Cognitive symptoms??

Lisa--This is such a hard illness to deal with, especially with other responsibilities such as children to take care of. Right up front, I want to say that since you've been recently diagnosed, and since you're so young, there's every chance you will get better. From my experience, the best way to do this is to get plenty of rest and, especially, don't push beyond your energy envelope. You want to avoid the push/crash cycle, because this can perhaps lessen chances for a recovery. The cognitive issues you mention are very common with ME/CFS, so I think you can put the brain tumor worry aside. I sometimes can't get words out right and can even have trouble writing. I also have short-term memory loss. My main symptoms are crushing fatigue and post-exertiomal malaise (fatigue after every type of mental or physical activity). My sleep is terrible, and I wake up feeling drugged. I can't sit, stand, or walk for more than a few minutes, and have nerve-related issues, like burning and tingling in feet and legs. I cope by resting, focusing on what I can do and not on stuff that I can no longer do, meditating daily, and enjoying more sedentary activities like reading, listening to music, watching movies, and getting on the Internet. By the way, especially if you're in the UK, beware of doctors who recommend graded exercise and cognitive behavioral therapy (CBT) as cures for ME/CFS. Exercise can make you worse, as it did me, even though I took it slowly.

Hello,

3 little boys! I really feel for you. I'm 39 and have had cfs for 4 years now. My main consistent symptoms are fatigue and brain fog. I get other random things but they seem to come and go. It's so difficult to live with and I don't have children. You deserve a medal.

I think everyone has to find their own path with CFS. What I mean by that is what works for one of us may not help someone else. It's taken me a long time to find my own path and I'm now starting to see some improvement. Tonight I realised at 9pm it was the first time I'd thought I'm tired. Usually I'm thinking this non stop. The biggest change for me seems to have happened once I stopped fighting it and stopped thinking I had to do things. I have taken sick leave from a very demanding job and won't go back until I'm feeling myself. If this doesn't happen, I'll leave and this will mean I'll have to go bankrupt. I'm just accepting this is what's going on and not fighting it. Another huge thing for me was realising that I didn't rest. I thought I did it all the time but in reality I was always doing something (watching TV, social media, knitting... worrying). Once I realised this and started to make sure I rested during my day (always at least once doing yoga nidra) I have started to see some really positive changes. I still have awful days and I've not felt completely me yet but I can feel change. I have noticed a huge change in my cognitive function which has felt wonderful. My brain doesn't feel like it's in treacle.

I know what I've done would be difficult with 3 young children but my advice would to get as much help as you can. What would happen if you had to go into hospital or something? Maybe arrange life for a short time as though that's what's going on?

Wishing you lots of luck and healing.

Boy it's tough enough with 3 little ones let alone be I'll on top of it. I agree everyone has to find what works for them. First you need to write everything down. Calendars day planners write it down. Because we forget everything. It's important to rest at every moment you can. I did lots of crafts with the kids, reading alot of stationary projects. My husband did more of the bike riding parks stuff like that. Watch the crash and burn. When you have a decent day and go like a bat out hell and then can't move for a week. Boundaries and schedules are important. Going to bed at a certain time everyday. Getting up at a certain time. Tough with kids though. Hire someone to do the major cleaning once a week. It's cheap help and so worth it. Give the kids little jobs to do. They like the responsibility. Lots of containers everywhere. When you brain isn't working you have to be organized. We had posted notes all over the house. A checklist on the back of the front door. For cooking a crock pot helps alot. I don't know what your help situation. Your going to have to learn how to say no and not be eaten up with quilt. Please please don't be hard yourself. I repeat that in my post. It's too hard on everyone else. The sooner you and your loved ones accept this the easier it is on everyone. You have to ask for help at times. Humbling illness it is!! And talk about it. Eat healthy and rest. Swimming feels good. That's something you can do with the kids. This is really hard your not alone. After all these years I don't feel quilty anymore. My girls turned out wonderful. My marriage survived. I'm still here. Be hopeful. Oh and tell people you have brain inflammatory disease not CFS because that's what it is. Sick of the deer in the headlights look. Or " oh your just tired". I want to b***h slap them. A day at a time. Hang in there your tougher then you think.

Oh boy, do I share your frustration. I too, have been recently diagnosed, and I’m on a mission to learn all the things I can about the disease and the coping tools. You have to rest regardless of what the house looks like, or whether or not you can successfully cook meals. Give yourself permission to take it easy. If I were in your shoes, I’d take a pillow and blanket to where your kids are playing so that you cAn remain involved in their activities. The “brain fog” is just another symptom of this disease. I try to combat  this by giving my brain recall tests. 

You wanted to know other people’s symptoms. Well, I have crushing fatigue, very sensitive skin and nerve pain. I cannot wear a bra or any clothes that are heavy. Coconut oil is my friend, with peppermint oil. My doctor gave me Lyrica which helps. It’s difficult to make decisions and remembering short term things are hard. Depression got the best of me and sleep problems are troublesome. Belsomra and Trazadone help, but not always. I hurt and ache all over. 

The hardest thing for me right. Ow is acceptance. I’m still in denial and when I do have a little energy, I blow it by doing too much. I know that’s not good for me, but I don’t listen to my body. I was just diagnosed last week. I look fine, but feel awful. That’s a hard thing for people to understand. Makes them think it’s all in my head. 

Alter your activities and focus on ways you can meet the needs of your children. Modify your activity level. I have to take naps in the morning. Just give yourself permission to take care of yourself. I start dinner in the mornings because I know that the later it gets in the day, I’m not as capable of doing what I want or need. Hope this helps and God bless!

I fought the condition for many years trying to soldier on. Eventually I gave in, started pacing and now lead an almost normal life, although every day is a pacing day. 

Unless you get a lot of help I don't think you will kick this. I thought I could still work but if truth be told, the answer was no. Can you get the kids father, grand parents, friends etc to help more. If you can get a lot of help for say 6-9 months then I reckon with the right pacing you can start to do more and feel like you are on the road to recovery

Best of luck 

Thanks so much for all your comments. I will def take on board your advice as this is all new to me and so really appreciate you taking your time to give me your advice and supports xx

Hi girl...well if u a believer in Jesus sadly its probably the devil attacking ure health ....or bad dreams i find make me feel constant fatigue n ppl who feed off u and dont give back...i dunno sum things i learning myself..