We started this blog with the pretty foolish boast that we were now "free" of chronic fatigue. So the next week what happens? Craig gets a mystery virus that has him crawling around the house again and I follow very quickly with a severe bout of Bronchitis. Can't believe it. We haven't been sick for more than a year.
The emotions have all come back this week.
The loneliness - watching, helpless, while the love of your life is sleeping 20 hours plus in the day.
The fear - the wondering, the not knowing - How long O God. Can it be worse?
The pointless wishing - that some human could understand without words; could just know what was happening - what it was like in your home; could ring without you having to explain; could take part of the burden for you.
The humbling - when all your plans go under and you see your self as completely fragile and your husband, your rock as vulnerable.
The empathy - for all those who are suffering with sick family that you tend to forget when you are doing fine.
The clinging to Jesus - just clinging because it is all you can do. Knowing that he does understand, trusting because it's all you can do, praying all the time.
Thursday, April 16, 2009
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7 comments:
Hi Lauren,
I just wanted you to know that I feel your pain honey, and I am definitely a human who can understand without words, and can know what's happening because my poor husband has been suffering with very severe Chronic Fatigue Syndrome for twenty years now. I've been through everything you were talking about, and more, but we never had a year without the sickness plaguing him. When we were first married in 1980, he wasn't a real healthy guy, but at least he could still work a job. He had trouble many times and missed work, but in 1989 (9 years after getting married) he became completely and totally bedridden and could no longer even get up to get ready for work, much less leave the house. If he tried, he just ended up on the floor because of a lack of physical strength, so he would fall down and wouldn't be able to get up. Ever since 1989 (we had two little girls at that time) he hasn't been able to work any kind of job whatsoever. He used to be a computer expert who built computers, repaired them, and programmed them. But with the CFS, not only did he not have the physical strength to work at all, but he also had severe memory problems, and couldn't concentrate anymore. He also developed Fibromyalgia and was in constant pain. There were many many many days where he would be asleep for 20-22 hours of the day, and it left me crying in our living room, because he would get up and walk into the living room sometimes, and then say "oh, I need to go back to bed" because he was so weak and sick that he couldn't even stay up with me, and then he'd be in bed for another 20-22 hours. He was way too sick for me to try to work away from home, and so we lost out home and were forced into bankruptcy. We had to live (with a friend) and on welfare and food stamps because being approved for Social security disability took soooo long. Back then, practically ALL of the doctors didn't believe CFS was real, and they accused us of it all being in our heads, and told him to go back to work, even though he was so weak and sick that he couldn't even hold his head up at the doctor's office. By the time we were finally approved to receive disability benefits, nearly two years had gone by, and my husband had many times where he would just suddenly fall down onto the floor because he had no strength. Many times, he had to crawl on his hands and knees just to get from the bedroom to the bathroom. In 1997, I started doing a paper route because it was only part time, and it would get done while he was asleep. I couldn't leave the house during the day because I had to be there for him in case he woke up and needed me to get something for him to eat, or had a doctor's appointment that I had to bring him to. I wasn't able to start working full time until around 2007, and it's still pretty hard for him not to have me at home all the time, but he sleeps during most of my shift, and doesn't wake up until around 2:00 and then I get home by 5:00. We are Christians who have been forced to rely on God because there was no one else who could even begin to understand, and He's the only one who could help. Jesus is our savior and Lord, and it's because of Him that we've survived and haven't committed suicide.
If you guys went a whole year without being sick, you are very blessed, and can be encouraged that even though it looks pretty bad right now, there's a good chance that things will get better soon. Have you been fortunate enough to have a doctor who actually believes in and understands CFS at all? We haven't. We're on the state medicaid program (for low income people) and we have to go to their doctors. Our doctor is nice enough to prescribe medications like Morphine for his pain, but we can't go to any of the specialists because they're all too expensive, don't accept our insurance, and it would involve traveling, and my husband (Garry) is way too sick to travel at all. I have no idea what the future holds here on this earth, and it's really sad when I hear people at work talking about what they're going to do for the weekend because they're always planning on going out and having fun together. Garry and I have been married now for nearly 29 years, and probably the last time that we actually went out and had any kind of fun at all was over 25 years ago. The way things are now, he's doing good if he can just make it to his doctor's appointments, and remains on the couch (lying down) or in bed the rest of the time. He gets sick when he sits up, and so he needs to be lying down in order to get relief. This is because the heart and the system don't have to work quite as hard when the person is lying down.
I know I didn't have very many encouraging words to share with you today, but hopefully just knowing that there's someone else around who understands what you're going through because they're going through the same thing, will offer some kind of comfort and help.
Thank You Sandy and thank you Jesus for Sandy & Garry. I needed your witness and your comfort. Thank you for taking the time to write your story. Craig also read it and was encouraged and humbled.
We were reading Johnathon Edwards today in his book 'Religious Affections' and we were encouraged by his words. And your words have just illustrated his point vividly. Thank you. I'll quote him here to encourage you.
"Last, trials benefit true faith by purifying and strengthening it. They not only show its reality, but they also tend to refine it, delivering it from anything that might get in its way, so that all that's left is what's real. Trials tend to make the loveliness of true faith appear at its best advantage, while also tending to increase its beauty by planting it firmly, making it more lively and vigorous, purifying it from anything that dulls its shiny glory. When gold is tried in the fire, its impurities are purged, and it comes out more solid and beautiful, and in the same way when true faith is tried in the fire, it becomes more precious, and thus, again, it is " found unto praise and honour and glory."
CFS definately delivers us from anything that might get in the way of faith. Sadly including weekend activities. I know how that feels. We are down to friends-we-can-count-on-one-hand who still call us because we have had to say no so often.
As for Doctors; our current doctors are a lovely Christian couple who understand CFS and fought the insurance company for us to prove that CFS wasn't a mental disorder so that Craig could be insured against it but to no avail. So should this continue again we have nothing to fall on but the grace of our Lord.
We have gone completely to natural therapies for our recovery because the doctors all just looked at us blankly, even our current doctors can only suggest natural therapies for us. They are both trained in Naturopathy to some degree or at least well read in it. But we generally just treat ourselves these days. Saying that however, this week we both actually went to our doctor for ourselves for the first time in about 3 years. Typically Craig was told he had a virus and given a list of blood tests as long as his arm to have if he doesn't get better within 2 weeks. I was given antibiotics because my bronchitis was bacterial and I am actually taking them although I normally wouldn't in pregnancy. Simply because I want my kids back. We have been so sick that we can't look after them so Mum & Dad(thank God for them) have had the boys for 4 days now. I've been sitting at the computer a lot because lying down I have a coughing fit. Craig has been sleeping and SCENARing himself whenever he is awake, taking Lacto Flora and Minerals, Vitamins and Antioxidants. What ever this is it is huge because he has been able to fight so many small things ever since he bought his SCENAR and like I said for the last year he's had nothing that he hasn't been able to sleep off overnight so we would say he hasn't been sick at all. He does say he feels a bit better each day but tonight is the first time he has eaten a meal with more than one ingredient. He's been living on rice.
Anyway, thank you again. Do you have a blog. I'll click on your name and check it out if you do. I was hoping this blog would attract Christians. I almost called it something about Christians with CFS but didn't. God in his sovereignty has already used it for his glory without a fancy name so I am happy.
I will pray for you both and for your girls.
Love
Your Sister in Christ
Lauren
Hi again Sandy,
Couldn't find a blog for you so i'll follow you up here and hope you get it. Sorry we said in the How to Comment instruction that your comment would show on the main page. It doesn't and I just don't know how to get it to show. I'll keep trying though because comments like yours are so helpful.
Lauren
Hi Lauren,
I sent you another comment a few days ago, but since I'm not seeing it on the blog, (like I saw my first message to you) I don't know if you ever received it or saw it. And so before I write another long comment, I was wondering if you would email me, to let me know that you have seen this. The email address is sandyjean2@cox.net
Thanks,
Love in Christ,
Sandy
Hi Sandy,
I sent an email, did it arrive?
Lauren
Hi Lauren,
No, I didn't get an email from you yet. Congratulations on your baby girl!
God Bless you all.
Sandy
Hi Sandy,
I sent again but if it doesn't arrive my e-mail is lozzathome@gmail.com
Love,
Lauren
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