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Very hurt. What do you say to people who don't understand fibro fatigue?

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Posted 3/23/2018 5:08 PM (GMT 0)
I am so hurt, disappointed and sad about hubby's conversation. I have other emotions that I am not even sure what is. Thank you if you got through this post, I'm sorry it's so long. Partially, I think I just needed to "talk" to people who understand.

I have been DX with fibro for years. We were married at a young age and have been together for 44 yrs. My FM did get worse over time but I've also developed different diseases that add to it. Fatigue has always been a big part of it and I went on SSDI years ago. I also have sleep apnea that a c-pap doesn't help (as far as how I feel) and a weird sleep disorder sort of like a cousin to narcolepsy.

My hubby has been supportive, goes to specialist appt. with me etc. Mostly, my appts aren't about fibro, but more about some neurological issues. He even asks my Dr. questions about me during HIS appt. He backed me when I quit working in 2005. A few years ago I tried to work again but it was only a few weeks before I had to ask for part-time then I had to quit. He seemed supportive of that but I did feel something was off.

Lately, I've noticed he seems to have a subtle attitude about the things that I don't get done which most of the time is the minimum necessary and then sometimes not even that. I couldn't handle work and a lot of work at home so I quit working. I'm not sure but I think he thinks I should do more than before but if I had had the energy to do more I would have kept my job.

I will say he really doesn't get the fatigue aspect of it. If I say I'm extra worn out/tired etc. he says he is too. He didn't sleep real well last night, it was a busy day at work....

Last night he basically said that fibro wasn't real; note when I was DX with it a lot of Dr's didn't recognize it as a true disease. Obviously he hasn't kept up with new research.

He sees me struggle everyday. He hears me struggling with my memory, stumbling because of balance etc. But, I guess he doesn't get it or how hard it is to do something and how much harder it is to deal with with the fatigue when you do. I do see the concern on his face, he asks if I'm ok (I really don't talk a lot about the pain because I try to hide it from family because they worry) because he sees things on my face, I guess.

I have found several articles that he can read. But, how do you explain to someone the difference between debilitating fibro fatigue and normal working extra hard, having a bad night fatigue? I do have the spoons as a way to explain but I would like some other ideas that I can just say.
Posted 3/23/2018 8:15 PM (GMT 0)
Lendi, I think your husband understands better than you think he does. I can’t believe he goes to doctors’ appointments with you. My husband would have never done that. You say he has backed you when you had to give up working and now he will ask if you are alright just by looking at you. It actually sounds like he a concerned about you. That’s love.

Sometimes when we get so extremely exhausted we can be sensitive and misinterpret things. It kind of goes with the territory of pain and fatigue. But, if you would feel better, let him know that you aren’t just tired but, instead, you are totally exhausted...like you just finished running a marathon but you aren’t short of breath. Tell him how frustrating it is for you because you want to do so many things but can’t. But let him know you will continue to do your very best and let him know how much you love him and the fact that he is always there for you. Let him know how blessed you feel because of him.

I think you will feel better and so will he. Just enjoy one another. The years go by fast. I lost my husband suddenly when I was fifty years old. I’d give anything to have him back because he, also, was concerned about how I felt and he would help when needed without my asking. He didn’t understand what I was going through. How could he? He never developed fibro. But he was always there for me and I knew we loved one another.

You also can have him come to this forum and read or check out Fibro 101. There is an article when you first open Fibro 101 by Dr. Daniel Clauw who has and is researching fibro. He explains what they think could be possibly causing this illness. Your husband would see that, yes, it is very real!

So try to relax. Your hubby sounds pretty special to me and it sounds like he is doing the best he can to understand what you are experiencing.

Sherrine
Posted 3/23/2018 10:38 PM (GMT 0)
I think that even when they try to understand it, they cannot..

My hubby supports me , but he still does not get ..that when i want to sleep in ..its because my sleep can be iffy at times , even with help..

At times i will kinda warn him that i am getting overwhelmed, which should mean..do not push any buttons, but still feel like he does..

One of my pet peeves has been that he was not good at helping the kids understand the issue..

He worked a high stress job , and i was able to be home once we had kids..he would at times come to an appt.. but there is just something that people who do not have fibro..do not get

My sisters never even understood, the fact..that some days i could work hard and cope , and others not at all..one of my sisters has fibro, but its a different form of the disease..even she can be very not understanding..they thought if i could push through some days , that meant i could any day i chose..which is not the case.

He should definitely not say its not real..one of my physical therapist, explains it as..no inflammation that shows in the blood work, but rather it neuro inflammation, that can wax and wane.. when they work on me i cannot process the toxins like an average patient can..so they have to be more gentle with their patients who have fibro..

This time of year, with lots of weather changes, i flare and am more fatigued..the flares also impact my sleep.

Here is a good place to express your feeling about it..cause most of us can surely understand the struggle.

Lj
Posted 3/23/2018 11:46 PM (GMT 0)
I'm wondering if he's feeling stressed and anxious about things? It seems he was supportive in the past and just recently seems less so. It could be less about you and more about the way he's feeling. A good conversation may clear the air. Like Sherrine said, reminding him that you love and appreciate all he does for you and also making clear how difficult things are for you at the moment would be good. They aren't in our bodies, so if we don't look like we're hurting, they can't always tell (and we tend to be great at masking it). I would tell him that saying fibro doesn't exist was the most hurtful thing he could have said to you and refer him to the mayo clinic site where it gives a clear medical definition of the disease. I think clearing the air in a gentle thoughtful way is the best thing, as it sounds like he has been a great partner in this and you just need to reconnect. Relationships always have bumps and times where you feel distant. That can be especially hard when you are sick and not feeling strong.
Posted 3/24/2018 2:42 AM (GMT 0)
Well said scoobymummy..
Posted 3/24/2018 11:32 AM (GMT 0)
Hi Lendi,

I understand what you're going through. I just wanted to share with you that my husband didn't quite get what was going on with me until we began seeing a psychologist together. I would suggest that you locate some kind of therapist who is knowledgeable about your health conditions. She is also helping me cope with all of these health conditions I'm experiencing.

When it comes to the feeling tired part, I explain to my husband that it's not a extreme fatigue sort of feeling that I'm experiencing that could be fixed with a nap because I don't feel tired in that way, but more like a feeling like my body is very low on energy--very weak. And the degree of that goes along with how well I slept the night before.

I think what helps my husband to be supportive is he sees how hard I try to be my best (without being a perfectionist about it) with good nutrition, exercise and stretches, getting massages, and my avoidance of foods and drinks (other than water) that affect my ability to sleep. There's a whole gamut of things we can do to help ourselves.

Good luck to you.

Post Edited (almost medfree) : 3/24/2018 10:57:06 AM (GMT-6)

Posted 3/24/2018 2:42 PM (GMT 0)
I describe my fatigue as feeling like I've taken Dristan or a sleeping pill the night before and feeling really groggy the next day. For me the fatigue includes a really heavy brain fog all the time, prob because of the chronic migraine.
Posted 3/24/2018 3:14 PM (GMT 0)
Thank you all so very much!!!! I am so appreciative of all your kind thoughts and being able to talk here. Also, a lot of great ideas! I will try them. Especially, making sure he understands how appreciative I truly am.
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