Those of us with fibromyalgia and chronic fatigue syndrome can learn a lot from each other, and that's true regardless of age.
A recent Readers Respond from a teenager is a great example of that. She's having a rough time, but she's also finding ways to deal with it. Here's what she had to say:
"Well, I'm only 13, so you will think i don't know what its like, but honestly, I do. My friends to be honest aren't very nice about me having chronic fatigue. I take all my time trying to explain it to them and all they will say is 'oh' which really upsets me. I can't do the things I used to, and they think I'm avoiding them when I say 'sorry I really can't come out today.' A way to describe it could be 'it's a different sort of pain, which can't be described unless you have experienced it. Every day I am in some sort of pain, and some days I'm completely inactive. I have no energy, I'm always tired, but no matter how long I sleep, I don't feel refreshed.' A way to deal with it, for me, is finding something I really, really love. For me, it's music. Do things that you love! I listen to music and read about my favourite artists and look at pictures of them. It passes time and gives you a better state of mind! Hope I helped. xoxoxo"
She's exactly right: it is essential for us to find something we love that we're still able to do! Thanks for the words of wisdom.
What are the things you love to do that help you keep going? How do you explain your illness? Leave your comments below!
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- Readers Respond: Explaining Chronic Fatigue Syndrome
- Readers Respond: Explaining Fibromyalgia
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I don’t think I could do it better. I always loved music far too much and loved its highs too bad. I find I can’t listen to music so much because it is mentally too tiring no though. She maybe forgets to mention how mentally tired we feel as well although she really imlies it- not only phisically. I am an author and have several publications and, as most writers, I also love reading but now both of these activities are far too demanding for my poor mental energy – (which I hate!). Fortunately I am also an experimental photographer and I also have some publications of this kind. I think I am lucky I enjoy a type of photography which doesn’t require to go out and chase birds all day as I used to. Now I have no choice but concentrate more on my photography – which I absolutely love and read small things here and there. My family, particularly, can’t wait to see my next photos – they ere really impressed by my last publication.
We adults could learn a lot from young people such as this one. There are days when I wake up feeling so sorry for myself that I can’t see past my own pain.
I should be thanking the Good Lord that I still wake up. I have family that cares about me and like this young lady, I have a couple of hobbies I can still enjoy with some limitations.
She has found joy in a life with extreme challenges. Attitude can make all the difference!
Well said, teen, well said.
Sorry, but adults aren’t always much better. Unless it’s an open compound fracture a lot of people wonder why you’re not feeling well…hey, they feel fine.
One “friend” invited us to their home for dinner and after waiting nearly two hours while other guests arrived, we begged off to head home; I just couldn’t stand the discomfort anymore.
The response: “Don’t you have pills for that?”
I had a Major Depression episode when I was about 12. My Mom my Teacher everybody kept asking me whats wrong? I didn’t know what to tell them I just said I was fine. I didn’t even know what was going on in my life. Here is it 43 yrs later and after many episodes off and on in my life some that left me totally incapacitated I know what is going on and what to do to help myself and get the help I need. I believe a lot of the reasons I have Fibro/Chronic fatigue today is because of the Trauma I have experienced in my life. Could some of it have been prevented? I don’t think it could have and this is one of my trials in life. Now I try to make Stumbling Blocks into Stepping Stones. None of us are free from trials but hopefully they will make us stronger if not Physically at least Spiritually and Mentally. At least now people are aware but as far as the pain and Fatigue so many people don’t get it. It’s hard but all you can do is your best and forgive those who don’t get it.
Hi! I got diagnosed with fms 6 months ago but been suffering for the past 4 years with arthritis “so they told me”! I’m still learning about how to pace myself,but most things in my life have had to change,Ive always been a busy mum to 5 children and a registered child care provider (Childminder) so u can imagine on Sunday’s I would be cooking Sunday dinner for 12 people, but not anymore,and I find it all very frustrating as I’ve always been the one caring and looking after my family.one thing I won’t give up is my family horses n ponies,I don’t get to do much anymore as the fms holds me back but I won’t give them up or if I did I’m sure I would have given up on life by now,they give me the will to carry on n get up of a morning and just the fresh air and being around them helps me so much so I agree with the young girl that we all need to find something we enjoy to help keep us going,that is the best medicine for anyione with fms.
What a great way of explaining. I’ve been diagnosed with fibro since ’04 so I’ve had some time to adjust and learn how to pace myself. I was in my mid-twenties when I got diagnosed so I had to deal with a lot of “you are so young, isn’t that for older people” “you look fine” and similar comments. Luckily, most of the hurtful and insensitive comments were from co-workers at the job I held then.. i ended up leaving about 6 months after my diagnosis because my boss made it clear I’d be fired after my FMLA time was up. So that was a pretty stressful period in my life.
Her comment is on the ball to for finding something that you love whether it’s something you’ve loved doing for awhile or finding something new.
I love taking walks (hikes when I can) and taking pictures during the walks. I figure if I’m moving slower than most people at least I can take nice and interesting photos during the walk.
I enjoy cooking when I have the energy to do it. I’d love to have enough energy and funds (currently unemployed) to have some friends over for a monthly dinner party/potluck. Cooking for other people is so much fun but it really takes a lot out of me. I’m usually on the couch for a couple days afterwards.
Also, I love gaming. It can be video games (PS3, Xbox), PC games, or board games. It gives me something to do when I’m not feeling up to walks or more active socializing. I also invite some friends over for a game (usually board games) night that is pretty mellow. It also is a great opportunity to catch up with friends that I don’t see very often.
When I feel really down and out due to fatigue or high pain levels, I am so grateful for my love of reading. Of course, there’s always watching movies and shows on Netflix, Hulu, or the actual tv.
Fibromyalgia awareness day . Now accepted by the medical community as an illness with the same symptoms as cancer patients on chemo , the same symptoms as patients being treated for aides . There is no end in site or cure . Some do die from complications of FM , too many take their own lives . Its not always obvious to others how much FM affects people , as they become brilliant at putting their best face forward , whether it be for an hour or a whole day , they do pay for it later. In private they pay for days even months suffering great pain and many illnesses that come along for the ride of FM .
Empathy comes from walking a mile in their shoes. Chronic fatigue , brain fog , arthritic like symptons , flu symptons ,no restorative sleep ,to name a few , rarely getting a break . See how well you would function dealing with one of these symptoms on a daily basis , see how your nerves would hold up. People with FM do know the terms , beat by a baseball bat , hit by a freight train , run over by a semi truck , very well , that’s how they try to put it into perspective for others. They learn to pace everything they do in their lives. FM steals a lot from them , such as the choice to make a living ,to getting out of bed in the morning , things most take for granted . Its not a pity party , ignorance may be bliss , but awareness goes far to help validate the illness millions are suffering with world wide. Guaranteed you will meet someone , hear of some one , or become someone with FM. FM sufferers wouldn’t wish their illness on anyone ( the only way to really “get it ” ). So think before you speak . You would never tell some one with a chronic illness like cancer they don’t look sick , because you do “get cancer” , then don’t say it to a person with a chronic illness you don’t get . People are always asking how they can be more supportive , this is a great start .
Sandy – your response is perfect. I believe I will copy and paste it into a family letter if I have your permission to do so. You are spot on!
And to the sweet little teen that is learining to cope with FMS, you’re doing great!
As for me, I’m still searching for things in my life that can be relied upon for making life more fulfilling. After having a career as a Dental Hygienist for over twenty years, a single mother of two wonderful daughters, and now a grandmother of two, and now, a blessedly happily married wife to an amazing man, I have to say that mostly I continue to count my blessings for having had such a full life to this point. Like so many others, input overload, whether through reading, music, talking on the phone, visiting with friends can be excruciatingly tiring for me. I simply take one day at a time, and sometimes, 30 mins to an hour at a time, and be grateful for whatever it is in that moment that I can enjoy without suffering. I truly enjoy my conversation time with our Lord, and it never hurts me too much to pray for others. While they may not feel physically connected to me, I know that we are all only a prayer away from one another.
On this special day of Fibromyalgia Awareness Day, please know that I am ‘aware’ of you and support all of you in this struggle.
I’ve been dealing with CFS since my first year of high school, and I was sick long before that. I’m now closing in on 17, and I’m very glad to have found a great group of friends. I don’t show up at school often because I’m hardly ever well enough to go, but when I do, it’s like I never left. I’m still a part of the group, still included, and still valued.
I love horses. I really want to be a professional horse trainer/coach if and when I’m better. If I can get out of the house for a bit, I often visit friends’ horses. I can’t ride as much as I used to because it completely wipes me out, but just walking round a paddock with the horses is really nice. I just have to remember which ones will let me lean on their backs if I get too tired!
I still find it difficult to explain CFS, mostly because I get annoyed with the “oh, I get tired sometimes, maybe I have that” and “it can’t be that bad” type replies. I don’t think they understand that those types of comments makes me want to throttle them. If I must explain, I try to make it as simple as possible, for my sake and theirs.