My mono story...and looking for any comparisons
Posted , 15 users are following.
Hello all,
This will be long, and I apologize up front. Because it's a long story, I'd like to ask my questions (to get comparisons) up front, as to allow you to decide if you want to read the story. For those who are looking to confirm that their symptoms are "mono normal," keep reading past the questions. My story could help you with yours. I hope it helps someone else.
Here are my current symptoms that I am calling "mono related," but I'm really looking for answers to see if any one else that is suffering, or has suffered from mono, has experienced the same. And, what are you doing for it? None of this was present before my bout with mono.
*tinnitus: mainly in my left ear. This started after my mono diagnosis
*insomnia: I've never had a real sleep problem in my life. Now, I find it very hard to stay asleep at night. I typically wake in the middle of the night and am unable to go back to sleep. I've tried most OTC sleep aids, and am lucky if I get 4 straight hours a night.
*taste: I seem to have a bad taste in my mouth most of the time.
*upper respiratory: sometimes I feel like I'm at the beginning stages of an upper respiratory infection. So far, this only last for a few hours and goes away.
*butt cheek ache: Don't laugh (ok, maybe just for a second), but when I got the all over body aches, I got them in spots I really never even imagined. Both of my butt cheeks were sore. One side never seemed to get better. It's not awful now, but still slightly sore. I swear, the virus is living in that cheek. I can't prove it, but I am so confused as to why that cheek still aches.
****NEED ADVISE: Should I get a flu shot? I can't decide if I should with my immune system in this compromised stage. I have read that it's not a good idea, then I've read the opposite.
Ok, here's my story.
To start, I would consider myself a pretty healthy 44 year old. I exercise regularly, eat right most of the time, and maintain a healthy weight. I have had allergy issues for many years and of course get sick occasionally, but mostly a fairly energetic and healthy person.
I remember the exact day I started feeling bad. It was 13 AUG. I remember because I was leaving that morning for a business trip. I felt off that morning, but nothing drastic. I remember feeling hot, so I popped my thermometer in to see if something was really going on. My temp was at 99.4. I remember not feeling horrible, just a little tired. I grabbed my bags and headed out the door, but brought my thermometer and extra vitamin C with me (thinking I might be having some allergy issues). I didn't slow down much during my work trip (mainly because I never really felt BAD, just not 100%), but did check my temp every day. It stayed between 99.4 and 100.4. I returned from my work trip 5 days later, and by day 7, decided I needed to make a trip in to see my doctor.
The doctor said it was probably viral, and to let it run it's course. That sounded fair to me, so I went home and stayed out of work for a day. I felt a little achy and tired, but again, nothing I couldn't handle or that scared me. I actually started coming around...the fever was gone for about 4 days, and I started feeling normal. I got back to my work-outs and normal days. That Saturday, 1 SEP, I went shopping. I remember during shopping that my throat started hurting, which is not a normal thing for me. Ever since I had my tonsils removed about 15 years ago, sore throats are not a normal thing for me. I knew at that moment I was coming down with something. Again, thought it was just a sinus infection or something easy to fix.
The next day, I woke up feeling like someone had beat the crap out me. I hurt in muscles I didn't even know I had. My whole body hurt. I thought...do I have the flu? My lymph nodes in my neck felt swollen. Swallowing was uncomfortable and my neck felt swollen. I made another doctor appointment. This time, my normal doctor was not in and I saw the PA. My temp was 101. I felt bad. The PA said it was viral, I had fluid on my ear, my throat was very red, and I was draining. My lymph nodes in my neck were swollen on both sides (but nothing too drastic). She tested me for strep (I already knew it wasn't that) and did a strip test for mono. It was negative. She gave me a steroid shot and a decongestant and sent me on my way. The steroid shot, btw, was horrid. I was awake all night with a racing heart. By this time, I was losing weight without trying. I was exhausted.
The next day I felt slightly better, but the low grade fever remained. This was the case for the next few days.
I had another business trip planned for the following week, so not feeling better, I went back to the PA again. By this time, I was getting concerned. I mean, it's not normal to be sick (fever, aches, etc) for this long (it was 6 SEP). I asked her if I should travel, I asked if I should be going to work. I was still running the low-grade fever when they checked my temp. She said I was fine to work and travel. She almost acted like I was a hypochondriac and was anxious to dismiss me. Being concerned, I asked her to draw blood and check for anything. After all, I have health insurance. It would not have cost me a thing, and would not have been difficult for them to do, as the lab is in the same building. She would not.
I traveled 2 days later.
I arrived at my location feeling like I had been hit by a bus. I couldn't work. I could barely bring myself to shower. One of my work team mates suggested she take me to the local clinic. I felt so bad, that I agreed.
The doctor at the clinic said it sounded and looked like mono. My spleen felt enlarged. All my symptoms matched. By this time, I'm thinking, "what the heck is mono?" They did a blood draw and said they would have the results in a few days. They told me to rest, no work. I made arrangements to travel home. I felt horrible. I wore a mask the whole way home and wrapped up in sweatshirts and touched no one or nothing. After I made it home, the clinic called. I was positive for EBV.
I spent the next week at home, feeling horrid. I was supposed to be resting, but I had insomnia (something I'd never had before).
One night I realized I couldn't feel one of my butt cheeks. It was numb. I thought...this is crazy, but maybe it's a weird symptom. It went away in a day.
The fever, exhaustion and all over unwell feeling stayed until 18 SEP. On this day, I panicked. I was feeling numbness in my legs. My thought process was foggy. I felt out of my body, out of control, anxious...awful. I thought something really bad was happening to my body. Thankfully, my mother calmed me and I got through the night. I was ready to get back to my normal life. My stress level was sky high. I was afraid something else was wrong with me. I was thinking the worst. My BP was through the roof (I've never had high BP in my life). My left ear was ringing. I had lost 12 pounds by this time (I must admit, it was a great diet program). I made another doc appointment for the next morning.
My regular doctor was back in, and he convinced me that all the horrible things that google said I had, were not actually what I had. My blood work, besides the EBV, was good.
At this point, every morning for me was a bad morning. My eyes would be swollen when I woke up. It was hard to get out of bed. I felt so bad. Since there was nothing my regular doctor could do to assist me, I went to a holistic doctor that a friend referred me to. He could feel my body all out of whack, my weakened immune system, my enlarged spleen and aggrevated liver. He gave me a list of supplements to assist my immune system and get my body back on track. He was treating my liver, spleen, thymus, general inflammation and poor immune system. By 26 SEP, I was feeling better. I took it easy, but the next week for me was real progress. I thought I was really coming out of the woods from this mono nightmare. I didn't have a fever all week. My main complaint during this time was the insomnia. I was having a hard time getting to, and staying asleep.
Fast forward to 6 OCT. I made a mistake...and went for a massage. Apparently, massages can hurt you, not help you, when it comes to viral infections. I wish I had known that before the massage. By that night, my low grade fever had returned. It stayed with me until 13 OCT, along with the regular unwell feeling. I couldn't work out, and little tasks made me tired. I just didn't feel good.
Since then, my days have been up and down, but at least the fever has not returned. I have returned to a normal work schedule (except for going in a little later than usual, because I always feel like crap in the morning) and in general, feel better than I did.
I've read many stories in this forum, and talked to many friends who have has this before. All in all, I think I got it easy. I do feel that if this had been diagnosed correctly in one of the first 3 doctor visits, it would not have gotten so bad. I could have stopped my life to care for myself instead of driving on like nothing was wrong.
To those out there that think this is the worst thing ever...I hear you loud and clear. I agree. Mono wears you out emotionally, because you just get tired of being sick. You get tired of not being able to live your normal life. Overall, it could have been much worse. I was so stressed and anxious wondering what in the world would cause someone to have a fever for 3 weeks. When I got the mono diagnosis, I understood.
Mono plays some serious mental games with you. I'm still playing them, as I'm not completely well yet. It's up and down right now. I never know what the day will feel like until the day is there. For the most part, I can continue with my life now...just not the way I'd like. It is very hard physically and mentally to be sick this long, and I'm doing the best I can with it. I'm scared at times, that my weakened immune system will lead me to something really terrible that I don't even want to think about. I carry hand sanitizer and get far away from people that look or sound sick. Basically, I'm a little scared to live like a regular person.
I am thankful for this site and reading your stories. It helps me to realize I'm not crazy. I've been reading for quite some time and finally decided to contribute. Thank you all for sharing your good and bad stories. Mono sucks, and I hope we all get rid of this crap ASAP.
1 like, 228 replies
craig07920 jen83382
Posted
I'm so sorry Jen you've been going through such an awful time. I haven't read all your message yet, having quite a tough day and spell right now and feeling overwhelmed, just wanted you to know I'm thinking about you and will say a wee prayer for you, and hope I can come back and read your message in full when feeling a bit more settled and thinking a bit more straight.
Hang in there Jen and praying for healing in your life and circumstances today. Just grateful that God is there for us to turn to right now, and asking for His help for each of us.
Craig
jen83382 craig07920
Posted
Craig,
I do hope you get to feeling better. I've seen all the positivity you've contributed to this forum, and it means a lot of everyone. It doesn't seem fair for someone so wonderful to not be feeling up to par. I will add you to my prayers tonight.
I also see you are in Scotland, is that correct?
craig07920 jen83382
Posted
Thank you Jen, that means so much to me your kind words and prayers. I've been feeling pretty desperate this weekend in a terrible state, any prayers for me right now mean the world. I'm going to the doctors again tomorrow just hoping it can settle me down a bit and reassure me a bit.
Yes I'm in Scotland too Jen, it's nice to chat with someone else here for sure, and hopefully I can be more up to contributing more meaningfully to the discussion again when feeling a bit better God willing.
Thinking of you Jen and will say a wee prayer for you too.
Craig
Leslie2019 jen83382
Posted
I agree! Craig always has positive and encouraging words to share with everyone!!!
He recommended that I take increased amounts of B Complex and Vitamin C, and after doing so (about 2 weeks later) I turned the corner and started feeling much better. That was at about 8 weeks.
I also take 5000Units of Vitamin D and Reservatrol daily.
Leslie2019 craig07920
Posted
Hoping your doctor's appt went well, Craig!
craig07920 Leslie2019
Posted
Thanks so much for your kind words Leslie, I am really grateful for that. Still dealing with some issues myself right now and having to take things one day at a time and not look far ahead. Just trusting God to help me right now, that's the best thing and only thing any of us can really do, need it more than ever!
You and everyone on the forum has been so supportive to me even though my issues more recently haven't been to do with mono, and I'm very grateful and appreciate for that. Thanks Leslie!
Craig
dominika20801 jen83382
Posted
hi Jen,
some parts of your story and symptoms do match up with mine. I remember feeling off for a long time before the symptoms really hit though. I would say for me it started in march but I stopped going to school and became extremely weak in may of this year. I was never actually diagnosed with mono and i even went to an internal specialist which dismissed all my symptoms as "anxiety related" when nothing on my blood tests showed up wrong (except for low iron). I of course knew that was a bunch of baloney because one of the symptoms i had was feeling anxiety for no reason!!! before i even became weak i got uncontrollable anxiety for two months which i could not explain! this had NEVER been an issue for me before. some of my other symptoms quite scared me too at first. I noticed i couldnt feel my legs when i was laying in bed, one night i had trouble breathing and got scared i was going to suffocate, i generally had insomnia, headaches, off balanced and dizzy feelings, and just generally feeling horrible. its been one hell of a time, but luckily i am much better now. still not 100% and like you, mornings for me are always worse. ive been missing my first block class at school once a week or so because the morning just sucks. i still have days where i feel more tired and know i need to take it slower, but i would say i am about 85% recovered, which i think is a great achievement up to this day.
lori93950 dominika20801
Posted
so glad you are 85% better ! its great to hear recovery stories and youre young enough that you can completely get over this 100%. and yes the anxiety it causes is AWFUL!! its amazing what this can do to your whole body .
dont push yourself and rest when you need to .
jen83382 dominika20801
Posted
Dominika,
I'm glad to hear you are feeling better. Gives us all hope.
Now your story is sounding like mine as far as anxiety, and the doctor saying that's what it was. I seriously feel like the PA that last looked at me at my regular doctor's office thought I was making stuff up. She tried to give me xanax. I told her at that time that i didn't need that, I needed a diagnosis.
I, too, have had anxiety with this illness, something I don't normally have. Then again, there are so many things happening that are so odd, nothing surprises me anymore.
I am hoping you will tell me the insomnia had improved? I think that is one of the worst symptoms for me at the moment. Well, that and the ringing in the ear. I can't wait to get a full night sleep again. I honestly feel like if I was sleeping better, I'd be healing better.
No one will understand this illness unless they have had it like we have.
craig07920 dominika20801
Posted
Hey Dominika,
It is lovely to see a post from you - I know you've been through such an awful time with this virus, and it can be frustrating when even starting to feel better recovery still progresses slower than you'd hope. Remember you will get back to 100% and I think you've done amazing to get back to school and have been sensible and wise in how you've managed things and taken rest and time out when you need to - keep doing that when you need to Dominika and remember you will fully get there! Thinking of you still.
Craig
dominika20801 jen83382
Posted
yes, the insomnia has gone away thankfully! I know how horrible it is when you feel so unwell and yet you cant get enough rest. usually when i am feeling tired now i go right to bed and fall asleep pretty fast, but for some reason in the beginning stages of this virus when you need the most rest people seem to get insomnia.
i did go to a naturopath to see if there was anything i could do or take to improve my condition and they recommended a magnesium supplement which i think really helped me calm down and sleep during the worst of it, so that might be worth a try!
really hoping you get better soon, take care
jen83382 dominika20801
Posted
Thanks for the reply. I will look forward to better sleeping in the future. Sigh, it's just killing me right now.
craig07920 jen83382
Posted
Hi Jen,
Just read through your message again and goodness what a terrible few months you have been through. I really do empathise having been through mono myself many years ago, and I want to reassure that it sounds typical mono to me and most definitely reassure that it will get better. For me this stage you are at right now, about 3 months or so, was the worst in many ways because I was so exhausted with day after day feeling so unwell and it going on so long and wasn't seeing any improvement really by then.
But things DO get better with time Jen. In terms of intensity, the first 3-4 months were BY FAR the worst for me, and even though it still took some time for me to get fully well again, the intensity did lessen. I'm amazed you've been able to keep working, what great courage that must have taken Jen. But I definitely encourage you if you need to take time out, please please do that and make sure you get plenty of rest still and just manage your activity as best as you can. Getting through each day with this horrible virus is an achievement and remember THIS DOES GET BETTER and even though it's hard to see and feel it at the time your body strength and resilience does return. Don't panic if it still takes a little while for full recovery, that can be normal but you will get there I truly believe than from my own experience and thinking I never would at stages, and reading similar accounts of others on the forum.
Taking vitamins and herbs certainly helped me Jen, a good strong multi-vitamin per day, higher doses of Vitamin C (1000mg-3000mg per day), a B complex vitamin per day (great for energy levels) and immune boosting herbs like siberian ginseng and echinacea. Not saying that's a magic cure but can help your system just cope a bit better with it all through this hard time.
Hang in there Jen and thinking about you right now. Going through a tough time myself with my physical and mental health and it's so hard. Just hoping and praying God strengthens us all each day right now!
Craig
jen83382 craig07920
Posted
Craig,
Thanks for the kind words. Much needed, especially today. I'm discouraged today.
But about you...how did your doctor's appointment go? How are you feeling?
I'm actually not in Scotland but was asking because it's on my bucket list. I was in Ireland this year and was told if I liked Ireland (loved it), I'd love Scotland. Now I can't wait to go...just gotta get healthy first.
kaymono jen83382
Posted
I can relate to alot of what you said Jen. The insomnia and the anxiety and depression have been the worst symptoms for me because they just won't shift completely and I am 15 mos into this horrible thing. Every now and then I feel I am getting a respite and it knock me for six again.
lori93950 kaymono
Posted
and dont forget the horror of the mornings i feel so weird in the a.m. like my skin is crawling and so ill . it burns off around 2.30pm but just awful 😦
kaymono lori93950
Posted
Oh yes, most days I don't like a semi normal person until abt 1 or 2pm.
I remember before mono I use to have so much energy in the mornings - I even use to go for a 3 mile run at 6am before going to work.
Now sometimes I wake up feeling more tired than when I went to bed or like I was run over by a truck in my sleep. Maybe this is just a part if aging but I don't like it very much.
craig07920 kaymono
Posted
Still thinking about you Kay. The lived experience of anxiety, depression and insomnia is so painful and I know words can't do it justice when trying to describe it on a post on the forum here. Just remember Kay you are going to get better. I absolutely have faith in that today. I want you to know that and I believe a breakthrough is coming and that these awful things of anxiety, depression and insomnia will fade away and disappear completely as that turn around happens.
I do empathise in my own situation too, sometimes feel things a little better and more settled and then something happens or have a bad day and it just takes you on this whole emotional rollercoaster that's so hard to ride and so hard to control. Praying God can help settle and strengthen our circumstances and emotions.
Hoping a good day and period ahead Kay - stay strong and remember you are going to win this battle - and that God is fighting it for you so you don't need to take the strain of it. Just manage as best you can right now and hold onto hope and faith as much as you can. I know it's easier said than done in hard times - you will find the strength Kay you are stronger than you think. God will get you there I truly believe it. Struggling myself in many ways too but holding onto hope and belief for us all!
Craig
craig07920 lori93950
Posted
The skin crawling was something I experienced a lot too Lori, looking back I put it down to what they call 'low grade fever', a term I didn't really understand at the time when going through the virus I think. It does go away Lori it's the worst of the worst of symptoms along with the fatigue I found - hang in there you are going to get through this and get better I 100% still believe it Lori, God has got your back on this one.
Craig
craig07920 kaymono
Posted
You're still young Kay, this virus tries to make your body feel older than it is - it won't always be that way though! And your base of fitness will stand you in good stead in the long run for sure!
kaymono craig07920
Posted
Thanks very much Craig. i so needed to hear that. Deep down I know I will be ok in time but some days you just wake up on the wrong side of the bed and you have to dig deeper than you have ever dug before.
brent_83487 kaymono
Posted
been dealing with insomnia from this virus for almost 2 years. it sucks! changed doctors and found out that i am also dealing with hhv6 infection. wtf!!! last 2 years of my life have sucked.
kaymono brent_83487
Posted
Oh poor you brent. Sorry to hear that. 2 years is a very long time. It's funny when I first came on this site abt 2 mos ago I thought I would be the one on here suffering the longest.
My insomnia comes and goes. I would say that now on average I have about 2 or 3 bad nights a week and the rest are adequate. When I say adequate I wake up multiple times in the night but tend to go back to sleep eventually and average about 7 hours on these nights. A year ago I was luck if I got 4 hours and that carried on everynight for months and months.
The things I have noticed have been helping me somewhat with the sleep are:
Wishing you better soon.
P.S. apart from the insomnia, what other symptoms are you still experiencing after 2 years?
I tell you, this virus is ridiculous. Some days I feel almost normal again and then by a day or two I feel like I am completely back at square one. As a result it has been a complete emotional rollercoaster!
brent_83487 kaymono
Posted
my body is finally starting to control it's temp. i still have some joint pain, not as bad as a year ago. my vision is not great. that is probably due to lack of sleep. i sleep about 4 hours a night. i work 12 hours a day, so it sucks. had bad mouth ulcers, but it is getting better.
Mono_too lori93950
Posted
Hi Lori,
I had that too the Dr, said that cortisol levels are higher in the mornings, she wanted to test that, but I was so sick I couldn't make it to her office (15 min away) for the test. This eventually passed and was one of the last symptoms to go.
Mono_too brent_83487
Posted
Hi Brent,
My daughter is still suffering too, she is at the two year mark. How did you find out about the other infection?
kaymono Mono_too
Posted
I did a cortisol test about a year ago where they test your saliva abt 4 times during the course of the day. It was my acupuncturist who recommended it. She concluded that my results showed I had adrenal fatigue meaning my cortisol levels were out of whack and high when they are meant to be low and vice versa.
lori93950 Mono_too
Posted
hi mono
you had what too ?
and yes ive cancelled so many appointments so stopped making them until im
more stable . i now do a lot of 'phone appointments '
brent_83487 Mono_too
Posted
i kept struggling so i changed doctors. one doctor just tried to tell me it was depression, so he gave anti-depressants and sleeping pills. this messed up my liver so i changed doctors again. my new doctor wanted to test for every possible active infection and that is when i found out about hhv6.
craig07920 kaymono
Posted
Thanks Kay, oh I do understand so much I am the same always seeking words of reassurance and encouragement from those close to me, just helps so much because sometimes even though you may know a truth in your heart, when you don't see the reality of recovery happening yet it really grinds you down and makes you doubt and all sorts of negative and discouraging thoughts - so I'm thinking about you Kay and still believing you are going to get through this and be well again.
My back pain has been bit worse again the last few days and that's got me a bit concerned again too, so going through a similar kind of cycle and phase. Trying hard to relax and breathe so not to tense those muscles, but not always easy. Want to keep going and not let this stop me from living a good life for God. Grateful that I have an osteopath appointment today so really hoping that has come at the right time and can make a difference and settle things down.
Hang in there Kay, standing together with you for recovery and to get through the hard times. A nice wee quote I seen church post on Facebook:
"Be assured that God hears your cry. May He deliver you from your deepest fears and defend you against your fiercest enemies. May He lift up you from the lot of despair, shield you from hopelessness and strengthen you as you face great storms."
Rev Malcolm Duncan
craig07920 brent_83487
Posted
Hi Brent,
Just want you to know still thinking about you and still rooting for you - see the quote in the message above posted to Kay too something to hold onto that God hears all our cries. Oh Brent He knows what terrible suffering and struggles you have been through this last 2 years, I just hope and pray for a significant breakthrough that just releases freedom, good health and a new and joyful perspective on everything in your life.
Will keep you in my prayers Brent. A while back there was some words in the Bible which I remember not being able to understand, wondering what it meant - not got the exact words but it was about God being a jealous God, and I was thinking how can this be because jealousy is not a good thing, something we should try and steer clear of it possible, what does it mean that God is a jealous God?
Somehow God led me to an understanding of this verse though - and it's something really comforting - that when it says God is a jealous God, it means that we belong to Him and He refuses to give up on us, no matter how much we have messed up or how hard things have been for us, He will keep fighting for us to help us win our battles and to bring us close to Him.
So just was thinking about those words in relation to your situation Brent - even though goodness knows you must be so tired, weary and fed up and feeling down - remember Brent God is a jealous God and is keeping fighting for you, He hasn't given up on you or your recovery and hasn't forgotten you even though I know there must have been so many times feeling alone and pushed to the brink of your capacity to cope. And remember God is a miracle worker, He can turn the worst of situations around for good, no matter how bad or how long it's been going on.
Praying so much for God to do miraculous works in your situation Brent, please God help our friend Brent has had so much to deal with please have mercy and bring him hope, healing, good health and peace again, in Jesus' name.
Hang in there Brent - and thanks as always for all your kind words of support and help for me too - has meant so much and continues to as still finding things hard myself too right now and need God's help and healing more than ever.
Craig
craig07920 lori93950
Posted
Hey Lori and Mono Too - just wanted you to know still reading your messages and keeping hope in my heart for recovery and good health for you and your loved ones - hang in there and thinking about you today.
Craig
craig07920 brent_83487
Posted
So frustrating Brent when the doctors don't take the time to listen to what you're saying about symptoms and at least investigate them further. I hope so much that this HHV6 is something that can be well managed and see recovery and improvement soon, hopefully being from a similar family as EBV it means that recovery is very possible and probable even if it takes time to get there.
Craig
kaymono craig07920
Posted
Thanks so much Craig. That quote from the Reverend is perfect. I have no doubt we will all be ok. Feeling abit rough today though. My eating has been abit messy this week. Haven't stuck to the gluten free so far this week as I have been out for lunch meetings almost everyday.
Also, didn't make it to bed until about 11pm lastnight and was awake by about 4.
kikisan kaymono
Posted
Yes, I agree, Kay - perfect quote from the Reverend. Thank you Craig. You have been helping shine some light in these dark sleepless hours. May we all find strength and heal. I am thinking if you.
Kiki x
kaymono kikisan
Posted
I am going to struggle to make it until 6pm at work today. I think I will be leaving early if I can. I need sleep.
kikisan kaymono
Posted
Yes, try to leave early!.....sleep is the best medicine if you can manage to get it....fingers crossed for you x
kaymono kikisan
Posted
I work from 8.30am to 6pm which can be torture when you haven't had a good night sleep. I will try to get out of the office by about 4.30 or 5pm latest today.
lori93950 craig07920
Posted
thank you craig ! rough one for me ...yet again . hopefully we can all see some light or shift soon ...please GOD
brent_83487 craig07920
Posted
thank you craig. you are truly a blessing to everyone on this site. your words keep me hoping that better days are ahead.
kaymono lori93950
Posted
same here lori - this week hasn't been a great one for me. So looking forward to the weekend.
craig07920 kikisan
Posted
Thanks so much for the kind and supportive words Kiki and Kay. It helps me greatly just to come on and chat with people and something really positive in my life, and amazed at the kindness and sincerity of you guys and all the people on here - it has lifted my spirits often in hard moments and days, and grateful for that!! Hoping so much for a good weekend for you and for much better sleep for you Kay - thanks for thinking about my too Kiki so grateful for that means everything! Continuing to think about you both and believing better times are ahead for you, refusing to stop believing that.
Craig
craig07920 lori93950
Posted
Hi Lori,
Hoping so much for a better day today for you, I hope and pray so much this awful rough period you have been going through can pass over very soon I know you must be so tired and fed up. Definitely agreeing with your prayers for recovery Lori, trusting God when we don't understand or can't seem to feel His presence or see the light is not easy, it's scary Lori but just remember He is there even when we don't feel it and never leaves us or gives up on us. And even when we can't understand, that's okay because He loves us and is faithful and can be assured He is working for our good, I know for sure I need to be better at pressing in to those truths too in the hard moments and always!
Was reminded just by reading wee morning message about the story of Job again, how he said that when he looked north, east, west and south, he couldn't seem to find God or feel His presence. But God got Him through the darkest valley Lori and He refused to condemn God and just how God restored His life again and how the story ends is something we can take so much hope and heart from when things seem to be going against us.
Craig
craig07920 brent_83487
Posted
Oh thanks Brent, your words have been a great help to me too just to know I have friends and supporters on here in itself is a great comfort. Hoping so much we can continue to encourage and help each other, I'm definitely still believing better times are ahead for you Brent - don't give up and remember just take it at your own pace and a day at a time, and that God will work out all the detail that seems impossible to work out and look after the bigger picture, He just wants you us to hang in there and just hold onto hope as best as possible. Praying that He can fill us with faith and belief today.
Craig
kaymono craig07920
Posted
Craig, you along with lori and others on here have been a great support system for me since the moment I joined this site about 2 mos ago. Finally I am able to speak to people who understand what I am going through.
craig07920 kaymono
Posted
Thanks Kay that's such a lovely message and really such a nice thing to say. You and Lori and others have also been there for me too and accepted me on here even though my current issues are not related to mono, which I'm very grateful for.
I have often thought there should be a dedicated charity / voluntary organisation for glandular fever in the UK since I first had it - there are organisations for most things out there and if there was an organisation for that then there would be a support network there people can reach out to. Maybe one day it is something that will be formed with the right people behind it with the right intentions and expertise perhaps.
Hoping you can have a nice and relaxing weekend ahead!
Craig
kaymono craig07920
Posted
i totally agree with u Craig. Wishing you also a great weekend ahead.
lori93950 craig07920
Posted
thank you craig such great words ...and yes at times you just feel confused and 'lost' how much bloody resting can we do ...we need a life ! but im trying to be sensible every day and not do too much .... hope you are feeling better and thank you for always being so supportive !
lori93950 kaymono
Posted
yes nobody really understands the trauma of all this unless theyve been through it
kikisan lori93950
Posted
.....you got that so right Lori....I want my life back too....the days are so tedious. I started a meditation group based on the book "Full Catastrophe Living" - my past year qualifies as a full catastrophe along with many others on this site.
Craig, you are a gift to this community. You have helped so many here who are in great need of support. I honour and thank you.
Kay, hang in there!
Hugs to all,
Kiki x
craig07920 kaymono
Posted
Thanks Kay hoping for a great weekend for you too and that you are able to catch up with rest and have a good and settled sleep pattern and feel refreshed. Still think you're doing amazing to keep going with work right now, you've shown real courage and determination with this Kay despite things not being at all easy so remember that even though things still not great or back to normal fully, you have made progress and will make further progress until full recovery manifests.
Craig
craig07920 lori93950
Posted
Oh thank you also Lori for being so supportive to me, despite how you've been feeling yourself and I know going through an awful time lately. Still a bit up and down but been able to do more things this week and God has been helping me, just praying God can help us break through the ceiling that we are struggling to get through at the moment.
I know it's hard to take the approach of having to be 'sensible' each day, not that I mean we should be foolish of course, but just to have to think about every activity and avoid certain things day on day that you enjoy like your exercise and doing more things I know is very tiring after a while. You will get there Lori I remain convinced about that, just hoping and praying for a better phase ahead you've done so well just to get through this last few months that is for sure - have shown determination and courage and remember God is with you and will give you everything you need to win this battle.
Craig
craig07920 kikisan
Posted
Oh thank you so much for the kind words Kiki - you are very much a gift to this community without any doubt, you have brought so many good ideas and suggestions to me and the guys here, it was because of your post that I went and had some food testing done which gave me some useful help and information, and also just giving folks ideas and information about meditation, different treatments, and all the encouraging words has been amazing! Thank you so much Kiki you don't realise how much you have been helping people!!
Continuing to hope and pray for your recovery Kiki, living through a year like you have had to live through is just the worst experience. A day is a long time when dealing with the symptoms of this virus and the various things you have had to go through, so to have to live a year of this is a traumatic and life-changing experience Kiki. But I do believe it's going to give you a resilience like never before Kiki, the other more trivial things of life that maybe you pondered on or worried about before will seem like a piece of cake after this and it definitely does help put things into perspective and just to realise how precious your health is. Better times are ahead for you - I remain convinced about that and hoping for a good and settled weekend for you.
Craig
kaymono craig07920
Posted
I am doing good Craig - just having a relaxing weekend. Bought a takeaway and catching up on this week's tv
craig07920 kaymono
Posted
Sounds good Kay! Saturday night TV not what it used to be, these X Factor and I'm a Celebrity shows have had their day!!
kaymono craig07920
Posted
Funny you should say that Craig...yesterday I watched all the "I'm a celebrity" for the week and it was quite a good laugh. At least it took my mind off my issues for a few hours 😃
kaymono lori93950
Posted
Wishing you a healthy week lori. Hope this will be a good one for you.
Despite not the best of sleep lastnight I have managed to almost made it through the work day - just 50 mins to go!
Giving thanks for small mercies.
lori93950 kaymono
Posted
gosh youre doing amazing ... im going through a very bad few days...cant wait to see some improvement 😦
kaymono lori93950
Posted
And so are you lori. We all are truly amazing. Let's show mono/glandular fever/ebv who is the boss!
craig07920 kaymono
Posted
Yes for sure Kay anything that can help you relax and take your mind off things for a while is good! I seen bits of it with Noel Edmonds and Harry Redknapp, I don't know how they can eat those things!!
craig07920 kaymono
Posted
I think you are both doing amazing Lori and Kay for what you've had to deal with over such a difficult and long period. You really have shown courage and I see wisdom and strength in you both even though you may not always feel that way yourself right now - you are stronger than you think and God is going to give you all you need to get through this - have no fear and hang in there, better times ahead for you both I hope, pray and believe.
Craig
kaymono craig07920
Posted
Thanks very much Craig. You too are amazing!
kaymono craig07920
Posted
It is super funny Craig. I agree some of these things are rubbish tv but they have a way of taking you outside of your head especially when you are an overthinker like me.
kaymono kikisan
Posted
The floaters are giving me a warm time today 😦
lori93950 craig07920
Posted
thank you craig ... boy has it been TOUGH ! my GOD if you can get through this you can get through anything ! had so many very low moments...want this nightmare to be over soon !! ill write to santa and ask for good health this year!
lori93950 craig07920
Posted
thank you craig and yes ! the strength of everybody going through this is something else .
the amount of willpower and patience needed to 'get through this ' when you wake up everyday and feel awful....you never ge t used to feeling terrible that much i have learned !
lori93950 kaymono
Posted
yes i always got through things with my power of mind and determination but this virus surely takes your confidence down a few notches as its oh so powerful .
craig07920 lori93950
Posted
Hey Lori,
Hoping so much you are feeling a bit more settled. And boy it was only thanks to God that I stood any chance of getting through that man, I had nothing Lori was totally helpless to overcoming this thing needed God to strengthen me and pull me through. And remember God's true character at these times Lori - He is loving, faithful, merciful, forgiving, healing, compassionate, kind - He's fighting for you Lori and even in any moments you feel like you can't go on, He is going to get you through and give you amazing strength and recovery over this coming period I pray for that and believe that in Jesus' name.
You're so right that just dealing with the reality of each day being so hard grinds you down almost to a stand still at times. Sometimes it just feels too much to bear. Hoping and praying so much for God to lift that burden and remember things won't always be this hard Lori, there is hope and there is recovery for you, I believe it with all my heart.
And go at your own pace as always today - those decrees and that prayer declaration are good things to go back to when feeling so low and just to read out loud - especially decree 31 ("I am healed in the name of Jesus Nazareth....")
Oh Lori hang in there and thinking about you today - stay strong God is with you.
Craig
craig07920 kaymono
Posted
Oh hope those floaters settle down Kay that sounds an awful thing to have to deal with. Hoping for a better day today - oh thanks for your kind words but really I'm not amazing at all I'm having struggles each day and finding it hard to find my way right now with a lot of things, just grateful God has been there even in all my mistakes, need His help more than ever!
Yes Kay it's so hard when you think too much about everything, and it's not the kind of thing you can just say 'stop doing that', if that's your nature it's not at all easy and I know I'm the same as I definitely have the tendency to worry and overthink too. Distraction is good and if we can keep our minds focussed on positive things that is good, hoping God can help us with that!!!
Hoping for a good one today Kay and remember just take things slow don't push too hard and that better times are ahead.
Craig
kaymono craig07920
Posted
Thank you very much Craig. I still think you are amazing. The support you offer each of us on this site says it all. You will make it through your own challenges, I am sure of it. If nothing else, you have to as the rest of us need you 😃
Yes, the floaters are a pain. The seem to increase after a bad night sleep, stress and when anxious. Also when my back pain intensifies they tend to appear to.
Today is a fairly decent day, thank God. I must say I slept about 9 hours lastnight and I feel alot better for it.
My boss recommended I take "Phenergan" which is an antihistamine. I have had it 5 nights so far and have had 3 out of 5 decent nights sleep.
craig07920 kaymono
Posted
Oh Kay believe me it is a great help to me coming on the forum, I've had the time to do that because not working and it's a therapy and healthy thing for me just to come on and talk and chat with nice people and to be involved in a community of people (like you) that encourage each other is something which means a lot and is helping me a lot!!
I hope so much that these floaters and the back pain settles down, just so frustrating when sometimes you feel one thing settles and something else seems to come to the surface. Remember there will come the time when all the symptoms will be gone and can no longer harm you, I truly believe that!
Glad that you managed to get a good sleep last night, that is really good. Hoping that the antihistamine is helping and if it's enabling better sleep then definitely keep going with that!
Craig
kaymono craig07920
Posted
Hi Craig,
lastnight sleep was not as good but as usual it seems if I am not in bed by about 9.30pm then the sleep is rubbish. I will try and make up for it tonight.
The floaters have settled abit for the moment. Or maybe I have just mastered the art of playing games with them.
Back is still abit stiff but I also have a chiropractor appointment tonight so hopefully that will sort me out.
You are so right, it always seems that as soon as you get rid of one symptom something else comes up. So frustrating!
craig07920 kaymono
Posted
Good luck at the chiropracter today Kay, hope that can help settle your back down for sure. I have been seeing an osteopath and physio for a while now, seeing physio today and sounds silly but it can help even just to know I have an appointment to go to and that things hopefully be settled down from that again.
Early to bed is good Kay for sure, that's the way I am these days unless doing something specific then in bed most nights for 9 or 9.30, even if it's just to be there and watching tv for an hour or so, at least you are there and can relax! Hoping so much for better sleep tonight and for a regular and good sleep pattern Kay.
And for sure hoping these floaters settle down, it sounds a horrible thing. I know what you mean just want a period of stability, where don't feel like any new or recurring symptom is causing real pain or bother, just a period to breath and feel more at ease! Still believing it will come Kay and that God is working on your circumstances and has AWESOME plans for your future. Praying for His will to be done in our lives!
Craig
kaymono craig07920
Posted
Yes, the chiropractor appointment was good. Like you, I look forward to these little appointments. I have been seeing the chiropractor now for 6 mos. Intially I was on twice a week, then once a week and now fortnightly. It is very expensive but I do believe it helps.
I was in bed by about 9.30 lastnight and whilst I woke up a number of times in the night, I had a decent enough sleep. Was properly awake by about 5:30. So today I am feeling ok. Also it is a nice sunny day which does help. I think my mood and everything is affected by the weather these days. Why does this virus make us all so sensitive?
craig07920 kaymono
Posted
Know what you mean Kay it is expensive these things, I have also been getting all sorts of treatments and being seeing osteopath for almost 6 months too, but as you say if something helps with pain and could take away any illness / pain it's worth it for sure - your health is your wealth for sure.
Oh my mood often seems to be affected by the weather too, those bright and crisp winter days are lovely, here in Scotland it wasn't so very wet and cold, but at least it's not snowing! Hoping that stays away for a while yet!
Craig
kaymono craig07920
Posted
Agree with you Craig. We have to do these little things that makes us feel better and not worry about the costs. That has been my strategy over the past 15 mos.
Ain't today a lovely day.
Feeling great. Slept about 9.5 hours lastnight and feeling better for it.
wishing you a lovely week
craig07920 kaymono
Posted
Thanks Kay for your lovely words, yes yesterday was a nice day here in the UK I love the bright and blue clear skies of a winter's day. Every season has it's beauty.
Most definitely wishing you a lovely week too! Sometimes this last while Kay, and I know you can most probably relate, my enthusiasm for life and belief in myself and in getting through things and overall positivity just hasn't been as good as it could be. Hoping God can renew each of us in these things where feeling weak or struggling to endure or see hope or a way through. Still believing there is hope and there is recovery thanks to God's goodness.
Craig
kaymono craig07920
Posted
thanks Craig.
i can totally relate to everything you said.
craig07920 kaymono
Posted
Thanks Kay, and I do with the things you say too, hoping very much today can be a good and positive one for you, stay strong.
Craig
kaymono craig07920
Posted
Hi Craig,
Yes, today is a far better day than yday. My trend at the moment seems to be one good day and then one off day and so forth.
Looking on the bright side, at least I always have something to look forward to.
My colleague is back from holiday tomorrow so I can give him is workload back and next week I have off!
Wishing you a lovely day.
craig07920 kaymono
Posted
Hi Kay,
Hope you are looking forward to your week off and it can really allow you to take things easy and do the good things you enjoy for a few days - you deserve and need that Kay!
Yes the up and down days / trend is not easy to cope with, when all you want is stable progress in the right direction and to be able to build positively on each good day without any further setbacks. That time of stable health and progress will come for you Kay, I still believe that and definitely hoping that the week can help - and remember make sure you relax and also do something that brings you joy and helps take the stress away if you can, of course making sure you are not overdoing it too and take the time to unwind also 😃
Craig
kaymono craig07920
Posted
Of course Craig. I plan to rest next week. At the moment I have absolutely no major plans as I don't want to stress myself out think about it.
On Thursday 13th Nov it is our office Xmas party so I will meet my work colleagues for dinner and the theatre in the evening. All the other days I will go with the flow on what I feel like doing. I want to stress so not giving myself any expectations.
craig07920 kaymono
Posted
That's great Kay you're nearly there at your holidays....the day of finishing work ahead of a holiday / rest is a feeling wish you could bottle and keep!
That is brill you are going for dinner and to the theatre, hope you feel well for it and have a great time - what are you going to see?
Craig
kaymono craig07920
Posted
Yes Craig, I just need to get through today and then I don't have to be back in the office until 17th Dec. My telly will be my best friend next week.
For the Xmas party, we are going to see "Tina". It has great reviews so looking forward to it.
Regarding dinner beforehand, i am now unsure if I will go to the dinner. I will see how I feel on the day. I have already forewarn my colleagues that I will possibly skip the dinner and meet them at the theatre.
craig07920 kaymono
Posted
Hope you enjoy some good TV this week then Kay and that you enjoy Tina sounds like good fun!!
Yes absolutely that's wise just to see how you feel on the day, I totally understand that when you just don't know in advance how you are going to feel so just take it easy and day by day and see how you feel on the day.
Hoping for a good week for you and take it easy!! Still thinking about you and believing in your full recovery Kay, trusting God!
Craig
kaymono craig07920
Posted
Thanks Craig. Wishing you a lovely weekend too.
oh yes i am looking forward to the telly
craig07920 kaymono
Posted
You too Kay, enjoy the time off the the telly. My main viewing is snooker this weekend I'm a big fan.
Craig
kaymono craig07920
Posted
Thanks very much.
You wouldn't blv what I am watching today - 'loose women' from last week.
craig07920 kaymono
Posted
Hope you enjoyed Loose Women Kay! Nothing wrong with that!
Craig
kaymono craig07920
Posted
Absolutely!