Friends,
I was diagnosed almost 5 years ago with GCA. Like many of you I tended toward type A overachiever. I was progressing nicely and looking forward to the day I could join the zero pred club.
Now- enter THE PANDEMIC of 2020. I feel like I have lost all my resilience to face a hard task. It must be the way our brain is functioning in a reduced world. Anyone else noticing a big difference in their “fight or flight “ function, or just a decreased motivation to face much?
You are certainly not alone in this. My more extrovert friends certainly seem to struggle more than I do. Perhaps you could use this time to explore your quiet creative side and see it as a gift?There is light at the end of the tunnel now.
You are right, find the quiet side! The dragon slayer in me needs to step it down!Thanks for that.
The Covid episode has pulled away the way of coping mentally from many. Could also be low adrenal function which may be given a run for its money with the stress of it all. I remember my mojo went as did any motivation and I didn’t even have Covid to blame, when my adrenal function was poor.
Yes, it's been tough...my sister says she feels dead inside, perhaps becaus of so long with nothing much to look forward to........positive thinking for 2021
I certainly don't feel "dead inside" but I do get bored more quickly now. You can only read, do crosswords, play Suduko, etc etc for so long then even they become boring.
The times my mother said "go out to play - you've always got to have your nose in a book".
Whatever else - no definitely not bored!!!
You haven't really got time to be bored.
It's the 'time' that I find difficult to deal with. Didn't realise how many hours there were to "do things" in - I didn't notice it before Lockdown but now???
I agree with all of the posts above but now winter is here there aren't enough hours of daylight to get anything done - (not helped by my inability to get myself out of bed any earlier than usual, 'the usual' not being at all 'early' because of lack of motivation.)
Me neither..............and I get to do one hour a day at my wasgij.................mind sometimes it stretches to more and then I wonder were the time has gone. 🤔
Still pottering, in garden and today I cut 5 roses for the vase, reading, catching up on stuff I wanted to watch but could not for various reasons and bless my neighbours who check everyday to see if I am OK or need anything especially if they are going shopping.
Sunday papers delivered by another lady, who runs the WI and today on my doorstep was a hand knitted angel from the village craft club, everyone in the village got one...............so it is now hanging up on the small tree in the window and I have put a halo of lights round that Angel.
Tomorrow, card writing day................
Roses to be cut in December? Oop north?
Yes, and one of the five was Super Star - climate change!!!!!
Wow! Roses in December. Could be the title of a book.😂
Do you still write cards - even though you send the internet ones?
I've stopped sending cards. I just ring all my old friends for a chat. Must start that soon. That, at least, will give me something to do.😏
Glad you have so much help. So many are alone at Christmas (and I didn't say "old" people).👵🏻
Yes Constance, but only to my friends who are (don't mention oldies) and don't have a smart phone ( I just have a basic one and only use it when out and I need a taxi etc) Desk Top computer, tablet, I pad etc. So we do still need 'snail mail'.
Loads of Grey Panthers are not 'Silver Surfers' never had occasion to use or work with computers and don't have a smart phone (many cannot afford them) . It drives me mad that Govt, Councils, GPs and many more just forget about them and make life extremely difficult for those who have no access. Not everyone has offspring and Grandchildren and no money either. During Covid the libraries are all closed and quite a number of the population used the computers in the libraries and the librarians or volunteers helped those who were not au fait.
Rant of the day 😠 and an apology for letting off steam............ I should have turned the radio off.
It's easy to forget that a lot of people don't have access to the internet. Even the doctors expect you to have one.Some would be able to afford one but if they used the internet it would cost!
I've given up watching TV and listening to the radio - it's nearly all bad news anyway.😕
I also gave up writing cards. I have arthritis in fingers, base of thumb and wrists - so it's a pain to write. Luckily all our friends/relations are on the internet.
Rant away! Most rants are really interesting.😂
Keep calm and healthy. 🤶💐
Amazingly my 'peace' rose is still blooming and I am still eating my tomatoes, albeit now picked and ripening indoors.
OH brought in last of roses last week, look lovely.....
Had five late buds on my wonderful & unusual rose Koko Loco, realised they'd not bloom properly with the frost we have here in The Highlands of Scotland , so took them inside to a vase, where they opened beautifully and we've had the pleasure of them for almost a week. These are the small joys that sustain us in the difficult days.
What an amazing rose!!!! Never heard of it before ...
took one look at it, checked RHS, and then ordered it (bare root) for my new raised beds. 😄
Hope you are as happy with it as I have been. It varies in colour across the petals from a pink into cream and the whole look is one of delicate parchment. I can see it in a bouquet with a 1920s style dress.
So far I have only been disappointed in one rose and I have 14 different
kinds.
Yes, I'm doing so many crosswords.... The thing I miss most is sitting in the garden or summerhouse....roll on spring!....
Weepy.
Me too....however seems to be in conjunction with both feelings of good and bad (happy/grateful crying or sad/downward spiraling of mood). Was worse at higher pred doses, and at beginning of Covid pandemic while “stuck inside”.
Conflictual conversations and/or too much social media (hype about election, Covid, etc.) lead to nightmares a few times, and given my history with PTSD, I knew it was time to make some changes. I don’t consume the news (haven’t for years now), instead I carefully filter my incoming data only checking our local health unit website as need be. Taking a break from social media also currently because I would get frustrated and angry watching some of the stories on my feeds.
I also recognize and honour all the challenges I’ve endured this year. Flare in January, which meant upping pred dose AGAIN, loss of uncle, father-in-law, and lastly brother-in-law (suicide), in August. Ending a long-term friendship with best friend (although it had turned toxic), is still a loss. And then there is the ongoing worry of my adult children who certainly are experiencing their own woes. Who wouldn’t be weepy given happenings in 2020. So I cut myself some slack and normalize my response (crying, feeling defeated/helpless, and anxious).
I still cry when I’m filling out my Christmas cards, see my twin grandsons and watch the sunset with my hubby.....filled with gratitude and love. Thank goodness for GOOD to combat the challenges. Sativa strains of cannabis help stabilize and “lift” mood as well 😉.
Yikes. What a year mine has been less losses but still finding it stressful. Hugs!!
Before diagnosis, while I lay on my bed for almost 4 months, I was so low and in pain, sleeping most of the time because of the amount of pain killers I was taking, I didn't even miss all the things I used to do on a regular basis (I've always been very active). After a day on 15mg prednisolone I was 80% back to normal and started to pick up where I left off 4 months prviously, and I haven't stopped! I'm now on 7.5mg and I feel fit and healthy and although I know it's the prednisolone that's helping to achieve this, my attitude has also changed. My only concern is that I might overdue things and get a flare so I'm trying to pace myself. I'm now off to clean the car. inside and out and actually looking forward to doing so. I hope you get your mojo back soon.....x
Time is playing tricks, I don't spend much of it wondering what the time actually is but every time I do it's Thursday again, and 8p.m.
Uncertainty, apprehension and a lot of Pavlovian conditioning over the last self-isolating months has altered my behaviour: step away sharply from people; less driving, and therefore a lessening of confidence; too much news/speculation, not enough true information; 'flight' reflex definitely in ascendence.
Slow to adapt it finally dawned I needed structure in my always-Thursday life, too wide a horizon in a restricted world is confusing. You end up doing not very much, in my case. Not a time-related schedule (never been one for strict routines) but having an outline of beneficial things to do to fit in whenever: walk, exercise, phoning friends, making plans (another thing that has become undermined by the soup of conflicting instructions from the gov.) We're voiceless over all the current big issues, but we have to feel 'I matter' and regaining a bit of personal control is a start.
When we don't know what will happen, how can we make the best use of where we are now?
I think it's the inhibition of spontaneity - standing away from the door when you open it, always remembering your mask, always remembering to wipe the handles and stair rails, wiping all your shopping before you put it away, social distancing etc, etc, - which drains energy. Then the flat feeling when everyone fades away at the end of a Zoom or Skype chat which reminds you they aren't there to have a coffee with. Still it seems there is light at the end of the tunnel but I wonder what long term effect all this restraint will have on us - or on those of us who have been sensible anyway.
And don't you just get sick and tired of 'being sensible' sometimes! You're right, spontaneity has left the building (wiping the handles on the way out..)
So today I spontaneously spent the morning listening to 'Under Pressure' in the iconic recording with Freddie Mercury and David Bowie... I've always loved this, and it boosts my energy enough for a 'dance' around the room with Marigold gloves on (washing up... phhhht). Then I really listened to the words, written in 1981 but this should be the theme song for 2020. To quote just a few lines: 'Pressure pushing down on me, pressing down on you.. under pressure that burns a building down, splits a family in two, puts people on streets.. It's the terror of knowing what this world is about, watching some good friends screaming 'Let me out'.... how prescient. I looked at Bowie and Freddie Mercury giving it their all, PMR poked its head up and my eyes filled. Worth every minute of being in the moment.
I definitely hear you. I had so many plans, hopes, and dreams. First illnesses got me, then the pandemic. I haven’t seen my son in months and as we go into lockdown, I may not see my daughter either. But every day, I am thankful that I don’t have the virus. I learn new creative skills, listen to inspirational or spiritual videos, write letters, phone, go for walks, exercise. I wonder what future my son and daughter have. Take a day at a time. Try to stay in the present moment. With a vaccine not likely until the end of 2021 here in Canada, it is all we can do.
Perhaps it has little to do with GCA and all you are suffering is what we all our, "Covid Fatigue"..it is very real and zaps your resilience because you've been fighting such a hard battle all along
I'm so sorry you've been feeling so bad. There's a very heightened general level of anxiety and gloom in society, and each of us has our own struggles within that context, especially with health challenges like GCA and PMR. I think the only way to survive OK is to work with the conflicting duality of it - it's awful and we hate it, but it is what it is and we have to live with it. There have been some really good ideas in the replies - limit the news you expose yourself to, work within your emotional resources and your energy levels, think small and positive, and above all be kind to yourself.
Even though we can go about as normal now here in Sydney I find I am still trying to avoid Christmas crowds. I knitted and read through winter and have started a new project a patchwork quilt that will take a year or two to complete. I've also started reading A Suitable Boy by Vikram Seth. This will also take some time as it is the size of 4 books.I have tapered to 9mg now and off methotrexate due to nausea.
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