Dear Sjogies:
I think the hardest thing about this affliction (plague? horror?) is that my condition and various parts of my body CHANGE every day, even during each day.
Yesterday I started out feeling GOOD. I even walked fairly fast!
Had a doctor's appointment (new doctor, stressful) and went with husband to have our ailing computers diagnosed (mine has gone to computer heaven, sniff). Suddenly at about 1PM, I just hit the wall!
Every bit of energy left my body and I wanted to lie down on the floor and cry. Like a bolt from the blue!
I'm sure it was partly just what happens with this disease, and also the stress of seeing a new doctor and waiting and waiting at Best Buy to talk to the Geek Squad, and then finding out my puter had died. It was also very noisy at Best Buy, and my hearing is very compromised and I tried wearing my hearing aids, which is also stressful.
I refused to just nap, but then spent two hours on the phone trying to sort out a complicated banking problem, where I kept getting put on hold for 20 minutes and then cut off.
Why do I refuse to just STOP? I do this over and over. Even when I'm physically exhausted, I will pursue some difficult problem solving process rather than just STOP!
Here is the part about OTHER PEOPLE: I think my husband and the rest of my family are always judging me. Judging me for sitting, for limping, for sweating, for not doing 'normal things'. Judging me for talking about my illness, for noticing the changes and commenting on them.
I have always prided myself on not caring what other people think! But it is driving me crazy to be around people and to be so limited and changeable.
I feel like they think I"m exaggerating, that I'm a hypochondriac, that I'm lazy, that I'm over reacting to things.
I feel like they want me to just shut up and do stuff.
And of course, they think I'm totally self centered.
This is all in MY MIND of course.
Sorry to be rambling, but this is a very difficult part for me.
I haven't had anything like competent medical care in this area yet. It is hard to get in to a good doctor because I'm on Medicare and lots of doctors here don't take it.
And I know there isn't a cure for this, and I will probably always have this changing set of symptoms.
My own head is making me crazy, Sjogies. What can I do? I need to change my attitude towards myself, and stop projecting it out on other people.
OK, I AM rambling. But this is one of the VERY hardest parts for me. The emotional insanity.
I'm on Cymbalta, but I do need to find a new Psychiatrist, as well as Rheumy, Neurologist, etc.
OK,, I'll stop here.
Carolina
Carolina,
I am sorry. I know how difficult it can be. People think you don't look sick, therefore you shouldn't feel sick. I think it is hard for many of us to "just nap" because we are used to doing things. Our bodies cannot keep up with what our minds want us to do. I've even thought about myself that "I'm just getting lazy". I don't really believe that, but there are times I don't get as much done around the house as I think I should. Hang in there. We know you are sick and you would rather be well doing all the things people expect of you.
Reanne
Please find and read "spoon theory". It sounds like you are ready to understand it.
Hang in there Carolina!!!
What have you been thru the last few months??? Packing to move, getting all your ducks in order in TX to make the move (all your med files etc, not to mention practical things like banking and insurances), the trip itself, reaching your destination and beginning the JOB of unpacking, settling in, the emotional changes of all that goes with the above WHEN YOU ARE NOT SICK!, Now having to find new, competent doctors, preparing to have your grandchildren for 2 weeks! And being 'the MOM, WIFE, HOMEMAKER for how many years? If you are anything like me you wanted to be sure to do everything you could for all around you to make their lives easier and more enjoyable. I hear that in your postings.
NOW...YOU are the one who needs this TLC! You are not a hypo, nor lazy, nor self centered! You are realizing that AT OUR AGE life does slow down and we do not have the energy and stamina we once did, tho the desire is there...which leads to the guilt...then to the projection of that guilt onto others thoughts. If we were not sick we would still be slowing down and reeling form these life altering changes.
NOW THROW IN sJOGREN'S!!! Have you been reading all these postings and noticing the ages of those commenting??? They are half our age! They still have the same complaints as I read from you (well, some not as severe as you are gaining speed with all your life changes lately!).
So take some time, give yourself a break. Sit your family down and tell them you are not the person you once were and it is hard for you to accept that but it would be easier if you had their support. That as much as you love your grandsons, you cannot guarantee they will not watch some TV, play some sit down, slow moving board or card games with you where you can relax and not fell you have to entertain them constantly. You are their GRANDPARENTS, not PARENTS and are entitled to enjoy them quietly as you see fit! If they have expectations of what you NEED to do, they need to see there is someone else there to do those things.
Enough of my rant!!!! Sorry. My dear you deserve time to take a break and if no one else is willing to give you that time you need to stand up and TAKE it.
Now I will try to go and take my own advice.
Big loving gentle hugs...
Gidgie's Gammie
I think, for a lot of people, the hardest part is realizing when you need to stop & lay down. I personally have this down pat. I do not do things when I'm hitting the wall. I just take care of myself. My dad, the most wonderful man on earth, told me that when I'm feeling like I need to lay down, visualize a stop sign. Make yourself have a stop sign pop up in your head everytime you think you need to lay down, then go and lay down. It's important for us to do what our body is telling us, so that something else doesn't happen to our frail bodies.
You know, you are one of the most encouraging people on this board. You always have a kind thing to say to others, and I just want you to know that I admire you so much. I, also, want to be someone who encourages you to not worry about what others are thinking... most of the time this is paranoia. I tend to think people are talking about me behind my back and thinking that I'm lame but really I'm just paranoid. Try to worry less about what others think. Honestly, they are probably thinking what an amazing person you are and how well you deal with all you have going on.
One of my co-workers calls me a hypocondriac... I asked her once what she thinks that means and she said someone who is always looking for something to be wrong. I told her the actual definition of a hypo is: The conviction that one is or is likely to become ill, often accompanied by physical symptoms, when illness is neither present nor likely. Neither present or likely... Uh, hello? We have something that has been diagnosed so that does not fit either of us. Keep that in mind and let people know that if/when they say that to you.
You have been through an enormous change recently with moving. I know how hard that is. It's difficult to establish yourself with a doctor, and it's even more difficult to find good ones, but there are good ones out there. Don't settle. Ask around. If you go to church, ask someone there who they go to. By the way, how did your doc appointment go?
Know that you are highly regarded on this site and we're here for you. I hope you'll start visualizing that stop sign when you overdo and that you'll worry less about what other's think.
~Syng
Sweet Carolina,
I really feel like having your grandsons for two weeks, especially after a big move, is a whole lot on you. Can your husband help you out with them, even help with meals, etc., while they are with you, so you can have quite a bit of rest time.
Also, can you get your family to understand what you're going through, that you really are very sick and that you need their help to get through this? You don't need them to be putting more pressure on you. Perhaps trying to explain the disease to them again or giving them more reading material or email links to read and then sitting down with them and asking them to help you in certain tasks so that you can rest when you need to , etc., would be helpful. Some people respnd better when told that help is needed and that they are needed to fulfill certain needs.
If you could get your husband to understand and then help protect you from taking on too much, that would be great. My husband often tells me I can't do much or helps me get help from my kids who are 23, 20 and 18. However, I usually still have to ask them to do specific jobs, except for my youngest who is a helper by nature and often urges me to let him do things for me. All of them have been a big help to me especially the last few months when the fatigue and joint pain have hit me like a Mac truck.
Hopefully, you will be able to get in soon to see a good dr. Have you called over at Duke yet? I do know a friend who went there because she was on Medicare and could not find a good rheumy in Raleigh who would take Medicare. She's been very pleased at Duke. If you get an appointment, then keep calling back and asking about cancellations. You probably can get in sooner that way. If you do end up getting in with a rheumy in Raleigh, pm me and I can tell you whether it's one that I've seen before, as I've seen 5 and only liked two of them.
I hope that you can get your family and especially your husband to understand, help and protect you.
Thinking about you and praying,
Becky
Carolina
I am so sorry you are having such a rough time. The stress of moving across country is heck for healthy people, let alone chronically ill ones like us.
I have trouble knowing when to stop too. After all thest years, you would think I could figure it out but I haven't. I am like you in that respect. One minute, I am fine and the next, utterly exhausted and unable to move. My husband, who is a sweetie and very supportive, finds that the hardest to understand. How can I explain it when I don't understand it either?
Anyway, I hope things improve and you find some really great doctors soon. Sometimes, I find it helps if I just drop everything and go away for the weekend and get totally pampered.
Warm healing thoughts
Joyce
Oh dearest Joe:
I know about the spoons, I just want MORE spoons. NOW. GIVE ME LOTS OF SPOONS.
yep
a bit of a tantrum.
but you guys are the very BEST
and I do feel better today
and got to the pool which is my salvation.
And will rest
Looking for camps for the kids, too.
Hard at this late day, but hey.......
And my husband will take over, he really will
he's super.
I just get weird.
Kisses
Carolina
Carolina - I'm so glad you came here and told us how you are feeling. We ALL have these days and it sounds to me as though you were overdue a reaction to all that life's throwing at you.
I haven't 'met' you here because I've been off the boards for a few months (bad reaction to Cytoxan and now the shock of imminent heart valve surgery have kept me quiet!). But since I returned and have been reading posts I've come to realise what a star you are, and how many people value your wisdom and friendship.
Thinking of you - Chickpea
Carolina,
So glad things are a little better today and that you got to the pool. The pool is usually a boost for me too. Hope things work out with some camps for the boys.
Becky
Dear Sweet Carolina,
You are not crazy, you are perfectly normal and dealing with a ton of stress!!
I am still quite new to this forum and am still trying to accept that I will never be the person I once was. That in itself is stressful. I don't think it matters how many years go by, we just keep thinking "We have to get/feel better", or this pain, fatigue (fill in the blank) has to end at some point, doesn't it??
All I know is, I wish I were there to cook, clean and care for you! Please don't ever feel that you are alone, and no one understands, because we do.... we really do.
I have two sons, 20 and 15 years of age, I raised them just as you raised your children, end of story. I have already told my sons that I will not be the "daycare" for their children. My hat is off to you for trying to do everything, and keep everyone happy, but if it is making you so unhappy and ill tell everyone "enough!". I sometimes think family, friends, coworkers etc.... don't want to accept that you are not well and may be limited, because then they will have to step up, and most people don't want their world to change because you look fine, but are actually very ill. Been there, done that. Don't allow others to make you feel bad about yourself or that you are not doing enough for them. You need all of your energy for you and that great guy you married. Don't allow others to suck you dry...... We really can't afford that!!!!!
Hope you are feeling better, understood, and realize what a wonderful person you are!! ;)
Hugs
Kristine
Carolina I am the worst person in the world to tell you how to recognize when to slow down. I am absolutely rubbish at it and I can really empathize with how you feel about the suddeness with which our condition changes and with the attitude of others (even loved ones).
This is the right place to come and everybody has said the right things and given you great advice - I will only add to that by saying that down is nearly always followed by up - you just don't necessarily know when. Hope things continue on the up for you now.
Best wishes,
Beverley
Oh my, everyone is so kind!
I have a new internist who is part of the Duke system, and when I see her I"m hoping she can refer me in to the Duke Rheumatologist I want to see!
I was very impressed that my new Duke cardiologist, whom I did see yesterday, knows this internist and calls her by her first name.
And the Duke system has all the information on a patient on one data base, so they don't have to keep asking you the same questions over and over.
I AM impressed, but perhaps not so much since the Harvard plan we were in when we lived in Boston, had the same thing 25 years ago. OH well. Clearly I want all Duke doctors.
The 'thing' about my grandchildren runs like this: When I had my heart angioplasties and stents, over 10 years ago, at age 57, I retired from the University. I wanted to put my family first.
And my French grandchildren started spending every summer with us, flying alone from Paris (the first year Matt was 7 and Emma wasn't even 5 yet!).
And for six weeks every summer I managed an entire American experience for them, all the Red Cross swimming lessons, nature camp, tennis, soccer, basketball, art camp, trips to DC and Boston and Hilton Head. Sleep overs, water parks, movies, roller skating, you name it we did it. Every museum and possible experience, baseball games, mountain climbing, lobster feasts, sailing, family reunions in Iowa, you get the picture?
I did this for nine years, through all the Harry Potter books (which my grandson read twice each summer in ENGLISH), and up into the Twilight Series for my granddaughter. Last year I took her and two friends to the French opening of the first Twilight movie (in English of course), but I was already slowing down, having trouble walking fast enough to keep up with the girls, sigh.
So I feel like I want to do that for this second set of grandchildren, ages 10, 7 and 3. I feel terrible that I can't be the same grandmother. And my son and his wife so want their kids to have the wonderful grandmother experience. My husband taught my French grandson to drive, and they built all sorts of things, pruned the trees in the neighborhood, played golf together. And he's wonderful with the kids here, too.
But I will be more and more left out of the main flow of action. I just cannot keep up. I used to toss the water balls around for hours and hours in the pool with the first set. Now I can't do that.
And honestly, when the kids 'bounce' at me, you know how kids are, I fear my feet with be hurt, or some other part of me that is sensitive. I can't be quite as carefree.
It will be fine, I realize that. But........... once long ago my younger son said, 'don't use up all your grandmother time on the older grandchildren'....he was half joking, and half serious, wanting the same experiences for his own children.
I"m just coming out of being really miserable with a UTI. I know they are so common, but with my overall
AI and the interstitial cystitis, I was just a mess. My knee that had the surgery was swelling up terribly, and I couldn't figure out why. Now I know it was the inflammatory response to the infection.
I feel much better, it took a good week on the antibiotic for me to start coming around. And I was so irritated with myself for not realizing sooner what was happening.
Anyway, I feel much better today, I went to the pool and to a meeting of a support group that is important to me in another area of my life.
thanks for all the support, words of wisdom and sharing.
Kisses
Carolina
Sweet Carolina, Trust me, I understand very well what you are experiencing. Even with the two sets of grandkids.
There are so many similarities about the two of you as I mentioned when you first began to post.
Even, went to a new local doctor here today... and, empathy... I experienced first hand today for what you are going through at Duke.
Came home and crashed in the bed. Three hours later and did not feel as if I had rested any. The whole doctor thing was a whirlwind for me!!! Too much noise, too many people touching my head, too many examining my eyes. Pressure is rising in eyes and have a deep-family history of close relatives with glaucoma...
I can only imagine though how your mind is spinning and body hurting with all you have been through in the past few months. Look at what you have already accomplished as others have already mentioned in posts. Please, JUST do what YOU can... Easier said than done!!!! Right?
Wishing you the best, Sjogie Friend...Joy (I'm over the mountain; not over the hill, nor under either one pushing daisies!!...That's good!!)
Please excuse my rambling; though, wanted you to get this Carolina, as you have been so supportive. I'm zapped... going to try to rest my bod and sleep!
Wow, Carolina! I can't do even a fraction of that with my OWN kids, never mind grandchildren in the future.
You were the super-duper woman of grandmothers. I hope your son and daughter-in-law in France realise just how lucky they are to have you, and that now you are the one in need of help and support they do what they can from so far away.
It's a real shame for your younger son, of course, having seen just how spectacular you were with the older grandkids. Sibling rivalry never ends, does it? My mother-in-law in England does tons with my brother-in-laws kids, but when she visits us here in Cyprus she puts her feet up and doesn't lift a finger. Sure, I'm jealous as heck. But there, she's competing with the OTHER grandmother to be the best! No competition here...
Stress, pressure, guilt - I wish you free of them! You MUST put yourself first, and your younger son might just have to send his kids to Summer Camp instead. His kids will have to settle for story-time on the couch and gentle games indoors. And all the love in your big heart.
Suzie
Wow! It's sounds like you have been superwoman all your life, so I can image how difficult it is for you to have to learn to slow down. I feel like a lazy schmuck compared to you and I'm a few years younger.
I took my 3 granddaughters (14, & the twins are 10) bathing suit shopping earlier. They kept trotting out in gold lame' or tiny black numbers while I was trying to corral my 4 yr old grandson and keep him from disappearing into the clothes racks. Needless to say, this supposed 1 hr little trip turned into 3! My left foot decided to go numb halfway through the expedition so they had to get me a cart to get me to the checkout counter. Then the 14 yr old decided to take charge and insisted on scanning everything herself and screwed to whole thing up for 45 minutes! Then we had to have a checker rescan all 25 items again. So when we finally got home, I promptly had nausea and IBS for 3 hrs (hence the late hour). I knew it would be a circus, but I felt bad because I had put off this shopping trip for over 2 weeks due to 3 rough weather fronts coming through and putting me down for the count. Anyway, my guilt got the better of me and I took them and Oh boy, did I pay. In retrospect, I can see several things I should have done differently to spare myself and take my condition into account. But as you say, one of the hardest things we have to learn and re-learn is taking whatever time we need for ourselves.
I'm glad you're feeling a little better. Take extra good care of yourself until your world is right again. We need you!
Hugs,
LeoLady
LeoLady,
You sound nothing but lazy to me. You just took on an amazing task which would have worn me out, and I'm 50. I'm learning to pace myself. It's not easy but necessary as I'm going through a rough time with my health right now. May was a very busy month for me, and I'm paying for it now but trying to rest when I can and hopefully feel at least somewhat better.
Sounds like you had a fiasco with the bathing suit shopping. Do try not to push yourself so hard.
Carolina,
I'm so glad you have the help of a supportive husband. Hope you're soon feeling better also.
Becky