I'm sad. And angry. And a bit fearful of becoming bitter. I'm ill. I never get well. And it is dehibilatating. I can keep fighting, for every scap of life quilty I want but no amonth if fighting will just make it go away. I can be acive a few hours a day, and activs counted as well, walking my dog, or cooking, painting or writing. I can see people even less. And beomes so tired i just collapses after i done anything. Every once I can get myself a few days of activity, even a week, hbut then enjoying a weeks or even months long backlash. I'll probaly never hold a fulltime job, or even a real job. On other hand I'm a extemly intelligent girl, from a stable family, social, creative, charming, goodlooking, education etc. I got a lot to be grateful for. But somehow it almost make it worse. Having a lot of understimulated untapped potencial. Right now I just sort of feel like standing on a montaintop, shouting to all the healty people in the world to do all the sort of stuff Im missing out on. Go to all the colledge couses i been missing out on this last year. Get an awesome job. Make money. Travel! Hang out with your friends! Play music! Train martial arts! Hang out at the local animal club! Do stuff! Do stuff people! I envy you and would kill for the oppertunity!
Hi w You forgot to add "modest" to that list ( creative, charming, goodlooking) Never mind. I've always felt that modesty is overrated anyway! Sorry to hear that you're going through this. Is it M.E. or something similar? Maybe you want to keep those details to yourself, but I'm nosey by nature. I suspect that deep down your attitude is good, and positive, and that you'll make the most of your life that you possibly can. And I look forward to the blockbuster novel that's in there too. Remember, what doesn't kill you makes you stronger. x
Getting used to being sick and knowing life will never be what you planned or wanted is hard. Learning to see the good in being ill can be even harder - but it does have it's good side - I kinda like being ill in the summer, I can sunbathe when people are at work. Have more time to potter. I don't know what illness you have but it's really, really hard to be held back by something that you have no control over. When it doesn't matter what gifts or talents you have you can't use them to their fullest. Writing gives me a more flexible outlet for my abilities than I have ever had before but I know that what i achieved with my writing is only a fraction of what I could achieve if I had full brain power and normal level of energy. Since I was seven I have had four normal days and was blessed with two months once after taking antibiotics - my goodness life is so easy without my illness.
I'm sorry that you can't do everything you want to. I think one of the hardest things is not having control over what you can do. Making the most out of everything is a good point. Sometimes it's easier said than done though. It's great you have interests that you can do such as cooking, painting, writing, and you can get fresh air and exercise by walking your dog. I don't know what illness you have, or how much you can do and such, but perhaps you can still do more like learning to play an instrument, inviting friends over so you don't have to go out, learn some new skills and educate yourself on things you want to know more about. (I'm just taking these suggestions from your post) It may seem worse by having all this potential that you can't do much with, but be grateful that you have this potential and perhaps you can explore it slowly within your circumstances. You're a great writer and artist, and you've worked hard at developing these skills. Keep making the most out of everything, as I'm sure you will.
I chose skipped mentioning the disease in my first, since mentioning a diagnosis tend to have the conversation focus slip from the problem in the topic to the diagnosis. And getting in the way of a more general identification with the problem. Most people have someone in their with some sort of disease or disability frustrated with it holding them back. In my particular case it bipolar disorder type 1, rapid cycling. 75% of people with my diagnosis can't work at all, the other 25% can as a rule just work part time with some sort of support. The death rate is about 20%, the same as skin or breast cancer. It is chronic, you never get well, even if you can become somewhat stable with medication. Generally it will get progressivly worse. But on the bright side, 40% of the published poets were diagnosed and medicated as bipolar in one study i read, and I seen other interesting numbers for painters, fiction writers and musicians. Increased creativity is a symptom. And periods of mind bursting productivity and euphoria. It tend to be the diagnosis psychiatrists pics as the one they would prefer if they had to pick a diagnosis. So it could be worse. And I'm am extremly sane well balanced for having my disorder. Comorbidity is the rule, not the exception, in bipolar disorder, yet I gotten a way with nothing additional. As a side note. I got my perspective on modesty from my Sensei, who were extrely knowledgeable in his field. Being modest isn't about trying to hide the gift you revived or worked your ass off to get, or make them seem any less then they are it about recognizing that they don't make you better then anyone else. Eunoia: Yeah. I can make the most out of the 2-5 active hours I got a day, but any way I try to handle them, it still just... 2 hours. Thats not a whole lot of time.
Have you read the spoon theory ? I don't know if it works with bi-polar but it helped me put my life in perspective and is great for explaining my fibromyalgia to those around me - type it into google it was written by a woman with Lupus which is another 'unseen' illness/condition.
I wouldn't pretend to know how you feel, but I do know my son felt exactly the same when he was diagnosed with a progressive degenerative illness. He had a wife and two children and didn't think he had a future, and certainly wouldn't be able to provide his two boys with a future. For a few years he worked, growing more and more exhausted, until his medics advised him to stop. His heart was suffering and his general health was poor. It did feel like the end of any quality of life he had. He went downbank rapidly as all purpose seemed to leave him. His legs finally failed and he ended in a wheelchair. He couldn't go out, he couldn't drive so he was dependant on someone taking him to clinics, hospitals etc. His wife became his carer. She lost her husband, he lost his dignity, his self respect. His computer was his only consolation. As his wife volunteered as classroom assistant at the local school, he learned about programming. Then his wife said that she wanted to train to become a better assistant, gain some qualifications. So, as her hours grew longer, and her desire to become a teacher started to develop, she decided, after much family discussion, to go, first to college and then university. It would take six long years. The kitchen was re-vamped so my son could get his wheelchair in, and he took over the cooking. (the boys weren't pleased!) Then, he had a modification to his car and he was able to drive. As he did more, he grew more confident and he wanted to do even more. Another modification to his car meant that he could go out alone. A lift housed in a box on the roof meant that he could load and unload his wheelchair himself. Suddenly he could do the school run, go shopping, visit friends, get to doctors'. Two years ago they all went on a camping holiday. To France. They went for 5 weeks and we got phone calls every day - 'We're in Belgium', we just crossed the German border', 'Wow, Switzerland is wonderful!' Last year my daughter-in-law graduated from university with her degree. She's a fully-fledged teacher - and loving every minuted. They did France and Italy. Still camping. They boys put up the tents, my son cooks breakfast on a two ring camping stove. And they all love it. This year it's Spain first then drive to Italy. My son isn't always well. His legs don't work, his hearing is affected, his heart has been damaged (thank God for doctors and pills) there are days when he can't get out of bed. But - and this is important - his life is good! Illness, disability, is debilitating. It changes your life, but it doesn't have to ruin it. His life is different than he ever thought it would be. Some things he lost, others he gained. It can't be easy for you. But my son, and thousands like him, who have taken the difficulties and turned them into, even tiny triumphs, should give you hope. Dark days are usually followed by bright days. I just hope that your bright days outnumber the dark ones.
Elgaisma: ****. The spoon theory got me crying. Thank you. Evelon: Thank you too for sharing you sons story.
I can only imagine how frustrating that is. I guess you could look into things that you can do that doesn't put too much of a strain on you? You've probably already done this mind, but perhaps there are a lot of things you can do, just not very active things. Try and stay positive!
Staying positive takes time with most chronic illnesses. I don't know about w176, but when I was first diagnosed there was huge relief I wasn't going to die. About six months later came an even greater horror when I realised I wasn't dying but I was never getting better either - with my family genetics that ment I was going to spend the next seventy years of my life in pain and unable to function at a normal level. I was never suicidal but I frequently prayed that I wouldn't wake up the next morning. I had gone from doing a university degree, holding down two jobs, walking 7 miles a day, swimming, active social life, dancing class etc to lying in bed occasionally able to read Thomas the Tank Engine and when the noise and light didn't bother me too much I could watch TV - radio kept me going during that time when I could deal with the noise, I spent nearly five years going from my bed to the sofa, every few months going out with friends which would then reduce me back to that state. I remember my half brother got prostate cancer - I was so bloody jealous he was either going to get better or died. Not to mention as he was only ill for six months people didn't get bored he got lots of attention. When you are chronically ill it takes a very special person to be able to deal with you. I am better now but I will never ever have a normal life - if I try I can't look after my children - I have to account for every ounce of energy used and work out what is worth it, what isn't. Somedays I opt not to get dressed and instead use that energy to maybe make things with the kids. Every single day like detailed in the spoon theory is about deciding how much pain, how much you can push your body. Not like normal people weighing it out over a day and knowing after you sleep or rest it will be OK. It is about weighing every movement, every action. In my case I don't know about w176 but if I borrow from the next day, that is OK but if I keep doing that I become bankrupt and cannot function on any level I can spend years again staring at the ceiling, drooling and Thomas the Tank Engine or some other kids book is all I can concerntrate on. I thought I had gone into remission and allowed myself a normal life with kids and a husband. Last winter the snow hit and I got flu (snow makes me really bad, and for every one day someone has of flu it knocks me out of a week) - I had nothing left to give and my six year old daughter took on responsiblity no six year old should ever need to have. I have been ill on and off since I was seven so for me this is normal - I have never really known a life totally pain free or full of energy, everything has been a battle against my body. In a way that is a blessing - I only have brief glimpses into what a normal life could be. Sounds like w176 has had more of a taste of it, and has to adjust. w176 everything in me goes out to your right now - now is time to be selfish don't focus on others - you have a sensei and a lot of buddhism is great because you learn to focus on each moment and gain satisfaction and appreciation for those moments. If you ever need anything PM me.
i can't begin to imagine what it's like and won't pretend i could even try... but i applaud your courage in being able to 'go public' about it and i think that must bode well for your future... love and healing hugs, maia
