scared of my future with fibro!

[Sabrina]

Okay, so i am 19 and have had fibro for almost 5 years. Its been really severe and even mild sometimes. But it really effects me and my ability to do normal everyday things. Juggling a job, a full course load in uni and outside activities is a lot for anyone but even more so for me.

My entire life i have dreamt of being a mother; good involved and loving mother and wife who cares for her family and home. I have a fear of falling short and failing my children. I know this may sound early to worry about, but its so important to me.

My own mom has cerebral palsy and it was really tough growing up. She was abusive because of her own upbringing and her needs were always above my own.

I don't want to be a mom in bed all the time because i'm exhausted or a wife who inst able to care for her husband. I don't want to be in bed in pain. I don't want that to be my future. The fact the fibromyalgia doesn't go away daunts me. Living the rest of my life in pain everyday obviously doesn't excite me, it scars me. I don't want to miss out or fall short. I don't want to be dependent. Especially because i know how bad my fibro and chronic fatigue can get and how it ALREADY effects my everyday tasks. (My hands and arms hurt as i type this!)

just needed to vent, guess i'm in the right place! lol

Thank you to anyone who takes the time to read and reply!

 

[queeremo]

im 19 too, its scary right? i was dreaming of being a mountain climber, it brings me to tears when i think about never being able to do it.
as for being a mother, im positive the best thing a child needs is a kind and wise mother. teaching a kid right from wrong is the best thing and you wont have to be abled bodied to do it, you actually have the advantge of showing them first hand that disabled ppl are still strong and good people. you can be a good mother one day, im sure of it

 

[Eyesup]

sabrina and queerimo, you are both to young to give up your dreams. You might not be capable at this time but that doesn't mean tomorrow can't bring change, this disease is just gaining acceptance and I read that the number of people affected by it had more then tripled in the past 6 years meaning both drug companies and doctors will be working on treatments and they will continue to improve. Plus you will find things that help you personally.
Being a good wife and mom is not out of the question. Many have done it dispite physical handicaps. You don't have to be a super mom, that's not what nurtures a child so don't loose hope of it.
Sending hope your way.

 

[vickythecat]

This one's a very tough topic to write about. Not because it is a very sensitive and personal topic, but also because...well, it is so hard to put it down here on a forum post.

I had started having my first fibromyalgia complaints around the age of 17-19 as well. I am now almost 40. But back then, fibro was an unknown illness where I lived, so I was told that I was 'just very sensitive' and that I had to deal with it. I also started having serious mental issues - severe social anxiety being the worst. I could not feel at ease with any other human. I still have social anxiety, and for me, it is the purest form of loneliness.

I, therefore, had to slowly give up on the notion of ever being a girlfriend, wife or a mother. For me, especially in my 20s, this actually allowed me to focus on my life, enjoy the best of those years despite the pain, fatigue and serious mental issues. I did not dwell on my loss. I managed to do quite a lot - especially considering my state. I graduated from a top university, got my master's degree, worked at various high level jobs (even worked for POTUS!), traveled the world, even had a long term relationship etc. All of this did not happen without many painful/stressful/depressed weeks/months in between.

Sadly this started to change in my mid 30s. Everyone around is now all married, pregnant, with kids, a house, a career...and I found myself with none of that. But then life is so so so full of wonders....I had to move back in with my parents at age 34 after a nervous & physical breakdown. One very cold night I could not sleep, I got up to watch the storm, and saw this mama cat bringing in her kittens to our first floor balcony. The kittens were soaked, shaking from the cold, the mother cat was very very hungry. I took them all in, gave them my heat pad, dried them all with a soft warm towel, lots of food to the mama cat. That night my life changed. If I could not have kids of my own, I could surely help other mothers with their kids - especially animal mothers and babies in need.

I live in a country with lots of stray cats and dogs, and thanks to them I can be the maternal person that I am. I even take care of insects, make sure they are doing well and help those injured! So I grieved for my loss, but gained something even better - this enormous amount of endless love within me. I am truly the happiest person on the planet when I am with my animals.

I will never have kids, but that is mainly due to my mental illness. With 'only' fibro, I could see myself having a child. You are so young.... Yes, maybe you will never become an Olympic athlete, but you can be an avid walker. You can be passionate about many things that will be within your capability. You can still graduate from college, have amazing jobs, friends, a social life, travel, great relationships, your dream house etc. Maybe not all, but with whatever you achieve, you can learn to be happy and proud. At this point it is also so so so important not to compare your life with those of others. This has always been my biggest mistake.

So do not give up on anything...but simply adjust them slightly if needed.

I also am hopeful that an (almost) cure for fibromyalgia will be discovered. Never give up hope either.

 

[DiamondDog]

I can totally relate to this. I'm 22 and I'm also juggling a job and university and its too much sometimes. The future seems very scary, but I try not to think about it too much.

It can be hard to look at the future in a positive way, especially having an illness that will not go away. But try not to look at the negative things that could happen, but instead find the things you CAN do. It might take some research to find a way 'around' things, but for a lot of things, there are people and opportunities that can help.

 

[Sabrina]

Thank you so much for replying! It's not good but it's comforting in a way knowing that there are others my age juggle life and fibro ��Thank you for your encouragement!

 

[Sabrina]

im 19 too, its scary right? i was dreaming of being a mountain climber, it brings me to tears when i think about never being able to do it.
as for being a mother, im positive the best thing a child needs is a kind and wise mother. teaching a kid right from wrong is the best thing and you wont have to be abled bodied to do it, you actually have the advantge of showing them first hand that disabled ppl are still strong and good people. you can be a good mother one day, im sure of it

Thank you so much for replying! It's not good but it's comforting in a way knowing that there are others my age juggle life and fibro ��Thank you for The encouragement!

 

[sunkacola]

Vicky, thanks so much for your post. I loved reading it, and I am sending you a hug!

I loved your story, especially as it is animals who changed things in your life, and I am also a person who loves animals passionately. The healing qualities that they have for people are beyond amazing. Your story is unique, and yet also one of millions of stories of how animals have helped people who were sick, in pain, alone, and/or in despair, to find love, peace and acceptance.

And I think acceptance is the most important thing.
Acceptance doesn't mean complacency. It doesn't mean resignation. It simply means accepting the present moment, the present situation, as being what IS.

If a person spends their energy raging against what is, that energy cannot be spent kn finding a way to work with, around, or through the situation. Believe me, I know! I have wasted a lot of my time and energy bemoaning things and being angry about them, and I am not saying that anyone can just decide never to waste energy that way again. But you can learn to limit that kind of response to things and move into finding solutions.

Here's the thing. If you don't have legs, can you run a marathon? Well....yes! People do it all the time these days with prosthetics. If you are poor, can you buy your dream home? Well....yes! It just will take longer to get there. You may not be able to do exactly what you dream of, but what you can do is find out within yourself what it really is about that dream that matters the most to you, and then see if you can do that.

Vicky gave the most perfect example of this!
She wanted to be a mother. And that dream won't happen as she dreamed it originally, but she discovered that the important aspect of the dream to her was to nurture beings who needed her. And so that is what she is doing, and it brings her much joy and satisfaction, and she does a great deal of good in the world as well. For the animals that she helps it makes all the difference in the world.

You may need to find another way to accomplish what you want. But you can find that way.

A quote that I really like is from Mother Theresa, who only focused on what was in front of her, small things one at a time, and yet who accomplished much good. She said, "You don't need to do Great Things in your life. Just do small things with Great Love".

That is what VickyTheCat is doing. We can all do that.

 

[diamond]

Vicky you are so inspirational ..Sabrina there will be tough times but if you take care of yourself and adapt your dreams i hope you will still live a happy fulfilled life.

Try and avoid stress of the mind and too much stress on your body...so calm slower and gentle is often the key. However there are people on this forum who can still run...we are not all like that but with luck good nutrition and taking care of yourself you maybe one who can still achieve a lot.

 

[Peaceandquiet]

Sabrina, your dreams of being a good wife and mother are just what many of us older ladies hoped and dreamed at the age of 19. (Not all, I know).

I was encouraged by my mother to hold onto the dream and, like you, I had this picture in my mind of my ideal family in the future. Everything slipped into place and i thought I had it all when I was married to the most exciting man in the world.

Fibro aside, being a mother turned out to be so much harder than I imagined.
As a sensitive, diligent person, no matter how hard I tried I could never live up to my own expectations, let alone those of my husband. It's like constantly swimming against the tide. (I had no family around so I was alone in my struggle, I don't know your situation). I cannot imagine doing it with fibro. Many do, I know, but even back then, migraines took their toll and nobody cared.

My fairytale ends badly....dream husband got a floozy....I was indignant...I left....became a single parent. The struggle just increased tenfold.....

I'm sorry I'm not as positive as the others but I'm trying to let you see there are so many other options there with your life ahead of you. Just imagine being able to rest when you need to, travel, have money, have choices! I have friends like Vicky that have had very interesting lives and their furry friends are so loyal to them. Peaceandquiet. xx

 

[sunkacola]

The fact is, whether you are 100% healthy or not, rich or poor, very very few people live the life that they expected to live when they were very young. Almost nobody looks aback on their life when they are older and says, yep, that's exactly what I thought would happen, and everything went the way I wanted it to.

Life happens, things happen, you try to make your best choices but you have no control whatever over the outcome of those choices.

All you can do is play the hand you have been deal the best you can. It's a cliche, I know, but it is true.

And sometimes when the very worst possible thing that could happen to you happens, later on you look back and realize that if that hadn't happened you wouldn't have been there or met that person or whatever that changed your life for the better.

It certainly doesn't always happen that way. It's not true that when a door closes another one always opens. Sometimes it's all closed doors.
But all you can go is take the next step.

 

[Akshunhiro]

Hey all you beautiful young women i am 39 and I have fibro and ankylosing spondylitis (spinal arthritis). I understand your fears completely. I have them too. I have had both conditions since I was 24 but did not get diagnosed until I was 35. Before diagnosis, I was so desperate for pain relief and relief from depression, desperate for help that no one was giving me, that I got myself into a very very serious addiction to codeine. It took me over a decade to finally get it under control.

I worked my ass off for nearly 20 years in a high stress career. Eventually, I couldn't do it anymore but I did manage to make enough money to buy an apartment of my own and because I invested wisely in that, I was able to take the profit I made and buy another apartment without a mortgage - which i cannot tell you how much easier that has made my life!

I'm single and have been so for 9 years, but that was mostly by choice because I had a bad habit of picking the wrong men because I felt I had no other options and had to take what I could get. My last boyfriend was a real peach. He was alcoholic, type 1 diabetic, self destructive and abusive. At the very end, he threatened to kill me and cut off my head and so i got out of there real quick. What happened after that was a long period of soul searching. I finally learned to be on my own and be happy. It took me a long time to come to terms with the fact that I will probably not have children, but in these past years, I have learned that having a child is not the only way to give the love inside you. I adore my friends, my family, my dog, my nieces...and I do it with all my heart. I also realised that having a child is a huge responsibility and maybe the best thing for me and for any children I may have had would be to not try it. Maybe things might change in the future, but for now, I need to keep working on me.

Now here's the good news!

There are men in this world who will love you no matter what i managed to find one, over the internet, and while our relationship is complicated for other reasons, his love for me and mine for him is not. It is based on total acceptance of who the person is, faults and all. I totally accept him and for that, he loves me and totally accepts me. Unconditional acceptance and love is a rare thing and if you can learn to give it, then you'll find someone someday who will give it back

It's okay to be scared, but try to remember that life won't always turn out how you planned. But that doesn't mean you won't be happy don't let fear dictate the choices you make. Don't let fear of being alone drive you to accept a man who isn't good for you. Being alone isn't a bad thing at all; it's a chance to be your own woman and to decide what you really want out of life and a relationship. And then don't settle for anything less!

Later on, when you feel like you handle things, maybe you might decide to have a child, or maybe you might decide to be a foster parent to an older child in need. Older children are easier to take care of and need love just as much. Or maybe you'll be the loving parent of a fabulous dog or cat, like me

Being broken isn't a bad thing either since I was diagnosed and came to terms with it all, I started to find friends in other people who were broken and for the first time in my life, I felt like I was truly accepted and loved for who I was. I felt I finally had friends who knew what I was going through. Broken people make the best friends because we have empathy and we understand that nobody is perfect and that's okay. We do what we can for each other and that's more than enough

So! To sum up:

- Love unconditionally
- Don't let fear dictate your choices
- Be your own woman, with or without a man
- There are many ways to give your love
- Life may not turn out how you planned, but that doesn't mean you won't be happy