Chronic Fatigue Syndrome And the Stamp Of Illness On the Holiday Season

Chris,

If you have time, and want to read any more articles on chronics and Christmas, you could use the empowher search bar at the top of the page and do searches on "chronic fatigue syndrome, holiday" and "chronic fatigue syndrome, Christmas" and you should find a few more I've written over the last couple of years.

Good luck, and I hope you have a wonderful, restful and enriching Christmas with your chronic.

Chris,

Most of the people who write to me are sick, and very few are people who are looking out for their sick one. I'm especially pleased to have heard from you. It's good to know that there are people out there who are actively seeking to take care of their chronically ill loved ones. So many who write to me are alone, or feel alone.

I have, now, the advantage of having recovered to a great degree. I'm not free of symptoms but they are far less than they were and I have a much more normal life than I had even 2 - 3 years ago.

I have been through extended periods of anger, depression ... done my brooding and stewing ... lived in terror and dread of the present and the future ... longing for a past that was gone forever ... being furious with all the people who walked away from me, and with family members who acted like nothing was going on ... 

I tried back then to have a decent attitude about things because it made things easier to live with but it was a difficult thing to do when so much of life was so ... below par, at best ... and miserable at worst, with no foreseeable improvement ahead.

My life has improved because my health has improved, but for those who are still very ill, it's going to be harder to maintain a good mental perspective. It'll come and go. And alot of the time it will be more gone than coming.

You obviously care for your chronic very much. It's tough for you too. Hard to know what is the right thing, how to best help them ... what things make their life harder?

I can tell you this. Healthy people are going to make missteps. They have to do some guesswork, and they're not always going to get it right. But don't worry about that. The fact that you care and are trying to help goes a long way with a chronic, believe me.

My family doesn't always get it right but I've always known that in a world that mostly was indifferent to what I was going through, that would be quite willing to let me drown in silence ... my family cared enough to stay with me and protect me as best they could.

That is the greatest gift they could give me and it often was the only rope I clung to in the dark. I think your chronic probably knows this about you, and is thankful for you.

It was more pleasant because they didn't make me feel guilty. They didn't ask me to do things I couldn't do. They didn't belittle me. They didn't question that I was really sick.

Was it great? No. But looking for something positive in a bad situation is one way of not plunging over the abyss. 

I didn't feel good having to go isolate myself instead of spending more time with them. I didn't like having to go to bed and regenerate. But they had made me feel loved, and valuable, and that made it easier to do what I needed to do.

I had accepted at that time that I only had a couple of good hours a day, that the rest of my time had to spent resting whether I liked it or not. It was an investment, one that I hoped would pay off one day. I didn't know if it would but that hope was all I had.

So those windows with my family were something I tried to make the most of -- in a relaxed, non-exertional way of course. ;) I would sit with them, usually not saying much, and listen when I could process the words, and just let the sound run over me when I couldn't process. 

I would look at them, and see the smiles, the encouragement ... mostly I saw them interacting with each other which I also enjoyed -- rather like being there in a home movie while watching one. They didn't interact alot with me because they knew it wore me out and would send me to bed faster, so ... they were gentle.

Families can accept that the limitations are real. Each chronic will have their own unique set of symptoms and triggers. Families can get familiar with this and do their best not to trigger them. 

For instance, don't set your chronic up for sensory overload -- don't have tv or music in the background. Try to keep the noise to a happy but dull roar. Take turns talking, especially to your chronic, it helps the brain immeasurably.

Don't have blinking lights on the tree. Any decorating should have your chronic in mind. Too much visual stuff can send them to bed.

Downplay the commercial aspect, who bought what, etc. Many chronics are broke. Let the love be the main theme.

Families can offer to help the chronic dress, give them a ride, provide a place to rest if away from home. Offer foods they can eat, make sure it's close at hand in case they're hypoglycemic and have to eat often.

Ask your chronic questions. If they're really sick you won't get much of an answer, but if they're able to talk, they can tell you what things matter most to them. 

Ask them and listen to what they tell you, and do it.

That is a great Christmas present.

Chris, I hope some of this might help.

"Christmas, from the little I remember, was a pleasant affair because my family makes it so. I spent an hour or so in the afternoon, and an hour or so after dinner with them.

Then I retreated to bed with a book while they played cards and chatted and laughed at the other end of the hall. At the other end of the universe. "

Why do you perceive it to be pleasant when you are away from your family? and you know you don't have the energy to be involved with them, even as you desperately want to?

This is obviously benefical to you, but what advice, tips, would you give to other people with ME/CFS to perceive it the same way?
Or indeed to families of these people to make Christmas better/more inclusive for them?

Thanks, Chris

Laura,

Good question.

I guess I'd have to say, there's a difference between recovery and recovered. I'm not recovered. I still can fall off the end of the world when I do too much, or eat too much of the wrong thing.

We had new parts put on our furnace the other day and for the first day I had a head fog and some neurological symptoms that haven't appeared in some time. Symptoms are gone now, but it was a reminder.

I am getting over a flare-up of tendinitis that I think is connected to CFS ... I'm recovering from this flareup. Expecting it to eventually be gone. Will I go through it again? I don't know. And I guess I look at the whole recovery from CFS in somewhat the same light.

I don't know if I'll have another major crash again. It could happen. Maybe even one that takes me down for good. But, the future is the future. No telling what's up there.

When I talk about my recovery, it's an ongoing thing. It's been continuing -- with some relapses -- for 3 yrs, almost 4 yrs now. My expectation is that it will continue to happen. Could I be wrong? Yep. But like I said, I don't know what the future holds, I can only go by how things seem now, and as I look back on the past.

I might never know if I am "recovered". I might be living completely well for a period of time, and it might come to an end with an almighty crash. But for the present, I look at it as being in recovery, because I also know that it's quite possible that eventually this may be all behind me for good.

That's about the best I can do by way of clarifying. Hope what I'm trying to say is coming across.

Thanks for asking the question.

just to clarify, i've spent over a year feeling almost well, only to crash again. for example, dr. goldstein prescribed isoxsuprine for me, a vassodialator, and i had a complete remission of cfs for well over a year when i returned from my week with him in california. restarted my life, got a major volunteer position, then slowly but surely, the pills quit working and i crashed. but i've had 24-7 pain for 14 yrs... that never stops. thanks. xoxoxo

isn't it more like recovery and then sick, recovery and then sick, even with various things that appear to make us better for a while? i read your blog and wasn't sure what you meant by recovery. thanks. would love to hear from you. ~laura xoxoxoxox