It has been a long week. I suppose part of it is ending 2014, not reaching a lot of goals that I had wished for. I know I have made a lot of progress, but I wanted more. Of course we all want more though, and I just need to hang in there in the meantime, and enjoy the ride. Not that I enjoy it, but you know what I mean. 😉
I envisioned myself being able to ski and snowboard this winter, or be able to go and have a vacation. One without worries of feeling ill, one that the possibilities were endless, with little to no limitations.
Over the weekend I had a miscommunication with Dave. He wanted to go up to North Conway to stop at an army barracks store, and I figured I would find something to do up there, even if it was small, like get my jewelry changed out at the piercer, or check out a small outlet store. Long story short, he ended up changing plans, because I did not know how I would be feeling, and I had told him that we needed to go right when I got home from work or I would run out of spoons for the day and if we couldn’t do that, then I would try to stay at work a little longer.
I got home after a little bit of work, he told me it was too late in the day to go. I was really bummed. Not so much that plans were changed, but the feeling that I could not just go do something on my own ate away at me. I think one of the worst emotional tolls that one can have with illness is the frustration and feeling a total loss of independence. I hate the feeling like I NEED him, or anyone else, but I really do. Before all of this, I would just hop in my car and drive out of town, with no particular plans in mind. I would just go and walk around Walmart and see if there was anything I needed, shop around stores, grab lunch. Now I can’t do that, and not being able to do something because he no longer wanted to go really stunk, because I can no longer just hop in my car and go it alone.
Only one who knows who is going through this knows how difficult the tasks even getting ready for the day is daunting and wipes you out. Making plans is very difficult, as you never know how you will feel later on in the day, let alone in the next hour. I had intentions of going, I put on a nice sweater, jeans and boots, washed my hair the night before and straightened it, and actually took some time to do my makeup. I really wanted to go. I feel like even knowing you have the potential to go somewhere does a doozy on you. It sounds ridiculous if you don’t understand it. You just look forward to these types of things because they are a big deal. Small things like being taken to a store are really special. Like I said, ridiculous unless you have been these shoes.
Stress and upsets give me a flare of symptoms, so once I was done my household chores, I slept. And slept. Mid evening, Dave woke me up, and decided to take me to the movies. I felt much better to be able to at least be able to do something with him, and at that point I wouldn’t be able to handle any types of stores still open or go to a restaurant.
We watched the third Hobbit, which to me was the best of the three Hobbit movies. 🙂 My spirits felt a lot better when he offered to do this for me. Going up north will just have to wait for another day.
I had another mini meltdown on New Year’s Eve, trying to get the last end of the year things done. There are some things that a business has to do that day, and cannot be pushed to the following day. I had to do several other things for work, and instantly became overwhelmed.
We had been offered to go out for a little bit for the evening, but I was toast, and so we just watched an SVU marathon until it was time to watch the ball drop. It was nice to have Dave up with me, since he did not have to work the following day.
On a big positive note, I was able to go to the grocery store the other day and do a little bit of shopping. I haven’t been able to do this in quite some time. It is nice to have partial better days, even though it is still a difficult task, feeling lightheaded and overheated, it was a really nice change. Yesterday I was able to do some cleaning: change the bed, sweep, vacuum, wash the kitchen floor, and clean up the kitchen. That is also a nice change. I get really tired afterward, this time with chest pains and Bart feet, but it definitely gives me a sense of accomplishment.
In a few days I will be beginning yet another round of treatment. I am really not sure how I feel about it, since last round went rather poorly with the stomach issues. I will push through either way, and if I need to cut back a day, then that is just what is going to have to happen. I am getting a little antsy not knowing what to expect when I have my pone conference with the PA at my LLMD’s office. A complete shot in the dark. I usually have a general idea of what will happen, but I am in the dark on this one. Whatever happens, I hope it works out and I will be back on the path in the right direction, instead of limping around in circles.
I hope everyone had a good New Year. With my little accomplishments, I really did. Maybe my little accomplishments are a preview of what is to come this year. I am going to be positive and believe that is the case. Have a good weekend!
****** I asked you! After my frustrating day last week, it triggered me to ask some of my fellow Lyme warriors what their limitations are with this illness and what they are no longer able to do. What they miss being able to do the most. I then asked how they cope with it. Here are some of the answers that I have received:
The muscle tremors and constant sleepiness keep me from being able to work. I also get light headed if I do anything strenuous. Have a difficult time driving because I forget were I am at and were I am going. When the muscle spasms start I have a hard time keeping the car on the road.
My thought process- working memory to be exact! Working memory can be very hard to understand and how it works. Whether you understand it or not -coping with. malfunctions in it has no science!! You can be fully aware of when it is malfunctioning but completely unable to correct it or even say what u mean!! People mean well when they say stop, relax, take a deep breath and breathe… AND it will be alright or it will get done!! Over time you find out that this might be a nice idea it may not get done!! Somedays are all about this- trying to cope with this unsettling result!!
I have had a ton of debilitating symptoms but my husband has really pushed me to keep going which I guess can be good and bad. Good because I feel like I may just stop doing things at all. But my symptoms are worsening. I am becoming more fatigued, pain increasing, brain fog and just feeling out of body…not fun. Neuro doc says to ask lyme doc for a leave of absence from work. I feel if I do this I let the disease fully take over… I know that may sound dumb. I also have 4 kids, 3 are still at home and I am the one that “runs” the house. Cooking taking kids to sports and I am social worker that deals with addicts. The doc told me to take a leave because I am not taking my meds like I am supposed to because I do not want to miss work…and I am afraid of them. When I really start taking them my kidneys hurt and I have heart issues.
I suffer from fatigue and severe joint pain so I use a wheel chair, shower chair, have other people open my bottled water etc. I will walk until i absolutely have to use the wheel chair so i push myself in that aspect. What I miss the most is being able to lift my son up into his car seat and drive him to the park and back home, lift him out. Or just him and I going anywhere by ourselves. It’s just too exhausting for me. I miss that independence. But I know it will come again in time and he will get his healthy momma back.