So tired, so frustrated, so sad...having a pity party tonight. I thought I was finally starting to feel a little better then about 3 weeks ago, started sliding downhill again. I'm pretty sure I know why...our biz got busier (which is good and needed) and I've had to put in a lot of hours, plus trying to keep up with my jewelry biz (which I LOVE) and trying to keep up a social life with our family and friends. BL (before lupus), every day doing these types of things was a wonderful day in the life of US...now, well, now is now. I'm hurting all over, I'm not sleeping, which contributes to the pain, I have no energy (not even for my jewelry, which NEVER happens), and I have no desire to spend time with anyone except my hubby. I see quotes like "every excuse is a choice" and I feel like I am making a choice to be a louse...I feel like I'm not trying hard enough to get back to "normal"...I'm afraid to do things I would never have been afraid to do because I'm worried it will set off yet another flare (which, I think I've had constantly since this all started...its just been "degrees" of flares)...I'm angry! And I'm scared. I'm scared my hubby is going to get tired of all of this (which, he has been so incredible through it all), I'm scared my family is going to get tired of my being down and not able to attend all of the functions I used to, I'm scared my friends are going to stop inviting me to join them because I'm either struggling or I bail.
I finally found a new PCP that I like, but hadn't had a physical in a long time and learned I now have high cholesterol, high triglycerides and my thyroid is low. I have to go back next month for thyroid (which may explain my weight gain...at least that would make some sense) and test me again in a year for my cholesterol & triglycerides. I'm a little nervous waiting a year because we have a family history...my brother also passed away at the age of 32 from a heart attack...he had 100% blockage. I'll probably follow up sooner on that.
Am in the hunt for a new rheumy...mine retired. I have a couple of referrals, just need some extra time to check them out. I feel my meds are ok right now, so at least I'm confident with that. I'm not on too terribly many and don't want any more, that's for sure!
So, enough whining for the night...just needed to go "blah" and this is one place I know I can do that. Thanks to everyone for listening and hopefully I'll wake up to a brand new day tomorrow that will be filled with joy, relaxation and pain free! (I have to at least wish for that!)
Hi and welcome, we all feel the same way tired of feeling sick, just try to live one day at a time, my family has a party almost every weekend before I got sick use to visit them almost every weekend but now everything has changed since I try to rest and do things at home with my 4 kids and husband and I participate in family activities when I feel good if not I know they will understand just try to explain to them your symtoms some days are worst than others and if they love you they will understand Good Luck.
hi, it sounds like you are burning yourself up to quick, your body is like a battery, if you only charge it a little it looks good but doesn't last long when you use it but if you give it a good charge and rest in between using it it will last a lot longer. the trouble is we think "yay i feel good" and we want to take on the world but when you are ill it doesn't work like that, little and often as the old saying goes :)
You are not alone for sure.....I too am scared, i'm only 53 and I feel like 93. if your thyroid is low and if your PCP starts you on medication, which I hope that is it, cause if you need thyroid medicine, within a week you could feel like a million bucks, hypothyroidism causes extreme fatigue, joint pain, depression, shortness of breath and you mentioned weight gain. I've had hypothyroidism for 33 years, the dosage had to be adjusted a few times over the years. God luck, Mo
Sorry you're having such a rough time. I agree with Mo. If your thyroid is low, and you go on medication, it'll help a ton with your fatigue and some of the joint pain. If your triglycerides and cholesterol are high, your PCP should put you on medication for that to try and prevent any incidents from happen. Garlic is wonderful for lowering cholesterol (and blood pressure). There are garlic supplements you can buy over the counter. I would definitely start taking a garlic supplement each day. Mediterranean diet is also very good for heart health--lots of healthy omega-3s. If you're not a fish eater, they have omega-3 supplements too. But some other foods have omega-3 in it, just not in the high quantity that fish does. Broccoli for instance has something in it that the body can convert to omega-3. Take it easy until you get more answers from your PCP, especially with the thyroid stuff. Praying you have a better day today!
I ticked a like on your discussion because not of how your feeling down because of coming on venting and getting it off your chest to members who totally understand...plus members who have answered have given excellent advice.
Pacing daily life wheather you like it or not is the most and i mean the most important issue to we all, no matter what extent we're suffering and it seems your looking at life in a negative way, try your hardest not to because this can cause depression and can lead to more symptoms besides doubling what you have already.
Don't look on the down side regarding your hubby if he's ok with you and life then don't make a mountain out of a MOLE HILL....do what you did come at we with your problems, yes it maybe over the net but we're totally with you.
Regarding your underactive thyroid this can cause weight gain as i have it and i'm not surprised your doctor as'nt but you on thyroxine, as soon as my GP found it i was soon on the medication.
Don't look on the downside with your family history because i have a bad one behind me with both parents plus the symptoms following through generations...your on a DOWNER at the moment and thinking like this won't help you one bit. PLEASE look at life in a better and more positive way, i've been ill for years and there's not a year go by where something new is'nt added to the list but i keep going as i have a lovely hubby who loves me and now for a while great friendship with LWL members.
Life is worth living, just look at the positive issues in your life and take the strength from those.
I hope you're feeling better, I know how you feel when think maybe you're not doing all you can to get better. I feel that way sometimes, and I get impatient with my healing process. Friday night, I pushed and decided to walk up a full flight of stairs at church, and I'm feeling it today. Its not a 9 or a 10 on the pain scale, but its a constant reminder that I did too much. So today I'm baking off, and tomorrow we have a free week at the YMCA and I'm looking forward to the pool : )
Every day is a new day!I know how u feel(hubby)My wife has stood by me through thick and thin and I also had the feeling that she would rather be with someone else than to sit up endless nights with my “issues”!Same as my wife,if she wanted to leave,she would have 10 years ago,ur hubby is there for u and u need to give him credit for that!I also feel like a burden fo my family,once I flare up I feel like I’m pulling everyone in around me!Just remember,u did not ask for lupus,it chose u,we are all stronger than lupus and we are survivors!Stay strong and don’t ever give up,please!
Thank you everyone for your wonderful words of wisdom and caring. I was on a downer last night, but really just needed to vent and nothing more. Most days I am very strong and positive, but I finally feel like I've found a place that I can "let it all out" when I really need to, so that's what I did! I'm celebrating my birthday today and have enjoyed wonderful conversations with all of my family and friends. Spent some beloved time in my jewelry studio and will relax with my hubby tonight. And, the coolest thing ever...my Grandma passed away on Dec 31st, but she visited me in my dreams early this morning and it was so wonderful to hear her voice. Started my day off beautifully!!!
Hope everyone here is having a wonderful day, and thanks again for listening. It always helps to "purge"!
Every day is a new day!I know how u feel(hubby)My wife has stood by me through thick and thin and I also had the feeling that she would rather be with someone else than to sit up endless nights with my "issues"!Same as my wife,if she wanted to leave,she would have 10 years ago,ur hubby is there for u and u need to give him credit for that!I also feel like a burden fo my family,once I flare up I feel like I'm pulling everyone in around me!Just remember,u did not ask for lupus,it chose u,we are all stronger than lupus and we are survivors!Stay strong and don't ever give up,please!
I am so pleased your day started off night plus you've also been more brighter in yourself and so nice to hear your birthday went lovely....PLEAZZZZZ keep this good feeling of determination up.
Love Terri xxx
Island Girl said:
Thank you everyone for your wonderful words of wisdom and caring. I was on a downer last night, but really just needed to vent and nothing more. Most days I am very strong and positive, but I finally feel like I've found a place that I can "let it all out" when I really need to, so that's what I did! I'm celebrating my birthday today and have enjoyed wonderful conversations with all of my family and friends. Spent some beloved time in my jewelry studio and will relax with my hubby tonight. And, the coolest thing ever...my Grandma passed away on Dec 31st, but she visited me in my dreams early this morning and it was so wonderful to hear her voice. Started my day off beautifully!!!
Hope everyone here is having a wonderful day, and thanks again for listening. It always helps to "purge"!
I understand every word you wrote...well. I hope you can see improvement with your thyroid soon. The spoon theory really helps remind me about perspective with this. It's frustrating at times and downright overwhelming. I understand the guilt that comes with comparing what you could do 'pre-Lupus' and now. I think that's normal. But think about you most importantly. It's ok to not feel well. It's not making excuses, it's taking care of yourself. Rest when you need to. If need be, do things in small increments. When you feel bad physically, one tends to feel down. That's normal. The most important thing is you take care of you. I do pray you have relief soon and as for venting...this is the best place in the world for that.
I am so sorry you are feeling so sad. We all go through this off and on. I think what helped me the most was to realize that I will never be my old normal self again. That I needed to lower my expectations of myself and to totally forget what society deems as normal. It is amazing what we do everyday no matter how much or how little we do. Surviving this disease is huge! Just take a step back and lower your expectations of “normal”. I am not saying yo give up or not shoot for your goals. Just be more realistic. I did and I am so much happier now. It is a tough adjustment but you will find that you don’t dwell on what you couldn’t do but you will celebrate what you could do!
Terri :) xxx