I've forgotten who I am

I want to start out by saying I know how lucky I am. I am ever so grateful for the last 2 years because honestly? I never thought I'd be where I am now.

I classify myself as in remission. I have been back at work full time for 6 months now and haven't even so much as taken a day sick. I'm not 100% but then - I don't think that being 100% is a realistic expectation for anyone - sick or otherwise. I won't go into the logistics of how I was 'cured' but being at the end of my tether - I saved and scrimped and went to the best private doctor I could find. A million food allergies; and vitamin deficiencies later - and I'm okay - I'm actually okay. Maybe that means I didn't have fibro - maybe it doesn't. at this point, if I'm honest, I don't much care. My question still stands.

Where do I go from here?

To deal with being so sick at 20, and being bed bound by 22, I created fibrosam - or 'sick Sam'. A version of myself who didn't have dreams or aspirations and who couldn't be disappointed by memories because I deleted them all. I forgot what it was like to be well because that memory hurt. I lost the best job I ever had, dropped out of uni, and packed up and went home.

Fast forward 5 years and ...yeah. I just don't know. I can't remember how to be 'healthy'. I am used to not planning full days and scheduling naps and the thought of not doing that nearly gives me panic attacks. I don't have a career aspiration (I am a manager at a shop I like, but it's not the job I loved) and I want to restart my uni but again - I can't go back to where I was - it hurts too much - so I'm stuck in mid ground. I can't come up with new dreams or ideas; I've spent 5 years hardwiring my brain to not allow them.

I can't remember how to do this healthy stuff. And I'm happy oh so happy but god help me I think being better is depressing me. I feel like I should be out curing cancer; making people proud of me because I have been given a chance. But tbh; I just wanna sit on the sofa and eat pizza.

It feels like I've woken up from a 5 year coma; but my life moved on. My friends are all graduated; I somehow managed to get married in amongst my sickness, and I have a house and a cat. But That was fibro Sam. Healthy Sam doesn't recognise this life; he wants to go back to uni dorms and alcohpops. I honestly don't know how to reboot.

I'm a 20 year old brain, in a 25 year old body, with the mindset of a very gravely sick person, and the health level of a normal person. And - WHERE DO I GO FROM HERE?!?

For the first time in my life - I understand those 'find yourself' adventures young adults go on. I don't know who I am anymore.

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15 Replies

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  • I think just as you learnt to live a "sick" life, in time you'll learn to live again. It's called conditioning and we all go through it. I find we adapt to the environment were in. Of course this does take time.... And a willing to roll with life. To take it as it comes without great expectation. We are all just conditioned beings. A product of our environment. Of course, in saying that, well all have that sick life conditioning with us as baggage too. But hey, that's not all bad! We've learnt to live a healthy life, hopefully.

    A good book to consider is: The Power of Now by eckhart tolle.

    Don't give up

    Simon

  • I would advise u to take time and let this best news ever to sink in more and don't go bull at a gate and try and do everything ur 20yr old brain wants to do xx I think this would be too much for any one of age to take in xx I hope u find urself and dreams and have the most fantastic life xxx love Angie xxx

  • I'm not trying to be mean, but don't worry so much and stop analyzing everything! It will all fall into place when it's supposed to. I went through a similar thing when I GOT SICK back in Nov. and couldn't understand why. Unlike you, I don't have a very good Dr. so am having to figure things out on my own for the RA and Fibro. I just came to the conclusion that this is where I'm supposed to be, accept it for what it is, and do my best to reverse it. Trust me, You'll be just fine! : )

  • You are who you are NOW!

    That's really a great story, and is sad we have to lose so much of our lives, you get only one shot at it, there's no "can I do that again but better". So go for it, you are who you are, a NEW YOU if you like and press on. You don't have to disregard the old you. That's the one that made you what you are today. And perhaps there's a need to be a bit cautious with extreme activity, but the world is now you oyster.

    Good luck in you future life.

    There's another word for present. it is "gift". Use it well. and don't dwell on the past

  • What you have written is very interesting read and it is very well written. You are good with writing! There's a start!!

    This may sound silly but have you ever try cycling? Or are you good in any sports? I'm asking that because, I cycle and it makes me feel so great. It has reboot my soul. The activity gives me a good boost of adrenaline and makes me so alive! Perhaps considering taking on a sport will do the same for you and when happy, it'll be easier to reconsider your life. Hope it helps and good luck! You are very intelligent and you will do what's best for you at the end. Thank you for sharing your very interesting life story.

  • Yes you ARE very good at writing, so maybe that's a direction you should pursue? I agree with everyone else about just learning to be where you are NOW, without looking either forward or back but just taking life one day at a time. Not everyone has ambitions to be "a success" or get rich and important, a lot of us have learned that contentment and willingness to settle for a simple life are precious gifts.

    And (feeling like a party pooper now) you may still have Fibromyalgia, but enjoying a period of remission which may or may not last. Sorry my dear but after 20 years with this illness, I'm taking a cautious approach. I'm sure clearing up allergies etc will have made a huge difference - and wish I could afford to travel the same path - but I don't want you to crash and burn if you later get an attack of Fibro which puts you right back psychologically and physically.

    So that's another important reason to take it a day at a time, and tell yourself that you are in remission for now. If it lasts that will be utterly fantastically wonderful and we will all be green with envy. If it doesn't you will have made the most of the time ....

  • Hello. I am 48. I lost my life a year and a half ago to pain. For about 6 months my pain shadow was bigger than me...it followed me everywhere...but it was right next to me, butting into every situation, conversation and thing I was doing. It took over. Pain shadow caused me to lose my ability to think know about anything else but pain. One day I decided to send it away. I'm still in pain, mind u, but I don't want that to be the main focus anymore. I have to live..for my kids who are ages 10 and 12. I don't know how I will go back to work and succeed but I am going back in 2 months. My short term memory is shot and I get tired out so easily. All I can hope is that the adrenaline from anxiety will keep me going. I am a teacher.

    As to how can you plan your life...your life is new. You are 25. What I would give to be 25...you were stopped in your tracks by this Fuckumyalgia as I call it or the Fibromyass...now it is time for you to learn from it. Pace yourself. Don't rush into anythingand what ever u do don't get married right away to someone u settle for just because your friends are...I had my kids at age 36 and 38 and they are fine and I am a better parent emotionally for them.

    Keep putting one foot in front of the other and a plan will materialize. Do not rush it. Be good to yourself.

  • Yes! Positive thinking is the single best thing that can help with chronic pain management. It is so easy to spiral down into despair. So hard to keep positive, pace and enjoy life. Well done for trying so hard. I really hope you manage it. Work can help, I've found, but you do have to remember to be kind to yourself. Enjoy your children, they grow up too fast. Love the health you have, and do your best to keep hold of as much of it as possible, but accept aids and help if offered as they can be the difference between struggling and hating it, and struggling and being able to enjoy life. I'm trying too. Sometimes I feel I'm nearly there, nearly able to be positive all day! We are here to supportive each other too

  • I am so happy for you!! Find

    your new self! When I get a period of remission I enjoy myself

    as much as possible. I'm much

    older than you I have a son your

    Age. Enjoy what's going on now

    You'll figure out who you are. I wish you all the happiness and luck of your new future xxox

  • This is great news, Sam.

    Do bear in mind that this is a journey you and your partner need to take together. They too is going to have to make huge adjustments to being the partner of a healthy person, not a sick person. They may feel very threatened, frightened that you won't need them or want them any more now you are so much better. So why don't you sit down together and plan how to enjoy being an active healthy young couple, who can travel (if you want to) and have adventures while you are still young enough to enjoy them? You will need them to support you when you panic about it (which you are bound to sometimes).

    Good luck! I hope your good health lasts and you are able to enjoy life to the full.

    Mim xx

  • You are grieving. Let yourself grieve. It is a natural part of life and it won't be the last time you must go with it or get swept into the undertow. I have a feeling that just posting this has already helped you to feel better. Find someone to talk to, someone objective. I see a psychologist and our sessions are precious. I am not saying that is how you should go, just a thought.

    All the things said above are great thoughts. I started my life over at 24, starting school, starting to find real work. It would be interesting to be 25 again,be able to think about what I really wanted to do with my life, especially knowing what I do now at age 60.I did not have fibro (in those days there was no such diagnosis) but I was sick for three years. It took me years to process it and stop feeling guilty and sad, but eventually, I regained my self-esteem and found the loving support I needed. It sounds like you already have that support. Use it.

    I wnet back to school at age 25, through my life started two careers, and earned 2 degrees (BS and AS degrees), but I didn't do it overnight. My priorities changed. In fact, once I can keep up my energy and have my budget straightened out, it's back to school. I want to study linguistics and maybe finish my BA in fine arts. All I'm saying is that there is always time. You are so young.

    You haven't lost anything; you have gained a lifetime of experience in these years, an understanding of what it means to suffer that many people never learn. Use it. Don't rush it as others have said. Cherish a life without pain, cherish your loved ones, and let the grieving pass. It will. My very best wishes to you.

  • Sweetheart I feel for you!!!! I'm the same way. It started when I was 27 and I had endometerosis. Spelling wrong, sorry. After I finally found out what I had I was 30 and had to have a hysterectomy and then came the fatigue and ruptured disk's in my back along with no fat in the bottom of my feet, so hurts to walk. Then I finally found out I also have Fibromyalgia. I no longer can take most medicine's I'd always taken before. So my choices are limited. I also started having inflammation in my right eye. Not fun...and very painful. Then I found out Monday when I went in for an EGD and Colonoscopy I have a fungus in my esophagus, which is making me sick. I also had polyps. Don't give up honey. Go to a pain clinic and hopefully they can help you. I was about to die with the pain, now since my pain clinic visit life is much more bearable. During all my worse health issues my husband decided he wanted a divorce which crushed me in more ways than one. I've picked myself up after awhile and decided I had something I have no choice but to live with but I make the best of it. I laugh instead of crying because it feels better. Hang in there and if I can help just let me know!!! xxxx Mitzi

  • Hey Fibrosam- I've been thinking more about what you said in your post, and it might be a great thing for so many of us others who are suffering, to know how you were healed. I'm a big believer in a more natural approach to things, and if it can be done in the way you have, all the better! Could you tell us more about the tests and supplements the Dr. had you on?

    Thanks!

  • Hi Sam. I too would like to know more of your journey back to health. My doctor's have told me that there is nothing more they can do for me except more drugs. But thats not a cure. I decided to work with a consultant that deals with natural supplements, not the over the counter stuff. From my research for me, I feel I need the natural thyroid medication, not the synthetic. I have learned that when a body is fatigued, our hormones get out of sync and can make a person feel worse. So Sam, you have learned so much about food allergies; and vitamin deficiencies, I would very much like it if you could share what you have learned.

    Thanks,

    Mark

  • Hi Sam, so Happy for you. Why not write a book about how you got cured and the alternative remedies used. I'm sure it will be a best seller and it would also help you on your journey of self rediscovery. Can't wait for you to sign my copy!

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