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Chronic fatigue and grieving my old life

Hi I've been diagnosed with chronic fatigue following Epstein-Bar virus and it's been 9 months so far and has completely ruined my life and everything I've worked so hard for. It took seeing seven different GPs to just be told there is nothing they can do for me and I just want to feel listened to, not to be told by a specialist that I talk to much and I that I was 'exaggerating being tired'. I've been told I'm just lazy sleeping 20 hours a day when I went from playing 10 hours of soccer and high level rugby each week, studying mechanical space engineering, competing and winning in startup business pitch competitions. Since the diagnosis I've stopped everything and quit my job, just barely holding onto my scholarships for 3 subjects and dropped my space elective to stay in uni. Socially I've also been around less and it feels like a lot of my friendships were just transactional and now that I can't be the one making an effort to go out and do things all they time they just won't check up on me. I've realised I am nothing without my health. It's not just physical exhaustion but the mental, my brain fog gets so bad I forget things all the time now and don't have the mental or physical capacity for basic tasks. I usually am the energetic bubbly one but now I'm just exhausted every day without fail, without getting better. It could go on for another 2 years and it honestly feels like I'm grieving my old personality and all the plans I had like to go on exchange, play NPL, work on my startup and get an internship. Every day and I'm scared I won't ever get over this or even how to get through another year of this. I could try just focussing on the more reserved things I like to do like art and just being in nature but if I did that and just focussed on resting I'd have to defer and I can't move back home.

Lemons
LemonsPosted 13-11-2024 11:26 PM

Comments

 
Zig_RO
Zig_ROPosted 14-11-2024 09:59 PM

Hi @Lemons

I wanted to take a moment and thank you for your post, it's really amazing that you've found this community and feel comfortable sharing what has been happening for you recently 🙂 I want you to be proud of the steps you're taking towards your well-being, it can be a really challenging thing to do and i wanted to commend you on this 🙂 

From what I've read, I can see that a lot of things in your life have been affected by your chronic fatigue. Firstly I want you to know that nothing that's happened is your fault, nor are you to blame. I'm curious to know whether or not you may be in need of any form of financial support while you navigate this period in your life? 

I'm also curious to know if you have any self-care that has been helping you through this period in your life, this could be major, such as seeking external support or minor, such as watching a comforting show. Anything that brings a calming and relaxing mindset. 

I also wanted to share this link to the service Emerge, who offer a supportive space for people living with ME/CFS, long COVID and their carers and families. They also have an Online community as well as a helpline you can call for further support. 

Hope to hear from you soon 🙂 

 
sunnygirl606
sunnygirl606Posted 14-11-2024 02:06 PM

Hi @Lemons 

 

Thank you for sharing this with us, this sounds really hard to go through as it seems like your life took a 180.

 

I was like you, very active and social but then i got diagnosed with rheumatoid arthritis (RA). I couldn't run, walk. I had no energy to go out because RA was so prominent in my life that it sucked everything out of me. I felt like this was my new normal and that my life would just be endless appointments, swollen joints and naps. Thankfully, we found medication that worked for me and my RA is not as prominent in my life as it used be. I play basketball and football now, i go for walks with my cousin's dog and i can see my friends more often now. This took around 7 years for me.

 

Like what @MagsMae said, there is light at the end of the tunnel. It is really hard what you are going through and i know that saying 'it will get better' may seem redundant now, but it really does get better. It sucks that we can't control the amount of time it takes for our bodies to heal but we can help ourselves by resting when we can and when our body needs it.

 

You are not lazy and you are not exaggerating at all. What you are feeling is completely valid and you know your own body better than anyone else. Is there someone you are able to bring along to your appointments to help advocate for you and your symptoms? Often doctors would dismiss me and my symptoms but it occured less when i had my parent or grandparent there to 'confirm' what i was going through.

 

I think doing art and being in nature is something that you should continue to do when you can. It helped me feel better when i was really sick to do things i could do instead of just focusing on what i couldn't do.

 

I wish you all the best 💚

 

 

 

 

 
 
Lemons
LemonsPosted 14-11-2024 11:18 PM

Thanks for trying to help me accept things and think about what I can do instead. I'm just in my sleepy girl era.

 
MagsMae
MagsMaePosted 14-11-2024 01:39 PM

Hey @Lemons 

 

I am so sorry to hear you are going through this. I admire you for showing the courage to reach out and share your experience. Heath is something we often take for granted until we loose it. Just thought I would start with the fact that you are not alone! I was drawn to your post as I have been through something similar. A few years ago my health was at its lowest. I was suffering with chronic fatigue, a weak immune system and severe athsma. This came on very suddenly, and experienced similar feelings to you, where I grieved my old life when I was so active and healthy. I sympathise with how you don’t feel listened to by your doctors, I am so sorry to hear this. I went to numerous doctors who did very little, until I found a practitioner who finally listened to me. Together we got to the root cause. Turns out I was suffering from hypothyroidism. A few years later, with lots of hard work and healing, my health has completely transformed. I am now studying at uni, playing sport and socialising every day. I know not everyones story is the same, but I just want to let you know that there is light at the end of the tunnel. As hopeless as you feel right now, it will get better.

 

Make sure you don’t rush or put pressure on yourself in your healing process. In the current world there is so much pressure on young people to go, go go. To have a degree and a job by a certain age. When suffering a long term condition, It may mean you may have to rest for a bit, allow your body to fully heal. Spending time in nature is something I can definitely recommend. 

 

I wish you all the best and currently manifesting healing for you ðŸ’›ðŸ’›

 
 
Lemons
LemonsPosted 14-11-2024 11:02 PM

Thanks @MagsMae thanks for your story I’m starting to agree now that it might not be the end of the world if I graduate 6 months or a year later than my peers and do 3 subjects instead of 4 a sem. I’ve also kind of noticed I enjoy my subjects more when I can take them slower and appreciate the learning process. I saw a really amazing GP today she really took the time to explain things to me and also changed the pill that I was on for another condition I was also diagnosed with this year. She validated the insane nausea and mood swings I was experiencing and that maybe crying uncontrollably for 5 hours about a minor thing wasn’t normal for me. Talking with this GP made me feel a bit better and hopefully will help. Thanks again and I’ll try take on what you said about not pressuring myself - I was studying with a friend today and even though we planned to do something and I just couldn’t I had to go sleep the rest of the day I genuinely felt she just wanted me to feel better and was still keen to catch up later. I’m just worried now when I interact with people I’m an empty shell I don’t feel connected or present talking to people when I’m just so exhausted.

 
 
 
MagsMae
MagsMaePosted 18-11-2024 08:29 AM

Exactly @Lemons ! Life isn’t a race, take it as slow as you need to ensure you take care of yourself in the process and don’t burn out. I’m so glad you found someone who is finally listening and not undermining your problems! It truly makes such a difference when you feel heard and validated. Your true friends should understand that this is a difficult time for you, and understand that you aren’t feeling as energetic as you used to be. This time may be able to help you distinguish who your real friends are that truly care about your wellbeing. Please understand that you are not an empty shell, you are just exhausted. Your excitable and bubbly self will get stronger as you recover. All the best ðŸ’›

 
Bel_RO
Bel_ROPosted 14-11-2024 11:20 AM

Hey @Lemons 

Welcome to ReachOut! Thank you for sharing what you're going through with the community. It sounds like experiencing chronic fatigue has had a major effect on your life and wellbeing, being unable to get through basic tasks or engage in activities and competitions that you enjoyed. It is completely valid and understandable that this has made you grieve your old personality and all the plans you had for the future. No doubt that this has been really difficult for you to manage and process. I'd like to take a moment here to also acknowledge your strengths. Sharing your experience has shown courage and I can see that you're also thinking about things that you could focus on, which highlights your resilience, self-awareness and help-seeking! You should be so proud of yourself!! 

 

I can hear that your experience with professionals has been difficult and has left you feeling unheard and dismissed. This would be incredibly difficult for you and upsetting! It sounds like you've also been less social, which has made you reflect on your friendships, noticing that your friends are not checking up on you. This would've been incredibly heartbreaking. I can also see that experiencing chronic fatigue has made you feel exhausted both physically and mentally. I am curious to know if you are seeing a professional for support around this? Seeing a professional like a psychologist or GP can be a really helpful support when you're going through a difficult time. 

 

It can also be helpful to speak to others about what's been going on for you. Have you spoken to any family or friends about what you're going through? It's also important to try and manage your mental health when you're going through something really tough, so I am wondering what you have been doing to take care of yourself? I'd like to share some articles and a topic with you that I think might be really useful for you: 

An email will be sent to you shortly so please keep an eye out for that! I hope this is helpful for you and look forward to hearing back from you soon. 

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