Today I went back to work after being off for two weeks and as I was making my way around the store, I kept thinking about how strong of a person one must be to live and cope with CFS & Fibromyalgia. The old saying that “God doesn’t give you more than you can handle” must be true. If not, look how many millions of us wouldn’t be here anymore?
I feel that I have always been a very strong and independent person and while sometimes that has been to my detriment, it has helped me in dealing with these illnesses. I think that because a lot of us have Type A personalities with CFS & FM, we have carried through with our determination in getting through the miserable times of sickness like we used to get through working lots of overtime and everything else we did to succeed.
I do get down and depressed at times, especially when I am experiencing a flare like I just went through the past two weeks. But I feel that for the most part, I, as well as many others, have learned to put CFS & Fibromyalgia in a compartment in our lives and we have learned to do what we can, when we can, and take things one day at a time. It is hard for most people to not know what their lives will be like one day from the next – and that is what we live with. From the time our heads raise off the pillow in the morning (if they do! :), we have to live our day minute to minute, hour to hour. Plans are never set – they are always a “maybe”. We can’t depend on a set income because we don’t know how long we will be able to work, if at all, and how many hours we will be able to do on a weekly basis. Because of this, we have had to learn how to be creative and very good at math – LOL.
It takes strength to live in a normal world when we are anything but normal. Everything we come in contact with in life revolves around normal thinking, working, shopping, whatever it may be. The world is not designed to accomodate sick people like us. Yes, we can get handicap placards for our cars and ride the electric carts at the stores, but that’s about it for us.
Employers don’t know what to do with us, our families don’t know what to do with us, and if we have any friends left, they don’t either. We know that everytime we make a friend it probably won’t be for the long-term because they don’t know how to cope with our frequent relapses and constant cancellations. So we often end up lonely, hanging on because of the strength and determination God gave us to somehow, someway get through life. We are squares trying to fit in a round world – and it takes a lot of guts and strength to be different. Even more so when we have illnesses that have had sugh huge stigmas surrounding them like CFS & Fibromyalgia.
Be proud of who you are, flaws, sickness and all. You are strong because you are still here -f ighting every day.
Excellent Post…..every point exactly true.
I just read your post and almost broke out in tears. I have been sick for 2 years now. Headaches, back aches, joint pain and I am constantly tired. Even after 17 hours of sleep I do not feel rested. My doctor diagnossed CFS. I was in Desert Storm in 91 with the US Army as a CavalryScout on the front lines and I belive that might also be a reason for my CFS. After the army I moved to Germany because my wife is German. I have good medical coverage which is positive but the doctors here do not know what to do with me. I have been in and out of the hospital and to almost every kind of doctor. I have also been diagnosed with barret esophagus, reflux symptom, Vitamin B12 deficency and circular hairloss. I spend all week in bed and on the weekends I go for short walks with my wife. If I walk more than two miles on the weekend the I’m suffering the entire next week not being able toeven getout of bed. Needless to say I have lost my job. What bothers me the most is that all this started in a 3 month period where one symptom came after another. Like I have mentioned the doctors here have no clue of what to do with me. I am hopeing to find some advice here on the net and wanted to thank you for you post. It gives me a little hope. I was thinking I was going crazy.
Best Regards
Anton
Anton, First off, thank you for fighting for our country. That in itself takes the most strength – to put your life on the line to save people you don’t even know. Have you heard of Gulf War Syndrome? I know a lot of Desert Storm vets have this and it is similar to CFS. Do a search on it and let me know. It is hard to lose your job and lose security. I feel for you. You are not going crazy. I am glad I could write something that would give you some hope. Please keep in touch and let me know how you are doing!
Hi,
I just had to say that I have an lot of respect for you. You must have guts and lots of them.
I’m still waiting on a diagnosis of what I, and my neurologist susects to be fybromyalgia. He won’t diagnose till he’s check everything and each specialist he wants me to see has waiting list meanwhile I can’t start any treatment, also I don’t seem to get flare ups, I’m just in agony and exhausted all of the time.
I’m not strong, far from it. I’m at the stage now that I just can’t take anymore. I’d rather go to sleep and not wake-up. Please don’t mistake this for any kind of threat I would never end my own life. It’s just they way I feel!
Not everone is strong like u, you should be very proud.
M x
Thank you Michaela for your compliment. I understand how you feel when you say you would rather just go to sleep and not wake up. CFS & FM is like a life prison sentence, isn’t it?
Sorry I meant rheumatologist, it’s the neurologist I’m waiting to see. :/
I just re-read your post, and I printed it out. Particularly for the last two lines. “Be proud of who you are, flaw, sickness and all. You are strong because you are still her, fighting every day.”
There are many days that my self-esteem is in the toilet, because I cannot do what I used to do. Also, I do not look the same. Over the years, with metabolic syndrome (characteristic of ME/CFS), inability to jog/walk my 4 miles (now walk a few minutes) and medications which have the main side effect of “weight gain”, I do not recognize myself. Who is this woman with layers upon layers of fat, which appear to smother what was once me. Who is this woman who was on the go 24/7 and has to schedule a shower. My spirit is deep within, I remind myself. Some days I know the essence of who I am is still here. On the other days where this illness has me in its total grip, I feel swallowed up, gone and forgotten, a non-entity in a hustle, bustle world, where appearances are overly valued along with how much one can accomplish to be worthy of living in this world.
So..I remember…Be proud and I am strong. Rather, WE are strong.
Nancy, I know it is hard because I am guilty of doing it also – thinking about all of the things I used to do. But that is not good for us to do that. Everyday I try to be grateful for the things I am able to accomplish and try to look at what I did yesterday as another season in my life. Take care of you and you are strong! 🙂
It’d be nice if I read for typos before hitting the “submit” button. ugh.
Sandy,
Thank you for writing the words that are constantly in my head! I was diagnosed with FM in 2000 and have lived with the many ups and downs (so many downs) of this illness for so long. I usually get frustrated and can’t read through many posts (this is actually the first one I’ve ever commented on). So thank you. I hope today is a good day for you…
Thank you, Vikki! I am glad that you were able to get through the post. I can’t read long posts on sites and if I see something that is too long I don’t even bother reading it. I just don’t have the concentration or the energy most of the time. Take care and keep coming back!
Hi Sandy
I so relate to this post. I am also a ‘Type A’ using determination to get through CFS!! In some ways I am grateful to have this sense of determination as it has stopped me from ‘falling off the edge’ so many times. On the other hand, I’m sure if I could be a bit more relaxed about stuff sometimes my body would be in a better place to heal. As I’m writing this I am once again reminded that balance is the key. But oh how hard balance is to Miss ‘Type A’!! xx
Thanks Sandy,
I’m glad I stumbled across this site, and your post in particular. I have a blog – mainly about my artwork and crafts, and a bit of everyday family stuff. Every now and then I blog about my fibromyalgia – I hate to whinge to all the “normal” people out there, but every now and then I just need to let the world know that I am not OK. I am struggling to get through every day. Most people would prefer to ignore chronic illness. My friends and family (except for my amazing husband) don’t know what to do or say anymore. After four years of being unwell I realise that my old life is gone. There is no solution, but it does help to have someone listen and acknowledge what you’re going through day in and day out. I am trying to focus on my achievements, however tiny, not my limitations. Things like preparing a meal for my family, or making it to my son’s basketball games, or managing a short trip to the supermarket for a few things. Tiny victories but if I can find one or two things that I have achieved for the day, then I try to focus on them and not on all the things I can’t do. Hope today is a good day for you. Anita.