Many of you won't know me. I am sure that there are many new members who have found this site since I went into a Covid inspired hibernation.
For those who are still here and supporting others , or still travelling the PMR /GCA road with all its bumps and diversions , after nearly two years , Auntie Bee has popped back up to say , "Hello! and Good Luck for 2022".
My first thought , way back when Covid first arrived like an irradiated bull with the poops into our precariously stacked China shops , was that nothing much would change as the Worlds New Normal was already our New Normal anyway. I'd already been in a form of isolation waiting for help with my Cardiac issues for five months before the pandemic , so how bad could it be to be living life at home for a while longer.
Bad! Bad , bad , bad , baddy bad , bad is all I can say.
My eldest daughter , which old members know as Eric , had to come home for about eight months , while the Film Industry shut down and London was unsafe . My OH had to teach online from home for up to a year . Yet , what sent me under the covers and triggered various flares over 2020 was the free fall that the Normal Healthy individuals in my circle of "so called" friends dropped screaming in to for basically having to live life with more care , and more like people like us.
My little spot of tranquility that I had adjusted to be comfortable living in was suddenly constantly full of people noise and activity as everyone moved there outside lives into my retreat , and all the new isolated healthy folks seemed to bombard my phone with calls , needing to be talked down of various ledges because they had to stay at home and I was obviously the first person they thought of whom was at home and probably had nothing to do .
Top that with the worst Covid effect for people like us with Chronic issues, although we may not have caught it , not getting regular access to our usual services of Physiotherapy or regular checks and it was a pain and symptom super explosion .
My Dysautonomia was properly assessed just before full Lockdown but my Cardiologist forgot to write his recommendations in his notes for my new medication and that also took over a year to sort out.
I had been battling to get to a local RHEUMY for more than a year and then Covid became the new reason not to get to see them and because of my other health issues . I had been stuck with the choice of a super fast taper off steroids but no other help as I had no access to the new biologic drug I should have gone on to. Ehlers Danlos and Dysautonomia meant the risks of steroid use on those conditions far outweighed the issues from GCA/PMR if GCA,was in remission. We basically waited as the steroid numbers reduced to see if GCA had regressed enough to cope with it until the biologic was organised .... But that never came . Luckily GCA was in remission but right up to the middle of this year the miscommunication about my cardiac medication needs meant virtually constant stiffness and pain .
Going back a little though , my intention was to come back out of virtual isolation but each time I felt more able to drop in and give support but then like an attempt at a Domino Race World Record , one domino seemed to drop after another .
By the end of 2020, I had begun a new distraction that could fit in with my issues to need to remain shielded from the majority of humanity I began using photography as a way to exercise my body and brain , not the professional art I used to love but a growing new artistic love that may become a profession .
I begun to cope with my more restricted regime and my daughters had both moved out back to work , even the endless trigonometry lessons that floated through the walls on loud pings had ceased as everyone got to go back to school , even though it did mean having to socially distance at home from the OH and him being cleaner than he ever had been by having to strip and shower every night after returning home .
The regime of others using LFTs and ALWAYS leaving them out for me to clear up from the bathroom cupboard dressed like someone dealing with a nuclear leak became an unusual addition to my new normal.
I thought , despite the new growing pain and stiffness, that 2021 would be better and then things really went awry. You see all those months in shielding and isolation with no access to proper check ups took the toll on the older members of my family.
My mum had a fall and ended up in hospital where they discovered that her primary care had dropped the ball and she had a familial liver condition which was beyond treatment . She fell in and out of hepatic encephalopathy over a space of three months : the stress of trying to deal with helping her by dealing with doctors and inappropriate suggestions of discharge from a hundred miles away added to my daily routine . Finally , after three months she sadly passed away , and despite having my first vaccination my shielding status meant it was still too unsafe to be with her for a few minutes at the end. Then the horrors of a Covid restricted funeral . And another , and another....
At the same time as my Mum went into hospital ( literally there was two days between them) my favourite Uncle had to go in with sepsis from an infection as the poor chap had no pancreas , he sadly passed three weeks after my Mums funeral .
And then my Aunt died from sepsis as she was sent home with an injury to her hip which would have normally been observed for a few days in hospital which in Covid times meant she was sent home and told to call if things got worse. She got no pain to warn her , she was tired and asked to go for a nap , two hours later when she hadn't got up my other Uncle went to check and found she had passed. Sepsis in the hip bone had reached the heart , she'd had a coronary in her sleep and died.
In fact , of all the deaths I experienced of relatives and loved ones in 2021 , a total of 18 , none of them died because they had Covid , it was the Covid Effect on available health care that caused their unfortunate demise.
I finally got to the point of taking my Cardiology department to court by June because of their errors with the medication oversight. I would have been doing this from the courtroom floor I was so incapable of movement .
Getting a thrombosis in the thigh from a trip to a funeral was the final straw. They finally sorted it out and the new drug began a minor miracle which I knew could happen if they'd only pull their trousers up and prescribe it. Funnily enough, when I went to get my repeat the Pharmacist noted that he would always have it in as although it had never been used before he seemed to have four other patients taking it now .... Umm! Wonder why!
Again , just as I thought things were improving . GCA had gone into remission , it was now vascular migraines from my dysautonomic tachycardia that I had to keep in check. I planned to visit you all , come back with news and help , and then , Boom! Or should I say Widdle!
Just as the third wave was encroaching and we all needed to get to our third vaccination , two months of a full on bladder and kidney infection . It meant I was shielded on antibiotics even before Omicron hit the tarmac . With Covid and Noravirus in my local hospital despite my GPs wishes to hospitalise me , he feared I should not do so , so he monitored me at home instead with the horrific promise that if it got worse I would have to go in. 50th birthday uncelebrated , Christmas cancelled again as I was shielded , despite the third vaccination my immunity was still too low to consider being near any untested members of humanity .
So it's the first day in 2022 , the infection is hopefully in the wind ( and when I say wind I am beginning to wonder whether sprout fuelled farts are a holistic cure ) I got out for a walk and caught the first sunrise of the year from my local beach this morning.
Facetime out of the way with my two dishevelled , mildly hungover children I thought , finally , get on that tablet and send some greetings to your old friends on HU and tell them your New Year Resolution is to come back from time to time with some helpful support or news.
I will keep everything crossed that 2022 will let me keep it ... And believe me with Ehlers Danlos Syndrome there are parts of the body that I didn't know existed until I'd accidentally crossed them!
Take care all and keep positive , Aunty Bee xxx
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Blearyeyed
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So lovely to hear from you and so good you have had the courage to still think of us when you were going through so much. Life can hit you with so many things and keep on doing it.
I can only say, let us hope that 2022 does not hit you or anyone else with another load of unwanted presents.
I have saved the photo in my file.............you still have the knack of taking a brilliant photo. xxxx
Thank you so much ! And thanks for all of your non HU forum support and the ecards you have sent me over the last two years. Believe it or not , it was those little gems dropping into my inbox that kept me going far better than the medics could.I especially liked the New Year card which proved that you can still kick up a storm in your dancing shoes , even if they are only virtual ones!
Hello Bee - what a time you’ve had…..Wishing you All The Very Best for 2022 - that the Medics get your Meds sorted & you can be the best that is possible for you.
What I time we have all had but we must be showing what mettle we are made of by still being here to tell the tale.I hope you got to spend some more time with your family this Christmas , I know they are your best antidote , and you get to enjoy their cuddles and a trip or two to enjoy your guilty pleasures at the nail salon this year too.
Oh, it's so lovely to "hear" your voice again. I remember how it cheered me on during the first stages of my treatment. There was so much for you to endure, I admire your resilience. I hope this year will bring us all some relief, god knows we need it. x
Yes , as I always used to say , keep positive and keep looking for those silver linings every day , no matter how tiny they may be. We adapt and we survive , hopefully with the odd little treat in hand and something to keep the smile upon our faces not too far away.Big hugs and hopes to you and yours xxx
The only upside to having a house full of people was I could send the others out to wrestle the homicidal home waste containers. They seemed to have gone quite quiet over the last year and I'm just wondering whether the aliens inside them actually caught some extra terrestrial form of SARS-2 and that they are all suffering from long Covid!Nice to know we are still all as mad as ever , big hugs my Viking Queen xx
Oooooh - hadn't thought of that! Daughter No1 reported that their bins didn't budge during Arwen although her bloke was dodging trees on the way from the Borders to DNo1's - and no, I have NO idea why he decided to travel. He did get there safely in the end though.
Yes , the wind has been crazy here for the last few days and still not a peep out of them. It's a shame we had to have a major global pandemic to get our bins to behave appropriately though.Long Covid also seems to be affecting my remote controls and my WiFi signal too !
I hope that Christmas was not too quiet for you and that we both get a happier New Year , hugs , Bee xx
Nothing would be too quiet to be honest!!! HU helped by messing up my email notifications so keeping an eye on the forum wasn't as easy as it might have been!! I enjoyed eating what I wanted, when I wanted and how I wanted! And last night I roasted a whole sea bass - with garlic as there was no-one to whinge it smelled
😂😂😂I heard a tale on the radio yesterday about a woman whom had taken the opportunity given by the Covid issues in her family to hire a shepherds hut on her own and she was enjoying NYE in front of an open fire with a full bottle of champagne and her favourite smelly cheeses all to herself , so you are right , sometimes there are benefits on having time to yourself ... Especially edible ones!
Thank you so much , thank goodness the bins have been behaving themselves as if I had , had that to deal with as well it might have been the final straw and I may have just surrendered and let the things eat me once and for all!Best wishes to you , your family and your hopefully well behaved waste collection units too , hugs , Bee x
My goodness me!! I've been on the forum since 2019 but I'm afraid I didn't know you too well from before ....but I really feel I do now! What a catalogue of challenges you've faced! You're clearly resilient and I admire your determination and persistence in dealing with and overcoming all these obstacles. Inspirational!I can only wish you a happy and much healthier 2022 and truly hope your life becomes calmer and more settled now.
Thank you so much ! We are all warriors when it comes to chronic illness and our daily scars are the medals of honour to wear with pride proving that we are winning the war , even if we might lose the odd little battle.
Here us hoping that the new year and the new normal brings you better health and new possibilities you mightn't have even thought of before PMR/GCA but become a positive part of your life well after you've shut the door on this pesky illness.
Hello Bee, I have missed you on the forum and it’s so lovely to hear from you. I am truly sorry though that you have had such a dreadful time. Wishing you and your family a happier and healthier 2022. Sending virtual hugs, Irene x
Thank you and the same wishes to you.I have missed chatting with you all and the positive feeling being able to help and support my forum friends gave me before all of this Covid related stuff bit me on the bum.
Supporting others and having their support in return really does help to make you feel more positive and more able to fight what is going on. I was just so sad that I didn't even have the energy to reach out even with a short message to ask for help or at least say thank you for the messages I was receiving.
Luckily , the messages I received via private message from time to time did lift my spirits and many HU members that may not pop up on the forum luckily popped up on my email and kept me going . I really can't overstate how much peoples kindness made a difference to me and how bad I felt.
I'm just happy to hear from some old friends like yourself and see that we are still surviving , plus I did read the posts each day to see that you were all coping alright.
Wow what a story.....amazing where our strength comes from....especially when it's one thing after another....I sincerely hope things get much easier for you.....
Thank you so much. I have to say I couldn't have coped without all the support I got from from my poor overworked OH , who has helped me get out for little walks with my camera as I can no longer do any of my professional art activities , taking on much of the household work, including the tedious cleaning of any shopping coming into the house ,and generally being a good egg by understanding how much my health conditions impact on what I can do. I can't wait until I can finally get back to indoor public spaces but I think 2022 , after the growing uptake of the vaccine and testing by general community , will make that possible.
There's always hope and always a silver lining even if you need a microscope to spot it , life will be better for us all soon.
Yes, same here, my life has changed so much....OH does most things, he ch ops and prepares the food and I cook...to be honest I hate it....but we must keep positive that things will ease....xx
Yes , adapt and survive . I do internally stamp my foot in the frustration that I have to give up doing so many things and often have to stifle a tut at poor chopping or badly finished cleaning , but I know I cannot expect perfection or things to be done just right anymore and it's definitely not worth using what energy I do have on doing things that aren't really as important as I thought they were before. At least we are still healthy enough to feel like tutting!
Keep basking in the small pleasures , hugs , Bee xx
Lovely to see you back on the forum - I’ve very much missed your contributions - but my, what a story!
I’ve thought of you often and wondered how you were doing, in particular every time I make kale crisps to your daughter’s recipe - they are a staple here now as I get tons of it in my organic veggie box which I started during first lockdown. 🥬 😉
Hoping 2022 will be significantly better for you than 2020 and 2021! 🤞 x
Thank you so much and for your kind thoughts in the last few years. Being so close to Christmas I have been thinking of your tree dwelling cat. Things are going to improve for us all when the healthy general community start to change certain habits and get vaccinated , in fact it may make going out and about better for all of us with chronic illness because peoples greater vigilance about hygiene in public spaces and better distancing may reduce the amount of other nasty viruses that we can catch more severely than others that trigger our symptoms and slow our recovery.
Glad you are still making the kale chips , I will let Grandma know , she us now beginning a new crafty life and working and training as a traditional sign writer for vintage trains and carnival rides . I tried a new flavour variety over the Summer using a dash of Worcestershire sauce during the cooking process with some smoked paprika and garlic powder, very tasty.
It's so lovely to hear from you again. I have thought of you over on the island from time to time and wondered how you were doing. It sounds as if you've had a really rough ride. I'm sorry for all your losses and all the extra medical problems too. You still seem to have retained your sense of humour, sometimes it's the only way to keep going isn't it. I do hope you are able to drop in from time to time.Love and best wishes for the New Year, Louise
I might even drop in on you if I get over to the main land in the better weather on one of my photography walks. It would be lovely to meet you in person , even if it is from 2 metres apart for ten minutes ....although the thought could be filling you with terror!😂😂😂
I hope that you are still managing to enjoy some small pleasures in your garden and conservatory and that you have managed to find the right medication and routine to cope with all the neuro pain you were experiencing on top of your PMR.
Take care and keep looking for those silver linings , Hugs , Bee xxx
Thank you for your lovely reply. It would be good to meet up one day. Right now cases in Conwy are so high I'm keeping any contact with people out side the family to a bare minimum. I keep thinking i've given up on gardening but it doesn't seem I can. I'm hoping my husband will make me a couple of waist high beds in an area between the door from our bedroom to the cabin we spend most of our time in when it's warm enough. The theory is that if I keep passing them, and can see them from my bedroom window I might keep on top of them! I'll find out next year.
I feel as if my PMR may have gone so any pain is the fibro. It's not usually so bad that a couple of paracetamol and codeine won't chase the worst of it away. I'm certainly feeling stronger than I was a year ago but still can't do very much without triggering a fibro flare. I still find it difficult to judge the fine balance between doing enough to get stronger and doing too much!
Oh , that is brilliant news!So , you are off the garbepentin as well?
If you can manage to keep your Fibro in check with the minimum amount of pain or neuro medications and have got your lifestyle exercise balance as right as you can that is the best success you can have , well done you for getting so far , you give us all hope that we can get there too.
Getting the pacing , diet, and gentle light exercise balance is really the key to getting your pain managed in the long term for most chronic illnesses , even more so than finding the right drug combo really , as it is that , that helps you stop yourself from doing more than your body can handle day to day , and then triggering the flares that force the need to up whatever drugs you are taking.
It certainly speeds up your road to recovery , or path to a positive life with a long term chronic condition, to run the race like a sensible tortoise than a hare.
Big hugs to you, and I think the planting boxes that you can have an odd tinker in when you pass by is a great idea.
Perhaps when they are blooming in the Summer we could meet up in your garden and I could get the chance to photograph what you've grown. Bee x
I didn't stay on Gabapentin very long! It really knocked me out and as the fatigue has always been more of a problem than the pain it really wasn't worth it. One of the big psychological changes I've made is that i am effectively disabled so will need to keep using a wheelchair when necessary. I actually get more excercise when we go out with the wheelchair as I can alternate walking and resting. We can get right round Bodnant gardens this way- I walk up and down steps and on the steep bits. The boxes will be for veg not flowers so not very photogenic but I do hope the flowerbed outside the cabin will do better next year. A warning if you do visit though is it's about a mile up a single track lane which some of my friends are scared of! Lifts from the bottom can always be arranged if necessary though. It would be lovely if you could make it.
I actually went to Bodnant a few times last year after the outdoor lockdown ban and have been many times since taking photographs of the flowers and changing seasons.
Like you , I see it as empowering to accept that I have disabilities and altering mobility needs , its not as a sign of weakness or failure to do so.
By doing that I open my options up much wider for activities and exercise at a level I can cope with and the people I can go out with know what they can help me with , and know that I might need them to wheel a chair about in case I need it, or that there are certain places I cannot follow them in and that I need more rests .
When everybody knows and accepts that this is the possible course of things its much more fun and simpler for everybody. I definitely get to do more , I have more energy because I'm not stressed by the idea if taking part and I am not fatigued and stuck in pain for days after it because I felt I had to do too much or had to walk instead of using the practical tool when I needed it of the wheelchair or my walking sticks.
That's the success of the big H for Honesty in my H.A.P.P.Y theory to a better chronic lifestyle .
If anyone else is reading this the above means , H for Honesty , A for Acceptance , P for adaPtion , and P. Y for Pace Yourself.
People have stopped being frustrated if I need to cancel something or stop half way through now too because they understand why and they are actually really happy if I can come or do get involved because they know I must be having a good day.
I'm looking forward to getting over there to see the daffodils in fresh bloom this year as the lifting of rules allowing us to visit outdoor spaces came just a bit too late last year and the fields of flowers had gone past their cheery best. Perhaps we can bump into each other on a visit there , although you'd have to put up with one of my gluten free brownies and coffee from a flask as I doubt I will be able to go in a cafe or sit in the public space outside them for some time yet .
OH wouldn't accept his limitations - he refused to use the wheelchair. He had bought an electric scooter - but in October after we'd had a restricted summer doing nothing by which time it was too cold for him to use it. And weeks later he fell and couldn't use it anyway. It is sitting in the cellar. Pristine and unused. I might use it if I can't get the walking better - doing well so far!
I have a friend whose version of accepting their limitations is to admit she has them but not take the steps to improve her options by being willing to use a wheelchair or taking other peoples support to get the opportunity to do more . As such , it means that she makes herself unnecessarily more housebound than she needs to be because of her shame or embarrassment at the idea of being seen outside the house getting help overcoming her disability. In her case , it seems very bizarre , as she has had disabilities since birth because she has the rarer hip related version of Ehler's Danlos . I suppose , in part , her view seemed to changed after she had children ( a massive achievement in itself with the life threatening risks having children with A/K EDS is ) it appeared to me that she was desperate to prove that she was as good a Mum as all the more active ones and didn't seem to accept that that didn't mean you had to hide your disability or make yourself feel terrible pain to be one. Even now our children have grown she still refuses to let others see she made need physical help in public places.
It has been seeing her, and how much she misses out on, that has taught me that trying to hide your disability doesn't make you appear stronger , it is actually very limiting .
Its empowering to show that you aren't afraid to let others see your limits , and , you should be proud to show others how much you can achieve with the limits you work within in my opinion. It's good embrace the close relationships you create when you get help with them too.
You can always work like me and Louise with her scooter when you feel like trying it and use it to take you to places that you want to exercise in or enjoy walking about rather than expelling half your energy on the walk to the places you want to go .... Like you're own personal mini bus.
I'm quite tempted to get one with a top that looks a bit like a monster motorbike but the family are all trying to keep me off one to keep death of the roads!😂😂😂
Ooh! I'd love to photograph that. I have many arty close up still life photos of vegetables now , I think in the right composition they are just as beautiful as their showier , petalled, counterparts, and I love those floral displays that combine vegetables or fruit and flowers .
Oh Bee….what an ongoing set of challenges you and your family have faced. I’ve missed your posts however your time away from the forum is totally understandable! I feel for you having to navigate all your health woes during the pandemic! I send you my wishes for healing and peace moving forward.
As mentioned in my NYE post, collectively and individually we have faced trauma, especially with the many losses we’ve experienced in isolation. It is apparent that we are in need of collective/individual healing and resilience. To this end I’ve collaborated with two other Restorative Justice practitioners who specialize in healing circles, to develop a Pandemic Healing Circles service. Two types of circles will be offered to those who have lost a loved one and are struggling processing their grief, and those who experienced non-death loss (ie. job loss) and ambiguous grief.
When I think of this support service, I think of your experience Bee. Hoping 2022 results in better health and better health supports. You deserve this!!
Thank you so much for your kind words , especially as I have read how much loss and grief you have had to suffer too over the last few years.
Your Pandemic Healing Circle seems like a very positive and proactive thing to begin to help others in this time of crisis. Is it available online to be used worldwide , or is it just for people in your area or in Canada?
Luckily , for myself , I have worked on and off with various grief projects because of my experience of losing my father at age 11 and the impact that my Mums grief had on her mental health and her behaviour towards me.
A number of years ago there was an amazing Grief Festival ran out of London but also featured on TV and online which was an amazing tool to help people to get passed their fear of talking about death or grief and its impact on us all.
What many of us may forget , or don't realise , there are many forms of grief that impacts on our lives and can disrupt our physical symptoms as well as our mental health , and not all forms of grief occur after a death.
The grief we feel about changes in our lives caused by changes in our health , and the feeling of great loss at being unable to continue with certain activities or the knowledge that we cannot continue with work , and the end of phases in our lives cause an equally intense level of grief as a death in the family because it is like feeling the death of a part of ourselves.
I have been tempted for sometime to make proactive steps to get involved in some form of help and support and advice to help those cope with the grief associated with chronic illness , a grief compounded even more in this time of pandemic when the loss of certain abilities or freedoms of movement have prevented many of us to have those final moments with our loved ones or the chance to find closure through the normal memorial activities.
Please keep me up to date on what you are doing with your Groups via private message and if you would like any support or need to find people to help with research, please , don't hesitate to contact me
Liked - not liked, but you know what I mean!!! You have such a way with words ...
We missed a 70th - no visiting allowed except sitting in the corridor. Although under the circumstances I should have been allowed in according to the Ministry. However, my Bete Noire doctor said no ...
It's certainly been hard , especially in circumstances like those that we have experienced in the last year. Not having the same chances to have last moments with loved ones was the hardest part for me , but Covid was rife and my Mum and other relatives were on the Wirral so I had nowhere safe to stay either. My Mums doctors said it was too dangerous for my health to visit even in the most extreme circumstances and although my doctors did try there best to get me fully vaccinated in time I was still in the two week waiting period when my Mum passed.
The scary thing is how much of an impact this pandemic has had on the health status of all people with any chronic illness that was not considered immediately life threatening because of the loss of access to exercise , physiotherapy and general healthcare. It's been nearly four years since I've seen a local Rheumy , that just Welsh understaffing not just Covid and the idea that they thought I could have an Opthalmology appointment via Skype was ridiculous . How can they have any idea if you have a reoccurrence of a chronic eye issue if they haven't actually tested your eyes is beyond me.
We are going to have such an explosion of extra issues and the fact that chronic illness sufferers are deteriorating because of lack of health access over the next few years and well into the future. I would also like to say to anyone whom states long Covid is not a thing that it stands to reason that it is , as our bodies autonomic system has to reboot and repair slowly after any major infection. It's basically the same fatigue / pain / neurological issue that chronically ill people suffer as the go through adrenal issues , or in some cases like my own , as part of their life for good.
My friends husband was bad in hospital with Covid last year , part if his long Covid issue has been the onset of narcolepsy which we discovered when we found him waiting for a bus as he is not allowed to drive.
Absolutely. GPs need a bit of a kick - because they are currently creating part of the problem. I call my GP and speak to her, if I need to see her I see her, F2F. I have had several OP appointments in the last year. AND my dentist is working normally - has been except for the first 4 weeks in March 2020.
Long Covid is no different from any other autoimmune disorder developing post virally - that has been obvious too. Funny how suddenly THEY got all the services we can only dream of. It won't last though ...
Yes , that is a real bug bear to me. Years of people with chronic illnesses being gaslighted and told that the Fatigue / Pain complexes aren't serious or don't exist or you just have to muddle through it and now suddenly they believe in it and want to look into ways to help people with it. And now people like us whom may have been waiting years for proper help for these as lifelong issues still aren't getting access to services we have need for because it is apparently too difficult to separate access to Covid and Covid Free , and apparently those with long Covid are in more urgent need than those with other severe illnesses whose symptoms have been impacting their activity and are increasingly disabled because of it .I have not been able to see a dentist since this began because of backlogs and because they don't want to treat anyone with vulnerabilities unless its an absolute emergency , apparently three broken teeth and constant tooth pain from the Periodontal Ehler's Danlos type that I have isn't classed as an emergency to deal with!
The lack of real research or facilities or specialist knowledge worldwide into autonomic dysfunction is going to make it an uphill struggle to help those with long Covid anyway , just as there has been no real work in finding non pharmacological ways to reduce the impact of adrenal issues .
Most doctors haven't a clue about advising people about how to improve autonomic health conditions as they haven't studied it , when , in reality , it should be at the heart of studies as it is that form of nerve / brain / cardiac dysfunction which impacts on the progress and deterioration of symptoms within most long term diseases and severe infections.
My dentist is working normally - has been since the first 4 weeks which were emergencies only. He says it isn't a problem - they use PPE anyway and the rooms are cleaned between patients. Everything is now in cupboards and only what will be needed immediately is out. He has a single-handed practice but works multiple patients in separate rooms. I've been a few times.
Just watched in awe as this message got sent to you. All over Christmas and New Year my posts were rejected despite contacting the administrators! Glad they are going again now.
There you go perhaps luck is changing for both of us in 2022. Thank you for your kind wishes , I've missed chatting with you all too and I'm really hoping that my energy will let me keep it up , hugs , Bee x
That is so kind of you and thank you so much for your thoughts and messages , seeing those little private messages from my far away friends pop up from time to time in my message box really did make a difference and helped get me through it all.I'm hoping we all get a more positive year and that everyone , both healthy and chronically ill , may have learnt some good lessons about how health can be effected by our behaviour and how we need to be more understanding to others needs so that life out and about for people like us is a lot easier to live.
Take care and I hope to be speaking more often soon , big hugs , Bee xx
Onwards and upwards , I've kept one resolution to do what is important and keep in touch , and I'm building up my pace slowly each day so I hope to have a much easier year and wish the same to you too . Take care , Bee x
I’m newish here but welcome you back. Astounding story of your last few years!Super photo !
Thank you so much , its so nice to get well wishes from a new member . If you don't know me you can always have a look back at some of my previous posts which long time members will know usually tried to give as much practical and positive advice and tips on pacing and keeping positive mixed up with a little fun . Hoping to make lots of new far away friends like yourself this year and to be able to give everyone a helping hand and some support when I can. Take care , keep safe and keep positive , Bee x
Will do although I don’t t have PMR thankfully but a rare condition - Stills Disease which manifests as joint pain, stiffness and swelling, similar to RA and some overlap symptoms with lupus which led me to HU. The whole site is very informative and supportive and makes me realise I’m very lucky compared to some of the stories I’ve read here .Happy new year 🥳
As a mistress of the overlapping and rare diseases I can understand where you are coming from.
Thankfully my GCA/PMR seems to be in remission now , but specialists are sure how that the cause for me suffering from it at an early age was because of the stress and damage being done by the other syndromes and illnesses I have which were not being properly treated because of lack of proper diagnosis over many, many years bringing on illnesses and syndromes that are usually seen in people of higher ages or different ethnicities and lifestyles.
The good thing about HU , and certain groups , especially groups like this one , and the Lupus , RA and Heart Groups, is that you see that much of the time the most successful combinations of medication and the most helpful types of exercise and lifestyle changes are pretty much the same to give greater relief from our multi systemic conditions . So , even with the rarest illnesses, like your own, or the weirdest combination of common and rare multi system illnesses , like mine, you still get to find support , understanding and practical tips to keep you as healthy as possible while dealing with your long term illness; and the changes it can cause.
I'm hoping to be back as often as I can now to give back to the group and help people if I can like I did before.
Feel free to delve into my old posts if you want that do help give practical tips for dealing with chronic illness in general with a bit a humour to try and make your day feel a little lighter.
Having so many different things trying to send me down a ever changing bumpy slide of health I have, rather unfortunately, quite a broad knowledge of different illnesses and personal tips I use to make things easier that I'm more than willing to share . I'm always happy to receive personal messages on my message board too if someone wants to ask a question that they don't think it will fit in a post on one particular disease forum or another.
I'm not sure if Stills Disease has its own support group on HU , I know Dysautonomia doesn't.
As someone whom has suffered with my conditions all my life , had been misdiagnosed in my youth and twenties , or sent away undiagnosed on a magic gas lighting carpet and then spent thirteen years and counting getting to the point of diagnosis I am at now and still face a battle getting the treatment I require or access to a specialist that understands what I have I completely get how you feel. I'm hoping I may finally be at a point that I can have all my ducks in a row, and have the ability to send some so called , scoffing , specialist away with a flea in his or her ear whom tries to convince me I've not been diagnosed correctly just because they have no experience of what I've got..... It only took me 50 years to get there!
I suppose it proves that perseverance will eventually succeed , as long as you have enough energy and time to do it in .
Not that new, but newish, I remember a couple of your posts from early on in my PMR journey, very sorry you’ve had so much sadness to deal with. We have been shielding for over 2 years now…I thought, at one time, that everyone on this forum is…only one visitor in our house each year, the Aga service guy, & haven’t been in anybody else’s house, or shops (except a quiet farm shop on two occasions!) I buy everything online, from paint to compost, & we put the Wednesday food delivery into the shed (cupboard goods) & motorhome fridge/freezer for other stuff…it stays in there for 3 days, then comes into the house…saves having to wash it all! Likewise all mail & parcels go into quarantine for 3 days, then into our home. Every time I think of stopping these procedures, there’s another wave!! Oh, & the bins have never been so clean…at the top, anyway! The garden & living in a forest has saved our mental health a bit. As everybody, missing 40th wedding anniversary, holidays, family, friends, pub meals, cafes, shops has taken its toll! Hope your health improves now you’ve at last got your medication, & your life settles a bit! Happy New Year, S x
You do have the fun of living with Santa in that forest if my memory hasn't escaped me which must help to put a smile on your face.I also remember that much like myself you had other health issues on top of the PMR in the house which caused you greater need to be extra vigilant even before Covid reared its ugly head because of immunity so the two of us were more used to the practicalities of keeping germs at bay.
The practicalities I think were the easy part for people like us , it was the slowness in the uptake in the rest of the world and government policy that made our lives much harder than they had to be because it has meant we have had to be deprived of a lot more social activity and the ability to go to public places and events because we could not trust how well disease control was being followed there.
It certainly does take a mental toll not feeling that you have the option to return to the odd trip inside a shop , cafe or gallery but I'm hoping I can feel more confident and that will change as more people are vaccinated and most places do start to check if people have tested , or " Flow before you Go" , as they call it in Wales . It really isn't a blight on the freedom of life but actually gives us all more freedom to make choices and get our lives back as even the most vulnerable can feel they can finally get out if the house.
Living in the country does help though , the chance of getting out and about with my camera on little walks near home has been a real mental health saviour for me. My heart goes out to anyone in our circumstances that lived in towns and cities during the last few years without access to a car , I just hope they used all the available ways they could online at home to keep positive and mentally well.
Take care and keep an eye on those bins , hugs , Bee x
A neighbour issued one of those general invites over xmas "Come and have a glass of something" - they too have been isolating, they are both over 80 and have a Downs daughter in her early 40s with congenital cardiac problems. I'm ashamed to say I haven't overcome the inhibitions yet!
On the upside , if all people that would give you an open invitation to visit they would be more likely to understand that you weren't being rude and why you were choosing to stay under your blanket . I wouldn't have done it either even if I was out of full shielding unless I could meet somewhere outside or well ventilated and spacious. The concern for me would be , if they'd given me an open invitation how many other people in similar circumstances had the invited too whom may have visited before you and been in contact with someone else that had just infected them. Six degrees of separation really adds up as you think through the people you are in contact with in a day.
We are hoping that the UK schools take a sensible firebreak and take a couple of weeks of online teaching at the beginning of term just to reduce the chance of infection after the holidays . Unfortunately , they are still only giving guidance to wear masks in classrooms it's not mandatory unless Heads choose it and they are very reluctant to do it despite the lack if room ventilation in winter.
Its a scary feeling each day knowing that if the pupils haven't tested themselves as requested , which most don't , my OH , whom could get seriously I'll himself as a Type 1 Diabetic has to share a room with 5 different sets of up to 30 students per day , up to 150 people whom have all been in contact with many , many more people at home , out and about or on the buses before sharing a confined space with him.
It's not surprising that so many teachers and staff are catching it and passing it on to their families without more rigid rules being put back in place to make things safer for them all. There'd be a heck of a lot less disruption to education , health care and access to indoor public things if people could finally understand that following more rigid rules would give them more freedom and continuity instead of chaos .
My daughter is in A&E and treated an asthma patient with a chest infection a few weeks ago - wearing an FFP3 mask and it still didn't stop her getting the chest infection! Not Covid according to multiple tests but it poked her own asthma and she was bad enough to be put on 40mg pred for a while. But it doesn't say much for the mask - that is infinitely better than the medical masks that people don't wear properly anyway. We must have FFP2 masks for shops and public transport - and carry our Covid pass and be jabbed or recovered for public transport, LFTs are no longer enough.
That's the main issue really , that people , including government bodies that makes the rules , forget that it isn't mask wearing or vaccines alone that give the best protection. Its those in combination with varying levels of social distancing and hygiene that has the mist success.Unfortunately , mask wearing alone has two major faults.
1. People then think they don't need to keep a sensible distance between themselves and others in indoor places. That wasn't helped by governments choosing to reduce the rule from 2 metres to 1. Most people were not standing 2 metres away anyway , so when it reduced to 1 metre many people returned to being 1 metre or less from others.
Masks still allow tiny amounts if particles out which can travel upto 3/4 ft despite the mask reducing dispersal of these air borne particles. By reducing the distancing to that exact distance it makes it possible for some transmission onto the face or past the mask if you are only 1 metre away from someone else.
2. Most people do not wear masks at home or visiting their nearest friends and family , but those people are also the people that they more likely to be at risk of catching something from as they are not likely to want to keep up social distancing with them either.
By not keeping at least some space between you and your friends and family indoors while your mask is off there will always be a greater risk of vulnerable individuals with health issues and reduced immunity of catching something from others , and not just Covid .
If visitors haven't done a test first to prove they are not carrying Covid, even if they haven't developed any symptoms themselves, lack of distancing ( which we all want to do with our nearest and dearest ) will mean that we are still at much greater risk of catching something even if we keep our mask on.
Of course , we don't want to be stuck forever in a position that we don't touch , kiss or cuddle anyone or wear masks all the time . But in certain cases , making sure those you are meeting have done negative tests before getting together, limiting the number of visits we do or have with different people and different places in one day , keeping visits in indoor spaces shorter , keeping more distance between you and others for the majority of time you visit, keeping the masks on for the majority of a visit if you are severely vulnerable , and using hygiene after touching things or people ( including getting children to wash and change after school before visiting and having big cuddles at grandmas) these things are all going to be key for a little time longer if we want to reduce the numbers of severe cases , even if the government doesn't dictate it.
Quite ... THAT is how you will "live with Covid" as they keep banging on about. It doesn't seem to change life greatly here because many of those measures are compulsory but not adhered to by all, If they were, life would be practically back to normal - though maybe with fist-bumps instead of huggy-huggy which of course is normal here ...
If we see people we have our own version , we stand well back with our arms out wide and shout " Hug!" , a bit like the little monkey in the childrens book of the same name and then smile and giggle behind are masks , much less awkward than the how hard should we do it fist bump dance we find , and no personal contact to worry about either.
Heh ho, I’ve replied twice, long newsy anecdotes, it’s crashed twice, so time for supper..much more fun now I have a bad hand & arm tremor….not allowed to carry food & drink, & if I fling much more round the cottage, Santa may ban me from eating! Tremor now spreading to other side! 8 months wait for neurology referral, despite referral being requested in sane hospital! Inflammatory arthritis has come along…wrist splints at night, thumbs splints, compression gloves, personalised foot insoles (more than £100 each pair…no, I didn’t payment just too the two free pairs gladly!) Santa forced into retirement, reindeer in forest getting fat & lazy! Fibromyalgia still flaring. Got down to 3mg, then got sick, & after 3 weeks, back to five. Have an occasional day at 4mg, but it’s naff. Life as normal, oh & yes, our fifth winter, Christmas & NewYear shielding due to lung issues & immune system defects before PMR started…such fun! Taking lot more photos here, too, studying the wonderful world of fungi…colourful & amazing! Do take care, great to hear from you, S xx
Another fungi lover brilliant , when I can spot them I love photographing them , Scats has seen the odd one I took and liked them , we should find out a way to swap snaps.
I totally understand the frustration of the tremors and fibro and having to wear various splints and braces , mine have been building up for so long now that I look like a technologically adapted ninja!
Getting down to 5/4 mg in your current status while still waiting to be assessed for something else is a minor miracle you should be proud of.
It is going to be hard to keep reducing when these other symptoms are triggering flares in your fibro , in turn triggering responses in inflammatory conditions that you have like your PMR and arthritis.
Don't forget , many people with different types of arthritis , not just RA , are on larger doses of steroids for life to control the inflammation if they also suffer from other multi system conditions too , you may find that you get to a plateau in steroid pain relief and need to use it long term and there us no shame in that.
Has anyone suggested that you get a heart monitor and keep testing yourself , especially when you have more tremors , or as a base test by comparing your heart rate and BP from lying down to standing up ?
It might be worth getting one and testing things out just in case you have one of the autonomic nervous conditions like POTS , which can be quite common with people suffering with Fibro.
Its big swings in heart rate that count a lot with these conditions and lifestyle changes can make a big difference to how often it affects you or how severe your tremors and weakness is.
Unfortunately , most GPs and specialists have very little experience or knowledge of these conditions and don't take enough interest in your heart rate and how it changes with movement even though the condition or symptoms are quite common for people with all different sorts of medical conditions.
Thanks for interesting info…I will look into POTS! I have a blood pressure taking thingy, but must admit I only use it if I think something is wrong!! I’ve been reading up Essential Tremor & the symptoms fit…but with an 8 month wait I didn’t want to read too much until nearer the date! Otherwise you can get fraught thinking you have something dreadful!! The tremors occur most when I pick something up…never at rest, always on movement. They vary between more of a ‘trembling’ to a violent flinging around excitement! I spoke to a different dr at our surgery when I had extra pmr symptoms at 3mg. He said it wasn’t connected with adrenal problems, but that my body wasn’t ready for it, he said he keeps some of his patients on 5mg for….ever! I have an appointment next week to talk to my own doctor, who has been excellent throughout. I did get referred to a rheumy for arthritis. She was interested in my fibromyalgia & did the tests again,but seemingly uninterested in pmr, just asked which if her staff diagnosed it…when I said my gp did, she said ‘well, how did he do that?’ Ah well, she said she’d see me in six months time…should have been October…it never happened, but that’s par for the course in all depts now, not all their fault! Take care & don’t eat the mushrooms! S x
That is the trouble isn't , you have to wait endlessly , especially at the moment , to get to see a Rheumy because they insist that every diagnosis isn't right unless its been rubber stamped by a specialist. GPs can diagnose many conditions as well as a consultant if they have read up upon it but they often wont start to treat you for it because they have put into the position of feeling that they need to have their diagnosis double checked.
What annoys me is that you often get to a Rheumy whom has no real interest and has no real knowledge of a condition and then they dismiss the original assessment and leave you in the soup again.
I've been waiting since 2018 to see a local Rheumatologist all my diagnosis to date ended up being done at a CoE in England or off the back of my Opthalmologist at an Emergency private run consultant in relation to my GCA. I can't get my final EDS gene typing until I see them but I already know from previous experience that the few staff they have , have overturned GP diagnosed EDS because of their lack of experience. It also doesn't fill me with confidence about the Dysautonomia as my amazing Rheumy Physio asked for their opinion on someone with my conditions and they said , I quote , " Oh! We wouldn't have an Fxxxxx clue where to start there". I'm not surprised I still haven't heard a peep.
Fibro is definitely a condition that can be diagnosed in a GP surgery with some Xrays/ blood tests to confirm the lack of other conditions. In fact , so many Rheumies still live under the idea that it isn't a real condition you might be better off.
Drop me a private message as I'd be interested to know if you get more tremors after movement or when you bend up and down.
Many people with neurological conditions also suffer from a certain degree of autonomic dysfunction which with some simple steps can be reduced and can help reduce the pain and symptoms from your main complaint.
As you cannot get to see anybody yet it may help add to your medical information for the Neuro appointment if you ask your GP if you can do a 3 day monitor test with the monitors they have at the surgery. If you keep a detailed diary of times you get up and down and do the simple getting up and then sitting down test each at a certain time on it he will be able to see if you are having heart rate spikes and drops or bp swings which could be making the tremors , and your fibro pain worse.
I'm also going to ask my physio friend about exercises they give people with various tremor related conditions to see if there is some basic advice he gives that might help you reduce the tremor effect , he may not be able to help , but you never know!
He told me what they had said in complete confidence and as it was a conversation in private between him and two allegedly better qualified Rheumatology staff members ( Senior Consultant and a Junior Registrar) he wouldn't have been in a position to take it further or want to rock the boat. He basically told me the truth of it because he wanted me to know just what we were working with and how out on our own we were in terms of trying to get the right help in managing my condition.Yet , despite there being no Rheumatologist appointments at all , let alone specialists in Fibro and EDS , and no Neurological Specialists in Wales dealing with Dysautonomia I still can't get a referral across the border until they sign off on it.
Ridiculous!
As they are , and from other peoples experience and accounts , obviously shoving the files of patients with conditions they aren't specialist in to the bottom of the pile , basically because they are pretty sure you may not die from it!!! So letters come back saying I've assessed your case and will see you in twelve months or they bump for checks in a different department or sign you off without seeing you at all.
If it wasn't for Covid I would have started a complaint process by now , but of course they can say with all truth that Covid us causing delays in all but emergency appointments at the moment and not need to admit that there was already a problem because they only have one senior rheumatology consultant in the North Wales Trust ( across four hospitals).
It's why I have missed my physio sessions so much since Covid began as he was the only professional I have met whom had an interest and was trying to build up a working knowledge in autonomic dysfunction and how a physical treatment could be organised to reduce the tachycardia and extra pain it causes. I was his most willing guinea pig , we were even considering collaborating on a book.
Losing those therapy sessions and hydro treatments each week has definitely made my symptoms and pain much worse. I'm just glad that it appeared the steroids and our work may have done enough before I had to stop them to put the GCA in remission.
I would mind less if they were honest enough to admit that to the patients - being a fundamentally nasty person, my hope is that they will develop similar problems themselves and realise what they did to us!
I have lost my pain clinic option, run by anaesthetists and they are deemed to necessary to do such menial tasks (Covid is a convenient excuse), and physio is restricted - I had a problem in the summer and was referred for physio. When I finally got the assessment - and he agreed I needed something - he omitted to tell me I couldn't have physio until 2022 as I'd used my allocation but did offer shockwave therapy (same principle as used for stones but aimed at soft tissue) which he swears by. It does seem to have achieved an imrpovement but it coincided with OH's death and the resultant drop in both stress and activity doing things I didn't ought to so maybe it is the combination. But I have bicep problems - some manual work would help there but how? I have reduced my pred dose dramatically since early November which is something - but the biceps aren't any worse. Or better!
That is the issue isn't it , a well informed , I am saying well informed very loudly , can be the most valuable non pharmacological asset in recovery . Getting things like your bicep issue under control then helps you to get on to the next phase of improvement.And all doctors underestimate how much growing pain in other parts of the body impacts on cardiac issues and full nervous system control.
My sessions were stopped as soon as Covid began , then when they began to let people back to physio they began by admitting people with post brain and major injury needs ( totally agree with that ) but then the rest of the spots were only given for therapy for long Covid patients.
Yes , they need the help but most of us with long term chronic conditions need the same sort of help that they are getting and had , had it denied to us for years , and we have been suffering far more deterioration in our abilities because of it.
Of course , there is no access again now , and I wouldn't want to go near the hospital at the moment anyway with Covid reaching some wards , and two wards with Novavirus before Christmas , its a risk not worth taking.
My physio , however , and many members of staff I know working in the NHS are getting really frustrated because as everything turned Covid many of them were not a right fit for working with Covid patients and have felt like they are being left on a shelf , twiddling their thumbs , when they could be working on giving therapy , treatment and support to non Covid , non surgical patients if the Trusts would have only had the sense to create Covid free treatment centres at smaller sites.
I got my physio in September 2020 very quickly - as did a neighbour: everyone else was scared to go to the hospital and were turning down appointments! That has lead to the back-up now no doubt!
And as for the UK preoccupation with Long Covid patients - don't get me started! They have an autoimmune disorder triggered by a viral infection - like ME/CFS and the rest of us except ours wasn't triggered so clearly by a single factor. Even here, OH was left without appropriate treatment as they sent patients home who weren't fit - had he had the right rehab last spring it probably wouldn't have altered the final result but it might have delayed it and certainly made the journey there less painful for both of us. And he had had a couple of admission after falls - that needed physical rehab to rebuild his confidence. In August he was in hospital for his 70th birthday and i wasn't allowed to visit - and in the week he was in they barely got him out of bed so he deteriorated even further, Then lied to me that he was mobile! Luckily I managed to get the palliative nurse sent to assess him when they wanted to send him home on Friday afternoon with NOTHING in place at home and she said no way. Aids are only handed out Monday and Thursday afternoons for an hour - they'd missed the boat and there is paperwork to do. The doctor seemed to think that she wrote a prescription and I picked it up like drugs from the pharmacy.
And for a laugh - we got an electric bed 4 days before he died which took up nearly the entire living room. I rang on the Tuesday after he had died on the Friday (as it was a public holiday on the Monday) to arrange to return it on the only returns day, Thursday - and the woman wanted to know did I not want to keep it to the following week!!!! It was bad enough - the girls had gone so I was on my own to refurnish the living room and we'd had nowhere to sit over the weekend! Thank goodness for the camping chairs ...
Oh don't , I know exactly where you are coming from , when we got to my Mums flat a day after her admittance there was a letter from the surgery telling her to come for her vaccination and a check up and a missed delivery of a set of kitchen supports that could have stopped her having a fall in the first place.Like with yourself , the outcome for my Mum would not have been different , they had missed the liver condition for years always assuming that her breathing problem must be because if her lung condition but not finding a problem or that her stomach issues were because of her bowel , nobody had considered it might be sensible when they could not find a cause for her symptoms to do liver tests or a full abdominal CT.
The three months trying to deal with the ward and get her the right help each day , and prevent them from discharging her because the infection was clear was a daily nightmare , which like yourself definitely triggered flares of pain and symptoms because of the stress. They did discharge her into a recovery home once , in three days her HE was so bad she was returned to the hospital in a catatonic state. This discharge was done based on a ward nurses mental assessment which apparently judged her competent when I'd pointed out to them that I'd spoken to them five minutes before and it had taken her half and hour to put down the phone because she didn't understand what I was asking her do and she couldn't follow simple instructions to press her buzzer for help.
In a way , some of the worst losses we felt last year was with four friends , two died from fast moving cancers which had not been diagnosed when symptoms were found because their initial Oncology appointments were delayed three months for Covid , one of them , the OHs best friend , was only 45 and had three young children.
Two friends committed suicide , not because of isolation but lack of health or social care access. One was not having regular checks and had stopped their schizophrenic meds and nobody knew about it, only 38. The other lost their Mum whom they'd cared for all of their lives and then were told they would have to move out of their life long home after lockdown because it was a council house in her Mums name , she could not get to speak to anyone in the offices as the phone numbers were always busy. The thought of it made her decide to reunite with her Mother.
So sad , and most of these tragedies could have been avoided with a bit of sensible and strategic logistical planning.
Good grief, Bee, somewhere in all the chaos and loss you've been living through your indomitable spirit and sheer grit shines through. You've met the emotional and physical bombardment with such courage and determination and I'm so glad you've re-kindled your creative spirit with photography, it keeps you sane(ish) by stopping the jabber jabber of our heads. I'm experimenting with cyanotype (sun print, well UV light print in the absence of sun), lovely to get lost in making something rather than being a troublesome bag of bones ... Wishing you better health, fewer demanding 'so-called friends', the inspiration of sunrise/sunsets, the sea, time alone, time with true friends and lots of laughter. Happy New Hopeful Year 2022, Bee.
Oh , Thank you so much , and thank you for your messages as they really made a difference popping up in my inbox , even if I wasn't up to answering anything knowing I was in peoples thoughts helped me carry on.
I love cyanotype printing and used to do quite a bit myself , have you tried using old photographs with objects yet , and do you just use card or fabric as well?
Having a creative art to fall back on to stimulate the mind is so important , not just in these limited times , but at all times when you have a chronic health issue . I can never stress enough to people , especially those new to dealing with a change of health how much difference it makes to your mental health , positivity and ability to cope .
Of course , it took a global pandemic , but there are so many ways and options to get into art and gentle exercise available online or on TV now that weren't available but would have helped people who were always spending much of their time living at home now because of their health that it may make life easier for us all in the future.
There is a real catharsis in creating something and allowing your imagination to stray in what you do . Art , Cookery , Music , Writing , Performance can all stimulate so much more positivity or help us think outside the box and work out our feelings about our New Normal but also work out the ways we can live better with it.
Can't wait to see a few photos of your work pop up on here above one if your posts about your health . Let's hope we all have a more positive and creative future and thanks again so much for your kindness and support , big hugs , Bee x
So glad you’ve checked back in. I’ve missed your presence and humor. Sorry for family deaths especially so many and in a short time. One doesn’t have time to grieve and adjust. Hugs to you. 🤗. Ann
Thank you so much , it's nice to see messages from old friends like yourself although my hope is that everyone is still on the forum telling the tales of getting slightly better and slightly further each day down the oath of recovery rather than the tragedy and traumas of my first post. We've all been through a lot over the last few years but I hope that the future will be more positive and have a little bit of fun as life adjusts to a global New Normal .
Welcome back BEE ! My goodness you've been through it. Let's hope this year will bring better times. We've missed you. I still think about the wheelie bin and smile ! X
Thank you so much , and thank you for your private message which I cannot stress too strongly was a great comfort to see and helped keep my spirits up on seeing. It was lovely to feel that I was in peoples thoughts and getting support from afar even when I was not up to replying .As I said to Dorset Lady , the bins have been behaving recently , so much so that I wonder if they all contracted some bin form of Coronavirus and have since been suffering from long Covid. We did get a new sturdy metal one with a lid though , which may be keeping the other ones in line , one can only hope!
BEE, you were such a comfort to me in the early time of my diagnosis. Your calming words and humour helped me to come to terms with my GCA and be more patient. I'm so pleased that in some small way I was able to return the support.
I have had periods like this when it seemed I was nothing but a hapless fool beset by whatever whimsical torments the God's in their jest thought fit to bestow upon me. It can mentally grind you down more when the avoidable folly of others compounds it, but I do ask myself the question whoever told you life was going to be fair? when I get bitter, as bitterness just wounds me further, so why help the God's? You have an eloquent humour, ironic, but eloquent and may it long help to carry you forward.
Luckily , one family trait I have not been dismayed about inheriting is a good sense of humour .... although I wish they'd kept all the random genetic illnesses to themselves , as I often say , if I'd been a horse they would have shot me by now.I think maintaining a glass half full attitude to what us happening in life , but especially when it comes to long term health issues , is essential to maintaining your mental health when you are going through all the changes in life that illness or events can bring.
I may have gone one step further , I'm not just a glass half full sort of girl , but I'm a , " if the glass falls over as long as I can suck it off the carpet things are still quite bright" , personality.
I'm a realist, but one that tries to stay on the Sunnyside , and although I may seem quite mad at times to others , its that attitude that has kept me from falling completely off healthy mind twig over the years , and I hope it keeps working as I go on.
Take care , Keep positive and keep on sailing , Bee x
I have discovered that my Fathers side of the family were replete with Rheumatic conditions and that GCA is largely a condition of White Nordic females being relatively rare in men, also radiation induced Osteoporosis of he jaw (I had treatment for cancer in the tonsil in 2018, both conditions emerged simultaneously) occurs in only 2% of those who receive the treatment and I have that too. However despite being an expert in beating all the odds it has never translated into a Lottery win. The God's, oh how the God's cackle😂
Thank you that's really kind .I think my health and attempt to remain positive , relaxed , thankful and calm while coping with my health changes has had a big impact on what I choose to photograph and how I choose to capture it. I'm always looking for more mindful and hopeful types if composition even if its a close up on a flower or animal , and my street photography seems to focus more on spotting and capturing positive , heartwarming little moments between people rather than the darker side of life. Those silver linings are always about everywhere , even if they or how well you feel can make them harder to spot and looking for them does help to make you feel a little better , even on the worst of days.
Well I have truly missed the marvellous manner in which you communicate ... always full of wit and good fun, even under the most challenging of circumstances. So sorry about the loss of so many relatives, in particular, your mother. Covid might not have been the actual culprit, but she's a selfish bitch and her insidious tentacles have a way of stretching so far. You've had it so tough, glad you're back!
Ooh! Thank you so much for the kind wishes and the ego boost , I'm preening my feathers as I write , in fact, my OH is now looking at my grinning face and straightened posture with great puzzlement.I'm glad to have made the jump back into our communal pond , I know when I get back into the swim of things and get chance to support others and talk things through here that I will be on the way to being fighting fit ?!! 😂😂😂 especially with such lovely compliments.
Take care and I hope your road is improving too. Hugs , Bee x
Oh my gosh! I think I might be psychic! Last night I found myself thinking “I wonder what has happened to Aunty Bee. I hope she is OK.” I open my mail today and there you are! I am so sorry for all you have been going through and really hope 2022 brings better health and happier times. Your contributions to the forum are always so entertaining. You have such a way with words and I have often wondered whether you have ever thought of writing a book.
Keep safe and I wish you better days ahead. - Marea. 💕
We should start calling you Mystic Meggsy , Woooowh! Spooky!Either that or your powers of telepathic persuasion are truly remarkable by convincing me to write a post from great distance.
Watch Out! The powers that be will be putting a bag over your head and getting you to work for them as a mind weapon from a dark cellar somewhere.
Although if you could manage to telepathically persuade people to do the right thing about Covid it would make all our lives a bit easier... " Oooh! Get your Vaccination!" ...." Oooohoo! Wear your mask!"
I'm hoping we all get a better , brighter future too , although a book isn't on the cards yet , but you never know, hugs , Bee x
Good morning, as one of the relativly newcomers here can I say hello and what a difficult/horrendous time you have had both before and with Covid times. Wishing you all the best for a much improved 2022
Thank you , that's so kind , I can never get over how supportive everyone is on this forum.It is the best natural supplement around to be on here.
If you fancy it you can always put your finger on my avatar and go and look at my profile , there's a lot of posts that are far more upbeat and full of tips to help coping with Chronic Illness as a whole as well as GCA/PMR . You might find something you find useful on a day to day practical level , or that might help to keep a smile on your face.
Take care and good luck with your own journey with PMR , Bee x
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Has anyone had to stop actemra?
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Stuck on 13 mg for 4 months, not sure what to do
