No idea what to title

[Dash01]

I don’t know what to title because I don’t know how I feel.

I have had covid and the mix of that with fib has been s.. t , I’m still recovering but I’m not feeling great. My chest is killing me.

i am still struggling with the tidiness the headaches have gotten really bad to the point I can’t even look at a screen. I had my pregablin upped but I’m still only on 100mg a day which I’ve been told is not a lot, my own worry is having to take my other medications for my mental health if I request my pregablin to be upped is it going to do anything or am I still going to be in pain?

I am feeling fed up, I clean up and then suffer for the rest of the day.. I go to sleep because I’m tired then wake up at silly o’clock and can’t sleep because my brain is awake but my body is just so tired I feel like my body is ten paces behind my head.

sorry I realised I’ve rented a little. I hope everyone is having a better time. X

[Dizzytwo Moderator]

Good morning, so sorry to hear your struggling. I remember been your age and feeling constantly very ill. I had two young kids a home to run and juggling a part time job.

I look back now 40 years later and wondered how did I do it.

For me I feel I was in permanent survival mode. I think in someways knowing I had others depending on me gave me something other to focus on.

It didn't mean I was not in pain or exhausted. I think it just made me try and focus more on what I needed to do to help my self so I could care for my children. Both under 3.

There was only self help back then. No meds, no pain clinics no on line forums like this. And definitely no GPs who had any understanding of fbro. I guess they had never even heard of it 40 +yrs ago.

So for me today like back then I have always found something to focus on. Something I'm passionate about. Something thing that depends on me. Something I need struggle out of bed for.

Distraction has played a big part in my life when dealing with 40 years of pain and exhaustion. It may not work for everyone. But I am proof their is life after been diagnosed with fibro. I just needed to find out what worked for me and what didn't.

I feel sure given time you will also find what helps you through the rough times. I stopped feeling bad about the life I lost and re invented my new life.

I realised looking back was holding me back.

Yes l have bad days very very bad days and weeks. But I have learned that they too shall pass. And yes I do still cry get frustrated and want to pull my hair out😭 it's normal.

I feel for what your going through at such a young age. Been there done that. I am now one of the golden girls 😂 Please don't think you have no future because of fibro. You definitely do. I hope you find a way that works for you 😘🤗🤗

[Dash01 in reply to Dizzytwo]

Hey

Thanks for your message, it does mean a lot. I am thankful for you. It was definitely a 5am feeling sorry for myself moment. I feel much better now I’ve had some sleep also.

I just can get in my head sometimes; I know there is worse people in worse situations and that currently I am very lucky. It just sometimes is hard to be positive about life.

Again thank you does mean a lot

[Dizzytwo Moderator in reply to Dash01]

I do understand. It is hard. I too have been in some pretty dark places. I'm still having counselling for PTSD. So I do not make light of others that are struggling with whatever that may be.

I do believe taking a grip of my situations and reaching out to health care professionals has been a great help. Hard work for them dealing with me I am sure 😉

Glad to hear your feeling a little better. Getting enough sleep is so important for everyone that's for sure xx

Momo

[Yassytina FMA UK Volunteer]

The dreaded Covid , I got it 1st time last year and it knocked me for six and took a few weeks too get back on top of what I would call my normal , Have a chat too your GP even if you can get a call back on the phone and speak about how you are feeling right now, the effects from Covid do weigh you down somewhat but I hope soon you start too turn the corner xxx

[Ellenindigo]

COVID kicked off a series of events that led to my diagnosis with Ehlers Danos Syndrome Osteo Arthritis and … Fibromyagia. I think it’s the immune system equivalent of being kicked in the chest by a horse.

I look back to how I felt afterwards and it’s resonating with your present experience. I have slowly (very slowly) got on top of the pain and exhaustion - with a slight (!) wobble caused by Shingles a month ago.

I think we need to be kinder to ourselves - I felt such intense guilt for my seemingly useless existence at the time, now I look back and I just think - Oh My Goodness I was just ill, why all the self attacking… I think it’s the low mood part of Fibro and it’s totally OK to lean into that occasionally

Hope you feel so

much better soon xx