopes or energy to fight.

Anyway to finish on a good note, it seems to be a good day outside, I will try my best to go out and do something, or visit a museum if I manage (at least museums have plenty of seats 😅).

I am sending you a big big hug

[saj01]

Me too!... I'm on my own as well... it doesn't help.

On painful days it just saps all your energy... we all know that much!. One of the problems with fibro is that unless someone has it ,they won't know what it feels like. It's not their fault. At the moment I'm going through a bad patch too... feeling very down and tearful..... not only because of fibro, but I guess the isolation.....and knowing I'm no longer the active, confident person I used to be. Strangely enough, going through covid isolation made a huge difference too.

Now I'm in my 70's. the knees and hips/ back are painful because of osteoarthritis and am waiting for results of x rays at the moment...

Some neighbours are kind, they ask how I am... I usually just say... could be better or better off than some!.... and maybe that is the key, that despite everything it's best to remember that there's always someone who is worse off than ourselves.

So allow yourself some time to reflect... (I call it 'wallowing time') ..... then get on with things the best you can. xx Take care.

[Rach1973f]

I find myself in the same position as you, I am still learning and really struggling to come to terms with my life now. My mental health has gone down but I suffer with reactive depression which has now come back after about 15 years of being off antidepressants where I had CBT but finding it hard to find any positives at the moment apart from I have a pulse every morning although sometimes I wish I didn’t I just want my old life back. If anyone has any tips I would appreciate it as need to get a grip on this

[IlGattoPanceri]

I feel you and understand fully. We have to be strong, don't do stupid things, and appreciate every single little thing. Do our best to look after ourselves, mentally and physically, little steps forward are great victories and also resting is very important. I still wish I could have my past life back.. but need so much patience to work in ourselves living with this illness. Ask for help to your GP, mentally for further psychotherapy and ask for pain management also, hydrotherapy? Big big hug I am there with you

[Josie-Anne]

Hi IIGattoPanceri,

I totally get you, I’ve had fibromyalgia and CFS since 2004 and I still grieve my old self. I’ve had nobody help me with it, diagnosed by the neurologist with and sent a leaflet about it through the post and that’s it, no help, didn’t understand what it meant and thought to myself it’s just a hiccup and I’ll get better but how wrong I was. My sister in law has lupus and ME but she gone on to have 2 children ones 28 now and the other is 32 so there is hope. I’ve tried doing alsorts but my mental health has gotten worse, I do mindful meditation with the calm app and the exercise bike, I try walking and did do Pilates but the instructor had to give it up as they were short at the hospital, I’m trying to build up to doing it myself but it’s not the same and there are few that do it where I live, I do hope that you can come to terms with your old self, just know that things change and so have you, get to know the new you and what your likes are which I find hard as I don’t know who I am anymore or what I like so I’m struggling too. Here if you need to talk ❤️

[IlGattoPanceri in reply to Josie-Anne]

Hi Josie-Anne thank you for your kind and understanding message ❤️ as much as I am glad you understand me and really see what I am going through I am also very sorry for you.That's it, that's another thing I am so upset about.. I am tired of feeling sorry for myself or others just saying they are sorry but involuntary ignorant on how to really help, or simply understand.. I don't want people to feel sorry for me, I just want to be healthy and have a normal life ffs.

Anyway sorry for the rant again.

You are so true that I constantly have to know the new me, and re adjust the can dos and my dreams and plans in life.. not easy. Still have to accept my situation first I think..

Thank you for your support, I am glad there are people like you here ❤️

Now I will go and try a free sewing course, hopefully will like it and manage to do it

Big big warm hug

[Josie-Anne in reply to IlGattoPanceri]

You go girl 🙌 hope you enjoy it and it becomes something of a regular pattern pardon the pun, unless you have it nobody understands it or what you’re going through. Just be careful of the push and crash (think your on a good day and do loads to catch up then in bed next couple of days) even if you have a bit of energy left keep it for the following day says she that never does 😬 I’ve attached below a couple of sight that have lots of free meditations for trauma, anxiety, depression, chakra cleansing etc they do help and you can use them anytime, huge hugs, here if you need to talk 🥰

Information

[IlGattoPanceri in reply to Josie-Anne]

You are so right! And happy that you are spreading this advice as it's easy to forget about it when we have a good day 😅 Ahahah regular pattern 🤣

Thank you very much for the Info there, I will have a look !

Have a lovely rest of the day ❤️

Sending you a big warm hug 🫂

[Josie-Anne in reply to IlGattoPanceri]

Oh if you tap on it you get the 2nd one underneath it, night hope you sleep well 🫂💞

[Carlt]

When I was 11 I spent 3 months in hospital with a ruptured appendix leading to many complications.

In the next bed was a little girl who was born with Osteogenesis Imperfecta...Brittle Bone Disease and her whole body was deformed and stunted due to her bones repeatedly breaking.

She was in constant pain and was unlikely to live until puberty but she was constantly smiling and talking to me and, despite the differences in our prognoses, she was the one who was cheering me up and helping me forget about my pain.

She had this mechanical money box, shaped like a tomato, which, when you placed a coin on a button, a caterpillar shot out and grabbed the coin.

When it did that the little girl would squeal with delight so my Mum used to bring in tubes of pennies for me to keep both of us entertained.

She made the most of her short life of pain and hospitalisation and, since meeting her, I have determined to make the most of my life and never complain about my circumstances (not always easy).

You asked if I grieved my life before my illnesses?

Not one bit...I celebrate how lucky I was, and still am, compared to so many others.

Why would I grieve for myself when there are others so much less lucky than me who have never known a moment of good health?

[Debsdelight72]

Hi llGattoPanceri,

What a life (no life ) I'm sorry to see another person being ruined by the curse of Fibromyalgia,

We hear so many people having to pull up our britches and sort it out? these are the idiots who know absolutely Chuff all about us or our fight to try and make something of our lives, I feel a fraud by which I mean, when ever someone comes on with the same (ish) question,

My usual answers would be,

If you can grieve for yourself please do, When I myself haven't, so my question to ask others, HOW do we grieve???🥺🥺

I had so much life in me and looked forward to every moment of it, Plenty of friends, A great night life (I apparently was the life and sole!!!!) A job I'd worked hard for and enjoyed doing,Money (that one was great) Wow you wouldn't believe how many shoes,handbags and pretty clothes, I was a slim woman in a great place with not too worries to worry about, Had a beautiful home and the garden to die for,I'd often garden until late, A jokey birthday gift from my wonderful, loving, patient and kind person I've ever met was a builders hard hat with a light fixed to it 😀

What the chuff?? Who is this person before me? I stopped looking!

So who I am now?? I don't know anymore I don't know sort of care anymore (mental health)

Well I'm really really not slim anymore,Friends soon turn into strangers, Had to give up work,😭😭😭No shopping trips for clothes and jewelry (soz can't even spell anymore) I was the one,workmates on pay day would move out of my way on break so Debs is off to buy some bling😊, Now the only time I go outside is to hospital and other appointments, I have more pjamas than clothes and slippers because I find out the slightest rub can cause me to shout out in pain,I wear sunglasses inside and out,even overcast, Very little taste of food and drink, I hide under the stairs if the door goes (anxiety a lot of diazepam, needed) Can't get up stairs on my own anymore (stair lift) Cant even have a proper bath by my self any more, Hubby helps me to wash I'm getting a grant for a wet room(thank goodness), My brain fog has stepped up a notch,

I relay on my power chair indoors as well as out, I miss not going out with the dogs

My Hubby and I will be chatting and I totally forget what I was about to say or what had just been said,My garden is 💩 because I haven't even sat out there for nearly four years now and I feel my symtoms (soz)are getting worse, Also I live in just my bedroom at the moment, I'm not sure why and I make a point of trying to be downstairs, It's getting longer,

Today was standing for approx 5 mins with my trolley before the crushing pain got too much for my lego feet or my back sometimes both at the same time, My spine feels like I've been kicked really hard and I have to get safe as quick as poss before I fall (again)

There is more but right now I cant do any more, I'm trying to grieve for myself but I just go into a mental break and have to start all over,

sorry my posts are always far to long,

Take care

Debs x

[IlGattoPanceri in reply to Debsdelight72]

Hi Debs,Thank you for sharing part of your story.. oh gosh I am so sorry to hear the drastic changes that this illness had on you. You explained well how you were before and now, I can see it clearly. Those memories seems so found and precious.

People that are healthy don't seems to truly understand how lucky they are. I am glad to hear that you have your hubby on your side, that's nice and comforting to hear.

I hope you are having all the help you need , like pain management, physiotherapy, mental health help etc as having such a drastic change of your life mush be so hard for body and mind. I feel you. I would have loved right now to be with you, having a nice cup of tea and chat away, or simply know that you are understood here and there are often an open hearted person ready to send you some love and understand ❤️ sending you a big warm hug 🫂

[Chocolatespice]

Oh it is so sad that it is such a familiar story. I was diagnosed with crohns disease on my 21st birthday, I've had 10 ops and I have had fibro for 9 years, ME for 15 years and I have addisons disease due to high dose steroid use. I was medically retired in 2009 from my dream job. I used to train surgeons on abdominal reconstructions on patients like me... very complicated with lots of comorbidities. I traveled all over the world and loved every minute of it. Not to mention the pay!! However, when I was told I could never work again, I felt like my life had ended. I spent the first 3 years not knowing which way was up. Trying to learn how to pace, trying to accept my new life, and trying to grieve for my old life. I have had years of therapy from a wonderful clinical psychologist and I am still having therapy from an EMDR specialist at the moment for trauma. Fast forward to today... my husband and I have been married 17 years, we have 2 adopted daughters, I am now an artist (low energy, wonderful results) and I am in a much better place. I struggle every day with my fibro and chronic pain. I pace and I still have days where I can do absolutely nothing and end up in bed for 48 hours. But I never would have believed I could be here in comparison to where I was in 2009. Please remember, you are not alone. There are so many of us out there who you can talk to. And you will get there. It is a long journey and it is a bumpy ride but have faith. Get the psychological help you need, fight for the right consultant and do not let them ghost you. Be pushy!! Your body will thank you for it in the end. It is hard and quite soul destroying but you can get there. Allow yourself to grieve, allow yourself to recognise you have lost. Then pick yourself up and focus on what you can do. The little wins are so much bigger than you realise. We could be so much worse off. Always here if you need to talk. Sending big gentle hugs your way. Take care lovely xx

[IlGattoPanceri in reply to Chocolatespice]

Hi Choc ,Thank you so much for your kind and helpful message, gave me strength and optimism for the future ❤️🤗

What a story you have.. beautiful and harsh at the same time.. very grateful that you have shared it ❤️ thank you for not letting me feel alone and for understanding.

Wishing you all the best and a big big warm hug 🫂