Be aware of Monolaurin supplement !

yes im wondering too about all these supplements im taking ... spending a fortune . im in usa but keep us updated on what they say .

thanks dodge. Which channel was it on? I will watch it on catch up over the weekend.

I too have concerns abt all these supplements but when you are sick and desperate you will take anything.

It was on BBC 2. I should of taken an energy supplement as I fell asleep half way through 😃 so I'll have to watch it again. From what I did see, they advised that vitamin A, B, and C is suffificient from the diets we are eating. If you're on a strict healthy diet such as vegetables and fruit only, then you run the risk of having low iron levels. What everyone does struggle with though is low vitamin d levels, especially if you live In the uk, due to the poor sunshine levels in the winter. They said something about misleading advertising on supplements and they can get away with it as they are considered food and not medicine. One example was iron pills contribute to the reduction of fatigue and tiredness. This is not true unless you do have low iron levels, so if your iron levels are fine then they will not make you feel less tired and it will be something else that is making you tired. It got me thinking that the energy supplements are making me wired, as I don't actually need them...oh who knows. I'll watch the rest tonight and see what the conclusion is.

Thanks for the info about that show Dodge, maybe worth a watch but I'm feeling pretty low just now even worried watching something like that will cause me more worry - sounds silly I know just the kind of week I've had has been rough. Hope you are doing okay Dodge.

Craig

Hi dodge. I wrote a long reply on the train this morning but pressed the wrong button and it got erased. I will try and see if I can remember what I wrote...

I will watch the documentary tomorrow on the iplayer and report back.

I have taken so many supplements over the past year that revital, holland and barrett and amazon have made a fortune out of me.

In the early days of this sickness, I didn't feel any of these supplements were helping but I continued to take them out of desperation. Now 14 months on, I feel I am getting some good results from some of them but it might be the placebo effect.

How are you finding d-ribose? I only discovered it about a week ago and I feel it is helping somewhat. For the first 4 days on it I felt more energetic and the sleep had improved. Then I felt I had a crash for 3 days and today I don't feel too bad. How often are you taking it? On mine it says to take 1tsp once a day, however in revital they advised me to take 1tsp 3 times a day which is what I have been doing.

If you are feeling wired by supplements, best not to take them close to bedtime. When I started on supplements just over a year ago, my acupuncturist suggested I don't take B complex, fish oil with coq10 in the evening as they are known to make you wired.

Hi Craig,

sorry to hear that you are feeling abit low today. Sending you lots of love and happy thoughts. Look on the bright side - the weekend is here 😃

yes i try not to watch anything about food and health right now just lighthearted shows ... we dont need anymore stress or worry

I'm sorry to hear that Craig. I hope you are feeling much better. You have been really supportive on here, so I really wish you well. I've re-watched the programme and it's not great news. It's something my doctor told me that there is no science behind any of it and they have also said some of them do more harm than good and much more regulation is needed on them. Anyway just one programme...I've decided to stop taking most of them a while ago as I felt no different or they stopped me from sleeping well...which was a major decider as if I couldn't sleep it normally ment my next day was terrible. I wasted my money on d-ribose as I have a big bag of powder of it and only took it for a few days.

im taking the d ribose too but you felt it made you hyper ? i know the b12 can do that too so i only take a small amount .

Thanks so much Kay,

Has been a terrible few days, have been feeling terrible it's just this horrible sciatica type pain down my leg and thinking it could be coming from this cyst pressing on something is really making me panic and feel overwhelmed. I have been praying to God just trusting He is with us all right now and will pull us through.

Hoping for a much more settled weekend for you too Kay, hang in there and sending love and prayers for healing for you also.

Craig

Definitely Lori I agree when fragile just don't want to risk anything else upsetting me more, sounds silly I know.

Thanks for the kind and supportive words Dodge, I really appreciate and do hope that you are feeling much better soon too. It's been an awful time for all of us on the site and I wish you well too and pray that God's healing touch can come into this forum today and touch everyone who has posted and tried to support each other as best as possible in trying circumstances.

I'm sorry to hear that the tv programme didn't give much hope or encouragement, I do hope that God can guide us all in our diet and supplement we take / don't take right now. Hang in there Dodge and still believing in my heart that you are going to get better thanks to Jesus.

Craig

Hi dodge, I was unable to find that programme on the iplayer?

How did it go today Craig? Hope it all went well. I am having an ok day - no fatigued muscles today and my floaters seems to have settled down. Have a minor lower back ache though but stretching helps. Also managed about 7 - 7.5 hours sleep lastnight.

thats great kay ! so glad youre having a good day ....we relish those like nobody else. dont overdo it and hopefully many more 'good days' to come !!!

Yeah I noticed when you type it in the search part, it shows as 'Horizon'

Thanks lori. Indeed i hope it continues. I will aim to have early nights all of this week and hope that will help.

Hope you are feeling fabulous.

So they have taken it off already?

Maybe it was a repeat.

i wish! not felt fabulous in a long time ... have had a few 'ok' days but mostly awful ones.... cant wait for this to be OVER !!!!

Hang in there lori. Once upon a time they use to all be awful so at least we are improving 😉

my worse months have been the 5th 6th and going into the 7th it appears ... hopefully this bloody virus is goning dormant soon . it is such a slow recovery ....mostly every day is the same . cant stand it !

Hi Kay,

That was good to hear yesterday was a more settled day for you, definitely hoping that can continue over the coming days and still believing you are going to get fully well again Kay!

Thanks for asking how I got on Kay, things still quite unsettling at the moment as consultant suggested I see another consultant to have a look at the cyst and see what he suggests regarding options, the thought of surgery worries me and the thought of not getting it dealt with either also worries me, just need to try and not dwell on it and just see what the docs say and hoping and praying they can give me the right advice / treatment and that God won't allow any harm to come to me and that this situation can be resolved quickly and smoothly thanks to the Lord.

Hoping you had a good sleep last night Kay and your back is a bit better today.

Craig

Oh I do hope this can be a better month for you Lori, and for us all! Still thinking about you and keeping you in my prayers and trusting that God has a great plan for your life and is just working out all the details of your recovery before it comes into full manifestation in your life and circumstances.

Craig

Hi Craig,

Pls rest assured you will be fine. You are in the best hands. Positive thinking - remember 😃

Today I am not feeling too bad. Had about 8 hours total sleep lastnight. Still could have use a day off though but alas, I had to come to the office.

thank you Craig! the last 2 months have been the worst and yes! hope i recover soon ... it is just taking so long ... its a really stubborn horrible virus . i hope GOD has a special plan for me ... im so ready to feel good again .

can still see it on BBC iPlayer. if you type horizon in the search and it's episode 11. says it's available for another 24 days 😃

thanks dodge. will have a look later.

Thanks Kay,

Grateful for your words as always, was a bit more settled yesterday but just needing to take things one day at a time right now and not look far ahead. As you say just need to do our best to think positive and keep perspective, even though it's easier said than done when in the midst of a trial and I know you know that as much as anyone!

Glad that you got a good sleep Kay - and remember things ARE going to get better for you over time, remember recovery with this thing is often a process and not just an overnight thing. Hoping and praying by the time the spring comes round again that you are feeling much better physically and mentally, praying for that most definitely. Thinking of you today Kay hugs!

Craig

Oh Lori I do believe God has a special plan for your life. He tell us that He has plans for a good future for us, and it's hard to see that often when in the midst of terrible trials. I guess in these moments it's important that we remember His words too not to lean on our own understanding about things, but to trust that God knows the bigger picture and is a good God and working things out for our good.

Hoping you are feeling settled today Lori, thinking about you still and hugs too!

Craig

Thanks again for this info about the Horizon show Dodge, that is much appreciated.

Thanks very much Craig. Glad to hear yday was a better day for you. Wishing you plenty more to come.

My sleep could have been better lastnight. I has a few solid hours then woke up and dozed in and out for a while so was abit restless in the latter part. As a result I am feeling abit drained today. Not as bad as I did last week though.

Sending you lots of hugs too.

Yes you are right, recovery is very slow. Trust me though, you are improving - as you said you are having some ok days. I didn't have an ok day for the first 9 or 10 mos.

thank you kay . yes yesterday was just awful literally shaking all day . heading into month 7 now . hopefully today is better. i so wish i just woke up one day and poof its gone .. instead of this up and down rollercoaster.

thank you craig ! yes i had a horrible day yesterday praying today is better . i hope you are finding things a bit easier too today.

ill be so glad to say goodbye to 2018 .... ill never forget this year!

Thanks for the best wishes and hugs Kay, sending many back to you too! Oh I do hope that you can find a settled and regular sleep pattern soon, I can only imagine it must be so frustrating and draining and unsettling - I believe it's going to come Kay just remember don't put any pressure on yourself and listen to your body, I know you're doing all that though!

Yeah I'm still quite up and down like waves at the moment, friends and family have been helping me a lot Kay. I met with minister yesterday and he prayed for me and spoke kind words to me and talked to me about Steps to Freedom in Christ, which is seven steps to be set free through Christ, that he is going to help me work on.

Hoping and praying for wisdom and strength and peace for you today and always Kay.

Craig

I agree so much Lori this has been a tough year for most of us on the site I think, praying that God can bring many blessings and restore and build you and each one of us up again and that God willing next year can be a year of recovery, hope and peace for us all!

Just remember it's okay to take a step back and just go slow, rest, breathe deeply and of course ask God for help when feeling overwhelmed. I know you have been suffering Lori, I just pray for a much better and more peaceful day for you today - hoping you can manage a visit to the beach today and sometimes even just being by nature and breathing in the sea air can be liberating and give some relief. Don't think far ahead Lori, just cope with the here and now and remember that God is looking after the bigger picture and will see you through this - I do believe that He will and that He doesn't want you to worry but just remember He is in control and will bring the victory.

Craig

I feel your pain lori. I too wish for the same. I promise I will appreciate the little things in life more. It's amazing how many things I took for granted over the years.

Thanks very much Craig. Sleep was actually not too bad last night. Was in bed by about 8:30am. Woke up early as usual but felt rested. I just need to get through this long work day and all will be fine. I am getting there, though slowly.

Craig and lori,

I feel like the d-ribose and the medical marijuana are helping somewhat. 2 weeks now on the d-ribose and 1.5 weeks on the other one.

yes getting sleep makes all the difference however sometimes no matter how much sleep you get youre still feeling unwell and tired

oh yes ... me too ! not sure what my life will be like once this is over as i dont have a plan for my future .... recently divorced so its a lot of stress but first things first and thats getting better !

thats great advice craig just one day at a time or right now one hour at a time . and yes just a short walk at the beach really helps ... the sea air the waves relaxes you and im so lucky that i live only 5 mins from the ocean .sometimes i can do the walk sometimes just too fatigued so just sit for a while there.

yes tough tough year hope 2019 will be better for us all as we have suffered so much .

Yes mos ago no matter how much I slept it didn't make a difference. In fact sometimes I use to feel more tired when I woke up.

Sorry to hear abt your divorce. I am sure you will get a new lease for life once this is over.

I've delayed pregnancy as a result of this illness. Though I have improved alot and the doctor has given the go ahead, still I feel messed up.

yes id wait until youve been fully well for some months but that is so exciting ! and something to really look forward to. i have no life plans right now .... am just living hour by hour . and thats ok for now ....we have no idea what the future will bring....during this time everything seems dark but we have no idea what the future will hold for us...it quite possibly could be fabulous !

yes, let's hope there will be lots of fabulousness in our future.

For me the worry is I just turned 39 years old so I don't have all the time in the world.

oh youve got loads of time im 52!! argh!!

Hi Kay,

Hope that you manage to get through long day today and that can you have some time and space to recover over the weekend. You're so right that we take things for granted when everything going well, even when things not been going so well for me still not been good at being grateful for what I have and need to be better at this rather than moaning all the time.

Hoping for a good and settled weekend for you Kay and you can get a good long sleep tonight.

Craig

Hey Lori,

Definitely it's all we can do is take things one hour one day at a time. It's these situations that make us realise that it's God who blesses all the good times and that we need Him for everything in our lives and in every moment.

I still believe there is going to be lots for you to look forward to in the future Lori. I know that might be hard to see right now with everything that's been going on for you, just when everything hits at once it can be so overwhelming I know. But remember God has great and good plans ahead for us!

Craig

My sister is 40 Kay and been going through a tough time with miscarriages and IVF etc this last year or two. I do hope and pray for your situation with this Kay, and just remember look after yourself and your health right now and just hoping God can bless the outcome and the longer term and our futures.

Craig

I hope you are right lori on me having loads of time and I haven't left it too late.

Thanks Craig. Thanks for your msg. I must admit I have had better days but that is purely because the sleep was not that great lastnight. I went to bed early again but woke up about 2am and barely slept since so have that groggy lack of sleep feeling today.

Will definitely catch up on rest this weekend. It's becoming to feel like that is all I do these days, rest the weekend away. Where did my social life go?

Thanks Craig. I do hope my dreams will come through in due course. The past year and a half has been a complete nightmare. I had plans to have a baby this year but the way this illness was going, it was the furthest thing from my mind. Then it dawned on me that I started having this illness at 37/almost 38 and now I am 39 years old. Where did the time go? Am I suppose to stop living and give up on everything? Absolutely not.

Sorry to hear about your sister's situation. I wish her all the best on this journey as I know it must be a difficult one. I will keep her in my prayers.

your sleep pattern will normalize once the virus calms down . i too wake up through the night but now im able to fall back asleep . and yes the rest part is getting boring !

Hi Kay,

Thanks for the kind words for my sister too, I know badly that affected her too and it must be such a hard thing to go through.

Definitely don't give up Kay just hoping that things can all work out in the longer term for the best and that you are able to relax tonight and get a much better sleep!

Craig

That's good to hear Kay that these have been helping you. I know there has been a lot of stuff in the news lately about the medical marijuana thing, it seems sensible for sure that they are now going to consider that for people who it can really help. I do hope that these things can continue to help and make a difference!

Craig

oh i certainly hope so ... its been so so tough and horrible ... just want some peace of mind .

Thanks very much Craig. I am sure it will work itself out in due course.

Thanks lori. I can't wait for this stupid virus to go away. It's definitely very testing.

Hoping for a good weekend for you Kay and Lori, still thinking about you both and rooting for you and keeping you in my thoughts and prayers each day.

Craig

thanks Craig. So far so good. Wishing you a lovely one also.

thank you craig !

me too ! this is my 2nd time in 10 years i NEVER want to go through this again! if you can hear me GOD .....

Thanks Kay and Lori, hoping things have been settled for you. My weekend has been more settled than last weekend for certain, but still at the moment just up and down so much with things just hoping God can help each of us to find a stable peace of mind with good health again. I've been thinking way too much about things and not always keeping myself busy enough and so self-focussed, really want to get away from that and be more willing to focus on helping others and doing positive things with my time.

God hears you Lori, just keep hanging in there things don't always come right away but God knows what He's doing and praying we can keep putting our trust in Him and seeking Him and that He can give us the right attitude and application to cope with each day.

Craig

Thanks Craig.

Feeling ok today - Thank God. Also had a good day on Saturday and was out and about in the morning running some errands. It seemed to have taken it's toll on me yday though as was feeling pretty rough yday so had a chilled out day mostly on the sofa.

Hope you are also keeping well. Wishing you a lovely Monday and rest of the week.

Thanks Kay,

Glad you were feeling not too bad yesterday, hoping that can continue into the rest of the week and that you are managing to get a more settled sleep pattern. Still trying to work through various circumstances right now but God has been helping me, just need to keep trusting Him and hoping and praying things can remain settled this week and beyond. I have another hospital appointment on Thursday, a bit concerned about it unsettling me but hoping everything can be okay with God's help!!

Better times are ahead for you Kay, I really still believe that and remember just take things at a pace that's good for you right now and don't let colleagues or the outside world pressurise you in overdoing things or taking on stress that you don't need right now. Wishing you a week of hope and peace!

Craig

Thanks Craig. Today is another ok day, thank God.

As slow as the progress is, I can honestly say I am seeing some progress which is a step in the right direction.

I will keep my fingers crossed for you on Thursday. I am sure you are overthinking things as we all do from time to time. You have already put your trust in God so I am sure he will bring you through.

Wishing you a lovely day.

Hope you are having a good week so far lori.

thanks kay i had a few 'ok' days but didnt sleep great last night so today is tough ... you knos how that one goes

thats great news kay and yes its so sloooowwww with ups and downs. cant wait for the day we are all better

Sorry to hear about the rough sleep lastnight. Wishing you a better one tonight.

You are getting there. Ok days are better than bad days 😃

Same here lori. I think 2019 will be our year. I have already written the rest of this year off as one to just chill out and focus on getting better. I am definitely not making any big plans for the Christmas period this year.

no me neither and i will be glad to see the back of 2018 !!! im not making any plans for xmas either!

ill NEVER forget this year!

Oh thank you Kay I do appreciate those words and yes just hoping God can help me get through that appointment tomorrow and that I can be well and settled after it without any issues to worry about.

That is really good to hear that you are slowly seeing some signs of steps in the right direction - so pleased to hear that Kay. One thing just came to me this morning about recovery and how it all goes is how much I've been trying to compare things to previous phases of recovery I've been given, sometimes expecting things to happen in a set way or at a set time, when in fact we need to remember God is in control and that our recovery path is guided by him and it is not necessarily the same route as before but it doesn't mean to say that we won't get there in the end with His help - I believe we will Kay! Sometimes my attitude has let me down a lot lately and just hoping God can help me with that too and to be more grateful and joyful in each day.

And of course just keep taking things at a steady pace and a day at a time Kay. It's so easy to get ahead of yourself and I'm guilty of this for sure. Hoping so much that things can continue to go in the right direction and wishing you a lovely day too!!

Craig

Hoping you can get a better sleep tonight Lori and of course if it helps or you are able to take a rest / nap during the day as well. That kind of thing has been helpful to me for sure I think I love my bed too much to be honest! Still thinking about you!

This time of year, the winter and Christmas can be particularly hard when going through a tough time, I know that much for sure. Last year was such a hard one for me and just hoping that God can give us the strength for this winter to be a better one for all of us, to bring warmth in our hearts to get through and see hope for the future. I just like Christmas to be a quiet time really anyway, I find it depressing the hype and how the real message and spirit of Christmas is often lost by society.

Love those words Kay that 2019 will be our year! I'm going with you on that one!

Craig

Thank you too Craig. Yes, still feeling ok today. Apart from Sunday when I felt abit low and sick, I have pretty much bn consistent for the past week or so. Long may it continue.

Yes, 2019 will be a good one for all of us.

Christmas 2017 was a tough one for me. I was about 4 mos into this illness and was at the height of my insomnia and depression trying to work out what the hell was wrong with me. I spent 2.5 weeks with my parents in Jamaica and did not enjoy one minute of it really. I was like a zombie for most of that time and getting frustrated at myself and everyone who was telling me there is nothing wrong with me. Damn, I have come a long way.

thats fabulous news kay and i hope it contines !

i had a few 'ok ' days then yesterday was like a horror story . i felt SO ILL all day shaking one of the worst ive had so far . its so confusing this virus you start to feel ok and bam ! here we go again.

yes seeing all the xmas stuff is depressing .... as we just have no date on this thing ? when will it be over we have no clue .

i managed to get some good sleep last night but i wish i could nap during the day ... before this i could but it has made me too nervous and anxious so i cant nap . i do spend a lot of time just lying resting though....it just gets old after a while .

Today I am feeling a little groggy but it is my own fault. I had a friend over lastnight who didn't leave until abt 11pm so I ended up going to sleep abt 11.30pm as opposed to my usual 9ish. It's amazing what an impact something so simple has.

Does anyone else have this issue too? It's like if I am not in bed by abt 9 - 9.30 pm I really pay for it next day.

good luck with everything today Craig. I will continue to pray for you. Let us know how things go.

All the best x

Hi Kay,

Just to have that stability and settled consistency with things for a period can make such a difference, I hope so much that this can continue Kay and as we all keep saying just take it one day at a time and don't look too far ahead and don't put pressure on yourself. You have come a long way as you say and I really believe you will continue to make progress until you feel fully well again thanks to God!

Christmas 2017 was one of my worst too, have quite tough memories from this time last year and just hoping God can keep our hearts, minds and souls at peace and in good cheer this Christmas.

Hoping for a good day for you Kay!

Craig

Oh Lori I do hope that today can be a much better day, have been thinking about you and remember things won't always be as hard as they have been right now, I know everything seems an uphill struggle right now but believe me Lori you will be through this and by this and I truly believe you are going to get over and past this horrible time in your life completely, praying for good health and happiness be restored in your life through Jesus.

Thanks Kay and Lori for best wishes for my appointment today too, feeling a bit apprehensive that it may unsettle or upset me, praying for Jesus' help with this very much so and that things can be all okay and well. Just picked up your other message Kay yes most definitely just an extra activity or something out with your normal rest / sleep / recovery routine can be unsettling when going through recovery from mono, just keep listening to your body and remember it's only a temporary blip.

Craig

Thanks very much Craig. Yes, I need to do things at my own pace and do what is right for me. You live and learn as they say. I aim to have an early night tonight and hopefully that will sort me out.

Have a great day too.

yes i make sure i go to bed early and if i am having a good day and meet a friend i make sure im home by 9pm at the very latest. with this virus its not like the later you go to bed the later you wake up ... it woke me up at 4.30am this morning !! unable to get back to sleep ! long day ahead.

Also wanted to add that you must be getting better if you cam stay up late !

I know the feeling lori. Even though I went to sleep about 11.30 lastnight, I was fully awake by about 5 and I also woke up a couple times before then and dozed on again.

When I go to bed about 9pm, I will often still wake about 2 or so times during the night and be fully awake by about 4:30/5am and even though I don't sleep anymore, I feel alot better.

haha, I am definitely improving but don't know how close I am to getting fully better. Only time will tell.

I remember I year ago I could not stay awake past about 7.30 or 8pm. I would get home from work at 7pm and it was only shower, eat and go to bed. Then I would wake up by about 10pm, go back to sleep and be fully awake anytime between 1 and 3am and not able to sleep again. I use to arrive at work at 9am (this is after being awake from about 2am most mornings) and feel like I have already done a day's work.

Sometimes now I still struggle to stay up late if I am home alone just chilling. I can stay up if I have company or if I am out. But unfortunately even if I am not doing anything extreme, it still seem to mess me up. Lastnight for instance I was home and just had a visitor, had some conversations, watched tv etc and my whole routine got messed up.

gosh that makes me feel so much better as thinking 'how the hell am i going to get through this day' . and yes i wake up too a few times but normally can doze back off to sleep .

yes i stopped taking calls at night as find if i get too stimulated i cannot sleep . glad you got to spend time with your friend and the fact that you can work with this is amazing ! routine is so important though i must stick to my 'rules' . i can just about do a few errands and a short walk ... but i know youve been going through this much longer than me.

kaymono , Thats the same roller coaster i have been on with the sleep , almost word for word what you have been saying . Its crazy to me how it messes up your sleep so bad . What a sick sickness , its almost like the perfect storm for you body to not recover from because in such a sick time we need rest and cant get quality sleep.

yes normally they say 'sleep yourself better' but with this evil thing its impossible .

don't know how long you have been sick, but i have been going through the same sleep cycle for a while. probably since march 2017. i work 12 hour shifts, so it sucks having to work with such little sleep.

I think I am going to stop taking calls at night also. It makes perfect sense.

I just want to feel 100% normal again. I've forgotten what it feels like.

It really sucks david. This illness is evil. I don't know what we did to deserve it but I have had enough now.

One of the biggest challenge I facing now is not being able to plan anything in advance as I have no idea how I will be feeling on the day. My social life is almost no existent. I am already fretting about my office Xmas party in abt 5 weeks time as it will be a late night after a long day at work.

Hi brent,

My illness started abt mid August 2017 so I am coming up to 15 mos. The sleep issue was at it worst upto abt 9 or 10 mos.

Now I still have the odd bad night but most times if I go to bed early enough I am ok.

It is hard to function with this illness in general - and it is 100 times worse when you have had a crap night sleep.

In the past 3 weeks I have been taking d-ribose and cbd and i have seen a remarkable improvement in energy, sleep and overall muscle soreness/fatigue.

15 months ! how are you still so cheery and positive ? how on earth did you get through 15months of this ???

im only at month 7 and after today such a bad day ...ive had it!

wow kaymono , YES YES AND YES again , not being able to plan in advance because you never know how your going to feel . To me thats what i cant understand and come to terms with . How one day or maybe a few days its not that bad and feel like things are improving and the next day or few days can be so horrible . What a horrible roller coaster ride we have been on . I pray for you that the day of your xmas party you feel well . Please try not to stress about it that will only make it harder .

I have no idea lori - it hasn't been easy. 9-10 mos was pure hell. After this I started seeing slight improvement. But it was 2 steps forward and 10 back each time. On top of this bear in mind I didnt get a diagnosis until 1.5 mos ago so for 13.5 mos I had no clue what was wrong with me.

And don't let me start on the depression - last year this time I was seeing a therapist.

thanks david. It really is reassuring knowing i am not the only one feeling like this. For over a year before getting an actual diagnosis I was lead to believe it's all in my head. This thing is horrible.

I will follow your advice and not stress abt the party.

This thing has made me such a nervous wreck.

Hi Kay / Lori / Brent / David,

Oh it is so frustrating when you feel like you can't plan ahead because you don't know how you are going to feel from day to day. It's hard for others to understand this I know too, when they don't realise or fully appreciate how a phase of tiredness or exhaustion or just feeling awful can hit you so suddenly.

Don't worry about the Christmas party Kay, remember your health comes first and even if it means you have to just go for a little while and come home soon then that's okay, or even if you find it easier not to go at all. Just do what you feel is right for you come that time.

Hoping so much everyone's sleeping patterns and energy levels at other times can improve, still believing each of you guys have new and fresh phases of your lives on the way and that this tough time that you've been through is going to pass and help you appreciate and prosper in much better and healthier times ahead. Praying for that for all of us today!

Craig

Hi Brent,

I was just wondering how you have been doing this week, those long work shifts sound hard going I do hope so much that a good and healthy sleep pattern can come. Remember work is just work at the end of the day, don't let anyone pressurise you to go at a pace that your body is not ready for, and remember Brent there is still hope and recovery ahead I truly truly believe that. Have still been thinking about you and will keep you in my prayers.

Craig

Thanks Lori and Kay for the kind words and best wishes regarding the appointment I had yesterday. It went okay but kind of just deferred things really to another appointment next week. the doctor says he is having a meeting with other doctors next week and is going to look at my scan results then and to come back to him next Thursday and then see what he says about it all. Hoping that everything can be resolved quickly and smoothly and with no harm and that can get through next week's appointment too safely and God can have mercy on this situation and everyone here's circumstances right now. Thanks for all the thoughts and prayers it still means a lot right now!

Craig

Thank you very much Craig for your continued support. It's really appreciated.

Hi Craig,

Sounds like things went ok yday. I am sure it is just a storm in a tea cup and next week's appointment will put your mind at ease.

Take it easy this weekend and remember to think positive thoughts.

gosh thats awful kay makes you realize you have to be your own advocate for your health. i went only 5 months but could have been diagnosed month 1 if the bloody dr at the ER did the test.

and yes i live hour by hour now ...cant make any plans and everything has to be spontaneous .

Thanks Kay,

Yes went okay, next week again got stuff to deal with. Another bit of a setback today as urine test results had some red blood cells in it, not sure what it means if it's anything to worry about, going to try and get to speak to the doctor on Monday God willing.

Hoping you have had a good day Kay and that you manage to get good sleeps and rests over the weekend!

Craig

Yes Lori just need to live in the present, not think too far ahead or worry about the future. Easier said than done I know!

Craig

Yes lori, it was awful indeed. If I didn't walk into my doctor's surgery and request an ebv test a couple mos ago I still would not hv rcvd a diagnosis. For an entire 13 mos none of them ever thought about it.

Hi Craig,

sorry to hear about the urine test. I am not sure what it will mean but I am sure if they have any concerns you will be in the best hands. Try not to worry about it. Difficult I know.

Have a lovely weekend.

Thanks Kay, I know yes trying not to worry and just will phone docs next week and see what they say. Just need to not let it derail me, I get so worried about these things and wish I didn't. It is kind of borderline between within acceptable limits and abnormal I think, just keeping putting my faith and trust in God to pull me through, that is what we need to do for sure.

Hoping you have a lovely weekend too Kay - you deserve it after such an up and down few weeks - you've been through the mill I know so just take it easy and do something nice for yourself today if you can! Still rooting for you and thinking of you and Lori each day.

Craig

thats insane! but fully understand as after 6 different drs i finally asked for the test ..even the er room dr didnt do one? unbelievable!

Hope you are all having a good week so far. For me things were going well Monday and Tuesday but then lastnight I was up later than my usual time so a very poor night sleep. I am lucky if I got 4 hours. Today therefore is just another sleep deprived day. Definitely will be in bed very early tonight in order to be on top form again tomorrow.

Hi Kay,

I really hope you can get a much better sleep tonight, how frustrating and unsettling it must be, I know all you want is consistency of rest and sleep. I pray it comes very soon Kay and I still believe it will and things will find a much more healthy and normal pattern with this, you must be so fed up and weary and I'm still thinking about you.

My week has been a little up and down but generally okay, today is a big day though as have hospital appointment again and some results to get and just hope that God can guide me and keep me safe and well through it and that it doesn't unsettle me or give or try to cause me any worrie.s

Hang in there Kay, this has been a long and painful road but I still believe you are getting there and that better times are ahead for you.

Craig

Hi Craig,

thanks for your msg. I am feeling alot better today than yday. Sleep was much better. Fingers cross this will continue.

Yes, you are right, all I want is to be consistent. The up and down really does get irritating sometimes. I want my life back.

Good luck with your hospital appointment today. Let us know how it goes. I will keep you in my prayers as usual.

Thanks so much for your best wishes for me for today Kay, means so much! Keeping you my prayers each day too and glad to hear you are feeling better today than yesterday - hoping for sure this will continue - it will Kay hang in there!

Craig

Thank you too Craig. These msgs daily surely are helping in my recovery. Prior to discovering this forum I was so lonely thinking no one understood what I was going through. You and lori and many others on here have surely been a tower of strength for me in the recent weeks.

yes i agree ... helped me immensely as unless youve gone or are going through this you had no idea of the torture it causes.

Thanks so much Lori and Kay - you both have been just a marvellous help to me too and your messages each day have been helping me greatly too - thank you!! It is such a lonely road to go through mono because you feel often like others don't quite understand what you are experiencing, and it's so hard if not impossible to explain how it makes you feel to others.

Yesterday thanks to God things were settled and appointment at hospital went fairly well. The doctor says really just to have another scan in six months and they will look at the cyst again and only need to address it if it keeps growing to a certain point, just hoping and praying so much it doesn't do that - he seemed fairly optimistic about it, says its benign and will just need to keep an eye on it I guess. Hoping so much not to have to get any kind of surgery as it's a very difficult area to get into and not without risks, so just praying God can help me that it doesn't come to that.

You have been so kind listening to my moans about my own health issues on this when this is a forum for mono - very grateful for everyone's kind words and support. Hoping for a good day for you Kay and Lori and everyone.

Craig

Hi Craig,

Glad to know things went well yday at your appointment. I knew it would be fine.

Thanks Kay, really just taking things one day at a time with everything right now, you know what it's like when there's so many ups and downs sometimes you just don't know what things will be like day to day, so just trying to keep positive with things, something I've not always been too good at lately!

Craig

You will be fine Craig. Staying positive is a challenge for all of us. I have to dig really deep most days.

Thanks Kay, just finding the right kind of consistently positive attitude and focus right now has been a struggle, before I didn't seem to struggle for motivation or to get things done and now at times simple things just seem so hard and I don't seem to be able to put the same work ethic in and it makes me feel lazy and all this kind of cycle seems to happen.

Just hoping things can improve over time and we can each be strengthened, as you say Kay having to dig deep just to keep afloat and on an even keel has been a challenge for me at times too. Hoping for a good and settled weekend for us all!

Craig