Glandular fever

[SunshineCake]

I'm about ten days on from diagnosis. Been in bed a week since home from hospital. Got up briefly yesterday. Feeling mentally worse than physically. I want to get up, strip dds bed and put a wash on. Dh is gone for the day dropping off dd at uni. The boys are going out. No one to walk the dog. I won't risk walking her but I'm worried about the risk to my physical health doing too much too soon, doctor said no running for six weeks but I didn't get any other advice, but mentally I'm in a rubbish place and running and getting the house clean would be my usual go to.I'm definitely not run until I'm allowed.

If you've had GF can you tell me your experiences so I can make a judgement please. Thank you.

Thanks @CloudsOfCeonothus. While it's not great news, at least now I have a barometer to work with. What I am struggling with as if I don't try, how will I know? But so far, I have folded up some washing, badly, while sat on the floor and that wore me out. Tskig

Taking pillowcases off, all of two, wore me out too.

Yep, been there I can now only wrestle a pillowcase or two off once or twice a year whilst in bed. The rest of the year I'm too weak :-(

Because I didn't have the knowledge, education & support in the beginning & pushed too far.

Your life could be different 🤞🏻

Oh @CloudsOfCeonothus . That sounds so difficult.

This thread has been a God send. I have learnt more than the NHS site. That doesn't say a lot and I got no advice in hospital. I was only told not to run for six weeks as I asked when I could again.

More pain so I will just sit. I had forgotten I did tidy my dressing table as well this morning but it only took a few minutes and I sat down a lot. I think I'll watch Strictly then go to bed.

Thank you Sunshine I could weep when I think of the running I just popped out to do, because cabin fever I felt better, honest!

So much I could share/advise if I had the energy, but 8 years on I still have to limit screen time.

I'm absolutely sure you will be fine. The discipline is more mentally challenging than anyone realises.

If you're bored, keep a diary logging your activity & symptoms (i.e those little tidying jobs you do here & there) so that you can see how much you're doing & whether it results in symptoms.

It will feel good when you're eventually able to increase your movement. You can look back & see how far you've come. Always add your gratitude's at the end of the day.

I'm thinking I might stay in bed longer tomorrow and do all my online Christmas shopping.

I'm sorry you have had and still are having a tough time @CloudsOfCeonothus.

@CloudsOfCeonothus how old were you when you caught GF ? I thought it was just something teenagers got!

I am still in bed. Given up on the getting in the garden plan. I really am having to prioritise what I do . Today's plan is to sit in the pantry and get out all the ingredients I have to make my Christmas mincemeat so I can see what dh needs to go and buy. I could cry. Normally be now I've run 5-10km, walked the dog, put a wash on, had a shower and planned dinner. So far today I've brushed my teeth, picked up the post, that's it.

Doing just one thing is too much so I concede defeat. I won't be going outside today. Maybe next week.

Thank you for your good wishes Sunshine

This is my really bad time of year and my ability to reply (or indeed to do anything constructive) is severely erratic and limited. Apologies.

It's believed I was in my teens when I first got GF (as most do) as that's when I had lots of long term throat infections + my fatigue started. I unfortunately wasn't tested.

The virus that causes glandular fever (Epstein Barr Virus) reactivated when I was 40 & I tested positive for a current infection.

www.cdc.gov/epstein-barr/index.html There's more info here. The U.S. seem to take GF (or mono as they call it) more seriously. I think I've got this right, but my cognition is very limited.

I know it's really hard on your mental health when this hits and you feel like death, but just keep resting like you have been.

Gently occupy yourself with little (non-stressful) tasks from bed so you don't feel completely useless. I think us women find it hard not to do anything in the home. I spent too much time stressing about this And don't compare yourself to what you would have done by now!

For now it's out of your hands and you just need to rely on those around you to take the slack while your body recovers.

Wishing you well for your recovery. x

Nice to see you again @CloudsOfCeonothus. I think it's a disease where we don't know enough about it. Two of my DC have had it and I think they were lucky not to have long term consequences, especially as they were poorly with it. DS in hospital for a week. Same as me.

Today I went with dh to walk the dog. Tbh it was too much, and I think I knew it was and should have turned back, but my mental health has taken such a battering (other issues not helping) that I needed to go. I won't again until I feel much better and there will definitely be no running in nine days time when I was allowed. Blood tests on Tuesday so I'll be staying in until then. The tiredness is annoying but the pain is the more scary bit.

Hi everyone

I'm starting to feel a bit better. I can get up each day. Doing a little with sensible rests. Next week I am allowed to run but tbh I doubt I'll be ready so not planning to. I have been having a five minute walk and as it left me tired I am wondering what to do. Do I keep with the walk each day until the day I am not tired and try six minutes or do I give up and try again the next week? You guys are much more helpful for getting info than anywhere else ! Thank you.

TBH you need to put exercise on the back burner for a while yet. Walking as far as you can manage for a bit of fresh air is fine, but if you push yourself too hard at this point you could end up doing yourself no favours at all. I know for runners and people who love the gym, not exercising can be as torturous as it is for those of us who struggle to actually do it!! However, taking care of your body when it’s taken a hit like this means being gentle with it.

So I’d say shelve the walks altogether if it’s causing you pain. Staying active within the house and garden so that you can stop and take a breather whenever you need it will be more beneficial than pushing yourself to do a certain number of minutes outside the house.

Thank you. I'm allowed to run next Tuesday but I 100% won't be!

GOOD! Take care of yourself. A lot of times the autoimmune conditions and Chronic fatigue etc tend to hit people who are very driven and hard working. Almost like your body’s way of saying STOP! Listen to your body and only do what feels ok and comfortable for you.

I really struggled yesterday. I think I am feeling the lack of being able to run as I had been using it lately to have time on my own. I am finding I want to be alone more and it is hard in the house to get that. I also can't just take the dog out when I want thinking time too. Running has been great for my mental health and losing weight but it has become more important as it gives me time alone to think.

It is interesting what you say as when the kids were small I would tend to get a bit poorly in school holidays. Slow down, time to be ill!

Some excellent advice from @RaisedByPangolins there

!!!!!! Look at your energy delivery ability like a battery !!!!!!

If you start introducing exercise into your day, it will drain your energy battery down very quickly and might cause you pain and side effects. This is your body's way of telling you you're running out and may even tip you into anaerobic energy. (This is what happens with M.E.).

If you continue to balance rest, with pottering around the home (& maybe walking in the garden) gently, this is your exercise! To a runner, it won't seem like it, but for now this is enough.

I understand your cabin fever (I really do!). Epsom salt baths with a good book and a locked door might be a good substitution for alone time for now. V important to have.

Research the parasympathetic system and practise all the ways to get into it. This aids recovery & promotes calm. (Much better than fretting about weight gain, de-conditioning and no exercise )

Surrender to it for now.

I tagged you into another GF thread for more helpful snippets.

By exercise I mean I am walking to the end of the road to meet ddog and dh and then back. Five minutes max.

I'm struggling as I can barely do anything without tiredness or pain so am I supposed to be back in bed ?

Sorry posted without reading everything. Just had a strop at dh.

Thank you. I'll try to be a better patient.

Rest, rest, rest! I had GF at 18. I now have CFS/ME from it. I'm 29 this year.

Glandular fever can be an absolute arse of an illness. I had it when I was 18, ended up in hospital with hepatitis (GF really knocked around my liver) and a very enlarged spleen for 10 days. Very high risk of my spleen rupturing.

Once I got through that, recovery took a solid 6 months to begin to feel ok. And I had age on my side. What I found helped was weekly B12 injections, and when I could force myself to eat, mashed veggies or soup or green smoothies or soft fruits, and very limited meat. No alcohol for 2 years thanks to liver damage.

And so much sleep/rest. Seriously, you cannot underestimate how much rest you need. It's really the only treatment option. If you push yourself, you will end up risking long term complications.

Exercise for me was a no go for the first 3 months, then a very slow increase. Gentle walking only for the next 6 months. As in 10 minute walks gradually building up to 30 mins.

It was a painful 12 months to be honest, especially no booze from 18 to 20 and very limited movement, but I did everything right and had no long term complications.

That's too much exercise too soon Sunshine. Sorry.

If you are still experiencing fatigue & pain, then yes, the majority of your day should be in bed (or tucked up warm on a quiet sofa, if you feel up to it).

Replace the word 'exercise' with 'movement'. You are aiming to repeat the same amount of 'movement' each day, without triggering any symptoms.

When you can do that reliably for 1-2 weeks, you add on a bit more & repeat. Slowly.

It's really hard. Be kind to your body & your mind. You'll get there, but keep in your mind we're talking months, not weeks.

Read this please. V different scenario, but superb advice. You need to recognise false energy, so that you don't push yourself out of your energy envelope without realising.

www.mumsnet.com/Talk/am_i_being_unreasonable/4371623-Post-viral-Fatigue-GF-help-me-get-help-from-GP?pg=1

I'll try to be a better patient.

Well, when you've worked that out, perhaps you can give me tips

After 8 eight years, I still cock up & go out of my energy envelope, triggering pain + relapses.

It's hard when we're active women who are used to getting stuff done!