10 months in...

Thankyou for your message! Yes me too, I often find I feel weirdly better for most of a workday compared to days off. It's a struggle by the end by I guess if I keep practicing (but not overdoing!) I'm also lucky my work let me do a graduated return and also work from home on some days.

Healthy wishes to you too!

Rosie

Thankyou Rhondda! I found your story encouraging! I think I'm going in the right direction but it's definitely a 'zig-zag' improvement not a straight line! My latest experiment is to get up and go to bed at the same time all week - to make sure I sleep enough on work nights! Thanks for your message.

Healthy wishes

Rosie

Thanks so much for the lovely message! Yes I'd love to hear what you think helped you if you don't mind. Or direct me towards a post if you've written it before?

Thanks

Rosie

Hi Rosie,

Yes for sure, it's just general stuff really nothing maybe you've not heard before, but a good multi-vitamin (such as Immunace Extra) is really important, a B complex supplement and Co-enzyme Q10 are good also for energy. A high dose of Vitamin C (1000mg per day) and also immune boosting herbs like siberian ginseng, echinicea and oregano I believe can be helpful. Worth a try anyway but don't spend loads of money on it.

Craig

Great, many thanks! I'll take a look at those things. How long did it take you to feel better? I went back to work for three months after my 1st week ill which made it much worse. It seemed to attack my insides after that and I couldn't keep any food down for a month was tube fed in hospital. So just being able to eat and well enough to live independently feels soooo much better and I try not to compare myself to 'normal' people... I still can't drive cos I get patches of being really lightheaded, did you have anything like that?

Wow Rosie, so glad you shared! The virus has also hit my stomach and digestive system. How did you transition to real food. I was under weight when I got the virus and now I've lost more . I drink smoothies. I'm eating mostly soft food. Still no appetite I force myself to eat.

Do you have any gi issues that are lingering?

Prayers, Rhonda

Rosie, I didn't know what was wrong and tried just doing more. I pushed myself still I just dropped! Our daughter had to care for me for four weeks after diagnosed.

Naturopath doc gave me vitamin therapy and added glutathione to it. I would get a bit better then crash if could not get therapy.

Awful pain. Muscular and joint. Nausea, vomiting, reflux and extreme weakness. I am getting a bit stronger now without vitamin therapy. So I a hopeful it is my body working on its own. I take digestive enzymes and probiotics.

I've been in bed so much. I had a rib pop out of place. More than one. Started Chiropractic treatments which has helped with back/shoulder pain.

My tonsils still have white spots. No sore throat.

Sorry so long.

Rhonda

It's so good to share similar experiences isn't it! Yeah I lost over a stone in a fortnight then a few more kilos next few weeks while tube fed as could only tolerate 40ml liquid feed in drips per hour. I was lucky that I had excellent advice from a dietician when leaving hospital and I was instructed to follow a low-fibre, semi-liquid, relatively low-fat diet. She sent me print outs of recommended foods. It went against what i'd typically choose as I tend to choose healthy veg etc but I couldn't keep that down. I started on half cups of totally smooth soups with grated cheese, rolo yoghurts (great for calories without fibre!), ice cream, milk smoothies, only eating small amounts but every couple hours. Gradually could move onto skinned puréed fruit and very digestible veg (basically the orange ones..squash, carrots. Peeled puréed potatos, poached egg). That was all I could do for about a month. Bits of puréed chicken in soups. Leeks and other fibrous veg were agonising. I was really lucky and had parents cooking for me as wouldn't have managed at start. Anyway I gradually managed increasing variety and texture of food and now my eating is very normal although I did then go through about six weeks when I was ravenous and just ate and ate, put normal weight back on! Now if I'm an hour late with a meal I get a migraine and have to eat and snack v regularly but not worrying about that at mo as my health is top priority!

I do get reflux sometimes still but probitics made it ten times worse so off that. Also found stress played a major part in exacerbating symptoms and when I had a bad day when I had some stressful news and events the nausea and retching came back but I did loads of deep breathing and mindfulness for a few days and reverted to my 'post-hospital' diet and it gradually subsided away. I don't know if any of that is helpful but I basically learned that priority is to get enough calories to function and gradually work on 'healthy' after. I went to a nutritionist too and she told me all the 'healthy eating' cliches that were too fibrous for me and put me on the probitics that made me ill again so I'd say that was a wrong move!

Thank you so much! I have been adding in avocado and it has caused me pain. Must be too much fiber.

I have food sensitives so no dairy, eggs or chicken for me.

Thanks for valuable information!

Please keep us updated and hope your complete recovery greets you soon!

Rhonda

Oh that is difficult! I'm coeliac so can't have gluten. I've not touched gluten in years, I'm very strict. I thought dairy made me worse but that turned out to be wrong! I like the dairy free ice cream Swedish Glacé if you can have that. Have you looked at the fodmap diet? That's useful for digestible foods. What are your GI issues?

Oh and also the consultant told me there's a very strong feedback loop between brain and digestive system. The vagus nerve. So that's why the physical relaxation is so important in healing as it calms your autonomic nervous system (unconscious processes). I was getting stressed about my symptoms and when the body is stressed it doesn't digest properly/vomits it's part of the fight or flight response and it was making a vicious cycle that was probably the biggest breakthrough for me.

I know about the gut and brain connections. I have always had nausea or diarrhea when stressed. The vagus nerve apparently is the connection as you said. I also get palpitations. Do you?

I try not to get stressed. I get overwhelmed easily since I have the virus.

My emotions hit me hard.

So good to share with others who understand!

I try for distraction but I get overwhelmed so easily it difficult to have a distraction.

Rhonda

It's horrible trying to calm body down when getting scary symptoms. I don't think anyone who hasn't been through it can understand how hard it is, they'd be terrified if they had our symptoms! But we have to learn to live with them.

I rarely get palpitations, only when severely stressed luckily and if I do the breathing I can calm it down generally. Has anyone else had migraines with the glandular fever?

Haven't read that they have migraines. Headaches are a common symptom. I had gone outside for a walk in the sunshine and hadn't been out in several days and I got a migraine. It lasted most of the afternoon.

I thought maybe the light triggered it.

It is not easy to not stress with all the symptoms and loss of independence in so many ways to

Rhonda

Seems to be mostly overdoing it or not eating/drinking that triggers mine. Though I've driven myself mad trying to analyse all the patterns and it's not always predictable/preventable but I think generally kinda zigzagging upwards... have you been unwell long?

With my food sensitives I have struggled. I had just eaten small amts of beans veggies and fruit for about 3 years. My gi issues have been with me for years. Didn't know it was from food and emotions for years.

I am so excited you joined the forum!

Your guidance is a blessing and just someone who understands gi issues!

I really feel I'm improving but this body is so out of shape. I bathed and washed my hair this am. My daughter dried it. I was drained and slept for 2 hrs. But was ok after rest.

I've just started doind small amt of dishes and laundry. Which I am so thankful to be able to do a few chores!

Rhonda

Poor you, I was like that in July and August, a shower would be all I could manage in a day. Are you getting enough calories to get enough energy? Can you access any medical advice to help you get that? I guess you've been tested for GI problems?

Oh and thanks for the welcome! I'm really excited to find it - I wish I'd found it sooner when I was the most unwell - I felt so alone! I don't want anyone else to suffer but it is such a reclined to speak to people who know what it's like - the 'invisibility' of this illness makes people underestimate I think or think it's a failure to pull ourselves together!!

When there is no visible evidence of why you are hurting or so sick people don't understand. The ines who had a lighter case don't understand either. Well meaning people cause us stress.

I feel the worst is behind me and I will get stronger day by day.

I have not had gi check. I made an appointment but was too sick to go. Medical doc in emergency said rest, eat and drink.

I've had gi issues as long as I can remember.

I am trying not to focus on them. Knowing they always have improved as stress decreased. When feeling up to it I may go for test but not for a while.

I am thinking I may have an ulcer. I have been using castor oil packs on abdomen. Naturopath doc recommended. It is supposed to boost immune system to fight virus. I is a detox for liver too she said.

I have no medical device but my family is very supportive. Thank God!

Am staying w daughter for now. Hopeful to be able to go hpme in a few weeks!

Rhonda

Hi Rosie,

What a terrible time you've had, thinking about you and just hoping things settle down and get much better soon. Everyone's story and journey with this is different, for me I was off work for 5 months and then came back on a phased return, still took me quite a while after that to get back working full time. Also had to have a few weeks off about three months after the 5 months because of a bit of a relapse.

Yes I think I did used to feel lightheaded at times with the virus from what I can remember, just hoping all these symptoms settle down for you. I really believe that you will get through it, hang in there your full energy and independence will come back again, you have definitely weathered the worst period and as you say it's zig-zag rather than a smooth path to recovery often so don't panic if there's spells where you feel it's going backwards....it's not it's just the way it goes with this. Overall you will still be moving in the right direction even if it doesn't always feel that way.

Thinking of you Rosie and Rhonda and hang in there,

Craig

Craig thanks so much for the lovely message, it brought tears to my eyes. Hearing your story is really encouraging. Did you struggle with the emotional side at all or was that ok for you?

Thanks so much

Rosie

Hi Rosie,

Oh it was such an emotional rollercoaster the whole thing, I definitely struggled with that and think most people do! Because you question all kind of things why you're not getting better quickly and how you are going to cope and deal with responsibilities, etc. I found it an extremely worrying and mentally and emotionally draining time as well as physically tiring, so it hits you from all angles!

I am sure you will be able to relate to that going through what you have been through, but again the good news is that the emotional side gets better when physically you feel more like yourself again, and stability in all areas of your life definitely will come back!

You take care and just take it a day at a time and don't look too far ahead, can only deal with each day and eventually the day comes when you feel like your strength and health is coming back again and it's a marvellous feeling when that happens, and it will happen for you too Rosie I really believe!

Craig

 

Thankyou Craig, much appreciated :-)