Thread by @rebslogan

It's been a while since I've been on Twitter...here's why.
It's been over 31 months since I first contracted C19 & my life changed. 31 months since I was able to work in either of the jobs that I loved, been the mum, wife, sister, daughter & friend I once was. 1/

Because of #LongCovid I'm crippled daily by fatigue, pain, brain fog, breathlessness, muscle weakness, tinnitus, nausea, post exertional malaise...list goes on. I'm 60-80% bedbound, unable to drive, when able to go out I use a wheelchair. My husband & daughters are my carers. 2/

I've lost friends because I'm unable to be the crazy, full of life friend I once was & they just don't get how I'm 'still sick' & I'm fed up trying to prove how sick I am to them. I have tried most things to try to help myself including vitamins, herbal medicine, yoga(!) 3/

Acupuncture, meditation, traveled to Germany for 5 weeks for HELP apheresis & triple anti coagulation therapy, antihistamines, antidepressants(!), exercise(!), vitamin infusions, CBT(!), LDN to name a few-none have given me any sustained, long term improvement. 4/

I'm currently taking 20+ tabs/day & X2 injections every 4 weeks. I have spent ££££ on trying to 'get better' & offered to be on research studies. Despite all of this I still feel, at times, that I'm not doing enough especially when ppl start conversations with "have you tried" 5/

I have engaged with my Long Covid service but was discharged because I was "too sick to treat"! I have a great consultant who sees me every 3/12 & who is willing to try things off licence but there's only so much that he can do because specific testing isn't available on NHS. 6/

He referred me to a wonderful physio who listens & helps manage my pain but can't & doesn't advise exercise due to my exercise intolerance & #postexertionalmalaise. I have a new GP practice that are amazing. (I had to leave my practice of almost 15 years bc they dismissed LC) 7/

I'm fortunate to have a consultant & physio that believe me but there are so many LC pts that this is not the case for & it makes me so sad. The last time I was on Twitter I was overwhelmed with how many new sufferers there were & it broke my heart. 💔8/

I couldn't bring myself to offer reassurance because of my reality. I still can't however I feel that being silent isn't the right thing to do either. Without long haul stories, new sufferers won't know what to avoid or know that others understand. 9/

I also don't want to give false hope but don't want to be negative either. I feel that I'm in a place now that I manage LC better rather than BE better. Learning from #pwME has been so beneficial. They've experienced so much gaslighting, dismissal & neglect for decades. 10/

It's scandalous. But I hope that because of LC we can get answers for #ME sufferers too. 🙏
If someone newly diagnosed with LC asked me what I'd advise them to do it would be this; STOP, REST, PACE. Listen to your body, don't push through & if you crash after activity-stop it.11/

Read up on research that has & is happening. Don't spend £££ unless you feel in your gut it is going to help. Try not to be influenced by others or pressured into trying something that claims to be a cure...unfortunately there isn't one....yet. Acceptance & managing LC is key.12/

This took me a long time to do & even now I have times when I don't but I no longer fight or punish myself for having LC. If a mobility aid helps you, use it. I don't like having to use a wheelchair but it gives me the opportunity to get out & make memories that otherwise 13/

wouldn't be made.Ask for help, I feel that I didn't & that made ppl think I was ok so they backed off. Ultimately it was my pride that stopped me. Say no, don't try to please ppl especially those that don't get it. Protect the energy you have for those that are most important.14/

For too long I gave my energy to others & my family got the worst of me & that's not fair. Be gentle & kind to yourself...this is not your fault. Punishing yourself will not help, believe me, I've tried! Speak to other LC sufferers who understand & empathise. 15/

Social media is draining & I suppose I was protecting myself from the negatives of LC, the constant fight to be believed & heard. I'm not fully back but I'm here. We desperately need more understanding & better management of our symptoms & that is what I will fight for. 16/

I believe that one day there will be a cure but in the mean time health professionals seeing & treating LC pts MUST be up to date on its symptoms & understand how to manage them rather than dismissing or gaslighting. Evidence & resources are out there. 17/

#LongCovid is a result of the pandemic & it can't be ignored. Millions are missing from their 'old lives' as a result of it. Governments worldwide NEED to address this mass disabling event. We will not go away, we will keep fighting. Thank you for reading. End/