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22 years old with CFS/ME. Nobody understands, but you guys! this is my 1st forum post!

Posted , 6 users are following.

tiara416
tiara416

I wish CFS/ME wasn't an invisible illness because on some degree people think you are perfectly normal and more functional then you actually are. I dont want pity from others just understanding and a little acceptance. Family expects more from you not knowing you can barely put in 40% to things they could put 100% effort in to. 

I find it difficult doing things around the house and I live with my 77 year old grandfather who has wayyy more energy then me, and my 51 year old mother who is always so active works fulltime leaves work and is still on the go 24/7.. thats how I know something is wrong and out of the ordinary.  Theres no way my 77 yr old grandfather and 51 year old mother should have energy all day and im 22 laying around because I have no energy to begin with.

People dont understand all the pain from different things that I go through and its pretty difficult not to complain when people demand things from you. Im sick of trying to explain to people what I can and cant do so I do things that use up all my energy trying to at least put in effort.. then Ill be even more tired and people perceive it as laziness. I hate it! Im a very optimistic outgoing adventurous person but Cfs/ME puts severe limits on what I can and cannot do. 

Ive been babysitting 3 kids 4,7,&8 years old all summer long well since May.. so thats 4 months every single day starting at 6am and some nights they would spend the night so it was repetitive action. It was so tiring and took so much out of me that I didnt have from the start. I did it out of love because a situation happened and I was the only person not busy that could watch them. Of course I get paid  by the state not much at all. Its kind of a rip off but its all I could really expect for a job with all the daily pain weakness and tiredness. 

Now the kids just started school this week so its no more watching them thank God! I thought Now i can pace myself a little more. Get back some of the energy used up those 4 months. But I Cant pace that much or seem to relax because My grandad expects so much from me.. All summer while I was watching the kids at home he always talked about how I need a real job duh i know! and I want real money! I have things I need to get done. I do music so I need money to invest in studio time and marketing.  Along with that I just need money to survive. 

If I could be a cashier like i used to be or work at an office I wouldve gotten a job that paid realistically. However, I have severe tingling and burning sensations throughout my arms fingers hands and feet all day every day. Spine inflammation & Stabbing Headaches throughout the day that come out of nowhere. A major nerve problem. How could I possibly handle a cash drawer and keep a positive attitude in a work environment or better yet stand all day or sit all day at an office job without falling asleep. Even though its hard Im still considering getting a part time night job because I really need the extra income. Plus Im sick of people thinking im lazy. 

Nights are easier for me to stay up but I guess thats the Insomnia. Oh not to mention I have a serious nightmare disorder Ive been having nightmares since I was little like every other kid but even back then I think they were more evil then they should've been. Since the age of 4 i remember having them every other night.. i can actually remember clips from every nightmare I ever had.. versus real life events i barely have recollection of.. thats how much brain memory the nightmares take up. Ever since I hit the age 17 Ive been having nightmares every single night.. and since the age of 19 Ive been having them every single time I sleep! Rather daytime nap for 30 mins or after I wake up in the morning for a bit and fall back to sleep I have nightmares. I wake up sometimes about 7 times throughout the night and each time I wake up i go back to sleep into another vivid evil nightmare. So I could have anywhere from 3 nightmares a night to 10.. depending on how frequently I wake up! I can never sleep a whole night through. 

I thought maybe I had a REM sleep disorder since my mind seems to skip all the other stages of sleep and go directly into nightmares but Ive been to doctors had multiple sleep studies and MRIS and the only thing the doctor could tell me was I had a few white spots on my brain but it could range from anything like headaches (what I do suffer severely from) to multiple sclerosis (what Ive been tested for but didnt have) then i went to another doctor a year later the spots were gone but he said there was a little abnormality and it was nothing to worry about because he had a lil brain abnormality too. Like he was just dismissing it. 

I Felt like a lost cause after turning to all these doctors for help and not one could offer any real help. Then i did a little more research and found Cfs/ME. Now I know they are 2 separate illnesses but I know I have both. I actually have 24 of the listed symptoms ranging from nervous system mental symptoms and physical symptoms. Not to mention having to forcibly lay down like 15 out of 24 hours a day not including sleep time. It is very debilitating and people on the outside looking in swear you are lazy and might say get up! & do something.  

Trust me at 22 years of age if I could just get up and jog around the block I would. Who would just choose to lay around all day year after year wasting valuable time. There is just no energy day after day night after night. As if the sickness itself isnt enough I cant help but think the chronic  nightmares add more stress and fatigue to my already worn out brain.  It feels like my brain is on constant overload all the time. 

Anyways Im going to a CFS specialist here in Michigan I have an appointment September 29th and I cannot wait to see what he says and how he can offer help! Hope anybody reading this can relate and I wish you all the best future help. Stay strong you are not alone. We all have the same battle maybe with different difficulties but we all need this forum to help us cope and see that others are going through this invisible disease with us. Love you all God bless! I apologize for the long post I just really needed to vent!  Feels like im about to explode.

1 like, 6 replies

6 Replies

  • JulieBadger
    JulieBadger tiara416

    Posted

    Vent away cheesygrin.  Although mine started when I was about 14yrs old it didn't get to really, really bad until last year when I was 35.  Therefore I was lucky to be able to cope with the pain without others thinking I was lazy when I was young.  I just had a "bad back".  Or at least that was what my mother told me I had - thanks.  Therefore I've always pushed myself and still do.  I've got the boom and bust down to a fine art and can do it at least 3 times a day now.  Thing is, I do it partly in response to that 'not being lazy'.  Even though I know I shouldn't, it is still so hard to see jobs that need doing and not to just do them (or at least try).  Others say, 'take it easy,' take care of yourself'.  But I can't and not be lazy.  I hear what others say about those who don't try to work and they are thought of to be lazy.  To see others who are older than you, who work and then continue do a million house jobs once they get home, makes me feel lazy.

    I showed those close to me the 'Spoon Theory' which you can find on the internet.  It help them to understand my energy levels and we sometimes talk in spoons as I find it easier than keep saying I'm tired.  Or should I say exhausted!

    In terms of it being visible.  It means we aren't stared at all the time and we can try to hide it when we choose to (my meetings with clients I try to hide it, so they don't think I can't do my job cos a have a disability).  However, if it was visible then others don't push us as much. When I'm seen on my mobility scooter and using sticks people don't expect so much.

    You've just come out of a demanding child caring situation. Once you recover from that you might find a part-time job (ideally with flexible hours which you can adjust around you good and bad days). Good Luck

    • tiara416
      tiara416 JulieBadger

      Posted

      Thanks so much! I appreciate your prompt feedback and yes i cant wait to find a part time job its so boring being tired with different ailments. I love animals i was thinking of working at petsmart petco something a little exciting if not working around the animals then the animal supplies will suffice. A boring job just wont do lol. I saw a night time laundry attendant for the marriot hotel i think that will be good too. Anyways enough about me i wish you the best in everything you do!

      Its great to see you coping with it after 21 years! Take care and continue to keep good spirits. Your feedback made my morning 😀😊

    • JulieBadger
      JulieBadger tiara416

      Posted

      I hope your ME/CFS specialists are more helpful than mine! Supposedly a really good unit.  Interviewed me and my husband for 40mins. Confimred definately ME/CFS.  Set-up OT appointment, asked my doctor for 2 more blood tests and to see a neuroligist re my seizures. That was it, no advice how to manage it, diets or anything.  Oh and don't think every new ailment is part of the ME/CFs. Have it checked each time.

      Good look at the animals work search. What how physical the jobs are and how frequent breaks are to help you pace. Good Luck

  • sharon777
    sharon777 tiara416

    Posted

    I'm so happy you have an appointment with a CFS specialist and really feel for you.

    I wish you all the best and I hope you start feeling better soon.

    You stay strong too.

     

  • jackie00198
    jackie00198 tiara416

    Posted

    Sorry you're having to deal with this lousy illness. It's great that you're seeing an ME/CFS specialist. One thing I've learned from dealing with this illness for years--I have to advocate for myself and set my own boundaries. Yes, it's very annoying/upsetting that many people don't understand what I'm going through. But I won't let them dictate my actions, or lack thereof. I do what I have to do regarding rest and not working. If they think I'm being lazy or that I should get out more, so be it. It sounds like you need to step back and do what's right for you. It's very hard to recover unless you get adequate rest and pace yourself. 
  • scooper
    scooper tiara416

    Posted

    Hi Tiare you must have been worn out after riting this message. the best place to vent is to people that understand and thats us . personally i feel that my body could sleep on a bed of nails but my soul is to aggitated soooo frustrating grrrr 
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