Thursday, April 28, 2016
Living with a Chronic Illness...Crash Day
I recently wrote a post on living with a chronic illness and I was overwhelmed with the support that I found among so many of you that have contacted me both privately and in your responses here at my blog. SJ asked me if I could do a blog post on what supplements I am taking that help me and that is in the works for next week. ;)
This week I have been pushing myself to get everything done for my parents visit tomorrow. They are coming for a long weekend and we will be having the entire family out here for several meals and some fun family time. That, along with the normal craziness of throwing all the extra time and energy that have to be put into the yard and garden (the weeds are taking over here fast), have worn me out. I overdid it and am now paying for it big time. I "crashed" today. I thought I would share with you what a crash day is like when you still have to get things done.
Last night I fell asleep quickly (which is not like me at all and should have been my first clue that today was going to be the big crash). I slept for 7 hours, which again is not like me since I usually average about 5 hours a night. For me, Chronic Fatigue Syndrome, combined with menopause, makes sleeping very difficult, even when I am exhausted. This complicates things and makes it even worse since your body needs lots of rest with this particular illness. I woke up at 9 this morning and felt like I had been hit by a truck...a very large truck. :P
After I got some coffee, I emailed my mother to see if they were indeed going to be coming over. Yesterday I got an email from my mother telling me that she had been sick with a bad cold and if she was still feeling the same or worse, they would be cancelling their trip over here and we would reschedule it for a different time. She had given us the option of cancelling them coming over also. We emailed back and forth because my hubby and I still wanted them to come (she is past the contagious stage) if she felt up to it but we would understand if they had to cancel. I explained to her that I was having a crash day, but that I should be better tomorrow if I rested today. Bless my wonderful mother's heart, she told me they were coming and that I was to take it easy today and not worry about getting the house all cleaned because they just wanted to come and see us. We are what is important, not how the house looks. ;) She is so amazingly supportive of me and knows how this illness takes it's toll.
Anyway, I still knew that there were some things that had to be done today to make things easier for everyone this weekend. So I got my very achy and tired self up off the couch and got two large pots of water boiling. Into one of the pots went the rest of the deli chicken to make homemade chicken soup and into the other went 2 boxes of penne pasta. While those boiled, I cut up the veggies that were to go into the soup and dug out 2 bags of pasta that just had a bit left in them. By then I felt like I needed a nap but I powered through and grated up a pound of Mozzarella cheese for the pasta dish. My hands ached while I grated the cheese, but it needed to be done. I got the chicken out of the pot so it could cool and threw the veggies into it. By this time the larger pot with the penne pasta was ready to be drained so I got that lifted up (it was heavy) and put the noodles into the colander to drain and then put the pot back on the stove and got 2 packages of Italian sausage browning in it. I used my potato masher to break up the sausage and by this time my back and arms were hurting so badly that I wanted to cry. I added some minced garlic to the sausage and let that go for awhile. While that was cooking away, I added the other noodles to the soup pot and got busy picking and shredding the chicken meat and throwing that back in the soup. My son Jaysn called while I was doing all of this and although I would have loved to have a long chat with him, it was taking everything I had to concentrate on cooking so I had to end our phone call before I would have liked to. :( Finally the sausage was cooked so I added 2 large cans of spaghetti sauce to it and let that simmer while I wrestled the largest baking pan I had out of the cupboard. I'm afraid I woke my hubby up with all the noise I was making and felt like I had been beat up while maneuvering it out from the top shelf way in the back. I finally got it out, sprayed it with some cooking oil and then added the grated cheese to the pasta and sauce mixture and then put all that into the large baking pan. By then I was done...totally spent...collapsed on the couch.
My sweet hubby got up shortly after all this (he sleeps during the day since he works the graveyard shift) and kindly cleared out space in the refrigerator for me to get the big container of soup and the huge tray of pasta into the fridge. I then told him about my parents coming over and that I had told them not to call Friday morning before they headed out since he would be sleeping and I would be running over to get his paycheck and then taking it to the bank. Jeff gently told me that I would not have to run his check over to the bank and that we had already had a conversation about how he would just get it Friday night and we could deposit it on Saturday morning since we would be in town. At this point I was a bit confused and then remembered the conversation and again wanted to cry out of frustration because of this darned "brain fog" that is again part of this illness. He could see that I was about to lose it and listened to me as I expressed how frustrating this illness is to live with. I told him what the rest of my "to do" list was like baking banana bread and that I would do that tomorrow and a few things left to do today. He again gently reminded me that I had some banana bread in the freezer and told me that he would take care of the other things on the list for me. I honestly would be lost without this man.
So here it is about 2 this afternoon and that wonderful man of mine is in the kitchen cleaning it up while I am curled up on the couch with heavy eyes, an aching back and neck, arms and legs that feel like lead weights and am fighting back tears of frustration. My brain is in fog mode and I just want to feel normal and be able to think clearly. Days like these are horribly frustrating and depressing. I am very thankful that I am usually a pretty upbeat and positive person because if I were not, I could see how this could lead to terrible depression. I have to remind myself that this too will pass or I would go into a horrible downward spiral emotionally.
I think I am going to end this post here and go curl up in bed for awhile. The tears are welling up again (out of frustration and pain) and I'm in serious need of a nap. Tomorrow should be a better day so I am holding onto that. Such is life with this illness of mine.
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I hope that you have now had some rest and are feeling a little less upset and worried. Remember, your family are coming to see you and don't feel that you have to do lots to entertain them. Take care of yourself. Hugs! xxReplyDelete
Thank you Amy. I had a good cry while my hubby held me tight and then he prayed with me. After a 2 hour rest I am feeling a bit more "centered" again. And thank you for the hugs. :)Delete
Oh, Debbie. My heart hurts for you. I wish I lived closer to you so I could help you when you have days like this. It must have taken a lot out of you just to share this with those who read your blog. I hope you are resting as I write this and that you feel better in the days ahead. You are in my thoughts and there are prayers going out for you. God Bless You and Your Husband. You are a beautiful team! ((HUGS!!))ReplyDelete
Thank you Dawn...I appreciate your thoughts and prayers. I am feeling better after a good rest and my wonderful hubby who held me as I cried earlier has told me that I am to rest this evening and not try to do anything more than that. :) He and I do make a good team and I love him dearly.Delete
Sorry to read that you are going through this. I have fibromyalgia and heart challenges so I understand the frustration and pain. Will keep you in my prayers. When I can't do hardly anything I use the 5 approach. I watch TV or read or do light paperwork for 15 min. at a time (a timer helps) then I get up and do 5 dishes or fold 5 pieces of clothes. Sometimes it takes me all day to finish but that has been my sanity saver that and giving myself permission to take it easy for the day. (resting was a super hard one at first) Take care. Glad I found your blog last week.ReplyDelete
Hi Crystal and welcome! I love the picture of your dog as your profile pic...what a cutie. :) I'm so sorry that you also have to deal with limited energy and pain and have heart challenges. I love your suggestion about doing the 5 things and then taking a break. I'll be keeping you in my prayers also. I hope you have a nice weekend!Delete
I just find that on rough days with no energy I feel better if I get at least a little something done. Even small like folding 5 things or 5 + 5 things. My little dog is 16 1/2 and not in the best of health but we have been blessed with him since he was 6 weeks old. He still looks young. His name is Merlin. I love how your cat "helps" you around the house. Take care and enjoy your family this weekend.Delete
Merlin, what a perfect name for him! My family is now here and I am enjoying them so much. Seeing my parents with my grandchildren (their great grandchildren) just warms my heart and I treasure these precious moments.Delete
Oh boy, do I get it. I've never had a long-term injury like I'm facing now, and the feelings of hopelessness, frustration, and depression are soul-crushing. Not to mention the actual physical pain on top of all that. I have crash days too, normally after big family events. Battling pain and the emotions that go with that is one of the hardest things I've had to do, and I've had some dark days. Somehow though, if I can make it through the black days, I always find the sun. It's a vicious circle for me. I think one of the hardest parts is how alone I feel. Some days I wish the hubby would work late or go out with his friends so he doesn't have to deal with me and my depression. He always reminds me that is the depression talking, not him. I just wanted you to know that you are not alone, though I can imagine that's how you feel. Get lots of rest, I always find that's key to making me feel better. I hope you have nice weekend Debbie, I'll be thinking about you! :-)ReplyDelete
(((((HUGS))))) Jessica. I'm so sorry you are going through all of this. Please know that you are not alone and that there are people who do care and will be there for you, myself included. We can be there for each other. It sounds like you have a wonderful and understanding husband like I do. That is such a blessing! I'll be praying for you too and I do hope you have a wonderful weekend. :)Delete
I had tears in my eyes after reading your post. It was like my story in many ways. I'm just now reading the post because I've had a few days in a row where I've crashed. But, oh, last Saturday and Sunday were so worth it. Or, at least that's what I've been telling myself. I am so touched by your posts and those of the people commenting. This illness has caused a lot of isolation for me - so to find a community here has been a huge blessing.ReplyDelete
I, too, often describe waking up in the morning after a long sleep as 'being hit by a semi truck'. My CFS manifests itself first and most consistently in unrestful sleep. I have other symptoms for sure, but this unrestful sleep is the most baffling to me.
I, too, have learned how to divide up tasks - like you described and like Crystal described. I cook my dinners like that most of the time. Cook enough chicken or pork chops for 2-3 days and do the cooking mid-day. Then all I have to do is reheat at supper time. Or just not do some things I would not have thought twice about when healthy - like vacuum my entire apartment in one go. Some weeks, I only get one room done at a time and some weeks even that is too much.
Sending you big hugs..SJ in Vancouver BC
((((HUGS)))) SJ. I'm so sorry you had a crash too. But sometimes those crashes are worth it if it means we got to build memories with those we love. :) I can't vacuum my entire home in one day either. I have to divide it up over several days. My husband has taken over that task now for the most part because he can see that it wears me out very quickly. I'm so glad I share what I have gone through and continue to because I have met so many wonderful people like you, Jessica, and Crystal and others who are going through the same or similar things and it really does help to be able to share our experiences and know that someone else understand right where we are . There are also so many other amazing women like Dawn, Amy and Deborah and others who don't have these kinds of illnesses but have been so supportive of those of us that do. I feel so blessed by the blogging community and by my other friends that I have met online that have been there for me time and time again. :)Delete
It has been an interesting afternoon and evening here with my family. My mom and dad got to see first hand how this illness messes with my mind. I kept mixing up my words and the names of people and my husband was helping me out to get them straight again. He is used to doing this for me but my parents had never experienced a crash up close and personal with me before. I had to explain to my mom that this is also part of CFS...sometimes I can push my body to do things but my mind just won't get with the program. I also told her about my day yesterday and how bad things really were. I had not ever shared in that much depth about the toll it takes...I just kind of gave them a general idea of some of the symptoms, and they have seen the tiredness, but had never told them about how sometimes it hurts so badly that I cry. I think I have been trying to protect them in a way from knowing how bad it can get. I have always been very protective of them and felt like they already had enough to deal with in their own lives. Tonight though it seemed ok to finally let them see "behind the curtain" so to speak. I think we are all getting better at being more transparent about things and that it a good thing. :)
Be blessed SJ and I hope you have a quiet and restful weekend and recover from your crash soon.