Hi guys I'm new to this I have recently just been diagnosed with CFS/ ME last year I had a nasty bacteria infection and developed sepsis, since then I feel I'm living as someone else and finding hard to accept the new me and the lifestyle changes to make to help support my fatigue. Would like to talk to people who have experienced similar as it can feel so lonely when people just don't understand.
Many thanks Georgie
Good Morning Hun,
Welcome to our wonderful fibro family forum 
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I have noticed that you haven't locked your post; I have attached the guidlines for how to do this but if you need some help please let me know! You tend to get more responses if you have locked your posts -
healthunlocked.com/fibromya...
Also, can I suggest having a look at our main site as this has loads of helpful tips and stories which can help you to adjust fmauk.org
I completely understand what you mean, it can be such an overwhelming and lonely time and it is important that you surround yourself with people who can pick you up when you're down! This is where we all come in...... How are you feeling today hun? 🌹😘
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Sorry I'm new to all this! And just wasn't sure where to start, thank you for your welcoming message, I've got an infection so have struggled over the last couple of weeks and trying to establish if it infection or my condition and made things difficult at work
That's okay hun, it can take a few weeks to settle in but it's brilliant that you have joined! This forum helps me so much!!
What kind of infection? Have you seen your GP? 🤗🌹
Yeah I'll try and get the hang of it, a UTI which is what I had before when I had sepsis. Seen doctor bit of a nightmare as could have picked it up Thursday but left it! Which then I guess makes me feel worst with my condition I don't want it controlling my life I see my CBT therapist and at moment trying to get balance with work but finding work so hard, and they causing more stress being unsupportative so don't really know where I stand!
Oh right UTI's are the worst!! Do you find that the CBT therapist is helping? Work can be really difficult to manage, but I do work full time if that helps? 🌹😘
Yeah it's not a good one for me, I do love my job but it's very demarding and stressful i teach. Currently they are being unsupportive and making me more stressed and not helping. I'm not sure if I find it helpful at moment as just going through diaries, I don't want to work overload so I don't get me time! I see the OH this week at work
Do you work with your OH? Is there anyone at work that you can speak to about how you are feeling? 🌹😘
Nope nothing. That's the problem no they come in and assess you at work so will see what they say really think it's worst as just no one understands, effects my cognitive ability quite a bit and forgetting things x
Have you tried writing down everything you want to say before hand? 🌹😘
Yeah sometimes it's hard in my job, never mind just struggling more with dealing on day to day basis and also causing relationship breakdown with partner, someone shouldn't be defined by their illness but it's so hard when you can't help it but have no energy for fall asleep
Or not be able to do simple tasks
I completely know what you mean hun it can be so difficult and make you feel so awful xxx
What are your coping strategies how do you get through it?
To be honest hun, sometimes you don't but my main coping strategy is this forum and making sure that I have something else to focus on! Do you have any hobbies? 🌹😘
I used to play football and coach, but now I can't think of it all together and slowly lost the love of it, need to find something a little less energy but social, it's hit me more this week with an infection so think I need to just be in bubble wrap and it's all good!! I've been a bit of a bum watching a series on Netflix fist time I've really concentrated on the TV, as I say I could be worst think I suffer from quite a bit of aniexty my body reacts but I don't feel like I'm anoxous or anything in my head
What have you been watching on Netflix? Yeah It's really important that you find something to focus on, I read or watch a series on Netflix and try and go to the gym. Work also distracts me but sometimes that can be a burden in itself 💜💙
Riverdale lol it's actually really good, I'm not motivated to go gym I get tired so easily and would need a gym buddy but where my social life is pants it's like your on your own! I'll have to try and find something to really focus xx
Oh that is on my list to watch!! Ah I am not feeling the gym now haha just got changed ready though 
xxx
You must!! I've gone to lay down had a very lazy week but think my infection just hit me for 6!
I went and now running a nice relaxing bath as a treat haha! Ah you make sure you put your feet up hun xxx
Hi I had sepsi in 2011 after a trip to the dentist my life was stollen from me from that day 😢 We're all diferent but its trigger my immune system and things have never been the same . You will have good days and bad I have done pain clinics etc , pacing is the best advice I can give you don't push yourself be kind to you and learn to say no !
I wish I could turn the clock nback for both of us but I can't
Gentle hugs
Shadow
Nice to hear from you how bad was your sepisis, I have never felt the way I did that day when I went into septic shock I honestly felt like I was dying (well I was!) but the feeling was indescribable in words and others to understand
Yes we were dying you could see even my hair shrivelling up, I couldn’t walk for almost 5 weeks my liver is wrecked and my life was literally changed forever, I don’t even look like me anymore , it has meant an enormous change to me and my children who are now adults but they have had to put there lives on hold to take care of me. Although that is now nearly at an end I hope as they are to young and I won’t be a burden to them . I have auto immune issues coming at me from all directions now and I use a wheelchair and I can still drive but not far as the fatigue sets in but I will carry on fighting this with every breadth I have left .
Gentle hugs ,
Chris
I'm sorry to hear that and admire your determination, it's good to speak to someone that has experienced the way I have felt, I now have quite a fear over it and going into hospital, it's good you have your family support by your side and I'm sure your not a burden they would want to be there for you. Do you suffer from any heart palpations at all, ever since my illness my resting heart rate at times has been extremely high?
Sending hugs it's a nice reminder that no matter what we can carry on x
Yes I did have heart palpations whenever I got in stressful situations in work with the worry of not being me any more and memory issues things came to a head 18 months after my actual hospitalisation , my body came to a. Grinding halt I think if I had not pushed myself and had been able to recuperate properly and the world hadnt demanded that I return to work and be well when I wasn't I might of ,got well . But there was no one to look after me then , and I at that point give in and realised I wasn't super woman anymore , which had been a nickname at a previous nickname . I try and listen to my body know ,the advice I got from this site from TheAuthor and other on this site like ginns ,rosewine badger ,foggy smilealot the friendship back in 2014 was a amazing they taught me to look after myself and care about me , those were hard lessons to learn. Every know and then I think I don't need thi site and the people here and then I slip and am poorly again , so it back to basics and rest eat healthily and remove what has started to stress me . If you haven't been on a fatigue clinic ask you GP , contact your local "mind " charity ask about "mindfulness" courses .take things steady , and start to think about your needs by doing so you help everyone who is important to you , as if you rest and pace , and be "mindful " of your needs you and your family will function better and laughter will come back , your not going to be the old you again but you are going to find a new you !
Gentle hugs
Be kind to yourself .
Chris X
Cfs is the worst - your on a constant cycle of feeling tired and no matter how much you sleep you wake up feeling just as bad and your immune system is low so you end up picking up everything going which of course makes you feel even worse.
You learn to cope - you try and pace yourself and conserve energy but it’s a social life killer
I spend many a night lying in bed thinking about stuff when I would prefer to be asleep but my body say you have had an hour wake up now- the worst is when you fall back to sleep.
It’s a long road and well it sucks.
Anyway could be worse I guess lol
CFS GP advice & general experience
first time at me cfs fibro group today
Fibro and CFS
CFS/ME and Fibro
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