I think one of the hardest things that I’ve ever had to do was to say goodbye to the life that I loved. I was never really an extrovert, but I really enjoyed being with people. There are some days now when I feel like I went from being an introvert to a hermit, and I hate it.
I used to love cooking, and I can’t even tell you the last time I cooked a meal. Fibromyalgia (FM) prevents me from standing too long, and the fatigue overwhelms me when I try to help cook. It makes me so sad.
I always enjoyed cleaning my house and making sure it was comfortable for my family and times when we had company. I loved it when my kids had their friends over. It was just joyful to me.
But those days are gone for me; my pain has increased and my energy has dwindled, and I don’t anticipate it coming back. So, to my old life and the person I used to be, I needed to say “goodbye.” It’s not healthy to dwell on what we no longer can do, and who we no longer can be.
So, to my new life and the new person I’m becoming day by day, I say “hello.” Hello to more pain and the ability to be more compassionate. Hello to more fatigue, and the time to be there when someone needs me. Hello to the freedom of time I have to devote to writing, and encouraging others who also are struggling with fibromyalgia.
Ask my husband, and he’ll tell you that I absolutely love anything new and different. I like the latest technology, and seem always to be upgrading. I love moving the furniture around, and trying to see how I can make our space more comfortable and interesting. But THIS new and different? Not liking it at all. Due to incredibly low energy I need to enlist my husband’s help when I need to clean or declutter.
When we moved two years ago, so much of the packing and unpacking was delegated to my husband and family; FM rendered me unable to help much. Even packing one box required at least two hours of lying down. When we moved into our new home 45 minutes away, I made sure the bed was unloaded and set up first.
I miss seeing my friends and family. I understand they have busy lives and their own concerns, and don’t necessarily have the time to be thinking about me and how I’m doing. It really doesn’t take much to pick up the phone and give someone a call or send someone a text or card and just say, “Hey I was thinking about you. How are you today?” But in our busy world, it seems people don’t take the time to do that as often as we’d like. It’s probably because they just don’t think of it. But those of us with FM seem to have nothing but time.
So, it’s very much a reluctant, tearful goodbye to my old life, and a reluctant, tearful hello to my new life. Although I really miss the old me before FM, I’m learning to embrace and enjoy getting to know the new me.
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Robin, your blog/writings are by far the best that come through Fibromyalgia News Today in my opinion. Please keep them coming, I know that I can relate to them and it seems that many others do also. I am currently finding it difficult to say that goodbye. I know that I probably need to, but just unwilling to do it quite yet.
There was one thing that struck me odd and I could not relate to – stating that those of us with FM have nothing but time. I find that totally untrue, guess it depends on your definition of time. My FM and chronic fatigue limit my time for a number of reasons. First off is all the extra time now that I need to sleep, nap, or just lay down with total rest. Then there is all the additional time taken up with doctors appointments, lab appointments, and running to the pharmacy to get my prescriptions (unfortunately they do not all run on the same refill schedule). Also there is the additional time it takes me to do everything: getting ready in the morning, household chores such as laundry or dishes or cleaning, and any other task that I try but forget things about or get sidetracked elsewhere. Finally, I also have time issues because I am in the midst of disability appeals for Social Security and longterm disabilty from my former employer’s insurance company – 2 sets of lawyers because each specializes in different areas, one Social Security and the other private insurance.
Whew, just writing all that and reading it over wore me out. So as you can see, time is something I have very little of. And that is without even trying to define “quality” time.
Anyway, thought I would share. Thanks for your thoughts and I hope that you do have the time to write about more issues that effect you and others with FM.
Cheers!
Don, you made my day with your kind comments. I guess when I said we have nothing but time, I was thinking about my own situation where I spend most of my day in bed and I have nothing but time. I also have doctors appointments and other kinds of appointments and laundry and other things but all of those things just don’t take up very much of my time. You however sound like a very busy man. Kudos to you for all of the things that you’re able to do. You should really be very proud of yourself. ?
I try the best I can, when I can. The bedridden time is what gets me behind in the other things that i have to do, which just gets my mind fluttering on the need to do them things once I can. So of course then on the good days I try to do all the things that have gotten backed up and I overdo it. Of course then I’m back to being bedridden and things falling behind. It is a vicious cycle and I’m fully aware of it yet have still not been able to stop it. Hopefully one day I can catch up and put an end to it. Oh well, enough about me. Keep up the good work please.
Thanks!
Don, I try to do things at home in 10 minute increments and that keeps me from overdoing it
Robin, Thank you so much for pointing this out. This is something that I still struggle with even after living with this illness for over ten years. I think in ways I’m still in denial, thinking someday a miracle will come along and my Fibro life will be just a thing of the past. I try my best to have hope and stay positive but it seems days get longer and my patience wears thinner. I just wish there were more answers. Drs and researchers are just not taking this illness seriously and it’s sad how much it effects so many lives.
It’s such a really hard thing to hold on to hope but be realistic at the same time, right?
Hi Robin, I realize that statistically FM affects women, but I guess I am that rare male who suffers with the disease too. I also have degenerative arthritis, so it took years and the eventual wisdom of a female Rheumatologist to definitively diagnose me. I was always active, playing golf, working on projects and maintenance of our home. But now I can scarcely do anything physical at all. It has been very hard to accept my plight for it is extremely emasculating for a man not to be able to do manly things. Your testimony of facing the reality of your situation is inspiring; thank you! I am still on that journey, but I can honestly say, I am not there yet…it is so hard!
Steve, there are actually a lot of men who suffer from fibro. Not sure if you’re on Facebook but I know there are groups specifically for men with fibro. I’m so sorry you are having to deal with this!
Steve, I know exactly where you are coming from brother!
Robin, I know how you feel.
I found new hope when I saw a video about a doctor that has FM, how she got better and how she now helps others get better with the Guaifenesin Protocol developed by Dr. Paul St. Amand.
I read Dr. St. Amand’s book and more stories about how people have gotten better.
More success stories on a Facebook support group.
It is the first time in 5+ years that I heard of getting better and not just “managing” the symptoms.
I started the protocol 12 days ago.
Here is the link to the video “Fibromyalgia Documentary Getting Our Lives Back” youtu.be/g5Pu6UQDtoA
Move videos here: melissacongdonmd.com/the-fibromyalgia-summit/
Kate, I’ve watched the video and have s couple of Dr. Armand’s books. Thanks for sharing the info
Robin, I read all your posts (and look forward to them) every week. I am from Spain and my English is not so fluent, but wanted to tell you that your “new you” is helping me to better cope with FM, to be positive and to stay strong. I feel fortunate and grateful to be able to read your posts. Thank you!
Aww, Rebeca, you just made my day! ??