Hey ladies
Just wanted to give you an update on what has been going on here. Curtis's funeral went very well beautiful service they gave everyone the chance to share a memory or something about or for him and it just showed how much he was loved and how funny he was, it wasnt morbid or depressing everyone was laughing more than they cried.
Things are still busy we had our church retreat this past weekend and it was wonderful I was able to preticipate in a few of the activities and stayed pretty pain free. (I did go on the snow tubes and ended up being run over and have a good size bruise and a black eye, but its a price I was glad to pay) the lodge was absolute gorgeous and it was great to be able to take a break from everything and just relax with friends for a weekend.
The pain isnt too bad I am having to catch up to normal and am pretty uncomfertable but I'm having a good week without the stress to make it worse.
How is everyone doing?
Thank you for all your thoughts for me. Hope everyone is doing well and please know I am thinking and praying for you all
DisneysPixie
So glad to hear you are managing with all the comotion in your life right now.
I'm sure that going to the retreat was a great relief! I have always found that grief is a tricky thing, comming back on/off even when I thought I found "closure" whatever that means.
I'm so sorry I have been MIA and have not answered your origonal question. I have been really struggling ever since our WDW trip last May but the weeks since Thanksgiving have been really hard. I cannot get into a schedule because of this darn weather
. Over the last 22 days of school my kids have had only had a full day of school 3 days
The rest have been mostly two hour delays. I'm so wiped becasue it only gives me 4 hours of downtime. I really need two to rest, two to sleep or rest some more
and two to try and get something like dinner done. Since I only average 2-4hrs a day where I truely "function" and I spend 9hrs a week driving kids to shcool , activities and waiting at activities I just dont have enough "energy dollers" in the day
. My world has become very small. hense no Dis posts and only two calls to my parents in two months. I know this cycle will pass and I cant wait for spring!
This leads me to your question. My best advise is know your body and its cycles. For fatigue pacing is really the key. When I go on vacation I have to rest for several weeks, change how I take my meds so that for one week I an my optimal self. Right now I have to deem some days "rest days" so that I can drive my kids to activities later that night or the following day. For you you may want to make a list of what you need and want to do and think about how many "energy dollars" each thing takes and then take a minute to close your eyes and think about how you really feel. How many energy dollars do you really have? Then mix some must dos with some fun dos and let the rest slide for another day. Managing FMs in general is a little more trickey.
My main symptoms are migraines, fatigue and pain with about two dozen less frequent symptoms that range form annoying (ringing in my ears) to scary (inability to speak-aphasia). The major ones tend to go in 6 month to a year cycles where one is more dominant and the other two while still present are not the worst of my problems. Right now my visal migraine symptoms are the worst, followed by fatigue and pain. Knowing that this is a cycle lets me emotionaly deal better with the symptoms because I know at somepoint whatever is driving me really crazy will get better for awhile. In a weird way it helps knowing it will get better even if replaced with something else. This also lets me guage just how much downtime I need to function. I can fight through pain much better than I can deal with visual distortions and fatigue..well lets just say I havent found a good way to ignore and just push through fatigue. I have found the the biggest thing to managing my FMS is knowing my bodys limits and managing my activities around those limits. This may take you writing a journal for a few months or a year to really see what works for you. I stopped because I found focusing so much on my syptoms made me feel sick but it was nesessary to see "patterns" in my disease.
Next I would look at all the meds, suppliments and treatments out there and decide with your parents what you can an cannot tollerate. If you can afford it really consider alternative treatments that are proven to be helpful to cancer,ms and other auto immune diseases. Meditation and visualization take alot of practice but I have found them essential to dealing with the pain and stess. Sound meditaion is great if you get creeped out by tapes with talking. Aroma therapy is surprisingly helpful.
You should not go to appointments alone becasue you will need back up when you are tired or forgetful. Since you are still in high school I assume your Mom or Dad go with you now. As you get older make sure they continue to go with you or bring a friend/boyfirend. Do not get intimidated by the DRs. They are people who can be good or bad. Smart or just adequit. Just becasue they have been to school longer than you does not mean they know your body better than you so find a Dr who can work as a team with you. This may be hard giving your age but it is important. FMS is a weird unpredictable disease. That patients and drs need to work on together.
Finally attitude is really the biggest thing. Prepare for the worst and hope for the best. I purposly plan for my worst possible senario but assume I will be fine. I am able to be much more active yet go with the flow of my disease. It allows me to force my self to go out or try something I'm not sure I can do on a given day knowing that I can stop, go home etc if I need to. FMs is like a rollercoster and if you are prepared for that you are much less likely to get depresssed. While many of us have depression from a biological base I would say most get depressed from a combination of being sick, overwhelmed and the circumstances of not being believed and/or not being realistic in what we can do at any givin moment. This leads to what I would refer to as situational depresssion. All of us get depressed or frustrated for a few days or we would not be normal but when we let the situation completely take over in our minds then a mjor depression is more liekly to occure. It is very hard to deal with FMS when depressed so you really need to take care of your stress and your outlook to avoid this if you can
Finally if you go into any type of remission do anything and everthing you normally cant do. Maybe just maybe it will go away and never come back!
I know there will a treatment in my lifetime and certainly in yours so assume that and do not let FMS hold you back. If there is something you want to do ask those of us who have had the disease how we would manage FMS and whatever it is you want to do like college or a big trip etc then be creative and patient with yourself. You will find a way manage it.
Hope this was helpful and not a great big ramble on my part!
Sending Pain free vibes
and pixie dust to all
hopefully we will all feel better as the sun comes out.
The strep triggered her migraines which she hasnt had in several years. I only found out when I noticed that she was having great dificulty watching tv because she had lost part of her vision
) Anyway a friend my have atime share available but for now we are planning a week in Ocean city MD as the kids want to see the beach. We are also trying to get up the cash or a deposit for a 2012 disney cruise..they are booking now!
Disney is a bit crazy on this pre planning stuff!
We were best friends when I was about 16 or so then lost touch because she got married really young. NOW she lives in FLORIDA!!!! Let's just say I hate her 
I also take a multivitamin, a vit D with calcium and magnesium, and a glucosomine with chondroitin tablet every day. Hope that helps. 
