When adversity happens I get to see how much I have adjusted day to day to ameliorate, easily cope with symptoms.
January has been a month of trials.
All three of us hit with virus and down for the count for about 20 days.
Finally vertical and standing.
Had to make a drive down to check and coordinate some work on the estate home.
Yes, that is still a major weight on my shoulders. Had a offer last summer that tanked at the end of summer.. lost the prime selling time.
Interview other realtors and even lawyers.. start anew.
So I drove down Saturday got into home.. wow it was cold in there.. 40 degrees in back area. NO HEAT. And all files up at our home.
Was weird my fingers puckered from the cold.
Contractor and realtor came over. We called around.. HVAC all out dealing with previous calls.
So we lit gas fireplace (which had not been used in years) turned on wall oven top and bottom. Checked fire/ carbon monoxide alarms.
I went to Home Depot to buy a space heater for basement (we did not want frozen pipes and all that could happen).. they only had Kerosine left.. I know nothing about those.. spoke to a sales person in another aisle, mentioned space heater and she said there was ONE in the front of store. Bought it. Realtor came back with one from his own home and homemade chocolate cookies from his wife. :)
Ended up staying at home for 4 days/ 3 nights.
Slept in the bedroom with only a space heater on a chair and multiple covers.
Got call from energy company that power might go out.
Put my things in bathroom off foyer.. if fire alarms went off I could grab my things and go out front door. Pulled car out of garage in case electric went out. And two flashlights next to bed. Snowed Monday.. watched it fall from the windows that flank the fireplace. Took some photos for listing.. why not.
DH had given me and electric throw blanket for Christmas.. wish I had that with me.
Have to say I was clearly drying out. Cranraisin here I come.
Eyes raw and lips peeling. Dull headache.
Called HVAC Tues morning recommended by Realtor and they got a tech over.. by 11:30. I actually hugged him. Yeah.
He knew the home and had met with both of my parents.. Wow.
He needed more part so I gave him a key. He could leave it when he left.
Got near home and just wanted to cry with relief.. where is a bottle of artificial when you want to faux cry? ???
Light for tire on the way home (on highway) had gone on.. so filled up car with gas and put air in tire.. need to get tire fixed.
Picked up granddaughter from school bus.
Neighbor, I think took a look at me and offered to take her to play with his little girl.. Thank you.
I wanted a warm bath to warm myself to the core.. but, I was just too tired.
Went upstairs and wanted to hug my crock pot.. LOL..
Put granddaughter to bed at 7:30.. you can do that when they are little and cannot tell time.. ;)
Took until today, Friday.. 3 days to recoup from all that.
Contractor said "You could have stayed at my house".. but I was worried about having the oven and gas fireplace going. It did bring the home temp up to 63 degrees.
I still often forget who I am now and go back to the independent, self sufficient me of old. I "liked' me! and am enormously take aback during those times DH refers to me as "Frail". The body can't, but the mind and spirit still wants to.
DH had been away so he got home yesterday and I was able to freely crash.
So what I joking say is true:
" I used to be a Dandelion (hardy).. and now I am an Orchid (body sensitive to environment)"
Speaking of plants even the three 8ft plants in the home had cold damage on the leaves.. they must be about 45 years old. :(
So now it is over.
I can look back and chuckle.
I think I am still a "tough cookie" ;)
WOW! was that a marathon. You are right about us missing the person we used to be. I am that way at times also. Not so much anymore, but can pull it together to accomplish a thing or two and then spend 3 days in my recliner sleeping my "fun" off.
I also can have delusions of grandeur thinking and planning the things I want to do in the future. Then I get in front of a mirror and am reminded that I am "indeed" old and sick and have to realize that someone has to be the grown up. So, I am relegated back to reality and doing just a tidbit of what my former self could accomplish. Where did that girl go?--I ask!
We are all 30 year olds living in this old body as we age and especially when chronic illness hits. The days of our lives play out as time goes by. Sounds like the title of a song!!! Irish
QD
That sounds like a nightmare trip. I'm sorry to hear that you are still going through the trauma of selling the house. But well done you for getting yourself back home in one piece - I hope you are feeling warm by now.
Irish, I love to read your posts. They are always full of common sense and goog humour. I take off my hat to you.
Kathyx
Dearest QD,
You are having too many 'challenges'.
This too shall pass...but when, oh Lord, when?
Hugs, Elaine
Dear quietdynamics,
I don't know how you did it. You are one amazing person.
I do wish for things to turn around for you, so you can have true "quiet dynamics" in your life.
Thanks for your support.
I stayed home this weekend, while contractor does some work on home.
I only did it one day at a time; just like a flare.. you never know how long anything will last and I did not foresee being without heat that long.
It was the 'dryness' that did me in and the waiting, not knowing.. sound familiar?
For myself the uncanny thing about SJS is that it 'feels' as though only yesterday I was "whole and hearty". Go through the throes of a flare and then it quickly recedes in memory.. is that a primitive survival mode? How quickly the pains of childbirth recede?
Time so interesting.. with all the fatigue and crash/naps .. I quip I have only been vertical perhaps half the time .. so 10yrs.. feels like 5yrs of real-time life. Up time has much improved with new treatment protocol.. bad thing is I look around and see how far behind I am. So focus on the pluses.. how I adapt and get things done and manage "living inspite of Sjogrens' .. lol
"...then spend 3 days in my recliner sleeping my "fun" off"
Sometimes in my head that old Chumbawumba songs goes into parody
I get knocked down, then I get up again
Nothing is ever going to hold me down..
Then my ??? part
Sleeping my life away..
Sleeping my life awaaayyyy...
It is getting better..
You raise a truth that resonates with me quietdynamics: How quickly the details of flares disappear from my memory. In fact, this is one of the most embarrassing parts of my experience because I think it implies a lack of credibility :-[
In 2013 I went through months of excruciating pain and an entire array of weird and wild experiences, and since then I have had many smaller flares. But I have to think REALLY hard sometimes to remember exactly what symptoms I had in a flare that made me so miserable. Worse - the timelines get all mixed up. I can't remember how long flares lasted - or perhaps how long any one symptom lasted within a flare. Symptoms come and go, some are constant or repetitive throughout a flare, some are repetitive across multiple flares, some last a long time within a flare, and some are what I call 'one-offs'. And all of it is covered in varying layers of fog.
Every now and then my husband will say - 'Remember when <insert symptom here> happened?' And I search my memory banks and nope - I do not remember :( Other times I'll ask him that question - and I'm completely incredulous that he can't remember something that shines so brightly in my memory :-\
Because of this, I think it's easier for some of the people in my life to come to the conclusion that whatever is happening is 'all in my head' because I can't keep track of the details.
Yes, it really becomes a blur.
Flare --> flu-like symptoms; then ask someone months later what their flu was like months prior and be prepared for a blank look. ;)
2011 when Neuro asked me to keep a diary, that was when I saw how helpful they are not only to remember negatives .. but, also to read/see how I have improved. Med benefits.
I actually charted how much time I crash/napped and was shocked at the loss of real-time... so when I said to a Dr. I am only functioning at 40% of normal, I was not exaggerating.. :(
Like living in an 'unparalleled universe" and not being able to leave... sigh.
Then write out a brief timeline for Specialists and just update as needed.
Time marches on .. sometimes we just need to catch the wind. More often the right Drs.
It is so easy for me as many of you to have, in my thoughts, "oh I am going to do this today, or soon anyway," then two minutes up from my chair and I fix water etc. in a glass of ice, and think well I need to sit down to drink my water. Then I get back up after my meds have enough time to maybe kick in. lol...
On my way back from the bathroom, and I see something that needs picking up so I do that. Wow! I just did something. I have got to where I count those little/big things as having done something worthwhile in my day.
My precious hubby does most of the cooking, and I try each day to fix all the dogs their food. At least I am feeding someone. lol....
I was so happy one day when I fixed my hubby and me a special dessert. I just made sure it was one that was easy all in one pan like peach cobbler etc. would be.
I love the holidays, but my son's birthday is Dec. 21-hubby's is Dec 25- daughter in laws is Jan 2. I love each one too, and look forward to their day, but afterward I am so so tired. Actually, all during them too. lol....
susanep :)
My very first post on here.
I have been fighting this battle for nearly 20 (diagnosed) years.
I feel stupid & guilty for my loss of energy and inability to easily accomplish 87 things per hour.
Background: I recently celebrated my 60th birthday & think, in my head, I'm still 28.
My insides & outsides don't match.....
Not meaning to hijack your thread, just not sure where & when to start on this forum & suspect I cannot start my own thread until I've
A: posted X number of times
B: figured out how this forum functions
Please take care & fight the good fight, OP.
Hi Gacats, and welcome.
You sound just like me!
But younger, of course since I'm 73.
However, one of the 'blessings' of Sjogren's (etc.) is learning to 'let go' of the need to accomplish 87 things per hour.
Mindfulness is the 'gift' that comes with my 'conditions' that was forced on me, and for which I'm grateful.
I recommend a book: How to be Sick, by Toni Bernhard. I had to 'hide' it from my husband at first since he thought I was taking lessons in being sick even more...and 'giving in' to being sick.
Well, hey! 'Sick won the battle a long time ago! In fact, 'sick' won when I was born and I was lucky antibiotics became available about the same time or 'sick' would have won the war!
Welcome again,
Hugs, Elaine
You all have some interesting thoughts. It makes me think about all the times I sat in the doctors office and when he asked me about recent symptoms, etc. I would draw a blank and then try to explain only to not remember the full magnitude of my symptoms.
I have always said that the docs need to come and spend a week with us to see how our life really is. Irish