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Rest in Peace...Life Before Scleroderma

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Hello All


I want to start by thanking Miocean for sharing her need for counselling and thank you to others who have as well because now I can.


I have had scleroderma for 4 years now and this week begin bereavement counselling so I can finally come to terms with the death of the life I had before scleroderma, at the age of 39 my life died but I didn't.


I know some people have relatively few changes to their lives when scleroderma barged in but I was not one of them. I lost my health and the opportunity to ever be really well again, mobility as I can't even get out of the house on my own, my career and the ability to earn an income again, a social life, my previous appearance, ability to be independent, ability to care for my husband, ability to manage and clean my own home and ability to rely on my body for starters.


I and my husband decided that we would accept that scleroderma could actually work for us rather than against us and it hasn't been all bad by any means, ISN and the people here are one major benefit. Life is different for sure but like I've said before just because it doesn't look anything like you thought it would that's not necessarily a bad thing. Nevertheless being determined to make something of scleroderma to benefit myself and others doesn't take away the pain and trauma that comes from having my life die, it gives me purpose and a focus which is so important but it's no longer enough and I have just come to realise this.


Like most people I am wonderfully flawed but one good point I have is that I own my stuff (behaviour and causes of it), this can work against me when I inadvertently own other people's stuff as well but I'm learning to distinguish between "my bad" and other peoples. Anyways I know that "there's something rotten in the state of Denmark" and I am not prepared to have it influence the way I behave so I am going to confront my grief, bury the past and move on.


When I spoke to the counsellor on the phone and they commented that the life I had wasn't coming back I burst into tears, to hear someone else say it made me realise this has happened to me. When I emailed the counsellor I didn't initially talk in terms of me and mine and that also made me realise I haven't owned my grief yet. Of course there is going to be grief...DUH!!


Well get out the hankies because I am on my way to snot city :emoticon-crying-kleenex: , I have to visit it so I can bury the corpse of my life before scleroderma, it's beginning to give off an unpleasant odour and deserves to rest in peace.


Take care.

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Amanda, how incredibly brave you are!!


You always make me feel extremely humble as I'm one of the very fortunate ones to whom Scleroderma is managable and I can still enjoy a good quality of life despite the disease. (Not a day goes by when I don't thank my lucky stars!!)


I really hope that the bereavement counselling you receive helps you to confront the grief you're experiencing at the tremendous loss of your previous life and that it does enable you to move on successfully. Please do remember that your good friends at ISN are here to support you and help you as much as we can. My hanky is at your disposal for your visit to snot city! :emoticon-crying-kleenex:


My very best and fondest wishes to you,

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Dearest Amanda,

The title of your post scared me. :P I felt better after reading that you were putting your mind at peace...


Like you, my life ended as I knew it, suddenly and with no preparation. In a period of 7 months I went from an active lifestyle to learning to walk again. Fortunately I recovered that ability. I didn't have any knowlege of my kidney failure, or a slow decline in function to give me time to make decisions. I didn't have a chance to say good-bye to "my kids."


I did seek counseling from the Grieve and Bereavement Counselor I sought out when my mother was dying. I didn't know what to do about my ambivilant feelings regarding her dying so I went back to the Eating Disorder Counselor I had seen for several years for compulsive overeating since he knew the most about me and he recommended her. I used her two more times over the past years, once when a friend was going to donate a kidney and the whole thing made me so upset, and once a year ago when a combination of the medications and the reality that a kidney transplant didn't make everything go away. Since she doesn't take my insurance I started with a new counselor who I really like and "gets me."


When I was in my 20's I saw my first counselor. I was having panic attacks and did not know what was happening. I also had a strained relationship with my mother as my father had died and he was my ally in the family. At that time, seeing a therapist was almost taboo. When my doctor suggested I seek help my mother said "no child of mine is going to see a psychiatrist" like it was the worst word in the language. Whether that counseling helped or hurt I am not sure because I would come home and hear "what did you tell him about me today?"


I also sought joint marriage counseling for my first marriage which kept it going a little longer but it was so toxic there really wasn't a way for it to survive.


So you can see I am no stranger to seeking help. It is important to find someone who is the right fit and is the right branch of counseling. Your life as you knew it has died, so a Grief and Bereavement counselor would be able to help you deal with that. Some people are afraid to seek help, sometimes because they are afraid of what will come out, or they are concerned that it will reflect badly on them or not look good on their work record, or they can't afford it.


My current counselor gave me homework the first time I saw her. She told me to make a list of Things I Would Like To Change About Myself But Don't Know How and Where I Would Like To Be in 12 Weeks. I looked at what I wrote and am making progress.


You are a very brave person. I'd cry with you but I don't cry anymore. :crying:


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Dear Jo


It's so important for people to hear your story, particularly those newly diagnosed, because not everyone's life is totally devastated by scleroderma. Remember that being diagnosed early, treated early and being very fit prior to scleroderma worked in your favour as well and interstitial lung disease is nothing to be sniffed at either. We need people at both ends of the scale otherwise we become unbalanced. Funny word for someone about to go into counselling to use! Freudian slip maybe? :lol:


Dear Miocean


Many years ago I had counselling over a two year period and like you know how important the "therapeutic alliance" is. I am looking forward to shedding dead weight and hope that this counsellor prescribes exercises as yours did and my previous counsellor did as well. I like to work with structure and am not into just talking things to death, there has to be an aim and things I would like to change but don't know how is a really good place to start. I'll let you know how it goes! :you-rock:


Thank you ladies!

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Dear Amanda:

I wish you (and others) all the best with counseling and moving on with life as it is, not was. Thank you for being brave enough to share your thoughts and fears.

Warm hugs and best wishes.

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  • 3 weeks later...

Hi Amanda,


I miss my old life too but changes in my life whether good or bad will always happen and can't be stopped as much I would love to stop this blasted thing I was luckly I had a break and was able to walk unaided and breath without the struggle. I look toward the future and whatever comes and look forward to that next break when it comes. The things you miss doing like the washing up or doing the laundry or just walking to the shops or the one I miss the most getting a bath and soaking and to be able to get yourself out. I did all those things on my break and will again.





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Hi Amanda,


I'm glad you're going to counselling, and I know you'll make the absolute most of it.


Don't you wonder sometimes though, if they wouldn't make more money if they called the same sessions, "Happiness and Joy Counselling"?


For really, that's the end result of good counselling, isn't it? A clean slate, the past dealt with and behind us, and thus room for more joy in our life. So maybe I should actually say that I'm tickled pink and thoroughly delighted for you to be indulging in a way to make room for even more happiness in your life.


I've always been game for counselling and support groups to help adjust to life better. It's the most sensible way to make the quickest and best adjustment over life's hurdles. Maybe it's a big deal elsewhere, but Minnesota is nearly the world capital of counselling. I am pretty sure that we may have even invented rehab, treatment centers and the like, so we tend to view people as very odd if they want to "go it alone" through any of life's changes. Where's the fun in that?!


Miocean, you should move to Minnesota, you'd really feel right at home here!


Here are some healing hugs for all of us, followed by a moment of silence while we let go some of our pain, and some of our worries, and some of our anger and disappointment over the changes that illness has wrought in our lives. So that we can experience more happiness, joy, satisfaction, and pleasure in this very moment and be able to recall it, at will, whenever we need more strength to get through another challenge.



< A moment of pure silence >

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My husband is a counsellor, deals with a specific area, so you'd think I would have twigged early than year 5 that I needed this sort of help and that I have been depressed. DUH!!!


Well it's good things baby, good things for sure and I got plenty of room for that and I encourage everyone else to make room for good things!! :emoticons-line-dance:


Take care becuse all of you here are part of the "good things". :happy-dance:

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Hi Amanda,


Well, exactly how can this slip by when your husband is a counselor?! Good heavens, we need him here, don't we?


But I know what you mean. I just realized recently that I was depressed for an entire year -- over forty years ago. I knew I was very depressed for three or four months, but it was only in trying to recall events of the year before that I realized they were all sort of filtered by a haze of sadness. I could neatly diagnose myself with postpartum depression, but I'm not sure that was even recognized back then. And I didn't recognize the depression until it became very severe, at which point I finally reached out for counseling.


I know firsthand that it is sometimes enormously hard for people who are depressed to muster the energy it takes to reach out for help. So if we know anyone who is lingering in sadness, we should make a special effort to talk to them and see if we can help them get the help they need. One simple act of kindness like that could save a life!


Depression is definitely one of those things that is best caught early on. But it can creep up so slowly that maybe we keep on trying to adjust to it, until our adjustments just don't work anymore.


If anyone reading this is feeling sad, or just suffering a lethargy that just doesn't let up; if you feel more critical or jumpy than usual; if you can recall a time when you were a lot happier; if this mood is severe or if it has hung on even at a low level for more than two weeks, then it is time to just ask your doctor if you meet the criteria for depression. It's possible you might have "just" situational depression, but that means you may certainly benefit from help getting over the situation. See Depression and Scleroderma.


I take a low dose of antidepressant which has the fantastic side effect of helping me sleep like a log all night long. This is like a miracle, since I have suffered from chronic insomnia for many years, without enough relief from various meds I tried. So go figure, is this part of a depression, or is it just a lovely side effect of the drowsiness the med induces? It could be either, or both, but I'm so happy about it, I could care less. :emoticon-dont-know:


The point is, we need all the happiness and joy we can muster to live reasonably well with scleroderma. This should be our wake up call to start enjoying every day that we have, regardless of what challenges we face. Given our illness, we are especially prone to depression so we need to be able to recognize it, as soon as we can, and get the help we need to get back to feeling the joy of living again, which is within the grasp of all of us.


Together we can support each other as we explore ways to make us feel better, as with counseling, meds, and sharing our love and caring with each other on Sclero Forums.



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Thank you for sharing your grieving process. You are not alone. Yes, I have also said goodbye to my previous life and I actually commented to a friend of mine that I feel like I have lost 9 months of my life. She actually corrected me and said "no you are transitioning". I gave her an odd look, but the more I think about it I realise that she is right. I may have come out of the high dose prenisone phase, but really I am transitioning my life and using my new network, new hobbies and new body to start over again - but differently.


I secretly suspected in my pre-illness life that I probably was overstressed, overtired, underweight, over-it-all and something had to give - and it did - my health. I have transitioned into a slower individual, who takes the time to watch the birds, pick flowers, play with the kids, cook healthy meals and send lots of love instead of anger when someone takes my parking spot. I have also learnt to pick up the phone and ask for help. I also can accept help and not feel guilty if I need to spend days on the lounge resting.


I was offered counselling from the start and I just went along for the chat. I learnt a lot about coping with energy levels and dealing with relationships, life, grief (shedding tears for some beloved sports I have given up) etc etc. I also decided from the beginning to add to my massive list of medications an antidepressant - which helped restore my sleep patterns and I also think has kept me more up than down.


And Shelley, your gift of a "moment of pure silence" really says sooooo so much, thank you.


Amanda I hope your journey is going ok.


I send you strength, vitality and love.


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Thank you Shelley, I intent to get back fully the joy of living! That's exactly it, the joy of being alive, it doesn't mean everything is wonderful but everything is worthwhile.


Thank you Simone, we should cry when we loose something, loss brings grief and if you don't cry at the time you end up doing it later so best get it over with!


Take care.

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