Lonely

[avionne]

I have started to feel like i'm slowly going out of my mind. I still go to work twice a week and the other days work from home because if i self isolate i would only get sick pay which isn't enough. It's just me and my 17 year old who spends all his time i his room on playstation. I feel so down i am trying not to break down

[Oshgosh]

It’s really hard at the moment. It’s good this forum is here for us all to share our fears.

Stay safe.

[Kevin53]

We are all with you. Best wishes Kevin

[avionne in reply to Kevin53]

Thank you so much

[Roarah]

I am sorry. I am happy that my 13 year old still likes to hang with us for it does help to have family games and movies to pass the time.

I have maintained my regular eating,sleep and exercise routine and find a walk outside while maintaining at least 6 ft, 3 m, distance from others outside my family really helps trick my mind into thinking everything is normal. The walks also give me a chance to safely see other faces. A friendly smile can almost feel like a hug these days. I also "see" my therapist weekly via teleconference technology.

My husband's soccer, sorry football, club still zoom every Sunday for a happy hour. I had my monthly book club via zoom and my daughter plays monopoly with her friends on skype. Could you arrange a virtual happy hour with friends?

Take care and please reach out for companionship.

Xo

[debbiemoll]

Hi there

It is a difficult time. The walks for exercise roarah does sound good and my husband and daughter do these- I am confined to bedroom and mostly have been for last month as recovering from coronavirus pneumonia - this too is hard.

There are free online courses and my daughter has enrolled on a couple-

You are not alone in feeling lonely- part of the thing is that this isolation is making lots of us lonely -

Find little things to do regularly.

See if your son will help xxx

Much love and take💓

[Peacor in reply to debbiemoll]

Hi Debbiemoll, hope you are getting better and so sorry to hear about your coronavirus pneumonia. Just like many others here it's can be lonely at times with this lockdown and worse for some of us who are shielding. I would like to find out about your experience with this dreadful disease and it's impact on people with SLE and whether you are on any kind of immuno suppresants. Thanks.

[debbiemoll in reply to Peacor]

Dear Peacor,

I have Antiphospholipid syndrome, mild Lupus Like syndrome and Sjorgens syndrome.

Re pneumonia and coronavirus: I made a list for my family, of symptoms and what I did to keep as healthy as possible, this is below:

Beyond that, I am currently on 2.5 mg steroids (been on and off steroids, prednisone, for 20 years)

I am already on 200 mg plaquenil daily and have been on it also for for 20 years. (Bones fine) Baby aspirin and antitryptoline for nerve pain.

I have not as yet had an antiphospholipid flare up or a lupus flare up from getting this virus- but I think right now, I have severe dry eyes, dry mouth and dry feet- i think it is

a mild sjorgens syndrome flare up, which normally only usually effects my eyes

I am nearly 5 weeks from first going into hospital (only in for a day) and am having to rest a lot. My lungs only hurt a bit now and my air flow is much better.

My symptoms and a list of what I did:

Please note these are my personal

Ideas and in no way a medical recommendation.

All best to everyone

🐣🌺

My covid symptoms:

Cough - a no nothing cough

Slightly Loose bowels: not excessive

Tummy ache

Bad headache

Mental confusion

Slight chest pain

Temperature 39.3

Very bad sore throat

Felt like being strangled

Breathlessness

Pains in lungs at bottom at both sides back and in front of trachea at top of lungs front

The cough and throat eased off after 5 days and I thought i was gone-

Then cough back bad day 6 with breathlessness

I only had a high temperature around the mental confusion stage for 1.5 days

Hospital xray showed pneumonia

which they attributed to coronavirus. Had 2 sets antibiotics and was sent home as I could breathe albeit I was breathless.

Covid hygiene

Evening:

Brush teeth

Do mouthwash

Do flush out sinus if you can with a neti bowl ( warm water) or sinus spray

Gargle before sleep

Take At least 6 paracetomal a day (max is 8) if you have any symptoms and pain

Every 2 hours at night have a warm drink ( hot water and lemon) to lubricate throat - do not leave this out

Day:

Clean mouth: take pain killers if needed

Check temperature, it can go up very suddenly

Less / no milk and cheese

A lot of warm fluids- hot water and lemon

Take a warm bath and let throat and lungs get nice and warm.

Wipe everything you touch

Rest - do not go near dust...

[Roarah in reply to debbiemoll]

I hope your recovery is speedy and through. Xo

[Peacor in reply to debbiemoll]

Thanks for this well laid explanation. Hope you are starting to feel better now. It's really worrying to hear about this disease with everything else that I have - Lupus nephritis (been under control for nearly 10 years now) although I am on smaller dose of medications including pred - 3mg and mmf.

[NorthumbriaHealth]

Sorry to hear your feeling down. Its a really difficult time. Do you know depression can be a symptom of Lupus?

[avionne in reply to NorthumbriaHealth]

Yes i'm aware

[KayHimm]

You are a brave and dedicated person to be going to work and trying to be a good parent to a thirteen year old who must be disliking this isolation too.

I agree with the others that you have to find ways of caring for yourself. There are lots of things online. I bet there is even a support group for mothers of teenagers during this pandemic. 😅 The best thing for your son is to see you doing well.

There are apps that I like that have a variety of techniques for relaxation. One is called « Calm. » Good name.

This isolation could make anyone feel out of her mind. If we all help each other, we can stay sane.

Don’t forget to reach out to your doctors. The GPs in the US are trying to get the word out that their job is to keep their patients healthy so that those on the front line can care for those with Covid.

We are here.

[avionne in reply to KayHimm]

Thank you. He's 17 my son

Gp is not fussed at all

[KayHimm in reply to avionne]

Sorry, seventeen. All the more reason to let him play his video games while you do something you enjoy 😉

[Stacy123456]

I feel very low to... I hate wakening up in the morning because I know my day is gona be sat looking out the window feeling depressed...stay positive.. Everyday that passes is another day closer to normal life again xx

[avionne in reply to Stacy123456]

Hi stacy, that's exactly how i feel. Today i rolled out of bed at 11.30 showered anf been in my room since cryinh nonstop... i am trying so hard to remain positive but can't find any

[Roarah]

After I had a stroke last year and was far less mobile, suffering severe aphasia and very depressed before my PTSD therapy began a good friend mentioned I should try watching funny movies and sitcoms. Laughing really can be the best medicine. Maybe down load comedies you enjoy if outside exercise is not helping. Xo

[Stacy123456 in reply to Roarah]

Any recommendations xx

[Roarah in reply to Stacy123456]

I watched the orginal and new release Will and Grace a lot during that time. I also watched the Big Bang. As a family we introduced old comedies like Monty Python, airplane, ghostbusters to my daughter. I am in the states and now my teen daughter adores flying circus and Mr Been, me not so much but it is still something my daughter is using to add some laughs to our isolation.

[Stacy123456]

It's tough very tough.. Maybe a we walk would help u.. Fresh air would do u the world of good to.. Its just such a stressful time.. I didn't get up to 1pm either and will be awake half the night with my thoughts racing..i have no routine or sleep pattern anymore.. I miss my work and doing easy things like the shopping.. But remember this won't last forever and that as hard as it is being isolated it's keeping us safe xxx

[ange726]

Hi avionne.

I was so upset reading your message. I dont have kids but have plenty of nieces and nephews who are glued to they tablets/computers.

So in order for me to get through this , I have realised very quickly that its very easy to have a bad day, being in pain, feeling down etc and its even easier to let that spiral out of control. I therefore have to find energy (and that is tough in itself) to do things that make me happy and positive. You won't be successful all time but I'm all about celebrating the little wins and silver linings. You have to be kind to yourself and not beat yourself up. You also have to feel like you have achieved something daily.

Things that I do that makes me feel better and that gets me through the day:

Yoga for 20-30 mins a day. Im not flexible or fit but there is a free app/website (until 1st may) called Down Dog that cater for everyone of all ages. This helps to give you strength and calms your mind.

Sewing - i have a sewing machine and I'm making items for a dog charity that they can give as raffle prizes. The lovely thing about this is because I'm shielding this gives me purpose and gives me a warm feeling that I'm able to help a charity so doing my bit. If you don't have a machine you could order online a needle and thread and some cheap fabric or knitting or crocheting etc. Reach out to online charities that you would be happy to support. By helping others you also help yourself.

Jigsaw. Do you have any or could afford to get one? I bought one where the picture on the box is slightly different to what the jigsaw pic is , so you have to look at clues. I do it while watching a film or TV series (nothing sad)

Housework- I put on my favourite upbeat tunes and dance and sing around. Once finished, I have a sense of accomplishment.

Online courses - there are so many free online courses right now so I'm doing one I have a great interest for. I'm happy to send you links if you want.

Sorry for the ramble. I hope some of it is useful. Please let me know if I can help with any of the above.

Sending hugs and stay safe xx