Like most of you I've been told to stay in for 12 weeks. I've already done six. I felt fatigue in the middle of March and decided to self isolate for two weeks. I then developed something called erythema nodosum via photo and telephone consultation. Anyone else had it? That and sciatica and I'm all in. Blood tests done by a district nurse who hasn't been tested for Corona virus leaving me to disinfect the hall and kitchen.
My question is can I go for a walk to the corner of the street at midnight? The street is completely deserted at this time?
I'm lucky to get priority food and and have a 20x20ft garden with resident fox. Except for occasional phone calls I don't speak to anyone for days.
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Sweetlucy
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Hi there, poor you...well,strictly you should keep away but I can't see any problems with a little walk,day or night!I think the benefits are greater doing that,then if you don't. Just keep away from others,don't touch your face and...wash your hands. If you don't have any hayfever or so,can you enjoy your garden for an hour or so during the sunhours?Reading a book,doing crosswords,knitting,crocheting... ? (Making sure you stand up every 30 minutes during the day)
If you go out in the middle of the night, are you safe?Just stay safe in all aspects. Take care😎
Crime has decreased in London. The muggers are self isolated. Some drug dealing going on. I disenfect the soles of my shoes every time I take a step outside. Only time is once a week to put stuff in the dustbin outside the front door.
Hi, I don’t think a quick outing, staying away from everyone, not touching anything, not shopping, etc would endanger you as how would the virus get onto you? I think it’s a balance between being careful but thinking of your mental health too. It’s obviously your decision and it depends where you could safely go.
If you feel safer disinfecting shoes and jacket, etc once home, then do that.
E hugs, kindest regards Aime xx😻😻
PS- remember there seems to be light at the end of the tunnel now with the stats improving.xx
Hi Lucy i appreciate your feelings it is a long old time for us all and like you I live on my own well with my little dog! When i had my tele appt with consultant as this all started and she said I was on the 12 week shield advice, I asked her - because I am always awake in the early hours (I am on interferon one my side effects wide awake and painful by 4am!!) could I go out early with my dog walk down the road - she said long as it is at a time no one at all around and no chance contact people even coming out of their house then yes go ahead and do that. So 5am me and the dog are out up and down the road a nice march no one around (and safe!) and it does me good and I feel it is helping my mental health to do that - I do put all my clothes in wash when I come in. So I think its finding if something that can be done in each case that is risk free re virus that benefits emotional and mental health. All the best
Thanks for the reply. The constant throbbing and burning from sciatica keeps me awake all night. The Erythema nodosum also throbs. I wonder if it is related to MPN. I read it can be a sign of lymphoma. 'Im exhausted all day but strangely perk up around 10pm. If I have the energy I might have a short walk. Before this I was working out at the gym three times a week I felt fit and the sciatica was manageable.
I take my little dog out at 6am as I'm on Interferon and don't sleep well either. It's not the most scenic walk through the estate but on the very slim chance someone else is about I feel safe being able to cross the road and make sure I'm at a safe distance. Sadly I don't think this will end for us after 12 weeks. Very difficult and surreal times. Take care and stay safe xx
Where do you live ? I have not been told to isolate no one in Scotland seems to know the answer to anything to do with my condition.I have ET jak2+ and many other conditions.First call to GP at the beginning of the pandemic Doc said"what letter" and "what difference would a letter make"second inquiry asked if I should have received a letter no response from my question.I am right royaly unhappy .
I have given up I have been out twice out of neccesity since 6wks ago.Just needed to get that off my chest.
I understand the Govt advice of not going out, it would be impossible for them to tailor it to all individuals and we all live in different areas. If you are vulnerable and live in a busy town/city then its different to if you live in a quiet village, in my opinion.
I am still going out for a walk, sticking to routes I know I can stay well away from other people, our roads are so quiet so crossing to the other side if someone else is coming is simple enough. I always take the initiative and am the one to cross.
I do think we can only judge for ourselves though if we think we an safely do it without bumping into someone.
Its good the weather has been kind to us in one way to allow us to at least enjoy some outdoor space for those of us lucky enough to have it with our homes too.
The lady next door to me is also shielding but she wont go out, although we do have a chat a few meters apart over the fence, in fairness she is more elderly and not as fit as me so her ability to keep out the way of others, especially joggers etc is affected, so I think we can only make these calls ourselves, I would never tell her i think its safe because it has to be upto the individual to decide.
I agree it’s very much a individual decision based on personal circumstances.
And l guess as the infection rate decreases people will adapt. The virus could be here for many months until a vaccine - think it would be challenging to remain locked away long term
I agree that it's very much a location based individual decision.
I live in a flat, it's set in beautiful grounds, but I'm avoiding them as a lot of other residents and their care workers use them regularly. Strangley, for me I feel safer when I'm out and about for a short walk - not that I don't feel safe in my own flat; it's the communal corridors and entry areas which cause me the most panic. A lot of the residents have care workers who visit them daily so I hate touching the fire door handles, lift buttons and door entry system - I always make sure to carry anti bacterial hand gel... I even wear gloves when I use the rubbish disposal shoots.
The things I was delighted with when I first moved here less than 12 months ago are now the things I hate about living here.
I totally understand your frustration 12 weeks- even though you are not supposed to go out - I think a midnight walk would be good. Even better between 4-30am and 6am when the dawn chorus will be in full swing. I ve down loaded ( hubby did) an app called Warblr. Point your phone in the direction of a bird singing and it will record, process and identify the bird,
I’ve ordered lettuce seeds I’m going to grow them for the first time.
I’m not a twelve week isolator even so later today I will be fighting my husband for the right to collect our son from work.
I can't see a problem in that. Its a fine balancing act, your physical health and your mental well being. Sticking to Government advice shouldn't create a problem if it helps you. Do you have good neighbours? If so couldn't you talk over the fence at a sensible distance? This week alone i've spent hours in the garden with our dividing gate open chatting away to the neighbours to the left of me. Warm wishes,tina.🤗
I don't go out when they are because our garden is too small. I've asked them to move their chair and table as far apart as possible which they do. I still don't feel comfortable.
Oh i didn't realise it was a communal garden but i still wouldn't feel comfortable walking to the end of my street at midnight with the way of the world these days, better to be safe than sorry. Take care.tina.x🤗
Oh God, I had it last year, I found it difficult to walk as my legs felt so heavy. Get some good knee high support socks, lovely bright pink one's from Amazon. My dermatologist liked them!
I ha a biopsy on one of the nodules to confirm it but I had no treatment except my Hydroxy was stopped.
Carry on as you normally would without it. I thought it was hilarious as everyone calls me Nod, I felt like it was my namesake.
Knee socks a good idea. I think I have a pair somewhere. How long did yours last. Mine began mid March and new lumps are still popping up. Antibiotics didn't work and a antibiotic steroid cream made my skin peel. Just a waiting game I guess.
Make sure they are proper support socks. Mine lasted a good few months. It is a waiting game for them to go. No specific treatment could be given. My Hydroxy was stopped but we still don't think it was them as I've been back on it and at a higher dose.
Coincidentally it is a year this month that I had them.
I'm afraid it's a grin and bear it job bid. Good luck, keep me informed.🍸🍸
This is all so horrible for you but I think you could safely go out when there's no one around. You need to care for your mental health too.
Do you mind me asking what erythema nodosum is? I have recently been diagnosed with varicose eczema caused by venous insufficiency. I have had to start wearing compression socks. A member of this group, Anag, knows a lot about compression and was really helpful to me when I had questions.
It's an infection in the fatty layer under the skin. Wish I could post a photo here but plenty online. New bumps keep coming up
What with the throbbing nerve pain from sciatica I'm falling apart. Continually tired and just want to sleep. A combination of MPN, erythema nodosum and nerve pain.
You have my sympathy. This year I have had repeated attacks of cellulitis in my lower legs and the pain was excruciating. I've also experienced sciatica - to have both conditions at the same time, as well as your MPN, is terrible and I'm not surprised you are feeling low.
I go out for a walk every day. Just keep my distance from people. Wear gloves and mask anytime out in public and wash up when I get home. The risk of being outside (providing you avoid direct contact with people) is so negligible that the benefits far outweigh the risks in my view. Do be sure the be careful with the fox, however. Really neat predators to watch in the wild, but unfortunately rabies is all too common. That and they like to eat smaller pets. They do however, eat pesky garden rodents as well.
Saw you question about erythema nodosum and possible relation to MPNs. What is emerging is a better understanding of the role of inflammatory cytokines and how they impact the secondary conditions so many of us with MPNs experience. There is some good research on this that is easy to find.
Hope you do get a chance to go outside for a walk before cabin-fever sets in.
Thanks for your reply. Interesting that there may be a connection with MPN.
Fortunately we don't have rabbies in the UK. Lots of people in London have Foxes in their garden and take pleasure in seeing them. Yes, they will certainly carry off someone's pet rabbit but good at keeping rodents down.
Glad to hear that rabies is not a problem over there. Here in West Virginia we see a good bit of it in foxes and racoons. Still enjoy seeing the foxes though. I like watching them hunt when I am up in my tree strand. Occasionally see Bobcats on the prowl too. Cayotes are unfortunately becoming ever more common. Will enjoy getting out more are the season moves on.
Please do learn more about the connection between the JAK2 mutation and elevated levels of inflammatory cytokines if that is relevant to you. Systemic inflammation can cause a host of problems that are not always clearly connected. This is an emerging area of research and there is much more to learn.
What about the Buddy scheme? Ask Mas, it may help with the boredom and it will give you support during this difficult time which I'm sure for us the lockdown will continue for sometime.🙏🤓 Concentrate on the positive . Download headspace, it has a pain control program which I found extremely helpful, it works.😜 Enjoy your 🦊 and listen to the birdsong, maybe improvise some of the exercises you did at the gym and do stretching exercises to help with the sciatica. Play your favourite music and have a dance around the flat. Take great care ❤️
Went out at 1am this morning. Not a soul about. Got home and couldn't sleep and opened the window at 4.30 to listen to the dawn chorus. A lone bird was singing its heart out. Do read the poem by Thomas Hardy The Darkling Thrush. It says it all. Brought tears to my eyes.
You can find it online. Dozed off about 6am and got up at 10am.. erythema nodosum is painful and new lumps still appearing.
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