Monday, June 18, 2018
I have Fibromyalgia and it sucks! I hate being limited and not knowing from minute to minute how I am going to be feeling. I hate knowing that just being around friends and family and celebrating life is going to take a huge toll on my health and energy levels. I hate having to miss important events because the pain is so great and has me in bed and in tears. I hate not being able to run around with my grandkids. I hate feeling like I am a burden to my family because there is so much that I cannot do now and they have to step in and help me so much. I hate watching my hubby have to work so hard at his job and then come home and do so much around here when he is also in pain...it's not fair to him. 😭 I hate the cost of supplements and medications that I need just to function and the toll it takes on our budget. I hate knowing that at any moment my digestive tract can rebel big time and that I am going to be miserable and housebound. I hate never getting a restful and restorative night's sleep and always feeling exhausted. I hate struggling to find the words or for my thoughts to go out the window mid sentence and looking like a complete idiot in the process. I hate the anxiety and depression and weight gain that come with this. I hate that there are people who don't think this disease/syndrome are real and think those of us who have it are "faking it". I hate that I am unable to work outside the home now and cannot contribute financially to our family. I hate being in pain 24/7 and knowing that it can and does get so much worse during a flare. I hate knowing that this is how I am going to have to live for the rest of my life unless there is a cure found for it.
What brought on this tirade? I've been in a horrible flare all weekend and had to miss one of my hanai daughter's wedding on Saturday because I could not function and had to be in bed most of the time. I was in tears and not even Hydrocodone was doing much to help with the pain levels. We had a bit of a family crisis and baby Steven came up Sunday morning for awhile so Rachel could take care of things. He toddled back and forth between the living room and our bedroom looking for me and saying "Hi!" all the way down the hall. Jeff took charge of taking care of him since I could not. Bradley came and spent Sunday night with us since Isaiah had dental surgery this Monday morning. He is an amazing kid and knew I was not doing well so he was very gentle and calm with me. I was able to have dinner with him and Jeff, rested while they hot tubbed and watched a movie with them before he headed to bed. He was so good about picking up his toys and taking care of a lot of things for himself. I did feel horrible though that I was not able to cuddle with him while we watched the movie (I was hurting too badly) but he did cuddle up with Jeff and I could see that Jeff really enjoyed that.
Today I was able to do a load of laundry and that was it. That alone wore me out and I had to stay in my recliner for most of the day switching to one of the guest beds to rest for 2 hours in the afternoon. Jeff took Bradley back to meet his daddy and then ran all the errands that I was not able to on Friday since I ran out of steam before getting everything done and had to retreat home and to my recliner and bed.
We were making plans for me to go and stay with my parents in July for a week and then ride the train back home so that I could visit with one of my aunts and uncles while they were there also. Knowing now that I am still not fully recovered from the family reunion and then having a busy week last week on top of it, led to this horrible and over the top flare. I am thinking with the hotter weather coming that always makes me flare worse, this could be a disaster waiting to happen health wise. It is killing me knowing that with my uncle's failing health, it might be my last time to see him and I have never met his wife in person before. Family means everything to me and again, this disease is robbing me of my ability to be able to go and see and spend time with so many of them. Yes, being with them fills my "love tank", but I am finding that I am paying a heavy price health wise to do so.
Some hard decisions are going to have to be made here quickly. I know that I am coming into the hot weather that makes me flare pretty badly. I also know that I have been pushing myself far too much so that I can spend as much time as possible with those I love. I'm taking this week to take care of me, rest and hopefully recuperate a bit. I'm going to do the absolute minimum needed to keep our home running. I plan on resting, reading the pile of books I have here from the library, watching movies and sleeping in as much as my body will allow me to. It is a good week to do so since the weather is not going to be great and will be raining a good amount of the time. I already let Heather know that I will not be making Bradley's t-ball game this week. He has 2 more next week and I will try to make one of those. Luckily, she understands and so does Bradley.
This next weekend Jeff and I have carved out the entire time for ourselves. Our plan is to go up to the lake near us, go out to Olive Garden (we have gift cards for there) for a late Father's Day lunch and then, weather permitting, go to the beach and the park there and listen to the free Summer concerts that are usually held there on Sundays. I need to get rested up for that because the last thing I want to do is let my sweet hubby down. He works so hard and deserves a weekend just for him.
So yes, Fibromyalgia sucks and I hate that it not only takes a toll on me, but also on my family. I would not wish this on my worst enemy because NO ONE should have to live this way with no relief or end in sight. I try to make the best of it and focus on all the good in my life, but there are times, like this weekend, where it all just gets to be too much and overwhelms me. Sometimes I just need to get it all out of my system so that I can them take a deep breath and start again with a better attitude again.