Have you had one of those days where you cannot even get out of bed????? I had one of those days today. I had my alarm set to go off at 7:30am….and when it went off I could barely open my eyes. That is the one thing I hate about rheumatoid arthritis and fibromyalgia….you can feel so bad but yet no one can see your pain!
I laid in bed praying my Fibro fog to ease. I wanted so badly to get up…make it to my wonderful Sunday school class and then enjoy some fellowship after church. But you know my body couldn’t do that….I laid in bed until noon and then I managed to drag myself to my couch. My head ached so badly when I lifted it up off the pillow. My body and brain could not get things in gear. I wanted to read…heck if I’m home why not study. But that didn’t happen either. Instead a day of rest happened.
I literally have been resting all day….sleeping on and off. I think that is what my body needed so desperately. A time out! A day that I just did nothing. I personally hate these type of days because I like to do things. I like to get out of the house….I like to talk to people and socialize. I hate spending the day in my bed, in pain, and with Fibro fog.
But today it happened and you know after a day of being in bed…I can say I feel a little better. I’m still sneezing…still having slight sinus headaches…but my pain has eased some. Our bodies can go go go. Sometimes I try and will myself to work work work ….without my daily nap…and some days with out a break. But you would think I know by now…I shouldn’t do that. In fact I should consciously every day make sure I’m taking care of my body.
It is up to me to care for myself. Does it mean I cannot do everything…no of course not but it does mean I have to be organized. Because I had worked so much during break…I am able to take a night or two…and rest! I have to have those free days/ nights. The last thing I need is stress that I have to push myself because my homework isn’t getting done.
This week will be a busy week. I’m learning my first advanced statistical analysis on Wednesday night. And then Friday I have to be in class again. So yes busy week but at least I got some rest this weekend.
I hope that tonight if you are hurting that your pain eases. I pray that we all have a fantastic week! I would love to hear what you have planned! You will hear about my week no doubt
Also for those of us whose fathers are in Heaven looking down on us. I pray that the tears you shed tonight are dabbed away by a close friend/spouse/partner/lover. The pain doesn’t get any easier…I still miss my daddy as much this Fathers Day as I did 5 years ago. Hugs to you!
Have a fantastic Monday!
Do you ever feel as if everything is going crazy around you?? That’s how I felt this week! I left for San Antonio on Wednesday! We (three of us from my cohort) drove together and had a fun time getting to know each other a bit better than we are afforded during our six hours in class. We arrived there in good time and checked into the Menger Hotel (http://www.mengerhotel.com/). This hotel is very historic and located right next to the Alamo!
My cohort buddy and I immediately got ready to present and then went to find the room we would be using! I practiced a few times as did she…but I will say the waiting for the time to come….that was nerve wracking. I was doing fine until the time came..then my stomach hurt because I was soo nervous..it did not help that the room was filling up either! I think I counted some 20+ people in the audience! Goodness! But thankfully I was successful in presenting my study and I a few asked questions after the presentation was over.
The night was MUCH better after the presentation was OVER!! My cohort mates ended up on the Riverwalk getting some food and enjoying some fun times. We were up bright and early for a continental breakfast at 8a.m. the next morning (EWW!!!) and then it was conference presentations until noon! Then a lunch at the hotel and back to presentations until 5:00p.m. Then another night on the Riverwalk! Friday morning again I was up early for a leadership meeting, my peers elected me to be their representative to this organization, and then the cohort meet for one more conference presentation. We got on the road shortly before noon and I was home by 2:00p.m.
What a whirlwind of a week!! My body was soooo tired from the travel, then the presentation, and then working to keep up with the rest of my cohort! We had a lot of fun but I paid for it. Yesterday I was soooo tired, I just wanted to sleep!
This morning I woke up early again! My hubby was testing for his yellow belt so we had to be up and at KSW school by 9:30a.m.! He spent about 3 hours testing, and broke his first board in this martial arts form! Then we ran errands before I had to come home for a nap! Now I’m back into the homework…..
So yes I want to catch my breath….sit on an island and have a pina colada…LOL! RIGHT!!
Rheumatoid Arthritis and Fibromyalgia don’t let me catch my breath! Homework doesn’t seem to let me catch my breath! BUT overall I’m still making strides so for that I am happy!! Fatigue seems never ending…but I’m fighting back! One step at a time..one breath at a time!
There is always an up and a down in life….I have experienced that over the past three weeks. There might be one day that I feel alright to do something, so I leave my house and go out (like today it was Sunday School). But then after going out…I get body slammed back to square one. By the time I made it home after Sunday School, my throat was soooo sore! If I don’t get any better by tomorrow morning I will make a doctor’s appointment for sometime this week.
At least I made some progress with homework (an UP)!!! I have one small paper (5 pages) due and then I will have everything done for this week. So that is my one to do list for tomorrow. Then I hope to get ahead for next week, my goal is to stay ahead if possible…that way if I get tired or end up really sick I won’t be too far behind.
The ups and downs on this disease …..is very hard! It is very frustrating but yet again it is just part of living with a disease that will be part of my life until someone figures out a cure. That is not to say I don’t believe in miraculous healing (I def do) but sometimes I think we are so fast to want our burden/cross gone out of our life…that we forget to think maybe through that burden/cross we will be blessed. I know it sounds odd…you are like really…my life can be “blessed” because of my Rheumatoid Arthritis or my Fibromyalgia…have you lost your mind! And yes it is a very different way to look at things I guess..but that is my approach. I could spend days praying (which I do) for a cure/to be healed…and then I would probably be frustrated because I would expect it to happen like yesterday. I would walk around going God really why haven’t you healed me yet…I have prayed and prayed??? I can picture God looking at me going…really JJ…why don’t you try and see the GOOD, the BLESSINGS, the FAITH, the WISDOM and the COMPASSION that these diseases/this journey have grown in YOU! Because yes honestly I have grown up so much with these diseases!!! Despite the ups and downs…it seems like I keep on learning…which is a good thing.
So today…despite a down…I am happy that I can see something positive! I am happy that I know there will be another UP soon . I am excited for my classes…it seems like being back in school is exciting and it makes me want to get back into journals etc. so I can start writing studies. I am excited to be working on my computer and reading books on qualitative design. But to prevent another DOWN, I am working hard on BALANCING. Today I did not take a nap and I am thinking that is what let to this current down.
Tip from walkingthrough.com…REST/BALANCE It is HARD especially for someone like me but YOU HAVE TO REST AND TAKE CARE OF YOURSELF!! This I say to myself ….over and over and over and over again!
Signing off..I hope my ramblings are coherent…I’m ready for my nap..wait my bed
Since Thursday I have been struggling with a fever, sinus headache, cold, and sore throat. It is like wow…my body just said “HEY YOU ARE DOING TOOOO MUCH…..TIME TO SLEEP!” Granted I was not happy..this was the week that I had a speaking engagement tonight (was), I have to present my finding on my research to my class via a meeting on Wednesday and then Thursday I fly to Denver! I’m like REALLY THIS WEEK!!! REALLY!!!!
But you know the more I think about it the more I realize ….balance is key! I wasn’t too balanced the last month or so….living, breathing, sleeping statistics…and my research. And my body was like UMMMM yah this is not working for me! You would thing since I have had RA/Fibro/Lupus now for about three years I would KNOW how to balance….but I am still learning…still have not gotten there YET!
Maybe because like many people (or I would think like many people) who have these invisible diseases….we deny it. We say we know what our bodies can handle but then we have one good day! And by one GOOD day…we can actually get up with a little less pain, we can actually do our laundry AND fold our laundry! We can take a shower AND put on our make up! We can go to work for a few hours AND come home and not need a nap! Things like that make OUR days but then we sometimes forget and tend to push on with out a break ….at least I do (did).
The last few weeks I have been pushing on with out my normal nap in the afternoon! Yes I have been on a scheduled nap for a while now…I would go to work…come home, take a nap and THEN do some homework. Which I did ok with for awhile but then I had “SO MUCH TO DO” that I would not take a nap…and just push myself to stay up and do my homework. By the time I did lay down for a nap I was exhausted…beyond my “normal.”
Which that gets me to “my normal” what does that mean??? For me I define my normal as being able to get out of bed, get ready for work, go to work for a few hours a day and get my homework done. Granted this is all done with pain, exhaustion, and fibro fog. So def. not the “normal” that non-fibro/RA people feel. I miss my energy more than anything else…the fatigue/pure exhaustion makes me feel like I have non stop mono and then some! So when I say I about 75% of my “normal” that means a lot to my already exhausted and pain filled body! I am hoping by tomorrow I am up to 90% of my “normal.” Even though it irritates me to have to say “my normal” but honestly I tell myself…acceptance will help me get through this journey easier.
My counseling background screams in my head——acceptance is part of grieving. I have to accept and move on on…but at the same time denial is part of grieving too. Will I ever “get over” my RA/Fibro dx???? I think probably one day….maybe…. Will I still struggle with denial of it….NO DOUBT. Will I struggle to balance….probably but my hope is I get better at it as I mature!
In the US we are going through a month of thankfulness! I am thankful that I live in a country now where I can get treatment. I am thankful that I am able to share my feelings about living with this disease. One of the main reasons I started my blog was to get out what I was feeling….Lord knows keeping all of this inside…ouch! And then I also wanted people to know wow we can live…it is a different life from the “normal” people but we can still live. And we can connect and we can share our lives! To know someone else out there KNOWS too …wow for me that is golden!
So I am thankful I can share my life and know I am not alone!
I am thankful today for my 75% of my “normal” and I hope that tomorrow I can be closer to 100% of my normal! I am looking forward to Thursday! I cannot wait to share pictures of Denver, my FIRST doctoral student conference and meeting with my fellow Barbara Jackson Scholars! The good Lord has blessed me and I cannot wait to see what will happen!
I still struggle to call my RA/Fibro a blessing…maybe one day! But for today…I am thankful I took yesterday and today to rest and let my cup re-fill! Balance… I hope to learn to do it better!
On facebook today I mentioned passing on our knowledge. I was a young newly diagnosed RA’r just a few years ago. I was terrified angry and dealing with a lot of things at that time. Now I am thankful that I have found friends who understand and people (groups) who are there for me too. Granted we are all unique, we react uniquely to our illnesses, we react differently to medication/tx and we HAVE to respect that about each other. I can do this thing and react this way…the next person may not ..and the third might only a little bit. That said here are two AWESOME sites in case you are looking like I was:
http://squeakyj.com/ – amazing group!
http://www.butyoudontlooksick.com/ – love this site!
Several days back into homework I am already wishing I could be on summer (or Christmas) vacation permanently! No one is lying when they tell you that only 2% of the enrolled population finishes earning their doctorate degree..I can see why…because it is mentally exhausting. I say that believing it is that way for “normal” people much less for those of us completing higher education while at the same time battling an invisible illness.
I have managed to complete two chapters (almost) of reading for the homework due this week. I am hoping to get a head start on what is due next week so that way I am not running behind. My physical pain has returned in a fury…apparently not getting enough sleep (duh!) really brings on the pain!
How weird is it to say I’m thrilled to be going into my second semester in the program…but at the same time…I’m already tired and I haven’t begun!
Back to the studies!
My semester has begun!! And yes life has already changed! I forgot the feeling of needing major sleep…or the pressure of needing to read and write even when you have worked all day! The work load is enormous but totally doable when you manage the time, and that is the key! TIME MANAGEMENT! I am working on getting back in the cycle of managing my time and I am thankful that I have a dedicated group of friends who are praying for me and wanting me to be successful!
It is not an easy road but I am loving every minute of it! My body has been ok this week…pain has been HIGH and fatigue has been TERRIBLE but I am still here! Still fighting!
Off to rest and veg about before bed! I have two work days this week! Then that door closes and another on opens! I cannot wait!