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Belief


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#1 Buttons

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Posted 28 August 2007 - 09:00 AM

Hi Everyone

I have recently joined this forum & had recent diagnosis of CREST, thanfully at the moment it is quite mild but have been off work since February due to depression & a diagnosis of Fybromyalgia.

Well I have had two phone calls from my twin sister & mother & both sound very disbelieving about the strange aches & pains that I get even though blood tests & obvious Raynauds & nailfold capilleries are all there to be seen. I am hoping from what I have read that this will not develop to the extent that others have got (I really do feel for those who have this peculiar disease) after reading some of your posts.

Did anyone else get this sort of reaction from their family / friends?

I do get very tired at times & although still taking medication for depression have had some very poor nights sleep for about 6 weeks. I also have been getting very stiff hands & they do swell at night & are also like that first thing when I get up, I also have some hard skin developing around my nails. Is this how people have found it affecting their hands to begin with?

Sorry for sounding a bit down but thought I was beginning to deal with the diagnosis until speaking to my family(they live a few hundred miles from me & don't see me very often). Most people who have seen photos of my twin think I look at least ten years younger than her! Yes I do have some facial affects of it.

I have learnt a lot from this site but I suppose deep down I'm still scared by it.

Thanks for listening to me ramble on but needed to offload a little tonight.

Jen

#2 Sweet

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Posted 28 August 2007 - 09:05 AM

You are not alone in receiving this type of response. After years and years I still get it from some family members and some friends. It truly is sad. One thing that helped me explain it to people is "The spoon Theory". I have it on my pc but not sure how to provide the link to you, so I may just email the whole thing to you instead.

It takes time for it to sink in for some people, just keep trying to explain it, but stand your ground about it as well.
Warm and gentle hugs,

Pamela
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#3 Sweet

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Posted 28 August 2007 - 09:12 AM

I found it! here it is The Spoon Theory
Warm and gentle hugs,

Pamela
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#4 janey

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Posted 28 August 2007 - 10:08 AM

Jen,
Welcome Darlin'! Oh Yes - disbelief seems to be the norm rather than the exception. Friends and family have a very hard time accepting the fact that you are even ill and that the illness might actually cause you to change. It's especially hard when they don't get to "see" you and be around you for a while. Even now when I visit family they tell me how "good" I look and they're thrilled that I'm doing so well. My hubby just shakes his head and I shake it off. So please don't feel that your family is the only one with this type of reaction. I invited my sister to come and stay with me for a week and she finally saw, or maybe "accepted", the reality of the situation.

The Spoon Theory that Pam gave you the link to is a great story to share with friends and family. Please use it when you need to.

I'm glad you've joined us. You'll get a lot of support here.

Big Hugs,
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#5 nan

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Posted 28 August 2007 - 11:18 AM

Pam,
Thanks for sharing The Spoon Theory link. I can't produce tears, but I had a good cry without tears. It's wonderful!
Nan

#6 summer

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Posted 28 August 2007 - 05:02 PM

Pamela, that is a fantastic story "The spoon theory", I had to print it straight away.

My husband and I went to visit my mother in law yesterday, she has been such a great help to me, always helping out and offering to do housework and so forth.
She knows that lately I have been having pain in my lungs and terrible SOB, and I mentioned to her when I saw her yesterday that the sob was so bad the day before that it took me nearly 2 hours to put grocery shopping away. Just walking from one end of the house to another left me breathless.

My husband and I was amazed when she asked whether we all wanted to go for a walk to see a pond with ducks in it, where she lives is very hilly and it is a fair walk. I said to her thanks for offering but I wouldn't be able to make it, I could hardly last four minutes on the treadmill on the stress/echo.
Oh, she said I wasn't thinking that you couldn't make it but Dean - my husband , might make his leg more sore ( my husband had screws removed from his leg, and a muscle hernia repaired). My husband said that he would be fine to walk to the pond but there was no way I could.

It makes you realise that no matter how long your family or friends spend with you, the penny still doesn't finally drop!

Take care
Celia

#7 truman

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Posted 28 August 2007 - 05:47 PM

Jen:

My family (sons) deserted me shortly before my diagnosis. I believe fear played a large part. I received an email from a very dear friend today. I can't share it all, but these lines hit home:

You are a very sensitive person and although the recent confirmation of this disease is frightening to you, it seems to me that you are more devastated by the disappearance of your children in your life. I have always placed more emphasis on the mind and spirit and not the body. You must be content and happy with who you are and what you have become. There are more cases of people who are physically sound but are unhappy and destroy themselves mentally. That is by far worse. You have been a source of inspiration to me as well as others. You joke and have a wonderful sense of humor. You are a decent, sensitive, loving, warm and caring person.


I have found my friends to be a tremendous source of strength and power in dealing with whatever comes along.

You have friends here as well, and with the knowledge and experience of what is occurring in your life.
Tru

It is what it is...........

#8 Sherion

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Posted 29 August 2007 - 01:37 PM

Jen,
I have an idea of the way you feel! When I told my mother about this disease her only response was "well, we all have to die from something"! Great response, huh? No sympathy at all. At least we are all here for each other!!!

Sherion

#9 LisaBulman

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Posted 30 August 2007 - 01:37 AM

Jen,
Welcome to the forums! Many people have a hard time understanding what they are going to go through, have been diagnosed with and how to deal with it..... so be an outsider looking in, not feeling the pain, not having the stress of tests and what they might reveal and not being in your shoes....well they just can't understand. I was diagnosed over 14 years ago and people around me still don't understand. You can't expect them to completely "get it". They could of course have a tiny bit of sympathy, but I have learned not expect that from anyone and I especially don't want pity!!! The Spoon Theory is great to show family and friends and hopefully some of them can wrap their minds around it and be supportive to you.

As far as the hard skin around your nails, that is due to the Raynaud's in your fingers. I have really bad raynaud's and three of my finger nail are turning, curling and becoming a bit deformed from it. Don't panic, it took 14 years for them to get this way!!

We are all here to support you!!

Hugs,
Lisa
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#10 susie54

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Posted 30 August 2007 - 01:59 AM

I think we all relate to this problem. With autoimmune you look great to everyone and they cannot even begin to understand what is going on inside of you. Even my husband cannot bring himself to read about my MCTD but he is very supportive when I don't feel well. I just don't think he can handle it all.
I have resigned to understanding that this disease is so complex that most people cannot relate without educating themselves. After all, it took me a long time to understand it all and I am still learning. I guess I am lucky in that my family is supportive when I am not feeling well but really looked perplexed when I say lupus/scleroderma . Sclero WHAT??? Susie54

#11 lizzie

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Posted 30 August 2007 - 12:28 PM

Although the reaction and apparent lack of caring by some of our family and friends can be upsetting and frustrating, I do think we may sometimes underestimate how upset they really are. I truly believe that, emotionally, it can be more difficult coping with the illness of someone you care about than to be the person with the illness. When my son became ill with a chronic life threatening disease, it was obviously a major trauma for him. One minute he was a student with great plans for his future and then suddenly everything was uncertain. I , as any mother would be, was totally devastated, and shed many tears in private, but my son never saw any of this. I felt that seeing me being upset about things would be distressing to him, and therefore tried to appear positive and keep things pretty much as usual , even down to the nagging about the usual domestic irritations, such as wet towels on the bathroom floor etc!. I fret enormously each time he has a follow-up with his consultant in case its bad news, even so I always wait for him to ring me to tell me how it went, though I'm desperate to know, as I don't want to appear to be fussing. So I think it is worth bearing in mind that although some of our seemingly uncaring realtives and friends may be just that, others may in fact may be V upset, but trying to hide their feelings for fear of upsetting us.

#12 jefa

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Posted 30 August 2007 - 08:24 PM

Hi, Jen. I can't add anything that hasn't been said already, but I wanted to offer a warm hug.



Lizzie, you make a valid point. Looking back, I admit to being more of a tough love kind of mum, but I am very pleased with the adults my kids have turned into. The point is, you can't always tell what people are really thinking. Still, it is nice when you can see that someone else finally understands what you are going through on some level.
Warm wishes,
Jefa

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#13 Buttons

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Posted 30 August 2007 - 09:52 PM

I would just like to say thankyou for your spent reading & replying to my post. I have read everyone and certainly it helps to know that others have had the same reaction as myself.
Thinking about it more carefully has made me see that if I'm having self doubts about the diagnosis then how can I expect my family to believe. It's difficult because muscular dystrophy runs in my family, my grandfather, father had it and my younger sister and brother have it . (yes it can affect both male & female depending upon the type they have). My brother has got it really bad & so my mother still looks after him (shes 73) so I suppose they already have enough to deal with without hearing about me.

Somethings certainly seem to try & test us!!!

Thankou again for listening

Jen