About two weeks ago I signed up with Facebook. I thought it might be a good way to find those long lost friends. And sure enough it was. I was overjoyed to find old friends from all over, including two of my first friends, a boy and a gi
rl I went to kindergarten with on the other side of the world. As I started ‘poking’ them all they replied and let me into their online world. I thought, how exciting. I’ll get to see what they look like now, what they’re doing these days, what careers they had chosen…
But with each profile I opened, and each photo album I viewed the pit in my stomach seemed to grow deeper. I am watching them all smile and carry on with all their fun friends, living their lives to the max, traveling, socializing and enjoying being alive. And here I sit stuck in my gray house, lucky if I manage to wash the dishes, no work, not many friends, and no energy for work or friends anyway, trying my best to stay positive, not to feel sorry for myself, to not feel frustrated, depressed and angry with everything and everyone, with myself and my body for not letting ME live MY life, like all those happy faces on the screen. I don’t want them to feel sorry for me. I just want what they take for granted: energy and good health.
I think I’ve been patient. It’s been 3 years since I was able to work. I just turned 30, but haven’t celebrated it yet of course as I haven’t the energy to organize anything. I’m young, I want a career, I want to fall in love, I want to have children, I want to travel, I want to spend time having fun with friends, I want to be creative and paint and draw and write and dance, I want to learn to sing, I want to be so full of life and energy that I can finally feel like I’m being myself. This is not me, I don’t want to be low key and subdued, reserved and cautious. I don’t want to be mediocre, or boring. I don’t want to be financially dependent on my mother.
Why me? Why?.. Then I look at those who are worse of than me and I think I’m being petty. I shouldn’t complain. I have a lot of things to be grateful for. Things could be a lot worse. Great, so now I feel guilty and weak for complaining. On top of this, most people don’t understand what it’s like. “Why don’t you just start doing something, then the energy will come.” Don’t you think I have tried that! I’ve been home for 3 years but oh, I didn’t think of that. Maybe if I just get up and do something I’ll get better.
Yes I’m angry. I’m angry that people don’t get it and often don’t even really try to understand. I’m angry that on top of everything I have to justify myself to them. Do you really think I’m not doing everything I possibly can to get better. Do you think I want to sit her and wither away as I watch the world go by?
I’m 30, single with no career, no assets and I live with my mum. You figure it out. I’ve been unwell for so long that it’s slowly sucked the confidence and self-esteem out of me, and I don’t even know who I am any more. I’m even scared of getting well, because I wouldn’t know what to do. I barely remember what it’s like to feel normal. I’m slowly running out of hope. But you mustn’t because without hope that’s the end. So I’m stuck in limbo, just waiting…
I’ve had enough. I want my life back. I want to be healthy NOW. I want energy now. I want it now. Please! If there is a God please help me.
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By: Taking Part « ME/CFS Awareness on May 21, 2009
at 7:11 pm
I share your feelings of frustration and wanting your life back. Thanks for being so honest and open. I wish it were different for you.
By: rachelcreative on May 21, 2009
at 7:13 pm
Hi Rachel,
Thanks for leaving a comment. I visited your blog and website also. I LOVE your art. Esp the drawings in one of your posts that create a little story. That was awesome. And I liked the “I am still disabled when my disability is invisible” image, and also teh post that followed. So true! When I was really bad, I didn’t like being out or around people because I look fine ont he outside, so people think you’re pretending to be unwell or as you say being difficult. Even on the bus, I would worry that I’d have to give up my seat to anyone who was older, even though I really need to sit.
Luckily I’m much better now. I’ve only recently started blogging, and it’s nice to see there are others like me. There’s lots of support. It’s nice.
Hey Rach, a few questions. How do I add a link to your blog on my blog? Also I joined the Chronic Artists ring, but can’t work out how to add teh link/log to my side bar. I’m not very computer savvy.
Any tips would be greatly appreciated when and if you are able to give it.
Have you considered doing childrens books?
=+)
Svea
By: freesvea on May 22, 2009
at 1:49 am
Svea, I have some great news for you!! Here is a link to some research which was reported on earlier this year about CFS:
http://www.prohealth.com/library/showarticle.cfm?libid=14274
I have it permanently linked on my blog under Research. See? There IS hope!!! People DO care!! And scientists are reaching out there for the answer, no matter how tedious the work is.
I really appreciate your heartfelt post on this topic. I share your feelings with how it is to reconnect(or just plain connect) with people from our past and how… horrible… it feels to not share their enthusiasm for life. I cut off ties to so many people for this reason. It just got to be too much. I got tired of explaining why I can’t do things with them or have to change my plans because of my illness.
So glad to see you started singing, too!!! I’ve been considering this as a way to increase my lung capacity and overall strength. I want to find a nice church organization I can become involved in locally.
Hugs,
~Angel
Ps. Thanks for adding me to your blog roll. I’m going to start a section today to list wordpress pages I follow, with yours added.
By: Angel on May 28, 2009
at 12:03 pm
Thanks for the research link Angel. I’ve had a brief look and have downloaded the report. Will read through it more carefully soon.
Is Angel your real name? It’s nice.
Love,
Svea
By: freesvea on May 28, 2009
at 12:30 pm
You are more than welcome, Svea. I have found that researching my illness and all the newest treatments/fads has expanded my horizons quite a bit. It pays to be informed when you go to your doctor. An educated patient is a “difficult” patient. And this leads to more open discussions with your doc. (Psst! Being difficult isn’t a bad thing when it comes to your health!)
Have you heard of CellFuel? It’s a vitamin type supplement that is pretty good for FM as well as CFS. I used to take it but my finances have dwindled quite a bit. I think it’s a pretty good energy booster. It’s helped me, anyway. When I get some more $$ I’m going back on it.
http://www.blessednutrition.com/ceforfi.html
I can get it from my local pharmacy for only $50 though. They get good discounts because they buy in bulk due to all the FM’ers in the area.
I’ve started a new segment in my blog on treatment fads and scams. I’ve researched two so far. Lord knows I’m going to find a dozen more. It’s fun, though. Keeps me busy, my mind engaged, and lets me know whether or not something is promising or utter trash.
And yep, Angel is my real name.
By: Angel on May 28, 2009
at 3:52 pm
Yes, I’ve done quite a bit of research myself, but more in the area of hormone imbalance, esp thyroid and adrenal as I have Hypothyroidism which, left untreated led to adrenal fatigue. But I think I was unwell for so long that it’s led to CFS now, because I’ve tried pretty much everything in the thyroid and hormone area (my doctor is really good, and has these conditions herself).
I did go for many years without any help and with terrible doctors, and yes I did take their word for it. They were the doctors, I thought they knew better. But now I know better than to think that. I’m definitely a “difficult” patient now, and I encourage others to be. It’s amazing how much faith we put in the average doctor. I have at least a couple of friends with long standing CFS, and it’s been difficult convincing them to be proactive and to try different things. Once I reallized that I have to take control of my own health, that is what I did. It can be hard to do that when you have no energy, feel depressed and anxious and hopeless and can’t think straight, which is why many don’t do it I guess.
I went to hte Cellfuel page. I’m guessing you are in the US. I’m in Australia, so I’d have to look into whether I can get it here. Do you have any other websites that have more info on it? I’ll have a look myself.
What a great idea that you’re reviewing CFS/FM treatments on your blog. It’s so funny you’ve said that because it was only this mornig I thought of that myself. Well, actually yesterday on the news, there was a short story about a student here in Australia who had just won $13 million on Lotto. And this morning I was thinking about what I would do if I had that money. I thought a CFS website that reviewed treatments etc would be great, because there are so many out there that claim to work, and as we know, most CFS/FM/MS people don’t have much money if they aren’t working. It’s hard to know what to try. God knows I’ve spent thousands of dollars by now on different things, and I don’t try just anything.
=+) Svea
By: freesvea on May 28, 2009
at 11:48 pm
I had the EXACT same experience when I joined FB. I’m 37 and have had CFS since I was 22. I could swear with each friend I became more and more convinced that I was the last single non-parent on the planet. But it’s not true. There are many of us out here, just like you…soldiering on. I hope you can find a way to be proud of you strength and ability to survive. Sending you wellness, Amberlin
By: amberlin on October 1, 2009
at 1:31 pm
Hi Amberlin wonderful you! =+) Thanks for your kind words.
It seems to me that the majority of people with CFS (and chronic illness in general) dabble in creative pursuits. I suppose that, in an attempt to feel productive, we must be creative about coming up with things we ARE able to do despite our symptoms and fatigue. That is a challenge. While we may feel unable to contribute anything meaningful that the rest of the world validates as such, following some sort of creative pursuit, no matter how small, can help us feel that we are not just taking up space. And at the same time it nurtures and comforts our souls of course.
Buying something that a CFS sufferer has make or created, is a wonderful way of validating their existence and showing them that what they CAN offer does make a contribution to the world.
Amberlin, do you know of any online markets or communities specifically for CFS artists and crafters? It would be great to have all of them in one place, wouldn’t it?
To your Health & Happiness,
Svea
By: freesvea on October 4, 2009
at 5:30 am