[enough3]

#1071575

I believe it will end:) That’s what I tell myself everyday. The extreme highs and lows of GD still baffles me. One day I will feel so good, that I will forget the I even have this terrible disease..Then other days, I feel so tired, scared, weak, and can feel my thyroid throbbing so to speak. I totally understand where you are at.

We just have to have faith in God that He will help us feel better (as long as we do the footwork). Hang in there…Wish I could be more encouraging, but I’m in the same place you are.

[hyperm]

#1071576

Hi Emily,

I can sympathise completely…. I have asked the same question of many occassion over the last 4 years. 3 years ago I used to take "turns" where I could be lying sleeping and wake up taking one. It was as though my whole body started to shake and as though my bladder was just going to give -I would try to get to the toilet and would fall in the hall…..they became so frequent that my hubby used to check I was ok and run downstairs to get 2 hot water bottles and a cup of tea with sugar and a warm blanket and would then have to sit with me until it passed. It was basically chronic fatigue my GP said. Adrenal burn out is a horrible thing so try and be easy on yourself. ” title=”Wink” />

It will get better and yet as you say there will be bad days. Everyone has bad days and I guess people with our condition just have them more so. I can appreciate when people try to be really positive and thats a great support but sometimes I find it doesn’t help and you just want to hear that other people have or are going through the same and are still here to tell the tale.

Just now I hardly get over the door except to drop my little boy at nursery and perhaps a drive in the car with my mum… I have had to learn to accept this just now- its not easy some days are better than others. The other day I was putting away washing and it was such an effort I had to sit down on the bed and I got really frustrated like you are just now and thought I am fed up with everything being an uphill struggle.

We will get through it with the help of God and each other.

A priest gave a lovely homily yesterday: He had an email and its title was "I am where God wants me" it was about 3 men who on their way to work got held up and were late; one dropping his daughter off at school, one who stopped to buy new shoes and got held up in a queue and another (i think) in traffic. Anyway, it turned out that if they had been on time for work they would have been in the world trade centre on the day of 9/11….
It really helped me as I thought well I wanted to be at home with my kids and all though I am not a very energetic mum at the moment I am there for them and not having to rush out to work to make ends meat like some poor souls – it made me thankful.

Hang in there Emily and let us carry you through the rough days and celebrate with you on the good ones!

Lots of love and cyber get well vibes((((((((((()))))))))) ” title=”Smile” />

M x

[ely2009]

#1019423

Will I ever feel normal? I don’t even remember what that’s like.

I hate the rollar coaster ride. SOmetimes I feel "OK" and like "I can do this -one more day closer to feeling better." Other times I just can’t handle it anymore. The symptoms aren’t horrible anymore, but constant and annoying. I still have trembling and dizziness that doesn’t seem to go away and I’m terribly weak and tired. Been on Methimazole 6 weeks today. I just want to wake up in the mornng and not be wishing for bedtime to be here. I try REALLY hard to stay positive and I’ve started walking again (doc said I could). I’ve also been doing less "stuff" and more for me.

I guess I’m just feeling sorry for myself today.

Emily

[ely2009]

#1071577

Thanks guys – just what I need to hear. I’m SOOOOOOO tired of being CONSUMED by this disease and all the worry that goes with it. I’m sitting here at the computer sobbing and I don’t really know why except that I’m just overwhelmed and OH SO TIRED! Sorry to be a crybaby – that’s usually not me AT ALL, but then again I’ve never dealt with anything quite like this.

I’m so glad you are both prayerful people as well. I ask God and the Blessed Mother for strength and patience and healing everyday for me and all of you.

Thanks for your support.

[hyperm]

#1071578

You are allowed a bad day – you sound so similar to myself….we don’t allow ourselves to be human most of the time.

Hang in there – tears can be a good thing too you know – it means your not bottling it all up!

I am going over to night prayers Emily and tonight I will be mentioning your name in my prayers that you start to feel better soon.
m xxx

[Jake_George]

#1071579

Boy do I ever remember those feeling bad days. You have to remember you did not get sick overnight and feeling better does not happen overnight as well. When we are diagnosed with Graves’ disease we have usually been feeling worse for some time.

As our bodies become used to the treatments and replacement or blocking hormones, our systems take time to get back to feeling normal. I remember I felt bad for a few years after RAI and replacement hormones.

I missed so much work I lost money due to taking time off because I used up all my sick and annual leave. But little by little I felt better. I cannot pick a date that I felt normal. It was a gradual thing. Just one day I thought, “It didn’t suck to be me,” and I also realized that I felt better for some time, just really didn’t think about it.

My memory was shot, temper was bad, decision making was flawed etc..

But over time things got back to normal. Work became easier, doing things became easier and memory was better (but to me it never returned to pre-graves’ levels) and I could do more.
Now I work full time, became a published author of 4 books. I volunteer here as I have for the past 11 years or so. I took a part time editing job with a publisher. I eventually was promoted to senior editor there and made partner in the publishing house last year. I dance men’s traditional at Pow Wows (my avatar is a photo of me at a book signing at Barnes and Noble) and my energy is back.

Give it time. Soon you will realize that you have Graves’ disease and it will not run your life. Just do us one thing. When you feel better stick around and tell others that it will get better with time.

I have Graves’ and life is good.

[hyperm]

#1071580

Jake George my hubby is an editor if you don’t mind me asking what are your books that you wrote?

[RhondaG4]

#1071581

Boy that is the question of the day for me today. Had RAI today. Scared and hopeful all in the same day!!!! My 7 year old had track day at school today…so I attended this morning, even tho I really didn’t feel like it. My legs were weak, and I had alot of tears from the stupid wind here in Wyoming, and my mind elsewhere…already at the hospital to take my RAI. I’m sitting here tonight wondering how I’ll feel tomarrow…and in a month from now when I go to my son’s USMC Graduation in California?How will I feel tomarrow when once again the tears come from not being able to hold my kids close until Friday when this RAI gets out of my system? I also have an almost 2 year old and a 21 year old, and a hubby who took off of work to take care of the kids. And on one hand I’m grateful for the tears, cause at least my eyes aren’t dry and itchy.

I don’t know if things will ever get back to "normal". I’ve heard it said that normal is a setting on our dryers, something I’d like to be able to use without being in so much pain because of it. What I do know is that with the Grace of God I will get thru one more night, and then one more day. And sometimes it is one more hour…just one more hour.

Hang in there, that is all we can do. Lots of hugs, Rhonda

[ely2009]

#1071582

Rhonda – hope you are feeling well. Let us know how you are progressing.

[Kimberly]

#1071583

ely2009 wrote: Been on Methimazole 6 weeks today. I just want to wake up in the mornng and not be wishing for bedtime to be here. Emily

Hi Emily – Are you about due to have your levels checked? Some people respond FAST to ATDs, so it’s possible that you are ready to decrease your dose. If you continue to feel wiped out and you aren’t due for labs for a while, it’s worth it to call your endo’s office and *demand* a new set of labs.

Everyone is different, but for reference, I felt exhausted for about the first 10 weeks while my levels were falling. I believe I would have felt better alot sooner if my endo had been more on top of my dosing…at the time, they were relying solely on TSH, which is a lagging indicator. I’ve since "trained them up" a bit, and they now look at my Free T3 and T4, which are better reference points for dosing adjustments. ” title=”Wink” />

Best Wishes,
Kimberly

[ely2009]

#1071584

I actually had blood drawn today – should hear tomorrow. Hopefully that will give some clue as to why this has been a bad week.

I keep waiting for the day when I can use Jake George’s line "it didn’t suck being me today." ” title=”Very Happy” />

[nmasay]

#1071585

Emily,
I feel the exact same way. I was switched from PTU to Methimazole and I’m still not normalized after 6 weeks. For me, PTU worked much faster, but I couldn’t stand the taste. Someone told me that it took them 4 months to normalize in the labs. Unfortunately it takes patience, of which I have none. I hope you get some relief soon.

[CMoore416]

#1071586

Hi –

First off Im so sorry you are feeling this way. Hang in there – it will get better. I have had GD for many years now and Im currently stable on a low dose of ATD’s. I have had "normal" levels now for almsot 2 years. Am I normal again?? I would say Im a new normal. Things we experience in life change us. Every day were changing. Having an illness like we have – changes you. But you will see a new normal again. For me – I have up and down days. Sometimes Im sad because I want to be the OLD me. But she is gone. I no longer have major panic attacks, major phobias, and many symptoms. But because I did for so long, I became super sensitive to my body’s feelings. I feel my heart do weird things sometimes and the anxiety became a normal, habitual thing for me. I worry about my health A LOT! I have some minor panic attacks but I know how to handle them. I usually go through my days with no issues but its never gone from my mind. Sometimes I cry about it, but MOST of the time, thigns are good. You will feel good again. You maybe will still have some ups and downs, but the major stuff will go away as your levels regulate. It takes a good year I think. Plus you need to constantly monitor your levels to get the right dose. As your levels get into normal, you will need less meds. Good luck. Hang in there, cry and PRAY! The Lord will give you the peace you need inside and will get you to the other side. For me, thats ALL that got me through and here today! Ive learned something through all this too. Peace and happinesss are what I want most in my life. The rest of the stuff is just extra!! Good luck!!!

Christina

[ely2009]

#1071587

Thanks for everyone’s support.

Christina, you describe it well. I really try to stay positive and focused on the good and important things in my life – mainly my family. It’s not even the way I feel physically that is so hard, it’s that the way I feel keeps me from being involved in my life the way I want. SOme days I feel like I just watch it go by. My son asked me what I want for Mother’s DAy – I said a new thyroid.
” title=”Smile” />

Trying to hang in there.

Emily

[hyperm]

#1071588

Hi Emily,

As said before you and I are very alike. I know many of my friends who are very fit and healthy and they are not involved nor intend to have the same involvement for their families as I do. Therefore, they can’t see why I get so frightened or frustrated about my lack energy to do what I want to do.. I hate the fact that when my eldest (only ready to turn 4 – still a baby really) looks me in the eyes and ask me to do something with him – I just think oh no don’t ask me to do anything I really just want to sit. I was so involved with him when he was younger and at baby classes 5 times a week and spent so much time in the garden with teaching him to plant tomatoes etc and now if you asked me to do any of that I would just crumble in a heap.

Every night that I go to bed I think "I’ll be a better mum tomorrow" my hubby gets so frustrated at me as he will say – its not you being a bad mum its about you being a sick mum. I have had to try and lighten up on myself and think yeah I am a good mum but it doesn’t take away the guilt that I reply to my son’s requests with "mummy is tired". Before this post partum flare up – around 2 years ago at least I could still take him swimming and do somethings with him – now I can barely breath with exhaustion some days and the anxiety and panic attacks which are hitting me at the moment are preventing me from going out.

You know what though- I have a very wise mum who had a terrible menopause and breakdown over nearly a 10 year period -she want from being supermum to being unable to go for the groceries or out and about – I am the youngest of a big family and she said that she always felt guilty because she couldn’t go out and about with me the same way she did my siblings. I remember at 10 years old my mum stopping outside a shop in the car as ran in to pick my own party dress etc… However, for all I remember that what I remember most was my mum always cuddling me and telling me how mush she loved me. I cling on to that thought that as long as the boys feel secure are kept clean etc then one day (please God) I will get over this and become more actively involved.

At the moment its good days and bad – the good days mean I am not sitting at the dining table with my head in my hands and using all my energy to create a pretend "everything is alright" atmosphere for my kids.

My eldest brought down a floor jigsaw this morning and I nearly collapsed with the anxiety as my mind could just not figure out which part went with what. I had to stay calm and float myself through it and think I will get through this and feel well again one day.

Hang in there Emily – even if like me its by a thread one day – just remember I am where God wants me to be.

M xxxx

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