Help

Gosh 4 children and one with special needs ... I take my hat off to you I don’t know how you do it !! And completing 2 courses???

I don’t get moving until 2pm and literally just make it to buy food and back home . Maybe a short walk if I’m feeling adventurous . 

I’m having a terrible day but now a pretty good evening so much so I could have gone out tonight .... but thanks for reminding me that although we feel good ... we shouldn’t push it . 

It’s such a weird illness I cannot figure it out it makes no sense at all ... and for me I need to I understand things 😩

I’ll NEVER forget this time EVER it’s the weirdest most ill I’ve ever felt .

Hi Lori,

Thankyou. I think I try to abide by the "keep calm and carry on " don't always get there though!

My pattern currently is bed at midnight ish, wake a couple of times for the loo and sometimes wait for sleep to return, and up about 7. Not because I want/need to but because of the school run. I'm also dozing off a couple of times in the day. I've been having feroglobin recently to see if that helps and it does but isn't a cure. I'm currently having an in house weekend where I do less and rest more as I need to right now as feel I've done too much recently.

Re: the courses. Both were in an evening and at that point in my life,I was able to rest alot in the day which helped but, again not a cure for symptoms! I feel it was much harder than I'd anticipated but, was glad I did it. I wanted to be a teacher before all this and needed maths so, decided to try see how far I could get. Sometimes we have to try to find out and I felt quite ill with it but was determined. I made sure my tutors knew from the offset that I was seeing how far I could get and that there was a chance I may not complete the course and they were cool with that. Sometimes my head wasn't engaged with it and I wondered if was such a good idea but, this was something for me and the struggle "seemed" worth it.

It is such a weird condition you're right! And symptoms shift and change in what seems random ways to me. Little things can throw things out of sync and I really wish I could manage a better time table so I could rest and pace more usefully at times.

Beverley

Yes, I'm from the US, where health care is kinda a  mess. I have no idea what the protocol is. I can barely make my doctor take me seriously so that I can find out.

I don't think I'll be able to study from home, my state has strict attendance laws and if I want to work from home, I'm probably going to have to be homeschooled or work with an online school program.

I'm glad to hear that your daughter's friend was able to do college. That makes me very hopeful. Did she do her courses online or was she able to actually attend a university?

Next time I see my doctor, I plan to discuss a whole lot with her and put my foot down and say "ENOUGH HELP ME." I plan to email all of my teachers from school and explain what's going on in a more detailed way so that they can understand what's happening to me. I'm allowed more time to hang in assignments, but sometimes it's still not enough. Problem is, they need letters from doctors in order to provide me with extra support and getting letters from doctors is sometimes impossible when none of them take you seriously. It's great that you have been able to complete those courses, I'm so proud! I know how hard it is to get work done when you feel so poorly. Always remember to listen to your body and only do what you can. I have a hard time doing that, but I'm trying to be better about it. My heart goes out to you and your children.

One day at a time <3

I know once I got  my blood test confirming Epstein Barr mono cfs I can now be taken seriously and referred to the right doctors !

I take them to every appointment so once you get a proper diagnosis you can start calling the shots !

Not saying they can cure you as there is no real cure apart from diet rest etc . 

But at least they aren’t looking at you like you’re crazy as once it’s on paper they take you seriously plus have sympathy for you .,

The fact that you can stay up until midnight is a big deal so you must be getting better! 

You seem like a very calm and collected person and I do admire that .

I’m a bag  of nerves and so much anxiety due to this and due to also spending days and weeks alone .... not good for the mind .

I manage to just get through the day doing a few basic things this is definitely not a fun zone .

Hi. I'm in the US, also. I'm having an awful time getting diagnosed, too. Seems doctors here think this is all in our heads.

I also homeschool our children. Homeschooling shouldn't be a problem for you. You just need to contact your superintendent of schools.

I really feel for you. You aren't alone.

Aw thankyou Emma,

It is hard when you don't feel heard. I wasn't refered until 18 months after symptoms began. It was a friend getting refered that made me wonder if that's what I had. I have a good doctor but he was putting it down to my body recovering. Look up the symptoms of cfs/me and print them out. Highlight the sypmtoms you have and tell them you'd like a referral to a cfs/me services which may be infectious diseases.

I hope you get the support you need from school to study at home.

Yes, one day at a time!

Beverley

Hi Lori,

Not sure it means I'm getting better because I can stay up till midnight, think things change with this condition and right now my walking is really bad.

I try to keep calm but, sometimes it's not that easy! I'm getting better with myself though.

It definately isn't a fun zone no!

I think so Beverley ! Yes I walk around the house like a zombie ... wash a dish then have to lie back down .

Yes it’s all up and down .. I was doing better July and August managed to have a bit of a life ... hopefully I’m going into post viral .

I stopped working out and seem to be worse 😩

Sometimes it's hard to know what to do that won't trigger a payback response. I tried to do some swimming a few months ago. I didn't do it for too long and rested inbetween. I was floored for 10 days and had an appointment with a senior physio a couple of weeks later who explained that swimming was too much right now and that i oughta just try walking a little in the water which I haven't tried yet.

Zombie like is a good description. I often feel like that and sleep doesn't seem to make a difference.

Has the weather affected you in anyway? For some the hot weather makes people worse, others the cold has an affect.

Beverley

I did a trip to see a very special dr 5 hours there 5 hours back but stayed overnight it took me 2 weeks to get over it ! I slept so well in the hotel but still I was exhausted .

This is ridiculous !! What we’re having to go through !! I just don’t understand it and it’s like we’ve been abducted by aliens . And the length of time it takes .... the ups and downs !!

I see now that I was doing well for a while there then plummeted again. At the time though didn’t know  I had EBV so maybe some of it is psychological . 

Hi Lori,

I think that this condition is very changeable and in my case I wasn't aware I had cfs/me and went to the gym, swimming, yoga and pilates. I felt awful anyway was how I felt about it. I'd be mega spaced out and shakey and took it as easy as I could in my eyes and was exhausted. I wasn't aware I may be doing myself wrong.

I found public transport hard and got used to having to lay down across seats. I ended up having to cut back on everything. When out, I would slur, stagger and fall into things and this was a bit embarrassing as I felt people would you like think I was drunk! At present, I don't feel like people think I'm drunk but, my walking is bad and I aren't going out as much (my partner and I split up, we didn't live together and he wanted me to go over there more than him to mine) I try not to do things even when I'm feeling less ill but, that's the tough bit.

Sometimes i have to cancel meeting people or attending appointments at the last minute, something I really didn't do before. I'm less hard on myself about it than I was but still is frustrating. I have a wheel chair for really bad days where I have to go out though which was a tough choice but, my doctor agreed it was a good idea.

It takes patience with this condition and as most of us were busy and active people before onset, alot of adjustment. For me the odd cry too!

Be gentle on yourself and see it as temporary. I do even though I've had it a while. Also, ask for help when you need it. I found it hard to ask initially but, again are less hard on myself now. I also have a cleaner that comes once a week now which helps.

Beverley

I was tested for mono all the time when I was little. Due to fatigue. Like I said in my original post, it's almost like a virus slowly grew inside of me until now, where the virus has fully settled and I have mild/severe CFS. I think it could be a genetic thing becasue the fatigue started when I was only around eight or nine. I couldn't play in the schoolyard like the other kids becasue I was "tired and weak." No one is my family is like thi though, so I was no clue why I'm fatigued. I've additionally harmed by body in the past with anorexia and eating disorders. My hormones are out of whack too, I haven't had a real period in 3 years from my eating disorder, which I've recovered from and am actually overweight now. I've been to doctors about it, but all they can do is give me birth control, which makes me have bad chronic vomiting

My illness is a puzzle that I am hoping to fit together, with or without the help of doctors.

I still think a sleep study is a good idea just to be sure it's not sleep apnea. If it is, at least I have some sort of idea of what's going on with me and know possible treatments.

No, I am not on any meds, besides vitamins, mainly vitamin D, My body does not do well with meds. I always get really bad side effects and it sucks lol.

I'm so glad you've gotten better!!!!! I hope I can too!! I eat pretty healthy and try to do small amounts of activity but it doesn't help. In fact, if I take a 10 minute walk sometimes, I feel like I need to be in bed for another few days. Which isn't useful becasue I really need to lose weight becasue I have PCOS, among other hormonal stuff that losing weight would help, but it's not really possible with this sort of fatigue. It's hard to pace yourself too with school because you have to abide by their schedule, not your own. Waking up at 6 am is killing me. Probably not going to school very much this week, if at all.

I think diet plays a big part in healing I have cut out dairy and although I always ate healthy they say a diet full of fruits and vegetables is the best ... this is really all I ate anyway so go figure .

But cutting out the milk and eggs hopefully I will see a change . 

This illness also disturbs your sleep I wake up several times during the night and often even though tired wake up too early . I used to be a relaxed person who could sleep until 10.30 boy how I miss those days 😫

Now I wake up wired but tired ... 

I have cut out dairy and most foods with gluten, and that has helped my nausea and IBS, but not the fatigue unfortunately. I could probably try to eat more fruit and vegetables though lol

I wake up a lot too, and I generally feel like I never get proper deep sleep becasue I'm always waking up. I'm not sure if that's from sleep apnea or what other sleep disorders would describe not being able to get proper deep sleep, I have no idea how that could be treated either. Sigh. Maybe my fatigue does have a cause that my doctors could fine, but I wouldn't bet my life on it. 

And same, even when I don't sleep well or much at all, I wake up far too early and can't seem to go back to bed.

That’s so much like me ... it’s the virus it has you on edge all the time ! The only time I’m relaxed is at night when I’ve had a glass of wine some chocolate marijuana and a melatonin .... knocks me out but I wake up through the night . It’s awful .  Not giving up a glass of wine though ! 

Pacing is a big deal. I screwed up today. Helped my daughter decorate for Halloween. Had been feeling good for about a week. Thought that I could do this. Haven't felt this bad in a long time. I knew better.

So, like I said earlier... Listen to your body.

It's easy to over do, when you are feeling better. Just don't do it. I'm going to be paying for this and now ticked off at myself. But, the house looks nice for the grandchildren 😉

I know but ... you gotta have some kind of life !  I’ve been nowhere apart from a few local stores in 3 weeks and tonight did an ‘early’ dinner with a friend . I was tired but it was nice to talk to another human !