Realising the extent you have to pull back (and letting people down)

[Rosanna]

Hi everyone

I don't have a diagnosis of CFS, and I'm not sure I have it. I have hypothyroidism and my temperature is always around 35 degrees celcius. I've been told it's properly treated but with a temperature like that I'm not sure. A doctor did say that perhaps what I have is CFS, because my thyroid is adequately treated, but I have my doubts.

Anyway, I'm just realising how little I'm doing compared to everyone else. I work part time, but I'm always avoiding any trips to do with work. I have one coming up, only an hour's drive away, only 2 days, but I'm avoiding committing to it because I find the whole thing exhausting. People will meet for drinks the day before and after, there's always more to do than the course itself. I'm not shy, I'm just so tired I don't have the energy to talk to people. As well as that I have put on weight because my system is so sluggish and I don't feel I'd be presenting myself in anyway how I would come across if I was healthy.

I feel like going to the doctor and crying, but they haven't got time to listen or help. They often say it will do me good to go on a trip. I agree with that in principle, but in reality it just zaps me even more, then I crash and spend another 8 months recovering.

How do people deal with letting others down and pruning back your life so much that even your own expectations are shattered? I have to make a decision on another upcoming trip. Someone is waiting for my answer and I don't want to let them down.

 

[belize44]

I would say that you must consider your own health before the feelings of anyone else. I went through what you are going through, in the early stages of my illness, and the result was that I lost nearly every friend I had because they figured that since I looked OK that I was just brushing them off and not wanting to be with them, when they invited me to social things. Work related travel really wiped me out, and if I attended some sort of mandatory training I could barely remember what the course consisted of because I was so wiped out. It's a shame that an acceptable social lie is to say that you are feeling a bit under the weather, and then when one is really sick to be viewed as doing the social lie thing.

Don't think of it as letting this other person down, but looking after your own health responsibly. You may think that you are presenting a brave front, or being a good sport, but only you will bear the consequences! It's a tough call, I know. But after being ill for over 20 years, my life has reformed around this illness, whether I wished it to be this way or not, and like it or no, I have had to give up a great deal of my social life, and can no longer work as well. Take care!

 

[Effi]

hi @Rosanna

sorry to hear what you're going through. It's such a thin line to walk between taking care of yourself and meeting social expectations. One thing I have learned with this illness, is that general rules of what is 'good for you' or 'not good for you' no longer apply to me. My rule now is: whatever is best for me/my health is what I'll do. If for you that is not going on the trip, then I wouldn't go. If you feel awkward about sharing your health issues with colleagues (which I'd totally understand), I'd just lie and say you already made other plans, or make up a vague family emergency you 'can not get out of'. (Nobody will find out, cause they're all away on that trip together! )

For me personally it took me a while to adjust to this stuff. It's a learning curve. I wish you good luck, and keep us posted.

 

[Snowdrop]

Hi @Rosanna
Welcome.
I don't think there are any easy answers here. You have to pull back--people will be disappointed. We as the ill are left to deal.
It is not fair but it is what it is.
That said, I often suggest that people find a person who they trust and can count on and start educating them regarding this disease.
That way you have someone in your corner. Someone who you can count on, who believes you and can maybe advocate for you when needed.
There is lots of info here that you can use to do that.

They often say it will do me good to go on a trip.

Normally that would be a helpful suggestion for many things. But ME is not like other diseases in that regard and ignorance reigns.

 

[ahmo]

@Rosanna Welcome to pr. Indeed, a life-long learning curve.
MDs often use inaccurate testing/methods to determine your need for thyroid. I was undermedicated for decades, my labs all looked fine. Switching from thyroxine to other forms marked the first step forward in my healing. My temp is generally a bit low, you'll see in some of the references I'm linking that this does not always mean you need more, but it's not nothing. Some other views on thyroid:

https://www.youtube.com/user/TheRLCLabs Several Hypothyroid vids, incl Dragone

http://www.stopthethyroidmadness.com/

http://thyroidbook.com/blog/iodine-and-hashimotos/

http://www.amymyersmd.com/2015/08/thyroid-health-part-vi-the-iodine-thyroid-connection/

Here’s an interesting and unique thyroid protocol.http://recoveringwitht3.com/blog/what-circadian-t3-method

https://advancingthyroidcare.wordpress.com/2010/03/21/three-phases-of-treating-hashimotos/

5 Lies About Your Thyroid Disease That You’re Likely to Hear

http://thyroid.about.com/od/thyroidbasicsthyroid101/a/5lies.htm

Izabella Wentz, Pharmacologist http://www.thyroidpharmacist.com/