i have been ill for 34 months now, anyone any tips or suggestions?
Wow, thats awful. I'm at 28 months and unable to work or do much of anything else. Have you got an understanding doctor?
gosh im at 11 months and had enough of it ! how are you feeling ? have you got a bit better then relapsed ? are you sleeping ? did the drs say why its taking so long ....i mean a year is too long with this but 3 years !
i been sick for 16 month and have swollen lymph nodes in both sides of my neck and the back side too and dry mouth for 7 month now but my test only show past infections of ebv. i already test for everything but all normal so i dont know what happen to my body. totally lost now.
most of the tests show past infection that is normal. doesnt mean its gone. i have been tested twice in 11 months ... both times about the same .
have you been sick that whole time ? did you get better and relapse ? how are you coping ? im mentally and emotionally spent!
Hi Lob / Sarah / Deadmeet / Lori,
I know for sure that words can't describe how awful it is to go through this virus, and to be suffering for as long as you guys have been going through I can only imagine how tough and discouraging and physically, mentally and emotionally draining it must be.
I just want to write to offer some words of hope, to encourage you not to give up. I know it can feel so dark and hopeless when going through this for so long. I sense that each of you have been pushed to the limit with this thing and that God is saying just hang in there because things are going to change - even though it's been such a long time, a breakthrough is not far away for the four of you and just to stand strong and ask / keep asking God for help and He is going to come through for you.
In terms of tips, definitely vitamins and herbs helped me a lot during recovery. Taking a good strong multi-vitamin per day (I take Immunace Extra here in the UK), higher doses of Vitamin C (1000mg-3000mg per day), a B100 complex vitamin and / or Co-enzyme Q10 (GREAT for nervous system and energy levels) and immune boosting herbs like siberian ginseng / echinacea / oregano. Of course always check for any interactions with other conditions / medications before starting any herbs / supplements, I'm no expert just going on things that have helped me from my own knowledge and understanding.
Bowen Therapy is another thing I've found helpful over the years, I initially had it for sciatica and it worked wonders but it can helped with a range of aches, pains, fatigue, conditions -it's a very natural, safe alternative therapy, I've found it a marvellous thing and would highly recommend it if you can find someone good that practices it locally.
And of course just listening to your body and resting when you need to but also still trying to do things you enjoy that don't take lots of energy too - still see friends, if you can get out for short walks / fresh air when feeling okay, but just do these things without putting pressure on yourself and get plenty of rest before and after it.
And definitely holding onto hold - praying to God and asking others to pray for you - God is the great healer and hears and answers prayers.
Thinking about you and remember don't give up - and not giving up doesn't mean to say you have to be in the face of it doing loads of things pushing through all the time - sometimes it just means being wise, stepping back, resting, just being kind to yourself and trusting in God.
Craig
immunologist is pretty kind, but they arent able to help or even imagine how severe my problems are. I am at Uni right now, but Im not able to attend any lectures, I just go to mandatory classes. Im afraid this hinders my recovery.
Im better than in the beggining, but im not sure if i had any real improvement in a year. it seems like Im relapsing almost every other day.
are you resting enough ? thats such a long time i feel so bad for you ...at 11 months ive completely had it !
yes ive been to 6 drs ...nothing they can do
thank you craig . yes we are all suffering so badly its hard to explain . myself am going through the worst relapse please GOD it gets better from here .
No Im not really. The thing is at the beginning I was pushing through since I sidnt know whats going on, then I was going to doctors for like 4 months, again hindering my recovery. Then they told me its over and I broke up with my gf so I started socializing even though I felt like shit. Then A year after beginning I tried to go to uni and agajn didnt really rest for 3-4 months. During that time I booked some trips abroad since My mindset was : if im going to uni Im gonna be hanginout as well. So I went to israel and bulgaria. Then I realized that maybe even just activiyu through the day makes it worse. I tried to resto more but was struggling to change patterns. This realization was about 3 months before next year of uni ( the last one I had to drop out). However I again pushed and went to a festival at the end of summer because I hated missing everything I loved. Then moved over 1500 km away from home to uni, have to tske care of shopping food laundry and uni. So didnt really have a proper time to rest. Thr thing is, right now I kinda have drive to go out and Im not really that tired, however one of 2 scenarios will happen if i go: 1 either I get tired almost instantly uppn any activity or 2 I dont and can pull of lifr normally but then I crash if its more then 2-3 hours. On wednesday I was playing a gig ( im in a band) and I felt completely normal and full of energy, but the next night I couldnt sleep and crashed badly, even though at the gig I did not feel like pushing through or resting at all.
Also Im not attending any lectures because I dont have energy, I just go to mandatory labs. Cooking shopping is really difficult and I hardly can pull it off with careful planning and insane discipline
i too was not diagnosed until 5 months into this so like you i pushed it working out 2 hours a day . i stopped once diagnosed . you really have been doing too much so you wont get better. i have more or less been doing the minimum for 5 months a few errands a short walk . i have just relapsed 3 weeks ago i was doing better not great but did too much in one day and bam ! its back worse than ever . you may need to take a break from school and just focus on getting better i understand that you are young and want to live life but you will be able to do that once you are better, youve got many years of health and travel in the future so rest up !
i have 1 month of school left, so im gonna finish and rest after. I dont want to miss another year, as this would just put a lot of stress on me and I cant stand wasting time doing nothing. and my stupid parents and doctors always advised to try pushing through. well I was young and stupid, not gonna give a fck what others think anymore
well if you can do it . why would they say 'push through ' when with this illness you need to rest
Hoping Lob that you can get some restful time when the month of school finishes. I still think you're being way too hard on yourself in terms of you saying that you did too much and pushed through too much - it's something virtually EVERYONE does with the virus in the initial stages - it doesn't mean to say you won't get better Lob, and remember it's not your or anyone's fault it's just a horrible horrible virus - you haven't done anything wrong.
It is normal that you would find it hard the day or period after playing a gig - it is a real achievement you managed to do that and definitely a good sign for sure a step forward - with further time just hoping and praying and believing that your body resilience will return and you will be able to do these things without suffering for it afterwards.
Hang in there Lob, thinking about you and still believing that MUCH better times lie ahead and that a real positive change is happening for you...
Craig
Oh Lori just hoping so much this can be a better weekend and week ahead for you....just take care of yourself and here's a wee thing I have been using recently from a Mindfulness group. When in moments of panic and fear and feeling overwhelmed...STOP
S - Stop for a moment T - Take a step back and breathe, take as long as you need to gather yourself O - Observe things and the situation you're in, tell yourself 'it's okay, I'm okay' P - Proceed, only when feeling better, remembering that this tough moment / phase will pass
Just a wee thing I've been trying to remember / use when not feeling so good.
Craig
because at the time I was already supposed to be recovered