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Worst FMS flare of my life... Worst FMS flare of my life...

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  #21  
Unread 03-08-2003, 11:37 AM
Worst FMS flare of my life...

Here is the letter ((Judy)) as well as another one from a Spouse of a FMS sufferer. If you follow the links it is a printable version. I had emailed this to my Mom, Dad & Sister when I was 1st dx, afterwards they had a new understanding

  Quote:
Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about FMS/MSP and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand......

These are the things that I would like you to understand about me before you judge me....
- Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school, and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but I’ve been sick for years. I cant be miserable all the time , in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say , "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes ,or an hour. And, just because I manage to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of disease you’re either paralyzed, or you can move. With this one it gets more confusing.

-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what FMS/MPS does to you.

-Please understand that FMS/MPS is variable. It's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it cant be put off of forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.

-If you want to suggest a cure to me, don't .It's not because I don't appreciate the thought, and it's not because I don’t want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped , all people with FMS/MPS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would know.

-If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In may ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning.

I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you .

...and, as much as it's possible, I need you to understand me.



On the other hand, if you have Fibro, this letter may be similar to what your loved one is going through. "A Letter To Fibromites".
I am a spouse of someone with fibro.........
by DonnaE from Fibrohugs.com

http://www.fibrohugs.com/html/letter_to_fibromites.html

A lot of times we as family members, friends, and loved ones are supposed to understand, accept and be sympathetic to someone who has an illness..... and I agree with this statement, but only when we are given information, understanding and support ourselves.Fibro does not just affect the person who has it.... fibro affects the whole family..... it steals away all of our lives. I have watched, broken hearted, as Ken has packed away his dreams and hopes for the future.... but along with those dreams and hopes were mine also. Just as you have come to realize that your life has changed forever so must we....... and we have to be allowed to morn that loss also.We become angry and depressed just as you do...... we struggle with KNOWING that you are sick, to being angry that you are sick....... not at you but at the illness. Then we become angry at ourselves for feeling selfish and thinking of ourselves.... thinking of the added stress on our lives... the added responsibility.... the added guilt. We have gone from a 50% partnership in this marriage, this family, this life, to sometimes feeling like I'm carrying the whole weight of it alone. I have to remember that my spouse is sick..... that the illness has taken that away and sometimes I'm lonely, scared, and extremely sad at the loss of what was....... but I also know in my heart that I love my husband more than life itself and TOGETHER we will find our way. You have to talk to us.... you have to let us know how you're feeling, what you're feeling, and how it's affecting your day........ your life. If you don't talk to us we will never understand how you are feeling and we will assume that everything is as it should be.... thus expect from you what we have always expected. I need to be able to say it's "okay" when your angry and hurting........ but it has to be "okay" when I am also. We both have to stop and look at what's going on in our lives at the time....... just as you get angry and lash out sometimes...... so do we. So will we really ever understand what you're going through? ......No! Will you ever really understand what we are going through? ......No! But if each of us gives each other the time, love, and patience to find our own way in dealing with and accepting what fibro has taken from us, I think our relationships may be a lot better. I hope with your challenge that you wanted to hear the truth...... and that is what I offer in this.... how we feel as Spouses.

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  #22  
Unread 03-08-2003, 02:11 PM
Worst FMS flare of my life...

((((Jude))))) Mon amie, so sorry I didn't reply before: I've been tired and busy, and now have a cold that has me walking in a kind of

I just wanted to say I'm so sorry the FMS has been so bad lately. BTW, I also get the hangover feeling after a really bad allergy flare up. It's as if my system goes into overdrive, trying to get over the pain and illness that goes with the allergy flare-up, and then has to recover from fighting

I hope you're feeling a little better by now, hopefully, a whole lot better.

Sending lots of s your way. Take care, sweetie.
  #23  
Unread 03-09-2003, 09:52 AM
Worst FMS flare of my life...

Thanks again ((CrohnieToo)) I have learned from your experiences and I appreciate you posting! I will try to keep my Mum at arms length...the problem is lately I feel that I may loose my cool. She has pushed me too many times lately. I have kept them bottled up, and I feel like I may explode. I will try not too...I know she isn't this way with me only. She finds ways to hurt all of her children. The sad part is when she's not on the attack; she can be the loveliest person to be around.

((Sheri)) Thanks for posting that powerful letter. I just may send it to her. The strange this is that she has Arthritis, so you'd think she would be more understanding. She is much healthier in general then me though. I want you to know that I'm thinking of you too. I know that you loved your Mum so very much...and I will keep you in my prayers.

((Dany)) Mon Amie I hope you are feeling better now. I am...that's for sure. I'm having some pretty bad sharp pains in my abdomen that are keeping me from having a better day. DH wants to take me out for a drive, and if I'm up to it a little Antiquing. I will bring my meds, and pray for an enjoyable afternoon...we both deserve that. Can you believe we actually got more snow last night?!

Sending Love & Hugs to my dear friends...my sisters... I'm seeing my Neuro tomorrow. I hope it is a productive appointment.
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  #24  
Unread 03-09-2003, 10:24 AM
Worst FMS flare of my life...

I hope all goes well at your Neuro appt tomorrow ((Judy)) If you get a chance, will you pls let us know how it went?? Love you, my friend
(((hugs)))
  #25  
Unread 03-09-2003, 12:54 PM
Worst FMS flare of my life...

((((Jude)))) your mom sounds like my MIL: she drives her only child (DH) absolutely nuts.... as well as the rest of us. And, like your mom, can be the most lovely person... when she's not finding ways to drive us crazy. I think that sending her that letter might help her understand what you're going through

BTW: we also got more snow last night... can't believe the snow banks... they're the highest they've been all year!!! And the snow is still white!!! Usually, this time of year, the snow is black for the slush and the soot!!!

Wanted to wish you good look with your appointment tomorrow. Hope you have a good time antiquing
  #26  
Unread 03-09-2003, 01:24 PM
Worst FMS flare of my life...

{{{Judy}}}
I hope that you are able to go for that drive and enjoy the antiquing. I think that seeing a therapist is an excellent idea. I know that I really really need to go back to mine. I haven't been in over 2 years and I really think she could help me right now. When I started going it was like a flash went off in my head and I just knew that it was the best thing I had ever done.

That was a beautiful letter Sheri. It literally has me in tears. I know that my illness, yes I do believe it is an illness even though there is no diagnosis nor a cure, also affects my family.

I'm sending much love and lots of s to all my fellow Road travellers. Deep down I still hope that one day there will be a cure for us! In the meantime I will be forever grateful for each and every one of my friends here.
  #27  
Unread 03-09-2003, 01:27 PM
Worst FMS flare of my life...

{{{{{{{{Sisters on the Road}}}}}}}}} many, many s


Emily
  #28  
Unread 03-09-2003, 02:06 PM
More hugs

Jude;

Just wanted to send you more s and . I am so glad you are feeling better. I do believe that emotions are a powerful influence on how we feel physically. Please let us know what you doctor says. Take care!!
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