While the "Fibro Fog" is not as thick, I thought I would try to get the words down here before they disappear into the thick fog once again. Even as I am typing this, I have to constantly go back and correct things because I know what I want to say but trying to get my fingers to type what I am trying to put down in words seems to get lost in transit. And yes, my mind also seems to short circuit and gets a bit lost at times too. Very frustrating! 😖 If you have stayed with me on this, it took me a full 5 minutes just to get that typed out. UGH!
I love blogging, but have not been posting as much lately because when I do have energy, I have been trying to keep up on the gardening and housework. It seems that if I can get that done one day, then I crash the next. It is a vicious cycle. I do try to take breaks in between and pace myself, but after having a pretty good run there health wise for awhile, I feel like I have now taken a good 3 steps backwards. Here's an example of what I have been dealing with. On Friday I was able to get laundry done, work in the garden, get some cooking done, got the hot tub chemicals all taken care of and did a few projects around the house. I did take breaks in between and I thought I was doing a really good job pacing myself. Friday night I knew I was in trouble and was so sore that I had trouble sleeping. Saturday morning I thought I was doing ok, so I picked the strawberries and went next door to visit with Bob and Norma. I came home, did a load of laundry, picked some of the cherries off the huge branch from our cherry tree that had broken overnight and then rested. After awhile, I showered and Jeff and I then headed into pick up a few things and get my prescription. By the time I was done with my shower, I was so sore. By the time we hit Walmart, my muscles were screaming and I could barely move. I had to use the shopping cart to hold me up as I literally shuffled along in the store. I looked like a little old lady with balance issues. Jeff then took me out to an early birthday lunch. They tried to seat us at these tall tables and I had to explain that I had Fibromyalgia and trying to get up on those tall chairs was going to kill me. One of the waiters, who must know someone with Fibro immediately said, "We don't want you hurting, let's get you an comfortable booth". God bless that young man. The concern in his voice and face told me that he totally understood my pain. We did get some strange looks from other people when Jeff had to put my leftovers in a take home container for me because I could not even lift my plate to do it myself. I went to bed as soon as we got home.
Sunday I was talking with our son Josh and told him I needed to get this under control and was looking at buying a fitbit or something to track my activity level, heart rate, sleep patterns, etc. so that I could also journal when I had energy, when I felt the crashes coming on, etc. and see if I could find patterns between my crashes and or low energy days and also see what was going on when I had good days. This is something that I have been wanting to do for awhile how so that I can establish a baseline and go from there. Josh and his friend Katie helped me to find the right fitbit for me and Josh even gave me $50 for my birthday to help cover part of the cost. I am so thankful to them both because I really feel like this is a tool that will help me figure some things out.
Later that morning, our hanai son Ben surprised us with a visit and we had a wonderful time! It was so good to see him and it just lifted my spirits. He has a genetic disease that affects his muscles, making him feel weak at times, but praise God , he does not have pain with it too. He and I talked about how we both appreciate the good days and try to focus on what we can do, live in the moment and soak in life and try to remember on the bad days, that this too shall pass and there are better days ahead. We both agreed that sometimes that is hard to do but if we focus on all we can't do, we would be very depressed, so we choose to focus on the good as much as possible. He told me that on his worst days, he remembers that his disease is not terminal and that others have it way worse than he does. Is it any wonder I love this wise young man beyond his years so much? He is pretty awesome!
Today was more of a typical day for me. I got laundry going when I first got up (after another rough night sleep wise) and then hung it out to dry and got another load going but put that one in the dryer(I know my limits). I had some coffee and then got some lettuce harvested in the garden, along with some strawberries and then came in to rest. I was tired but took a shower and that seemed to perk me up a bit so we ran some errands and by the time we got home, I had to lay down for about an hour to ease the aching muscles and because I could not keep my eyes open anymore. I rested for about an hour before the phone rang, so I got up and have been sitting here resting and trying to summon up the energy needed to get the clothing off the laundry line and then fold it. I don't have the energy to cook tonight so it will be another whatever you grab for dinner.
Tomorrow we have the family coming over for a potluck/BBQ in the afternoon and I am praying that I will feel better by then. The only things I really need to do before they get here are cook the rice and make the shoyu chicken (easy to do) and then vacuum. Jeff will need to sleep until they all arrive since he works tonight. I am so blessed that my family understands my illness and they all watch out for me and pitch in to help. I think most of my time will be spent cuddling little Steven while the rest of the crew picks cherries from our tree and takes care of other things here. I just want to be able to sit back and soak in all the joy ,love and laughter that my family brings into my life. They are my reasons to keep trying to find ways to deal with my Chronic Fatigue Syndrome, IBS, Fibromyalgia and other assorted ailments and illnesses. I honestly think I would be so depressed if it were not for all of them. They are my everything!😍
Hi Debbie, I can tell you have a sweet thoughtful family ♥️
ReplyDeleteHope you have lots more good days and a lot fewer bad days.
Thanks Rhonda, I am truly blessed with my family. I hope you have a great 4th of July my friend!
DeleteDebbie,
ReplyDeleteI do not have fiber myalgia, but am diabetic and gluten-intolerant. That combination is difficult to live with at times. When I eat any wheat--even a crumb by accident, it causes severe IBS. So, miserable. From the second I ingest it, up to 24 hours later, I can suffer symptoms. So, whereas I can not exactly understand what you are going through, I do understand the frustration of not being able to do the things I want to do, when I want to do them. I also need more rest than I used to, and ache all over after doing anything strenuous. I'm afraid that's because I'm getting older, and am out of shape, though:) :)
The main thing I find with a chronic disease is that it never goes away, and that's hard for me. I do have to fight depression at times. I mean, it NEVER goes away. Not even for one day!!! I can tell from your post, you feel that sometimes, too. So, I just want to encourage you. I think you are doing a great job describing how it is, and how you stay positive. I've also found that if I act, talk, write, and be positive, it's easier for me to stay upbeat and cheerful--even if I'm not super happy with my day.
I love your posts and how you find pleasure in simple things. I also find that it doesn't take lots of money, or expensive things to be happy. Family is so important to me, too. I've found that when I'm downhearted, little ones cheer me up. It sounds like you have a few days of extreme cheer heading your way, if you get to hold that sweet baby a bunch.
So, hang in there. You are doing great under difficult circumstances--you are doing your best, and that's the most anyone can do:)_
Becky, I knew you were gluten intolerant but had no idea about the diabetes and the depression. My heart and prayers go out to you my friend. ((((((HUGS))))) Your comments here just touched my heart and I want you to know that you also encourage me. Your blog is one of my favorites because I can see the love that you and your beautiful family share. You and I are very alike in so many ways!
DeleteThank you, Debbie. That's so kind of you to say.
DeleteI have been able to fight off the depression almost all of the time, with a few days where I feel "down-hearted." (of course, to be fair to myself, I have had a lot of challenging circumstances in my life over the years) For the most part, I can stay positive. But, what worries me a bit, and keeps me trying my hardest to stay cheerful, is that depression runs in our family and I do have some other family members who have had great difficulty with it. So, being the worry-wort that I am, I really, really worry that I will succumb to it! So, I try really hard to be proactive with staying positive.
Becky, it runs in my family also so I totally get where you are coming from. (((((((HUGS)))))
DeleteDebbie I'm sorry to hear you are struggeling. I hope you start having more good days soon. In the meantime be kind to yourself and take it easy.
ReplyDeleteThanks Wendi, I hope so too. I am trying to find that balance while counting my many blessings!
DeleteOh how I feel for you. You want to do all you can but your body doesn't cooperate. I too have fibro. and have the good days (where I tend to over do) then the crashes. You are so lucky your family understands. Until someone has been in your shoes they can't understand how you are too tired to even walk across the room or the pain is so unbearable. As for the sleep crashes - I always know when I've over done it because I can't keep my eyes open. It's like sleep is trying to overtake me so I don't do anymore damage to myself. One Dr. explained Fibro to me as your muscles getting tiny microscopic tears all day long - I guess this happens to all of us but when you get the deep restorative sleep the serotonin that is released into our body during that restorative sleep repairs the tiny microscopic tears in our muscles. No sleep or poor sleep and we are in a world of hurt. I have heart problems too so most of the things they would give someone for sleep interact with my meds so I don't take them. Not that I want any more meds believe me! So I too am constantly battling to not over do it.
ReplyDeleteBen sounds so wise. It's hard to see a young person with health challenges but I find they are such an inspiration at times in how they handle it.
Take care.
(((((HUGS)))) Crystal. Thank you for sharing what your doctor told you. Do you regularly have problems getting deep sleep? I sure do and it just makes things worse. Can you take Melatonin or Valerian to help you sleep or do those interact with your medications for your heart also? I can't take either of those because they give me horrible nightmares. I'll be praying for you!
DeleteI will keep you in my prayers also. I can't take either one of those for sleep. So many things interact with my meds for my heart and I'm allergic to so many things also. Deep restorative sleep is what helps. It's just getting it can be the problem. Take care.
DeleteSome parts of CFS are still surprising to me. The brain fog is one - when I'm overly tired, it's hard for me to even form a sentence. It's like my brain just freezes or something. When I'm tired, I'm not on the computer but I'd imagine typing a sentence would be just as hard.
ReplyDeleteAnother surprise is being so tired but having a hard time staying or going to sleep. I haven't tried the Melatonin or many supplements actually. I also have an issue with reflux and vitamins seem to put me over the edge with it.
I'll be interested to hear how the fitBit works for you. I still am very old school and keep a daily written journal. While having my coffee in the morning, I assess when I went to bed the night before, how well I slept and then do a really honest assessment of how I'm feeling - physically and emotionally. I also look over what I've been doing the preceding days. Then I decide what I'm going to do for the day. Like today - I only went to one garden. All of them could have used some attention, but one was all I could manage and that had to be ok.
I've also come to realize that I don't have to 'like' any of what's going on but I need to work on accepting my limitations and be kind to myself and not have a critical voice. Will close here in case blogger hiccups... SJ
I also wanted to say again how very much I love your blog and the depth of sharing you do. You and many or your readers provide a level of understanding about this disease that I don't get in my every day life.
ReplyDeleteFor instance, a well intentioned friend was trying to introduce me to a friend of hers who also has CFS. A few months had elapsed since she had given me the contact information for this new person. My friend offered to setup a time for the three of us to have coffee together. I had to say to her that I just could not do one more thing in my life. As much as I wanted to make new friends, I just don't have it in me to do it.
My friend could not understand at all where I was coming from. She has no reference point for it in her life. I know in writing this, you'll get it. And I so appreciate your level of understanding.
I'll keep you in my prayers as well. SJ
Hi SJ, I'm going to reply to both this comment and the one above in this reply if that is ok with you. :)
DeleteI think you are very wise to keep a journal and I'm sure it is helping you to track and see the patterns. I found some printable journal and tracking chart thingies online for CFS and Fibro that I am going to print off. You are right on having to accept your limitations and be kind to yourself. That is something that I really struggle with. I don't like being limited in any way so this is a constant battle for me. I've got a really strong German stubborn streak in me. ;) Add some fiery Scottish blood in there too and well...you get the picture I'm sure. LOL!
I'm sorry that your friend does not understand how you have to limit what you take on in your life. I'm sure she meant well but unless you have these and other similar diseases, or you are someone who lives with and understands someone with these diseases, there is no way you can understand that there is a very fine line between being able to do certain things and taking on one more. I so get it. I had to tell a friend, who is like a sister to me, that I really could not take on helping her monitor her aging parents (who are also like family to me). I am so blessed that she understood that as much as I love all of them, the stress that it would put on me is just not something I can handle right now. I recently reached out to a family member who I do not know well who also has CFS, at the request of another family member, to let them know they were not alone. I was very careful in how I worded my email to them saying that I do understand what they are going through and am here if they want to talk to someone who does understand and I would be happy to share with them in more detail things that have helped me. I have not heard back from them and I am not taking it personally because I do understand that they may not have the energy to even put into correspondence with me. They are also a very private person and may not feel comfortable sharing that part of their life.
Praying for you my friend and try to keep cool in this heat!
What a beautiful and loving family you have, Debbie. I think it's really important that those close to you understand whatever is happening in your life, no matter what that is - whether that be an illness or a sadness or your dreams. I hope that you will have many more good days than difficult ones and that your new Fitbit will help you. Meg Xx
ReplyDeleteThank you Meg, you are so sweet! Yesterday most of the family was here and my son Josh, who lives in Washington DC area also called. The day started out rough, with me in tears and hurting really badly so I got in our hot tub and that, along with a shower helped. When the family all got here, they knew I was hurting and were all so sweet and protective of me. I got lots of cuddle time in with the grandkids, the older grandkids and I explored the gardens and picked berries and I picked cherries with the older grandkids and my girls (I only picked a few). CHris helped me in the garden for a few minutes with something and Jaysn took care of a few things for me inside the house. My cousin and hubby were very sweet and made sure that I rested as much as possible. Just having them all here really lifted my spirits and that helps my body and mind heal. :)
DeleteBe blessed!
Sorry to hear you've been having so much pain, Debbie. I think, even when you are pacing yourself, you are overdoing things. You need to rest a lot more than you do! Hope you get to sit back and relax a bit more this week and that the rest will help. Take care of yourself.
ReplyDeleteThanks BLess and I believe you are spot on. I do overdo things. I keep thinking I can do what I used to, but that is no longer my reality. Over the past few days I had to accept that there are things that my hubby and I had planned on doing together like taking certain hikes, that will not be possible for me anymore. It's not an easy thing to accept, but at this point I have to.
DeleteI am relaxing more today. I'm doing one thing, then resting, another thing, then resting and trying to be very kind to myself. My sweet hubby made sure that since I was sleeping soundly this morning (something that is very rare for me), that he got up with the fur babies and took care of them. I finally got out of bed around 9 a.m. That gave me about 7 hours of sleep which, for me, is amazing!
Be blessed my friend!
I very much appreciate your comments and support.
ReplyDeleteAnd just so you know - I have a stubborn streak as well. Or sometimes I call it my 'toddler tantrum'. Like today I probably did too much in the garden and actually thought about it while I was in the garden. I sort of just shrugged my shoulders and went on with what I was doing. I was having too much fun - but because of too much time in the garden this morning, I'll have to skip my Senior dinner out tonight. I made my choice when I was playing in the dirt and have to stay home tonight and that's just how it is. I wish I could do both but if I do, I'm pretty sure that I would end up feeling punk tomorrow.
One thing that helped me reset and deal with my limitations was some advice my doctor gave me. She encouraged me to now compare how I am now to my even 40yo self. She said, just compare yourself to how you were last week. She was trying to get me to see and accept my new reality.
I don't know if any of that helps. I also have been watching Joyce Meyer recently. Yesterday's show was talking about knowing God has a plan for my life. And to trust in Him. I don't have to like it - but I know He has my best interest at heart. SJ
HI SJ,
DeleteI too have come to appreciate our conversations, support and our friendship. I'm glad that you are able to know your limitations and make the choices that need to be made and NOT feel like you still have to do everything. ;) I have done what your doctor suggested and to be perfectly honest, I got so depressed doing just that. I can even look back on my blog here and see how much less I can do now. Back to that stubborn streak I suppose. ;)
I really enjoy Joyce Meyer. I used to watch her shows sometimes when we still had DISH tv. I'll have to look through my free channels on ROKU and see if I can find her shows on one of those channels. YOu and she are right...GOd does have a plan for our lives. Thank you for that reminder.
Be blessed my friend!
Some times I think I'm on the edge of being depressed. But then I know I'm not. I've actually come through clinical depression years ago and what I'm feeling is not that. I do get incredibly sad some times, though.
ReplyDeleteIn reading through my comment - I had a typo. Hahaha! My doctor said *not* to compare myself now to my earlier self. I, too, can see where I am doing less then when I first got sick or even last year. And then I think, maybe not. Perhaps I'm just managing my life differently. Early in my CFS, I would end up literally in bed every few days because I had over done things. I rarely have to spend the day in bed like that. Or only have gingerale and crackers because I'm feeling punk. I crash but it's not the same.
As for Joyce Meyer, I also follow her on facebook and videos will drop in there. If you're on FB you might find her there. Occasionally I'll find her books in the thrift store too. Do you get DayStar on your Roku? That's one of the Christian tv channels that's on my cable tv. (I'm still paying for tv and I'm ok with that choice for me. I have as basic a package as they have). Some nights I go to sleep listening to her preach.
So no dinner out last night and no swim class this morning. And that's just how I'm rolling right now. I did get two of my gardens watered this morning and it was glorious outside when I was there.
Have you heard the song Eye of the Storm? It played on the radio as I was driving from the garden. I just love singing that song. Take good care - SJ
Just got the call. I have sleep apnea!! Enough to warrant treatment. I am over the moon happy - strange to be this happy with a 'negative' diagnosis. It's treatable - most likely anyway. I go in Tuesday to be fitted for a machine and a month's trial with it. SJ
ReplyDeleteHi SJ, I love the song "Eye of the Storm". :) I think we may get Daystar on our Roku. Funny about your typo, it did make all the difference in meaning. ;) I'm so glad you heard back on your sleep test. I'm sure that using a CPAP will make a huge difference in how you feel. It sure did for my hubby. :)
DeleteOh my goodness you are having a rough trot. I hope that your fibro flairs lessen and allow you some quality of life.
ReplyDeleteThank goodness for wonderful family members and people in the public who understand and assist in the rough times.
We attended a nephews March Out.army, today. He is off to trade school to become a fotter and turner. We are in the cold south of Aus and have found winter. I dont like it at all. Our airforce son and his little family also attended. I have been getting more time with the Granddaughter and am loving it.
Here's to feeling better Miss Deb. Big hugs from me
Thank you Jane. :) I hope your nephew enjoys his time at the trade school and finds a good job after he is done there. I am so happy that you are having more time with your Granddaughter...what a blessing! Stay warm my friend!
DeleteWhat a blessing that you have family so close by to help out with all the issues you have Debbie, it must be so hard to be so limited to do things that you would love to be doing. You have such a great attitude about it too. Hoping this Fitbit will make a difference for you!
ReplyDeleteThank you Marilyn, I am hoping so too! :)
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