Long Covid

[Annieosb]

Hi All

Last week I was diagnosed with post covid viral syndrome (long Covid)

I am feeling so unwell and fatigued, just wonder if anyone on here is coping with that too

Thanks

Annie

[Hidden]

I really feel for you and empathise. I have been lucky enough to avoid covid but spent 12 wks in hospital this year when my lung went down 4 times, I had 4 drains, 2 procedures to stick my lung to the chest wall and a broken hip when a pysio caused me to fall over a table. I have been at home trying to climb back but it is a long hard and very tiring slog. Now I am in terrible upper body pain and my bronch specialist wants me to see a bone specialist. I seem to have hit a wall and wonder if this is as far as I get. My doctors just tell me that I am lucky to be alive and am expecting too much of myself.Not being -or feeling- able to just get in the car and go out or do my little guiding job at Shakespeare's Schoolroom is terribly isolating. I am fighting the suggestions of my family to take anti depressants. I make a point of getting up and dressed by 8.30 every day and have one thing planned to do, even if it is cleaning out a kitchen drawer.

As they still know so little about what covid leaves you with, I suspect that you also get very little support from the medics in your life.

I do know that we have to be kind to ourselves but it feels like giving in.

The lovely people on this site have kept me going and I hope that their kindness and interests help you too.

So off we go hold hands, one step at a time and keep climbing that hill.x

[Annieosb in reply to Hidden]

Thank you for your kind and uplifting message. I just suffer breathlessness and fatigue. I am in bed by 7pm. x

[sassy59 in reply to Hidden]

Sending a huge virtual hug dear Littlepom as you've been through so much. Please don’t give up and know we are all here for you. Stay in touch.

Lots of love, Carole xxxx👍❤️💕🤗🤗🤗🤗

[peege in reply to sassy59]

Ditto hugs from me too Lp , one day at a time. I do admire your getting up & dressed by 8.30 though, a major achievement in my book. I cant help wondering if you fractured something higher up from your hip when you had your fall. 💐 💐

Annieosb, you could have a look at posts by Natswright (search bar), she chronicled her long covid journey so there may be some helpful tips for you. I have Chronic Fatigue Syndrome (CFS), tge gain of my life. The way I get by is by pacing myself. Overdo one day and I spend 3 or more days resting to recuperate the energy.

Thinking of you. P

[Hidden in reply to sassy59]

Thankyou so much.xx

[sassy59 in reply to Hidden]

❤️❤️❤️🌹xxx

[Alberta56 in reply to Hidden]

I do hope things start to look up for you soon LP. Are you sure that anti depressives aren't worth a try. My daughter takes them -like many autistic people she is depressive- and they help her to function normally. Bless you and please keep soldiering on. xxxx

[Hidden in reply to Alberta56]

I definitely think that they have their place in certain conditions and for many people but at present I feel that my depression is caused by my situation - lost my best friend, lost my little dog, had my life change through the health issues this year, Rather than a chemical imbalance. Thankyou so much for your concern.

[Izb1 in reply to Hidden]

What a terrible year this has been for you LP. I cant imagine how you have managed and think it must be normal to feel down after such alot of major things happening, especially losing your little dog. Not doing your guiding job will also be having an impact on you, its lonely at home and gives you a reason to get up and go. You will get back to these things in time, in the meantime be kind to your self x

[Hidden in reply to Izb1]

Thankyou so much

[Jaybird19 in reply to Hidden]

Littlepom have been worried about you for long time and missed your posts. You have rally been through the mill lately and you have re,ally been through the mill. 12 weeks in hospital is a long time and takes its toll, i spent 7-10 days in hospital on drip and catheter couldnt leave bed without being told to go back . Not for my benefit but i was less trouble for them when confined to my room (I was just waiting for some adhesions to clear ) when i came home i couldn't walk anywhere . It was tough but nothing to what you have been through. I did say room . was by mysellf and not a good idea but they thought they were doing me a favour as a psst nhs employee. (Didnt have to pay and wasnt infective .) And I positively agree about this site helping a great deal , and please do keep doing that for us all.

[Hidden in reply to Jaybird19]

Thankyou for your kind words Jaybird.

[Nula2 in reply to Hidden]

Dear Littlepom, so sorry you are having to deal with so much.❤️❤️ Your kindness, support and brilliantly knowledgeable tips have been one of the things helping me get through my days. One tip that springs to mind is trying to think of my shower as a 'friend' rather than an 'enemy'. I still struggle with panic every morning (especially when washing hair) but breathe in the steam rather than fighting against it and it does help bring up the real enemy (mucus). Please take care and look after yourself. Sending positive thoughts your way xxx

[Hidden in reply to Nula2]

Oh thankyou Nula. I'm so pleased that I was able to help you in a little way. X

[watergazer in reply to Hidden]

Sending virtual hugs to you LP. You’re amazing to get yourself up and dressed so early. Wishing you well. Xx🤗🤗🤗

[Nula2 in reply to Hidden]

Bless your heart 😊. Take care xxx

[sassy59]

It sounds awful Annie and I do hope you are getting some support. Pete and I had Covid in March but thankfully not long Covid. You've had a lovely, somewhat heartfelt reply from our dear Littlepom and I know you’re not alone. Thinking of you and hoping things improve. Xxx❤️

[Alberta56]

So sorry you're feeling so down, Annie. I hope you can be kind to yourself (little treats??) and take it easy till you've gained a little strength. A lady called Natswright- I hope I've got that right- has posted on this site about her own fight to regain fitness after being told she had Long Covid. She is younger and fitter than most of us here. I remember at first she felt her progress was very slow, but gradually she is getting there. I hope it won't be too long before your body shows signs of recovery. best wishes. xxx

[Annieosb in reply to Alberta56]

Thank yiu for your kind words x

[Bakery40]

Good morning, I'm sorry you are feeling shattered, no energy nothing. I myself I'm on inhalers, I have some sort of airway disease, ATOPY, thanks to my low Immune system. So I take fostair to keep the information to minimum. Anyway, I managed also for two years ( I was locked in for a year) not to catch covid. Last August I got it and I never forget it or want to go through it again. After roughly couple of months I had bad fatigue, brain fog and got out of breath more easy and longer. I was patient and hoping it will go for six months, then I went back to the GP and got diagnosed with long covid in June. I'm under long covid clinic. They suggested and I tried B12 , vitamin D and C. Vitamin B12 helped mi slightly and I'm still on it . Everyone's is different and take each illness differently. It can last months or years unfortunately ,and they don't know much about it. So definitely take the professionals advice and be patient. It's very frustrating but just imagine what our bodies had to go through to fight this virus. Sorry couldn't give better advice/good news. Hope you feel better very soon. Take care. x

[Annieosb in reply to Bakery40]

Thank you, every little bit helps. I do hope you feel better each and every day. I am fortunate to have a good Consultant.

[Izb1]

I am sure this must be normal after covid and will get better in time. It seems to be a long haul from what I have read. Take good care x

[SuziElley]

I’ve had long Covid for six months now. Yet again I’ve had a flare up with my asthma, all linked I suspect. Back on steroids and antibiotics….. I still feel tired with the long Covid and fall asleep every afternoon without fail, then find it hard to stay awake for the evening. Sleeping far more than I ever have. I have started singing agin, which has helped my lungs with recovery, in spite of this latest flare up. The hardest part has been to get others around me to actually understand what it’s like and why I can’t do as much as I used to. Be kind to yourself and just do as much as you feel you can, just try to add a bit more movement as and when you can. Little steps 🤗

[Annieosb in reply to SuziElley]

Thank you so much for your advice and it gives me a little more hope. x

[SuziElley]

You’re very welcome. Remember, little steps xx

[AsthmaandLung Administrator]

Hello Annieosb

I am sorry to hear how you are feeling.

I have added our information about long covid needs below for you from our website. It can make explaining how you feel to your health care proffessional easier. Do call us if you would like to speak to our Clinical Team for advice or just to chat.

mylongcovid.org.uk

asthmaandlung.org.uk/helpline

Take care

Helpline Team

[Ern007]

You are very unlucky to get Long Covid, I have had COVID and most people have without it turning into Long Covid.

Not sure what to say but just hope you are feeling better soon.

[Musicalways in reply to Ern007]

Life is so unpredictable. But we al sem to find ways to keep going. Your an inspiration look how you push and fight through. I know like they say a lot goes on behind the scenes but the show must go on. I try not to let my family see a worried face

[Musicalways]

Hi AnnieSo sorry to read what your going through. I was getting through life happily until I contacted covid 19 in March 2020. I have had Long covid (post covid19 syndrome) since May 2020. Long covid clinic private consultants and gp have diagnosed bronchiectasis Lung Fibrosis and severe chronic fatigue and Pots. Still have Atelectasis. I am being managed well and I do know people who are pulling through. Rest is very important Annie. Be gentle to yourself learn how to pace every day

[Annieosb in reply to Musicalways]

After being able to do most things, it is hard to come to terms with this. Thanks.

[Musicalways in reply to Annieosb]

Life is challenging and difficult. I have joined support groups and friends and family .I get good days and cherish them. As said on here try to do what you love when can

Long covid clinic put me onto opera. Link below. This really lifted me singing at home where no one else could hear me.

There also tends to be support by counselling depending where you live. DM me if you wish. I don't mind honestly

longcovidsos.org/

eno.org/breathe/

[Annieosb in reply to Musicalways]

I am widowed with a 43 year old son with schizophrenia. So difficult to support him now as too fatigued. MH services are dire and although he is in supported accommodation, they allow him to live in squalor, this is a complex psychosis person who is supposed to be looked after by a rehab team! I am sure this government just want to kill off disabled and mentally ill people. Ax

[Musicalways in reply to Annieosb]

Everything is a fight. Apply yourself for help from social services. Some of us with LC are allocated a few hours. Would it be possible yo change your sons social worker. I'm so sorry your hhsvingto deal with so so much

[Annieosb in reply to Musicalways]

Usually I do not talk about it. After 28 years as a carer, I think I have tried everything. I really dont want to talk about it publicly.

[Musicalways in reply to Annieosb]

I get that also.

[watergazer in reply to Annieosb]

Yes I feel for you. Take care and from others have said who have long covid , it’s a case of little steps to build you up. Xx🤗

[Germantara]

I'm sorry to hear yore suffering from post covid and losing a freind and your dog it's being very stressful for you it's going to take time take care

[Kaz33]

Hi Annie

I really feel for you with long covid as I have it too, and coping with the fatigue is so difficult. There is no magic wand sadly, just one day at a time.

[Annieosb in reply to Kaz33]

It certainly is no fun Kaz. Are you part of any support groups? A

[Kaz33]

there are ones on facebook but find they're more related to breathing than fatigue. Had former, slightly improved but main symptom for me is the fatigue so not yet found any helpful group.