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So it's been about just under a month since my last post and I guess i'm feeling better now then I was at xmas...
That's not to say it's been uneventful I had what can only probably be described as a complete and utter breakdown around new years eve, in honesty I just couldn't stop crying I was just so depressed at how I was feeling. Mainly because early in December and late November (around the time of my first post) I was feeling the best I had done since getting mono (about 6 months ago) then i got a cold which brought me back down and everytime I get a major setback it gets harder rather then easier really. It's not even necessarily how the virus is making me feel (which is dreadful) because i'm pretty much used to it by now, it's just missing out on my life really. Like i'm in a band and haven't been able to gig with them since getting ill, i'm worried about university and if i'm still ill come September i'm probably going to have to leave because I can't see them letting me have 2 years off then continuing with the course, and just generally missing getting to spend time with my friends and go out and do things.
Speaking of friends... In my first post I said about how much of a good support structure I had. Well in reflection that isn't really the case. For my family it is after not understanding at the start they now completely get it and are 100% supportive. But it just feels like none of my friends really want to speak to me and i can go weeks without hearing from anyone outside of family. There might be the occasional message in a group chat or something but an actual conversation is very rare. So I had a massive go at them. Well first I snapped at the band, they'd arranged for a photoshoot thing for this single we've been wanting to release since last summer and they didn't give me any heads up about it and I just wasn't up for it at all and it was just the final straw and i went mental at them. Probably unfairly in hindsight but I was just so frustrated that none of them seemed to realise how sh!t this virus makes us feel and that if i cancel plans it isn't because I want to. Well eventually they seemed to understand and I'd calmed down and then other friends managed to get my back up aswell... I'd arranged to go the pub that's like a minutes drive from mine with a few friends to watch a football match because I was feeling pretty good, but after arguing with the band the stress had made me feel awful again so I had to cancel and they did what they always do and made a snide comment like "didn't expect that" which they all laughed at. It's like they think I like being the person who always to cancel? Like I choose to feel like this? Well they hadn't been supportive at all (because in fairness the band kinda has and hasn't) so i again went mental and basically told them all they're sh!t friends because in honesty they were. I think collectively between the 3 of them i'd been asked twice in 6 months about how i'm coping etc. Two of them ignored my rant but one of them messaged me saying he thought I was out of order then after having an argument with him he seemed to understand and apologised saying he didn't realise how bad it was, which I guess is fair. But at the same time it's been 6 months and I very rarely leave the house and had to take a year out of uni etc it isn't going to be good is it?
That was about 2-3 weeks ago now and I am back on speaking terms with them all. To be honest the way I went about letting them know exactly how I feel was probably quite argumentative and toxic but I still stand by it as they needed to know and some people just need to be told really. I don't hold any grudges over them as pretty much all of them had apologised, said they didn't realise it was that bad etc, and i get that people have their own lives and they're not constantly thinking about how i'm feeling etc, but it's not like I expect that. It would've just been nice to hear from them in the past 6 months.
Aswell after the discussion with the band they're going to be getting in a "temporary replacement bassist", which I had been saying they should do for months if they want to carry on gigging, but I think they've finally realised that I could be ill for a long time. Despite that I guess i'm still not happy with it, I worry that if i'm ill for another 6 months ( or longer) they'll just kick me out and get this other guy to be the permanent bass player, which I mean I wouldn't blame them but it is still an unpleasant thought. And now they've started to arrange gigs again and hearing them talk about it and how excited they are etc just makes me feel left out and frustrated because it's the one thing I miss more then anything else.
And I guess the last of the negative things that have happened recently is that it just feels like my friends spend more time talking to my ex then me. After we broke up she seems to have joined our "friendship group" (for lack of a better term) and they'll ocassionally do stuff like go the pub or go round someones house or something and i'm just stuck in my house, left out. I know it isn't as black and white as that but it's just added stress on top of everything else really.
However despite all the negatives I definitely feel the best I have done since xmas. I've started to do yoga (very lightly) and go for walks (only to the end of my street and back atm which is like 5 minutes), when I feel upto it, and did quite a lot of "research" on post viral fatigue. It seems like that post viral and CFS are very similar. Not to scare anyone or anything because the thought of CFS is terrifying honestly but just feels like if i can get a good understanding of CFS then I can get an understanding of post viral and maybe try some things to get better. Well in terms of what's wrong with my body right now it's a weird mixture of both mental and physical symptoms that all seem to be made worse by stress and negative thoughts, but that doesn't mean that thinking positive will just cure me, but it will definitely help. I don't wanna get too much into the science of it but two of the things i thought were quite significant were that firstly that the brain fog/headaches were caused by some sort of constant seizure in the brain which i'd say i can definitely feel if i'm not doing anything; and the other is that about 20% of our mitochondria (the things that make "energy" for the body) don't function properly which is why we feel so fatigued and have no stamina. However there does seem to be some sort of method that should be able to help. Well if it helps people with CFS which is definitely worse then what I've got anyway, then surely it should help me too right? Well it's more of a combination of methods but the main two are called "pacing" and "GET" (graded exercise therapy). Pacing is where you just rest really and avoid doing anything that might make us feeling worse which is definitely helpful and needed but the way I see it is that I'm never going to get better if i don't try to (slowly and carefully) push my body. Which leads us onto graded exercise therapy which sounds awful and I agree it does. By that what i mean is just trying to push your body but not too much, say like just before you'd have a "crash" which is definitely hard to do and I guess alot of it is knowing your body and it's limits, which again is hard because somedays can be worse then others for no apparent reason. And by exercise I don't mean running or weight lifting or anything crazy like that, like simply just walking. Because you obviously don't want to push your body too much cause you'll just crash and be back at square 1. I mean that could be a load of rubbish but I found it all from different sources and I guess only time will tell if it will help me or not.
Finally, I'd say destressing is so important. I'm definitely not perfect at this in the slightest but I am trying my best. Yoga definitely helps if you feel upto it, it just completely relaxes you it is honestly amazing. Meditating too. Herbal teas are also really relaxing and help to destress, especially green tea that really helps with anxiety and i'd much rather have a mug of green tea over some medication personally. Because i've had medication in the past and all it did for me was make me put on weight, but it's whatever works for you end of the day. I've also been thinking about acupuncture too but haven't looked into it too much honestly. Also in terms of uplifting things there's of course this forum and the various stories of people who have fully recovered from mono, and I can only thank you all so much it would be so easy to just never visit this forum again but you have taken the time to post your recovery stories and reply to our questions etc so thank you so so much. Another inspirational story that i've found too is Roger Black. He was an olympic athlete and during the peak of his career he got glandular fever and couldn't compete for 1 and a half years but he managed to make a full recovery and i'm pretty sure he managed to win a silver medal after that, so i'd definitely say if you want to read something upbeat look up his story it's inspiring and relatable.
P.S I'm sorry I didn't reply to anyones replies on my last post, I let my anxiety get the better of me and get nervous about replying which i know is silly and I will definitely reply to people this time, but know for those that did reply I read them all and thank you for taking the time out of your day to reply to my post. Also sorry this is so long lol.
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