My year was rather uneventful last year...for the most part. Health wise I had ups and downs but don't we all with fibromyalgia, chronic fatigue/Myalgic Encephalomyelitis (FM, CFS/ME), etc. I had a little more issues with CFS and subsequently a little more apathy. I think you what I mean... its when you don't feel bad but feel so tired that to just get out of the chair to go lay down is a major issue. It takes too much effort to do art, too much effort to blog on your page, too much effort to order take out much less cook a meal... I talked my feelings of inadequacies over with my therapist...love the lady, if you don't have a talk therapist I strongly suggest you get one!..and she asked me if I was trying to be someone else? Someone who is younger, healthier, and able to do what they want? Am I setting the bar way too high and every time I try to jump and make the bar do I fail? Do I beat myself up every time I don't succeed? YES I DO! Sometimes it is hard with our disorders to determine what is "normal," what is "abnormal," and when we are just reacting to what the society around us is dictating what they think we should be like. My talk therapist helps me determine what is me and what is the ubiquitous them!
Back to the issues of this year... I made several long distance car trips this year going to events and camping with my daughter, her husband, and friends. I love to travel to see and do new things. Despite my 'issues' I keep pushing myself to do more! Sound familiar! It takes me a good two weeks of down time after a road trip to bounce back and be my 'normal' again. Was it worth it? I think so. I have learned that the pushing is the only way I will ever get anything done anymore but it is tough for me to know when it is a gentle push and when I am really over pushing. I have had to learn to put limits on what I can and can't do...things that are already limited by my physical disabilities! One thing I have learned that works for me is frequent short naps, going to bed earlier and getting up later and not apologizing when I do it. I sleep in the car with feet kicked up and eye mask on when possible. You do what you have to do!
A picture from one of the trips! We went to Pennsic Wars in July...read about it here!
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| Julie, me, and Heather my daughter |
I was seen in the ER twice this year! Not by choice but because my doctor was out of his office and not working at the time. Both times I encountered this brick wall called FM, CFS/ME that is documented in my chart! I get so tired of the looks that say, "okay, I know you are here for pain meds!" or the head nodding while you are telling them your issues...of course their thought are off to Aruba or what they are having for lunch not really what it going on with you! Anyone know the look and attitude. Okay back to the story! The first visit was in September...I was have excruciating left flank pain and pain on urinating with blood!!! I went in and after all the BS above was take care of and labs came back they were very solicitous and told me that they thought I had passed a kidney stone and it caused an infection....OKAY asshats! Score one for me! sorry but it feels good for something to show up and not have a single thing in lab or CT that proves anything wait...
Does that make me mentally ill to be happy I had proof I had something physically wrong with me?
The second visit was on Christmas day and I fell hurting my left knee. Talk about pain! I woke up really happy and feeling pretty good because my son and his family was in town with their children for the first time in six years. They are military and get about a lot and with young children it is just a problem to travel anyway... They were staying at my daughters house and we were leaving to go there when I fell and hurt my left knee...well you know Grandma can't disappoint the grand babies so we went on and watched them open gifts, ate breakfast etc and my knee kept hurting and swelling so my daughter hauled me off to the ER. We actually got to the back to the exam rooms fairly quickly, got the Xray done and was told it was just a soft tissue issue...poet...and they didn't see any broken bones but I should follow up with a orthopedic doctor to make sure.
Fast forward 2 weeks...yes two whole weeks before I could get in to see an orthopedic doctor...but I was actually seen by his PA Mike not the doctor! Anyway 2 weeks later I am seen by Mike who tells me he has looked at the xray but seeing the swelling in my knee that I should probably have an MRI to make sure it was just a soft tissue issue...I like the rhyme! I got in to the MRI about 2 hours later but had to wait another week to go back to the office to get the results. Okay refresher December 25 fell, January 7 office visit and MRI, January 14 back to the office to get results... seems really wrong some how to me to let an old lady sit in pain with a horribly swollen knee and leg. I have to hobble around on a walker or a cane and still have loads of issues with balance. I digress again...FM with foggy brain and random thought patterns. ANYWAY! I have a broken knee...not just fractured in one place but multiple fractures going different directions! Great news after walking around on it 21 days! Mike was very apologetic and told me that he wished they had known sooner but that there wasn't much they could do about it now. I must have looked really pissy cause he started asking me what I was doing for pain, walking etc and gave me a few more hints of things I could do! I am to make an appointment for 5 weeks and go back and also make an appointment with a bone clinic specialist to find out why a short distance fall broke the bone.
I also had an appointment with the rheumatologist/FM doctor this week. No lab work, no xrays, no nothing. Told me to keep doing what I am doing and come back in a year. WAIT! Does this mean I am no longer disabled? no longer need a doctor? WHAT the hell does this mean? I actually asked her that I was so po'd about doctors and visits etc at this point. No viable response.
I am still participating in the drug trial for the FM drug. I don't think I am on any drug because I am not feeling any different fibro pain wise. If I am on the drug then it is at a lower dose and not enough to affect my pain levels but I think it is effecting my sleep. The first screen capture is from my FitBit sleep record before I started the study. It shows how much I am sleeping and how well I am sleeping. As you can see 9 hours in bed netted me 6 hr and 21 minutes of sleep.
This one is one take from yesterday and it shows I am sleeping a lot better. Now I have to weigh in that I did take some ibuprofen prior to going to bed. Another thing I have found is the later that I go to bed the better I seem to sleep in the long run!
Well I think that this is enough for one post...maybe a little more then enough but I had to get caught up! Have a great month!
