Just need people who understand me to see how they cope living with CFS

Hi, KPD--I can really relate to what you say about social interactions. Any type of social interaction, even talking on the phone, is very difficult for me. I barely have the energy to even talk. But sometimes, because of the extreme isolation, I force myself. The other night, we had people over, and I was talking while standing up. After a few minutes, I felt like I was going to collapse, and had to excuse myself. I have a lot of difficulty knowing how to explain my situation during social events. Do I say nothing, leaving people to think how weird I'm behaving, or do I explain my illness, perhaps saying more than anyone wants to hear. When I do mention my illness, I say ME/CFS, because I think it's important to come out of the shadows and let people know who we are. Right now, this is almost an invisible illness, even though so many have it. I think if we become less invisible, ME/CFS will get more publicity and therefore more research. This is what Jennifer Brea has done with her new documentary about ME/CFS:  UNREST. I saw it a few weeks ago, with an audience of people who were all affected by the illness. Jennifer Brea took questions after the screening. It was a very powerful experience. By the way, I realize that maybe it's inappropriate for me to say this, but...30 minutes of exercise daily??!!! I'd end up in the hospital if I did even half that. Be very careful. I've never heard of exercise strengthening the immune system. And with this illness, as I'm sure you know, if you push too hard, the result can be a bad crash. I still don't think many doctors understand this.

Hi Jackie,

Being social and talking is so difficult. I used to be an elementary school teacher and my noon I felt like I'd been fun over by a truck. I finally quit my job in hopes that my symptoms would improve with more rest, but that hasn't really been the case so I've started to substitute just to get out and be around people some. It's so hard, but staying at home day after day is making me nuts, too. 

I really want to watch Jennifer Brea's documentary but I'm honestly a little scared because it might make me so sad. Does she end up getting better or at least improving? Can you share that part with me? The trailer simply made me cry and made me feel more hopeless. 

By the way, do you know anything about hormones and CFS? I mentioned that I think I've gotten worse in the past few years because of the hormonal changes. I'm seriously considering taking them again even though there are many risk factors associated with them. I'm hoping I run across someone who has taken them and gotten relief from the fatigue. 

It makes me kind of mad that my doctor insists on 30 minutes of exercise. I agree it can help but only in moderation for me. 

Anyway, thanks for sharing your story, Jackie. Hope you have a good day :-) KPD

Regarding the movie UNREST--I can only tell you the effect it had on me. Yes, of course the stuff Jennifer Brea goes through is very sad, as it is for all of us. But the fact that she shines a light on this illness and her experiences made me feel good, because it validates what I've been going through, and shows that i'm not alone. I think the medical profession has hugely failed us, and what I've come to, is that our power lies in our connection to each other, like on this forum. I think that, ultimately, more research will result from this power and what we do with it. My husband and I were just thinking, if everyone with ME/CFS (estimated to be 17 million worldwide) gave $1 to research, that would be $17million. As opposed to the paltry $5 million per year now allocated by the NIH. I don't know anything about hormones and ME. I'm hoping others on this forum can respond to you about this.

Hi Jackie, 

I'm laughing out loud right not because I just read the comment I wrote this morning, and realized that there are so many typos in it....of course, my brain fog is so bad right now and I can't seem to get any relief, so that might have impacted my writing skills/abilities. 

I agree with you that the medical profession has really failed us, and I'm just hoping that the documentary will be an eye opener for many. 

I really do want to watch Jennifer's documentary, and I'm sure that I will in time. I just need to be in a better place than I am now. I've hit rock bottom in terms of my health right now and feel worse than ever. At this point, I just wish the fog and fatigue would lift for a few hours doing the day. Hoping tomorrow will be a better day because the last 3 days have been so awful. 

Hope you are having a better day today or moment. Have a nice weekend. Talk soon. KPD

People and especially medical professionals really need to understand that exercise can be very damaging to a person with our illness. The trend these days is to get the whole world doing exercise because for decades we have been fed junk and not encouraged enough to get out and move around. If your ME/CFS/Fibromyalgia is that bad then exercise is quite likely to make you worse in my opinion. I am no expert, just a sufferer but this is how i see it and doctors need to act responsibly when perscribing exercise. Listen to your bodies needs and exercise when you feel you can is my advice. 

Thanks Andy. I agree with you. Doctors are so quick to suggest that exercise is the answer to many things and I agree that in many cases, it makes the patient feel worse!

I do find that light to moderate exercise is beneficial, at least for me. It helps me to stay positive, helps condition my muscles, and helps to keep my heart healthy. In my case, I don't think it makes things worse. It's not like "rest" improves my condition, if that makes sense.

I usually (not always) feel better if I get up and exercise moderately for 30 minutes. The benefits are not immediate, but within a few hours (about mid day), I usually end up feeling significantly better. It sometimes buys me a couple of hours in the day where I feel O.K. verses feeling like I've been hit over the head with a baseball bat.

Unfortunately, the brain fog always returns, especially during the mid to late afternoon hours. Mornings are actually the worst for me! I hate waking up and always feel terrible. Evenings are the best hours for me and that is when I feel more positive and have a better outlook. That is the other puzzling part of this illness. Why do so many of us feel worse in the mornings and better in the evenings? Do any of you feel that way?

That be said, I certainly do not think that exercise is the answer for every case. I think this illness is so misunderstood and every case is unique, so each person must do what works best. I wish there was a magic pill out there that would fix our immune systems, if that is what is making us so sick.

I still wish I would get some more feedback on here about how or if hormones play a role in this illness and if anyone has tried LDN (Low Dose Naltrexone) to treat CFS/ME. I belong to a private FB group where many are getting relief from this drug. It is used to treat people who have opiate addictions, but in lower dosages, they are finding that it helps people with autoimmune diseases. KPD 

 

Hi KPD,

I realised I didn't reply to your last message before so I just wanted to say a big thank you for all your really encouraging advice about motherhood and ME. You probably don't realise but your words made a big difference to me, and gave me hope, and probably did that same for other people too.

It sounds like you're going through a really tough time and I can relate to a lot of what you say. However, from where I stand, you're the type of person I admire. You've managed to raise a child, maintain a successful marriage and work as a teacher (I know what a hard job this is as I used to be one). All with a debilitating illness. Hats off to you! I only hope I can achieve half of what you have in 20 years time.

I know I dont know you but I wanted to offer this insight on things you've told me about yourself.

Hope you're feeling a little better, and if you're not, that's ok too 🙂

Arlee86

Thanks so much for your sweet and thoughtful words, Arlee. They mean so much to me, especially now when I'm feeling over-whelmed.

I've experienced so many fulfilling years as a mother, wife, and teacher. I know I'll get past this temporary setback and will be able to enjoy more years ahead with my grown, mature daughter and supportive husband.

I'm so glad that I could offer you words of encouragement and hope for your future. I don't know you either, but I'm sure you are going to be a wonderful mother. Keep me posted on your progress! KPD :-)

I noticed first getting up in the morning is indeed the most difficult. It's like you were put in a coma for ten years and are just being pulled out of it. I notice I'm much better in the evening too. Thought maybe I was nocturnal or something 😂. But then I have to tell myself it's time for bed or you'll regret it in the morning. I always hate waking in the morning no matter how much sleep I get anyways!! It's harder on the days I have to wake up at 5am for work than it is waking up at 7am to get my daughter off to school. I made the big mistake of laying down for a nap at 11am without setting an alarm and waking up at 3pm. I have to say it's worse than waking in the morning. I feel completely bulldozed over. Headache, and just thinking oh my gosh I feel like I'm dying right now. I had to get up knowing if I went back to sleep it'd be even worse and sit on the couch doing absolutely nothing for 45 minutes waiting for my body to normalize before I could manage to sit on the floor in front of my child's toy box and sort through what to get rid of and what to keep. I frequently catch myself thinking "oh I'll just do that tomorrow " a phone call waking me in the middle of a nap is never answered and I fall back asleep on literally 10 seconds max. I hate talking on the phone. I finally answered my BEST friends phone call when I realized he would just keep calling back to back. I have told my boss about my fatigue and treatments and what's currently going on with them. She wanted me to explain to my co workers so maybe they would be more understanding. There are a few that have notoriously talked trash behind my back along with the charge nurse (I'm a caregiver) and telling them what's going on changed absolutely nothing. They don't care. They don't care to understand either. I hated telling them because I felt like I was telling a sob story looking for sympathy from those trash talkers😡.  The few coworkers that are friendly with me still don't understand the full extent because they were shocked that I was yawning while on 40mg of Ritalin. One coworker said she had taken Adderall before recreationally and there is no way on 20mg she wouldn't have been energetic. I had told her I was prescribed Adderall prior to the Ritalin and might as well have been swallowing M&Ms for all the good it did me. 

Hi Megan, 

I know what you mean about waking up from naps. They are a killer. I really enjoy my evenings the most and look forward to the nights that I DO NOT have to get up early. I almost feel normal in the evening, and then the morning arrives. I'm sorry that your co workers do not understand. I've stopped telling most people about my illness and usually find myself making up white lies about why I'm not feeling well. 

I tried Adderall and it didn't work for me at all. I felt like I was going to jump out of my skin, but was till exhausted. I'm glad that Ritalin helps some for you. I know others who have managed to keep going on it. KPD

Bettybetter--Did you mean Mark Williams for the mindfulness videos?

Yes! Thanks for noticing. Foggy brain

Hiya. 

How are you doing? Iv always wanted to do yoga but havent the confidence to join a class. I will look online to what you said to take a look at :-)

Im currently having cbt , in my opinion its not doing anything for me , but still keeping at it. Take care xx