I wanted to be able to feel more positive for 2022 and wish people a happy new year. But after watching the news last night (never do this before bed!) I can feel the fear and anxiety building again after having my family safely at home for the past couple of weeks. Lack of availability on LFD and PCR tests; Temporary hospitals being built to house the sick and dying, with no mention of how they will be staffed; life saving treatments available but only to those who have a positive PCR (but a shortage of PCRs); Life saving treatment offered to all those with solid cancers but only a few selective blood cancers (MPNs not included); difficulty in accessing 3rd primary dose and 4th boosters.....the list goes on. And then I started thinking, when was the last time the government mentioned the immunosuppressed community? When did they last make any announcement about additional protection for them (with the exeption of the additional treatments which we cannot access)? I have read that the government have acknowledged that protection from the 3rd vaccine wains dramatically after 10 weeks - and that is for the healthy population. They are already talking about putting plans in place to roll out a 4th vaccine to the healthy population, whilst at the peak of this pandemic we are being make to wait at least 12 weeks before we can even start our fight to get our boosters. It made me wonder what on earth is going on?
Next week my husband goes back to work in a busy factory and my two teenage children go back to school, mixing with their friends who have spent their Xmas holidays all over the country. There will be a shortage of LFD tests for the next couple of week we are told, with priority going to NHS staff. Covid was spreading like wildfire in schools prior to Xmas, what on earth will it be like over the next few weeks with few LFD tests to go around. We will not even be able to attempt to get access to life saving treatments if we cannot access a PCR test to prove we have tested positive. I have 14 days to go before I can try and find a walk in centre to get my booster - 14 days have never seemed so long.
I am sorry for being so negative. I hope I am over reating but sometimes I feel I am living in some kind of other dimension to the rest of the world. We are now being told not to order more LFD tests than we need and not to use them more than we need to. As long as there is enough supply for people to take them before going out and enjoying themselves on New Years Eve then everything will be ok!
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Hi MW , , it is indeed a bit of a grim picture on the face of it and I notice we are back to being bombarded by statistics around various aspects of Covid and vaccination etc , some negative and some better news in that Omicron appears less severe in most cases. It's hard to ignore it all when it's on the news every time you watch it and I can say you're not alone because it affects me too.
I truly thought we would have turned a corner by 2022 and Covid would be on the wane with just an occasional flare up in our major cities. Wrong. But I am optimistic that it is weakening and the vaccine programme though still unpopular with many is helping the fight back. And though LFTs are in short supply I think there are many local and pop up PCR test centres. I truly hope we're not facing next New Year in a similar position. Time will tell.
Sadly there are no other reassurances I can offer you that as we go into 2022 things will be any easier for those of us who are classed as vulnerable. I get how much harder it is to safeguard when your partner needs to work and children are in school but I would urge that you seek out your booster or 3rd jab (unclear if you've had that yet) asap. If you're NHS record is updated correctly you ought to get a PCR test kit in the post which opens a door to anti viral drugs should you test positive. Forgive if you know this.
All said I wish you and your family a Happy, Healthy (Covid free !) New Year and that you somehow find a way to manage your concerns whilst maintaining active family life.
Thank you Chris, these are kind words. Yes, I think we all hoped we would be in a better place now. I think I am panicking a bit because I know my 3rd primary dose will have waned considerably by now but my 92 days won't be up for a couple of weeks, so I am in quite a vulnerable phase where I probably have little or no protection but can't get my 4th dose yet, and when I am eligible I've got to try and find a walk in clinic available as no one will send me an appoinment. I know some people have been given access to the PCR to keep at home but I'm not one of them. I have a plan in place if I do test positive with some telephone numbers of the Haematology wards in my local hospital so I am doing all I can. Also making a complete nuisance of myself at my GP surgery to try and get my records updated properly!
Hopefully, if we can all hang on for a few weeks this wave will reach its peak and start to go back down. Fingers crossed. All the best and thank you again for your reassurance.
This is a cruel plot twist to 2021, isn't it? It does feel defeating to do the right thing, repeatedly (vaxing, boosting, staying home, etc) and to not have this thing turn a corner for us. I also have two kids- a 1 year old and six year old that have exposure at their schools/childcare. It is so stressful. I don't know what to say but just wanted to let you know you're not alone feeling this way. Good news feels hard to come by lately. One strategy me and my husband use, we try to focus on our inner circle and recognize that our lives are good and happy as a family. When things feel dark outside, we try and just turn inward and focus on the happiness we feel within our homes. I think I do a decent job at this, until I read the news (usually in bed at night also) and feel the flood of dread and exhaustion. It's okay not to feel particularly positive about 2022. Let's just take one day at a time. For now. And we can always hope!! Hope for better. Best wishes to you and your family.
Thank you. Gosh it must be even harder with very young ones, my heart goes out to you. At least with stroppy teenagers, there are some positives about trying to keep them shut away in their rooms! I think we must stop watching the news before bed! My husband keeps telling me this, but for some reason I am really drawn to it. Afraid I'm going to miss something important or positive but I should know by now it is not a good idea! Thank you for taking the time to reply, sometimes it is good to know you are not the only one feeling down and cross about the whole situation. I hope you and your family have a lovely new year together.
I can feel your angst all the way here 'Down Under'...
Incidentally, here, there are even fewer MPN patients, (not to mention MPN specialists, they're more rare than our MPNs), in my view...
In Oz, there are no special mail-outs from the government for the "Immunocompromised" community at all... I had to present academic articles to my doctors to convince them that I indeed required a 3rd Pfizer booster, (which may now dictate the definition for fully vaxxed for the Immunocompromised), & a 4th Booster will now soon be required... Just as it is now in Israel...
Like you've suggested, governments first look to keep our commerce bubbling along... However, such measures are required if we are to find the staff we need to run our health departments etc...
Sadly, I agree w/ you, but until the whole world is more or less 'Fully Vaccinated' ever more elegant strains & mutations will continue to emerge, in my view... Presently, about half the global population remains Fully vaxxed... Hopefully, this stat' is slowly changing...
There are still so many anti-vaxxers...
Anyways, & often at times like this, I like to remind myself that "Change" is the only really constant in our lives... AND... it follows... Change brought CV-19, AND Change may well someday take it all away again... (?)
Are you a Van Morrison fan per chance? Has a great number called "Days Like This"
"...when all the parts of the puzzle, seem to look like they fitz... then I have just have to remember, there'll be Days Like This..."
Hang tough... Look at the smiles of your children... there's great resilience there...
Very best wishes for a sensational New Year to all...
Thank you Steve - good song choice! And thank you for your kind words. Feel better today, partly thanks to all the kind responses and the reminders that we all feel bad some days but we have to keep on going, if not just for ourselves but our loved ones too. Safe safe and thank you.
Hi. I think you’ve expressed what many of us feel. It’s strange because sitting in the U.S. I was so jealous of your NHS sending PCR tests to MPN patients’ homes & then the medication if you test positive. It sounds like you may not have received that & might want to ask your MPN doctor. I think Emmyroos suggestion is excellent. And I’d add to it to not watch or read the news. I had to stop because the news in the U.S. is so grim on so many fronts. So maybe tomorrow you can just sit outside & soak up some nature or find a good book or call people you love. Just try and focus on the things you enjoy & the things you can control. It’s not easy, I realize. Big hug from across the Atlantic. Katie
Thank you Katie. You are right - there are still lots of good things and I am still luckier than a lot of people across the world. Thank you for taking the time to reach out and try and make me realise that. Don't be too jealous of our NHS, there are many many wonderful people working tirelessly in the NHS but the systems for vaccines and treatments for immunosuppressed people are not working as they should. It seems to be a post code lottery whether you get one of these PCR tests and access to treatment, all based on your individual GP surgery's interpretation of the rules and/or data extracted from NHS systems (where patients records have all been recorded differently). There seems to be many on this forum that have received the letters and access to PCRs and treatment, but just as many who haven't. Hopefully it will sort itself out eventually and with any luck some systems will also be in place in the US for you to be able to access if you need to.
Hello, I just wanted to say that you are not alone, I feel the same. I have MF and always try to stay positive, but after 2 years and still the terrifying prospect that catching Covid could kill me …it is getting harder. I too watch and read every bit of news, although scary, I feel it is good to have as much information as possible. My (4th) booster dose is due in 9 days, but haven’t heard from my GP yet…I plan to ring next week.
Like you, I have had no PCR test or email…but my Dad, who has Lymphoma, has had his. I hope you are ok and that 2022 will bring us all some freedom and normality again..xx
Thank you for taking the time to offer your support, I really appreciate it. Hopefully we will all get our boosters on time and without any problems and maybe we should make a New Years resolution not to watch the news after teatime! I've been advised to go to a walk in centre armed with any evidence of my condition, 3rd primary dose etc when my booster is due. I am not expecting anything from my GP. Hopefully your GP will be better but if not, hopefully you can find a walk in centre nearby and try that instead. Good luck.
Hello MW. I am sorry to hear you are struggling with so much negativity and dearly hope that the support you receive from this group will help you. I am probably even more guilty than you about news before bed as when I can’t sleep I reach for my phone and read the news. This is a double no no as apparently blue light from screens stimulates the brain and the news can set your mind going too.
I have a son who is one of the most positive people you could hope to meet. He could write the positive mental attitude books himself. When he is stressed about something he allows himself up to an hour to decide if he can do something about whatever it is and make a plan of action but if it is beyond his control he stops worrying about it and moves on to something else!
I do try and take a leaf out of his book but I’m nowhere near as good at it as he is!
It is hard sometimes not to be overwhelmed by the negativity that is strewn across our paths every day. I like to stop and think every now and then how lucky I really am but sometimes the fact that I am better off than some other people is little consolation. As far as covid is concerned I have been ultra cautious but did get to see all my four boys and their wives/girlfriends and children this Christmas. Those memories will set me up for a while. I am about to put my assertive hat on when I go for my next blood test on Tuesday as it is now time for my booster after 3 primary doses. I keep getting reminders on my phone to book a booster but when I try to book via the NHS website I’m told I don’t need to book anything. Time to bring it down to the local level and our GP practice actually has a covid coordinator so she will be my target contact
I really hope you can find a way to lift your mood. Someone suggested a walk in nature. I love doing that (though these days I can’t walk all that far). Maybe find a good book to read or listen to. Do you have any hobbies you can immerse yourself in? If not is it time to find one? What music do you like to listen too. Music can be a great tonic. Whatever you do I sincerely hope that you find a way to feel better and that support from the lovely folk in this group is helping you a bit at least
Thank you Jan. Some lovely positive ideas there and what a wonderful positive son you have. If he could bottle that up and sell it on he could make a fortune! It was very kind of you, and everyone on here to send such lovely messages of support, it really has made me feel quite overwhelmed. Feeling better after a nice walk with the dog this morning so feeling a bit more positive already. Good luck with your booster. If you don't get anywhere with your GP, try a walk in centre and take all the evidence you have that you are entitled to a 4th. With any luck there will be someone there who knows about 4th dose boosters and they should be able to agree to it there and then. I wish you all the best and yes, lets hope for a better 2022.
Hi, I can completely understand your fears and worries for the weeks ahead and it does sometimes feel overwhelming. I have 2 teens as well who are due back at school next week and I know my anxiety levels will rise when they are back in the covid petri dish of school again!! However, I know that a lot of these things are beyond my control - my teens need to go to school and I have accepted it is likely that they will catch omicron at some point and we will just have to deal with it as best we can. However like you said, teens love being in their bedrooms and when my oldest had covid 6 months ago he was happy to isolate in his room and none of us caught it so you've just got to hang on to those positives! I am due my booster mid Jan too - it's on my mind as well, I know I will need to go and make my case at a walk in centre and it shouldn't have to be this difficult but fingers crossed we are successful. Stay positive and hang on in there, you are not alone in this!!
Thank you. It is worth being reminded I am not alone. Thank you to all the lovely people here that have taken the time to remind me of that. It is also worth remembering that some things are outside our control and therefore there is little point in worrying. Good luck with your booster, I am sure we will be well prepared to argue our case at the walk in centres and hopefully the staff will be well briefed so we can get them done without any fuss. I will certainly feel happier for a while at least once I've had my booster - I am sure you will be the same.
Yes, good luck with the booster too, keep us posted on how it goes! One thing I forgot to mention is that I use a mindfulness app (Headspace but there are loads of others) first thing when I wake up or when I go to bed, this really has a calming effect as does yoga and like others have suggested just getting out in the fresh air. Sometimes though, it's good to vent and get it off your chest, thank goodness for forums like this! Wishing you a smooth start to the new term and just praying for no more homeschooling, honestly no amount of meditating can make me calm about that!!! Take care
So sorry to hear you are feeling down. Sometimes it’s difficult to stay positive with all this stuff going on. I’m in a very similar position, children going back to school next week, my daughter only got her second vaccination earlier this week, so it takes a few more weeks before she is fully protected. Have you tried to order LFT packages via the NHS website? We have got a few at home, so if we hear of anyone in the family having been in contact with someone with Covid or having a sore throat or anything else, we can take a LFT immediately. It feels us MPN patients are continuously left out from the lists and we have to battle to get protection against severe illness. It doesn’t feel fair. I know I have written down when it’s 3 months from my 3rd jab, and mentally getting ready to fight for a booster.
One thing I have noticed is that people, even the regular health professionals like the GP, don’t often take my condition seriously. As I look and act healthy, people really don’t understand that I have a severe illness. Just before Christmas I was made feel really bad for not attending a Christmas party, as “you can’t stop living because there is Covid”.
The weather has been recently grey, too, which doesn’t help, but try to get out and have a good walk, daylight and exercise really boost your mood. If you can’t get out do some stretching at home, or any other exercise you enjoy. There are many apps and online courses, if you feel you need guidance. Take a moment each day for yourself. Read something, watch a program or soak in a bath. Try not to worry about things you can’t change. I know it’s easier said than done, but really try to concentrate to have everything you can in place to keep yourself safe, and then not to think about it too much. Also, it’s alright not to feel positive all of the time. There are easier times and worse times, and when we think things are turning better and then they go worse again, it’s tough.
This forum is really helpful at tough times, it’s good to know we are not alone.
Thank you Moina for reading my rant and for your very positive suggestions. It is so helpful having this forum - just knowing there are others out there feeling the same way. Others positive view points gives me inspiration to turn my thinking around and look for those positives. I think it is mostly frustration that we seem to be forgotten and we have to fight for everything that we are entitled to. It gets on top of me a bit, which I am sure it does for us all sometimes. Gone out for a nice walk with the dog this morning and thanks to everyone's kind words i am feeling a little more positive today. Will certainly feel a bit more relief once I've had my booster!
It’s a stressful time for sure and no amount of forced positivity can change that. All we can do is remember that stress really is detrimental to our immune system, and make the choice not to invite any further avoidable stress into our lives.
News before bed might feel like a short term relief and give some sense of control, especially as a community of people who have had to learn that knowledge is power in terms of having an MPN, but we know news reporting is designed to be sensationalist and overly negative to drive clicks & views, and is on the whole terrible for mental health.
We don’t have to bury our heads in the sand, but taking control of what we’re consuming is possible. Some ideas might be to set up Google news alerts to filter for relevant/useful news only, follow trusted scientists and doctors on social media and rely on them for updates, read the actual studies being published rather than the headlines, dedicate set time to catch up on developments (maybe over a nice coffee midday, definitely not right before bed!)
Thank you. These are all great ideas and yes, definitely worth remembering that stress is not good for anyone but especially us - we need to keep our immune systems in the best condition we can. I will make it my New Year resolution not to watch the news at bedtime!
Hello MW, I just want to say I feel exactly the same as you. I try not to watch the news but like you, I feel drawn to it. I’m trying to hold on to the fact that a lot of people I’ve heard of with Omicron say it is just like a bad cold but because I have my 86th birthday on Monday I worry how I’d cope because of age. My 4th Vac is due on 4th January but I’ve heard nothing either. I will have to contact my GP’s next week I think though the 3rd one was through NHS as my doctors weren’t doing them at that time. Reading all the positive replies and words of encouragement on here has helped me too. Take care and good wishes for health for you and your family in 2022. Regards, Fran xx
Thank you Fran. I can't believe how many of us are addicted to the news despite knowing how bad it is for us. A very happy birthday and good luck with getting your booster.
Hi Fran , , just to wish you a very Happy 86th Birthday for tomorrow (in case I forget tomorrow! ) and hope you have a lovely day and maybe manage to do something special though I appreciate it's not always worth the risk going to busy places depending on indoors vs outdoors etc.
Thank you very much Chris, for your kind birthday wishes. Much appreciated. We hope to have a run out over the N.Yorkshire moors ( weather permitting), live quite near. Definitely no Cafes or restaurants though! Franxx
Thank you Jill! It’s today, so not belated. I appreciate your good wishes. Hope you are settling in at Stratford on Avon ok. Happy New Year to you and your husband. Keepin touch.xxxxx
Hi, MW, You’re not over reacting at all. We all have days that we just wish this thing would be over and we can resume our normal lives. Right now in the US it’s very difficult to get the at home kits for Covid and there are very long lines to get a PCR test. Just in the past few weeks I know so many people that have been exposed to Covid and one person who got Covid even though he had his booster. And now with your children, it’s one more thing to worry about on many levels. The news is distressing but I think it’s important to know what’s going on, as well. Maybe you should just take it in small doses and not watch it every single day. That’s what I do.
I wish you all the best and a happy and healthy new year.
As you can see by all of the posts, just about everyone is walking into 2022 with the same fear as last year and with no light at the end of the tunnel.
We are plodding along keeping ourselves to ourselves, as we have been since the start of the pandemic. We moved to Stratford upon Avon at the end of November so with unpacking boxes and getting our lives reorganised I have been to busy to let Covid overtake my thoughts but it’s still affecting our lives. I am so surprised how much I miss Middlesbrough but I have put it down to not investigating our new home county yet. So far we have been to the bank and the new GP practise. That’s as far as we have got.
I am very worried that just about everybody we know has had, or now has, Covid. I cannot help myself thinking it’s when I get Covid, not if and it’s an overbearing thought.
It does not help that I have no faith in our government whatsoever. I still go with the thought that our gov’t want the elderly to pass away, look at all the pension they save. They also want to get rid of the chronically sick, anybody who is a financial drain on the NHS. I remember, a couple of years ago, listening to a professor saying that by 2030 the world population would be at such a number that our planet could not sustain humankind p, then, lo and behold, a few months later Covid 19 was leaked in China. Nobody will ever convince me differently.
I am lucky in that my husband and I do not mind living in our own little bubble but, inevitably there are times we have to walk outside of it, such as hospital and doctor appointments. I may be able to live in a bubble but I still need stimulation so instead of a gift I really didn’t need at Christmas I asked my hubby to pay for my online diploma course in British Sign Language. I did a course in canine science and biology a few years back and thoroughly enjoyed it. I am just trying to say, just because you are still having to cut yourselves off from the world, it doesn’t mean you have to stop living. I believe mental stimulation is vital right now to keep our minds off the crappy situation we are now in.
So, as much as I want everyone to have a happy New year, I wish you a careful and safe one first. Hugs to everyone.
This might be a really strange suggestion, but I found the movies "Death to 2020" (and now, newly released last week, "Death to 2021") a surprisingly good mood boost despite being centred around the (largely negative) situations over the last 2 years - the poking fun of all the events put me in a great mood. Might be worth a shot!
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