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Very high the last two days

Oct 15, 2015 10:45 AM

Battled sleep all night last night again. Migraines the last two days and lots of joint and fibro pain. Still in bed at 10:30. I know that I need to get up and shower but I just want to lay here. Am I being laz I almost always feel better by 3-4ish so my husband has no idea what I go through each day. He usually helps me get my meds, coffee, ankle and wrist wrist compression gloves and socks on before he keaves for work. But he didn't this morning. I asked if he could ket the dog out and he got so mad because he was in a hurry and brushed by me bumping me as he did. I was standing with my cain trying to get a botmy meds and he didn't realize that he almosst knocked me over. I started crying and told him I was sorry and that I can't help it that I have to ask for help. He came back by quickly and said he'd see me later and left me standing rheee with no help at all. I felt so hurt! I hate bei g sick!! I hate these diseases! I'm so sorry guys. I just had to let this out. I cant talk to anyone about how I really hurt. My mom and my side of the family worries too much. And my friends and most of my husbands family give me that look like they are sick of it. I think they think I'm a hypercondriac (sp)! I have RA, cervical spinal stenosis, multiple bulging discs, fibromyalgia, IBS ,neuropathy, migraines, and osteoarthritis in my back.I really think that I just want attention. They haven't a clue what I go through daily! Only you all can understand. When I mention that my skin is so tender that I can't even touch my scalp, I get that look like I'm making stuff up. They don't believe in fibromyalgia. I had to hire some one to help me clean my house. That was so hard. I used to be involved in so much at church and with friends and family. Now I can't even keep my house clean! Don't they realize what I used to be is what I wish I still could be??? I'm only 52! I had to retire on a disability retirement plan from a job I had worked for 22 years and absolutely loved! I'm not lazy, I just am not able anymore! I'm sorry guys. it's been a rough month for me. I pray for you each one. Thanks for liatening

Oct 15, 2015 1:00 PM

Sleepingbeauty, I'll soon be 54 and I'm in the same boat, having stopped work in 2010. But I have a very understanding and supportive hubby and most of my family. My rheumy doc educated my hubby very quickly and sternly when he remarked, "well I'll be glad when she gets better and can get off all these meds.". I'd just been dx with Sjogrens, along with all three symptoms you named (except RA) and more. Has your hubby been to any appts with you? I asked mine to please go with me in case I forgot something. He's between completely different since then. Check out the link below. With hugs & a prayer, were here if you need us! 🙏🌼


Oct 15, 2015 2:06 PM

Thanks Flappyslady, I think that he is trying but the more that happens to me, the less support I get. Don't even know if he realizes how little it takes to make me feel okay. A cup of coffee in the swing with one on one time like we used to do. A ride in the country. Ive asked him to go to appts but he won't. He runs his own business so he could, but the one and only appt he went to was when we had to travel to see a specialist about my neck. Dr said that I didn't need surgery yet and that was about it. No going over films or anything. In and out like in 10 minutes. Basically was a waist of time to him. I guess I can understand that. Now I'm going to rheumatologist, neurologist, physiology, physical therapist, neurosurgeon, orthopedic, gastrointestinterology, dentist (a lot more now because of sjogrens too) and of course primary doctor...ugh!!! It looks like I'm just looking for problems to him because he's not hearing what they're saying. When I'm laying in that bed like I was up until noon today, all I can think about is why can't I get better?? I don't want to be like this! I dont!! I miss the old me! I'm doing everything im told but not getting better. I don't understand!

Oct 15, 2015 3:15 PM

My rheumatologist was able to help my hubby understand. Maybe you could talk to your doctor about his lack of understanding and support and see if she'd be willing to talk with him, to help him understand. And ask him to go. Let him know how important it is to you. Our bodies are overwhelmed at times. I don't think your hubby will understand without hearing it from one or more of your doctors.

And maybe this morning he was just having a bad day himself. My hubby has at times grumbled, snapped, or mouthed off under his breath. I know it's not really me he's mad at because I immediately make him focus and find out what's wrong. He's had so much pressure on him with me, and now his mother in a home going insane (stroke). But I grumble and snap too when I'm having a bad day. I apologize and now so does he.

Make a date night to just talk and relax together. Ask him to sit down and talk with you. Let him know you miss sitting in the swing together. Let him know how much you hurt that your health has taken so much from you and him. Let him know you want to feel better, but you need his support for when you don't. Maybe you can't cook a full meal all at once, but try prepping days ahead to put it all together.

Let him read some of your entries and responses. He may be shocked to learn how many of us there are living from one day to the next with chronic pain. None of us are living the life we imagined we would be. And we're all having to adapt to our chronic illnesses just to feel some form of enjoyable, or at least tolerable life. A news story two nights ago said there are 30% of the population living with chronic illnesses. A year ago I would have said, "no way, rediculous!" After joining this community, it's possibly even higher.

When I feel my best and sometimes only so so, I try and walk on our treadmill 10-15 min, 3-4 days a week, I feel better and stronger. I didn't get deconditioned in a few months and I know I'll never be back where I was 6 years ago, but I'm trying to do the best I can. It's proven that being active helps with pain (activity within reason). The key is sweet small goals, steady and slow. Some days I cook a full meal and others it's a"ffy" (fend for yourself) meal.

Months ago I started getting out of bed by 7:30, regardless of how our little I slept the night before, I go to bed between 10-11pm, eat all my meals, do everything on a schedule as if I worked. It's actually helping me sleep better, more restful. Because of my fibro and osteoarthritis I can't just sit or lay still, or I get stiff. But I also can't stand or walk too long for the same reasons, plus my vein reflux and edema. It's a balancing act that's taken me 5 years to come to terms with. I've had to decline letting my granddaughter come overnight because I was having a bad day. Today I'm having sciatica pain, the 4th day this week. But I'm still having a good day, because I woke up this morning without the sciatica, and its not constant.

I wish you the very best in trying to help your hubby understand. (((Hugs))) and I'll be praying for you. Hopefully your hubby will go see your doc and come to understand, and become your biggest supporter to the nay-sayers. 🙏🌼

Oct 15, 2015 4:07 PM

I am so sorry that you are having such a rough day, I agree with everything Flappsy said . Try and make him understand how much it would mean to you for him to go with you to the Dr. Tell him how much that you miss y'all time together, and want to do things together again. Good luck hope you feel better.

Oct 15, 2015 8:25 PM

Thank you so much for the prayers and wonderful advice. You've given me so.ething to be working on as far as setting schedulea and how to treat my day as if it were a work day schedule. I really like that. I will work on talking to my doctors and then persuade my husband to go hopefully.
Thank you both so much. I am into this thing for only 3 yyears now and it has been a whirlwind. One thing after another and then another all the time it seems. I'm so glad to have found this support site. Thank you both and I'm praying for you all as well. That is what we need more than anything, right.

Oct 15, 2015 9:33 PM

You're welcome! We're all here for each other. 🙏🌼

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