I know many people are dealing with multiple health issues.
More than one autoimmune disease and other illnesses.
It can be a juggling act.
Well yesterday I didn’t juggle well and blew it . I went out in the morning with my daughters. Before plaquenil and new meds for my blood pressure issues. I was never able to get out early . Then I decided to cram three other trips like a normal person would. help a friend with her computer Get some groceries and grab a movie from the local dvd outlet store.
in the middle of the DVD store I had to leave I had to tell my daughter please can you handle this I have to leave . I had to go sit in my car because I was going to be sick
My daughter said the man in the dad store was really worried and I felt awful.
I came home lay down ate dinner with my family.
I knew I had done this to myself I triggered my asthma my blood pressure spiked and made sjogren fatigue worse,missed out on movies with the family as went to bed came out for the end.
I then proceeded to beat myself up for not being a better manager of my health which I know doesn’t really help.
I wonder if I will ever learn.
I know many people are dealing with multiple health issues.
I have the same problem if I do a shopping trip for groceries I’m fine but start adding and I get so tired I can hardly drive home. Your right my blood pressure, fatigue and pain go through thru the roof and it takes 2 days to recover… We really can’t exceed our limits.I am with you over doing hurts. I have RA and SS.
I know what you mean by two days to recover I know that is what I am looking at now it is so helpful to know we are not alone. Family and friends are there but they are not living it. It is so nice to hear it’s okay that’s me too!
Yes so true! I was first diagnosed in 2009 and for a few years it wasn’t so bad,the biologic Remicaid that worked for me gave me chemically induced lupus and once I was off that No other has worked. I now know that I had the SS since at least my thirties but no one ever bothered about that till my hands would swell twice there size.anyway that’s part of my story. Only we that have these diseases really can understand how we feel. Somedays I just get so depressed. I am always in pain in my hands which is why I don’t write this long but the autoimmue connection here is real for me.
I appreciate your thoughts.
Have a nice evening.
Meant so say Hi Mellow at the beginning but I forgot.
When I'm having a good day (little or no symptoms), my brain doesn't remember I'm overdoing it. It shifts into my "old normal" (before I was sick and when I had lots of energy). I used to kick myself for "over doing it." Now, sometimes I pace myself and sometimes not (causing the two day bed rest consequences). I just role with it. When friends are along they help me pace myself, if not I forget about it.
Having been diagnosed for 16 years: also with lupus, non-alcoholic autoimmune hepatitis, discoid lupus and a host of secondary, very serious medical problems--I have to roll. The better days are a real blessing.
I appreciate the sharing from all of you. It's nice to know that you all understand, where family and friends don't.
You go to hold on.
It’s odd that our bodies still remember how we used to be and can do things we will pay for.
Like today I woke up with much less pain then usual but yesterday I stayed I and didn’t do much.
Currently my right foot is in a boot due to broken right metatarsal which I didn’t even know I had because Celebrex kept the swelling down. My rheumtologist took an X-ray of my
foot and said it was fine. Since it still hurt I went to orthopedics and it was broken.
I was taking Listoril 5 mg for my blood pressure but it mad me cough at night so I changed to HCTZ 25 mg which works much better for me.
Feeling decent today so I’ll take that blessing.
Hope your feeling as well as possible too.
Thankyou for sharing all that you are dealing with.
It must be very hard not having the full use of your hands which is something I take for granted.
And to have no medication to help.
What a huge challenge. I am also sorry to hear about your foot also.I am so glad you got to have a decent day. I am so with you on every decent day being a blessing.
I had a better day too phew!. I really like how you have described our bodies remembering. I feel that is very true and it is really odd. I hope you get another decent day today too. It is 9.00am in the morning here and hot and sticky we have a tropical climate with humidity I am hoping for a Slow day.
I am sorry to hear You have so much to deal with.
I really appreciate you sharing how you role with it. I never thought of it like that I am going to take your advice on board. It is also interesting how all of our bodies remember what it used to be like and I was thinking they probably always will
I guess that will always be part of the journey.
I feel with each little loss I had it crept up slowly on me the acceptance of the new reality. I this sounds a little bit vain and this is the least of my worries and I should be greatful I can see. But I have the most big ugly glasses that dig into my nose. I basically cannot get round the house without them or I would be bumping into furniture and it is a pain because my eyes are always dry and itchy anyway so contacts would be useless ,well I am not allowed them anyway, But it was nice to think I could wear them if I went out somewhere special. I realise I felt this loss harder because it was visible to others and I had an unkind comment from a relative who said can’t you get an operation which I can’t because I have high myopia and of course sjogrens means eye problems.
I realise it is a very stupid think to care about especially with what many of you have to deal with
I am pretty familiar with this too. Its taken a long time but i have learned to stop feeling guilty that the house isn't perfectly clean (though I don't like it) and rest. If it helps any, I take stock of my day before I go out and really think about what needs to get done and then treat it like I am routing deliveries. I put together what makes sense then plan what I can do another day. It does stink a little to not be able to just go all of the time but I find that I still get satisfaction from completing what I intended to and I can go longer stretches of time between flair ups. I have also (very very slowly) worked back up to getting in workouts. It is possible but we need to take care of ourselves. I think it is that we "remember" what our old life is but I also think I get tired of having to remember I'm sick too.
And Mellow, its not stupid to care about times that someone is insensitive. I'm sorry you had to deal with that. It was very wrong on their part to snap at you.
Thankyou so much Enjoylife,
You certainly have helped, I am going to take your example of taking stock of everything and good planning. I so relate to what you mean about the house not being perfectly clean I need to stop feeling guilty about that too. This morning I also looked at a big pile of weeds and leaves left in the garden thinking what a mess and my family said why worry we can help you later in the week it doesn’t matter if the gardens aren’t done I will learn to live with it though not liking it as you said. Your kind words about the glasses incident means a lot. When people say these things it sometimes adds to the guilt you already feel about being sick. I think I need to accept I am not everybody I am me so why care what they think. It is very inspiring to hear you have worked up to work outs I hope I may get there too!
Mellow, I'm glad it helped. I had a lot of years of dealing with symptoms before I got to a diagnosis and that brought its own changes. I find that the idea of a new norm is both appropriate and laughable because things can change so quickly. However, what keeps me going is remembering that a flair is a flair, its generally not forever. The things that are long term are the ones that I incorporate into my game plan. I find that I have to keep going on a positive roll or I can end up bogging myself down. I also had to find ways (or should I say still trying to find ways) to deal with the fact that we have something of on invisible disease and most people will never fully get it.
One a side note, I mention this fairly often but you may want to look into 2 writings that sometimes help explain to others what we deal with. The popular one is the Spoon Theory. Its cute and it does break it down. The other that I really like for close people is An Open Letter to those without Sjogren's Syndrome. Maybe it'll give you some ideas for insensitive people.
Thankyou so much again for sharing very helpful advice. I will definately look at those writings.
I over do it too, then I end up having difficulty falling asleep so that definitely affects my next day. I remember that 'I'm sick', 'it's okay to admit to being tired', that 'I really can't do as much as I think I can do'. We want to be normal, we sort of remember our previous normal, we feel guilty and plain out and out lazy if we don't accomplish a certain amount of things. What's worse is when I'll be doing something simple and wham! If I look in the mirror I can see how dry my eyes and lips suddenly are, that dragging body through mud is there and I actually look a bit pale... when this happens I can point it out to people around me and say- See... I'm sick. We spend our time trying not to feel like this, that's why we do need to rest frequently.
A personal experience for me recently- drove over to Walgreens to get my prescription and to get a gallon of milk- I almost opted not to get the milk. I tried to lift it, and I just felt so embarrassed not to be able to do it. I certainly didn't want to ask for help but we needed the milk. When I got home I curled up in my chair, told my husband to get the things out of the car and then took a short nap.
Sorry everyone if this ran a bit long, I still want to post it... but it has just come to my attention I'm running a temperature (I'm usually 97.2, was feeling warm so I just checked: 99.4... It’s not really bad but I'm thinking that typing and responding to posts might be a bad idea.) Hope everything I wrote applies to this post and that I didn't royally mess up along the way- if I did my apologies.
Hi everyone, I’m sorry to say a flare is my normal state. Since I had to get off Remicaid after 3 years which caused chemically induced lupus which went away after I got off it. My husband of 16 years has no medical background and really just gets I can’t do much. He cleaned all day because he is a neat freak and I have never been. He thinks just cause he sees me he knows about RA,Fibro and SS.
He is perfectly heathy and I haven’t been in years.
It’s just so depressing to me. Just feeling really depressed tonight.
Rae you said it really well and I think we can all relate to being broadsided with looking/feeling ill. I for one, have had that exact experience more times then I can count. The only difference is these days i don't freak when it happens…not I just get that "oh no, not again" sensation. yuck. LOL
Kquixtar, I'm sorry you are feeling down. It can be hard enough to deal with this without handling someone close also. I hope it helps that we are all here for you.
Hope you are feeling a bit better today!. I know what you mean when you look in the mirror and you say yeah I look sick.
Thanks for the well wishes. I've got a nice cold- coughing, sneezing, temperature fluctuations... but so far it's not as bad as the last cold I had so I'm keeping hydrated and being extra lazy. :) I'll be better soon.
Colds are rough when you don’t feel well in the first place…
I love tea with honey,watching movies and reading. I HOPE YOU FEEL BETTER SOON!
Take good care of your self
I love tea too and the same about movies and reading. I hope you are doing okay too.
Another frustrating day. I'm having so much pain in my feet and sharp shooting pains up into my legs. I'm exhausted. I did too much yesterday doing yard work. I had x-rays of my feet and a bone scan on my feet today. Nobody can tell me what's causing the pain. My rheumy isn't sure if it's from my Sjogrens, RA or polymyalgia rheumatic. She also not sure if it's a side effect from one of the many medications I'm on. I too take Evoxac for my dry eyes and mouth. I still don't have tears which as we all agree is frustrating. I know people wonder why I don't cry. What I wouldn't do for a good cry if nothing else to have a release.