Mono (glandular fever), guilt, and desperation

I think at this point, generally beyond 9-12 mos or so, most MDs start calling it CFS. They will also usually do a major lab work-up then, checking for other causes of chronic illness. They will test inflammatory markers, ANA and other autoimmune tests, hormone levels, CBC, thyroid, etc. It gets more complicated. Though I did continue with bouts of fatigue, depression, etc. for almost 9 mos (off and on) I started taking about 2,000 iu of fish oil and vitamin D, going outside more, visited family & friends even when I didn't feel like it, and within a few weeks felt noticeably better.

Hi Sarah / Charlotte,

So sorry to hear that things have been ongoing for so long, goodness knows you must be so weary and fed up. I just really hoping and pray for improvement and recovery for you both, I have read accounts of people on the forums here who have taken an extended longer period to reach full recovery but still did get there - I know for me, into the second year I was much better than the first but still not fully there, and probably not until the 3rd or 4th year did I start to really feel like my old self 100% or as near as again. 

I still believe Sarah and Charlotte that you are both going to get better, and that God is there and has good plans for your future and needs you well for that. Wish we could understand why such things happen and make sense of it all - I do believe that there is going to be a breakthrough in your situation and this won't keep going on and on like this forever - thinking about you and hang in there - just coping with each day and not looking too far ahead and resting when you can is all you can do when going through this, and trusting that God is a good God and will look after the bigger picture and that He is the great healer, praying for His help today.

Sounds like some good advice with the supplements Charlotte, I've found fish oil and Vitamin D has been really good for me too! Another natural therapy which has helped me a lot is Bowen Therapy, worth looking into - very safe and natural, and can help with all sorts of aches and pains and energy levels. 

Things ARE going to get better for you both, I truly believe that thanks to God. Hang in there!

Craig

 

Hi Craig,

Thank you for your concern and very kind words. I did start getting noticeably better at around 9 months. It was gradual until then, intermittent, but at that point, and after the extra supplements, things turned around. That was 6 months ago. I would say I'm 90% better now. Very little residual fatigue, and only if I really overdo it. Recovery can suddenly happen at any moment, luckily mine happened before my MD started thinking about running a whole battery of tests. But it's worth looking into, Sarah, especially if something as simple as a bit of thyroid hormone, or the like, would turn you back to your old self, fast!

Hi guys. Yes, I had all the tests run at month 2 then again about a year later. I wish it were just a bad thyroid! They even did an ultrasound of my abdomen to look for some obscure disease. Everything's fine except my lack of functioning. I tried A bunch of supplements at various stages. Nothing made any difference. Currently on probiotics, calcium, and vitamin D.

Months 6 to 14 were pretty good, was working part time and even started working out a little, then the last seven months have been rough. I rarely leave the house. There are no ME/CFS specialists where I live.

Hey guys,

Charlotte that is good to hear things are 90% or so now, your journey and timescale of recovery sounds kind of similar to mine. Just want to reassure that as time goes even further on (it was 12 years ago for me now so have the benefit of those years), things continue to get better until God willing you are 100% or as near as and can start to feel like your body can cope with more stressful activities again without breaking down on you or being so fragile like it is during the virus. 

Sarah what an awful time you have been through. I just really hope and pray for a breakthrough to come in your recovery. Sometimes just finding that little something, be it a supplement or form of relaxation or whatever that can help can cause a spark of recovery if blessed by God. In terms of supplements, things that helped me during the virus included a good strong multi-vitamin per day (such as Immunace Extra on sale here in the UK), higher doses of Vitamin C (1000mg-3000mg per day), B100 complex and/or Co-enzyme Q10 (great for energy levels and nervous system) and immune boosting herbs like siberian ginseng, oregano and echinicea I've all found really helpful at different times. 

I still believing that even though things have been so tough for so long that you are going to get a breakthrough in your situation Sarah - I pray that to God as I know how terrible this virus makes you feel and to deal with the symptoms for so long must be so awful - thinking about you and remember there IS still hope today - you WILL get that breakthrough, I truly believe that thanks to God - I know it doesn't always help much when in the midst of it and it can be so hard to hold onto hope and belief when something goes on so long - just get plenty of rest and take a step back for now and allow your body time and space, just getting through each day is a massive achievement when feeling that way it really is Sarah. Thinking about you and do keep in touch and let us know how things are going. Another thing maybe worth a try is food testing, I recently had that and found some foods that were intolerable with me and just a change like that can stop the virus from feeding off of things and help with recovery. 

Craig

Hi Sarah, gosh, so sorry to hear that you have had to leave work completely.... Mine just sacked me a couple of months back!🙄 I'm at about 20 months in. And I would say year 2 has been a lot better for me. I still get crusty days where I'm not as great, don't have as much energy and my mood goes but I just try and ride through it. 

Looking back, have you improved since the beginning, can you do stuff even if you think it's not much?! Because this is a slow old process and if you've been working that's doubly hard. I haven't worked at all since being ill. I do have three boys and a family but I've had a great deal of help so I did get the rest and the mental encouragement. 

I do believe you will get there, take some time for yourself and believe you wil get there. It's hard I know. I get sick of feeling sick!! Like you said I was a mild athlete and am always busy, so it's crippling when you can't do that. But this is temporary, just a blip in your time line. 

Caroline xx

 

Hey Caroline,

So sorry to hear about your job, I can empathise because I have been off work for over a year now and it is highly likely I will be losing my job in the near future too. It is a traumatic thing to go through, especially when it's through ill health. You question all sorts of things, could you have done more to try and be back, etc, but with mono for you Caroline be assured that you have done the right thing taking time off and your health is far more important than work, although it doesn't make it easy to cope with I know. 

Just want to say that perhaps God is working to create a new beginning through this virus for you, maybe He has something amazing and better for you on the work front that will come up at the right time. I really hope and pray that anyway, and also hoping the same for myself - really want to have a purpose and be fit to feel like I'm contributing again - I feel so guilty and shamed at times when I'm not, it's an awful feeling. Thinking about you and just wanted you to know I was a similar position and know how hard it is to mentally and emotionally deal with that. 

Craig

Hi Craig,

thankyou so much for the kind and encouraging words, actually, you're right, I'm not looking back...I'm starting college this September. So hoping to go on and do better things! I'm sure I'll be able to cope with that...my new beginning.

im sorry you too have been off work for a while, it is really hard, you shouldn't feel shamed or guilty Craig. I think you should a counsellor, something you can do from home?! (I have no idea what you actually do) You're awesome on here and make such a difference to people with their recoveries. Maybe you have a new beginning too, this should be your calling.

craig. Your awesome. We all know it

xxx

I am still here. It has been 26 months since I got infected. It has been a very long road. I have worked through most of it. I have vision problems due to the illness. It has changed my life. I am still working. I work 12 hour shifts. I am very weary. I have made some improvements. I hope that you feel better. Continue to rest.

I don't know how you can manage to work through this. 😐

I really have no choice or i lose everything.

Hi Brent,

My daughter is still struggling also, some symptoms have gone, she like you is still working. You two are very brave and determined.

Hi Caroline,

That is amazing you are starting College, good luck with this and really hoping this can be the start of a new and wonderful chapter in your life - I believe that!!

Thank you for your kind words Caroline, I have been trying to do work for home for many months now but just got myself into a rut and don't think I could cope with the stress of my previous job, which was quite a busy leadership role within a third sector organisation. I sometimes worry I will never feel like I can be strong enough to get up in the morning, go to work and cope with all its stresses without feeling overwhelmed with some of the health issues I've had and with confidence again that these things won't bother me. Yes I'm waiting to see a counsellor, have had a few bad experiences with another one recently, so hoping I can find someone who can help me with mindset and everything.

Sorry for offloading my troubles Caroline, I know you know what it's like to go through such a long and hard time where you just don't know if you can make it or not. Any prayers for me at this time always much appreciated!! And I'm so pleased that you are feeling much better Caroline, you have been such a great support to me and others on the forum, YOU are awesome too!!!

Craig xx

Hi Brent,

It is good to see a post from you, I often wonder how you are doing and think about you. It is amazing that you have been able to keep going with work all through this time, you have shown such courage and resilience to do that, I can only imagine how hard that must have been, especially at the worst moments of the illness, I know I had to take extended period out of work because of it and took me a good while to get my confidence in my health back again to be able to cope with work. Hoping that your vision problems improve Brent, I will keep you in my thoughts and prayers and still believe God is working in your situation - just want to reassure you that even after 2 years and more I still feel fragile and different from before, but as the years go on, this feeling faded and my full body resilience returned again, thanks to God - hoping and praying for your full recovery Brent.

Mono too, your daughter is very brave and determined as you say, I really hope that things are getting better for her and for you and your granddaughter and all the family - you have been such a great support to others on the forum and will keep you in my thoughts and prayers.

Craig

How is her sleep? Has her vision been affected?

Hi Brent,

Her vision is OK. Her sleep is different than it was before, she sometimes has a harder time sleeping, Her problems are just not feeling herself and the constant feeling of illness, achiness, nausea and exhaustion.