I have been diagnosed for 1.5 years. I felt bad a lot longer than that! I am tough. I am a fighter. I push. I have limits though like anyone else. This post is something you might not want to read if you do not want real. This post is covering some things that I struggle with already. What I can't do, I know we are to focus on the positive but I know that I also like the real. The real of it is life does change. In addition to a lot of other things like recovery tune, more rest, meds, and moods I have struggled with things already that do make me nervous of what's to come. Here are some things I am having issues with in no particular order. If I have found an easier way to do things I listed. If you know of things to make these things easier...Help me out! :)
Writing: filling out paperwork, handwriting things is hard to do. I can manage a little but my hand starts burning after a few minutes! Frustrating! I try to ask for paperwork in advance if I know I need to do some or see if I can do it online so I can do it at my own speed.
Coloring: having 2 kids means often they shove a crayon in my hand and ask me to color with them, or draw something for them. Again holding small items like a crayon or marker brings pain! But of course I cannot say no! I do it for a few and then encourage them to do it.
Doing my hair: I have curly hair that frizzes without me doing it. If I wear it curly it is not too hard to do but if I want to straighten it, that is a whole different story! Squeezing the iron kills me! I like it straight but only manage to do it once every 3 to 4 months as it takes me hours to do it, resting my hands in between pieces! Ugh!
Holding hands: this is one of the ones that if I think about it I cry. Others I can do without but it makes me sad when I cannot hold my kids hands for more than little bit. I make sure I do for a few seconds everyday as I am sure I will not be able too one day. I love the feel if their hands in mine. Sad.
Typing for a long period of time makes my wrists and fingers hurt. I used to be able to kick out a blog in one sitting but now have to come back to it after awhile. Not a big deal right now but in the future could be as it is part of every career and job out there!
Holding items (muscles):part of this one surprises me as I thought only my joints should hurt. I have asked my rheum doc and he says all the inflammation weakens the muscles. Holding things like my kids, dogs, purse, groceries even an umbrella make my arms ache. I picked up the coffee pot this morning and it ended up on the counter spilled with a crack in it now :(
Excercising: Now I have never been one to totally excercise, I still got some done walking, swimming, and just playing with the kids. Even walking at the zoo, or mall makes it a long recovery. If I go to the zoo today I know the next 3 or 4 days I cannot do much. I went to the mountains yesterday and could not do anything today. Frustrating! With 2 boys I need to be on the move 24 hours a day!!
Buttons: Of course. No explanation needed
Chopping: I like to cook. Food Prep is a killer! I have a processor to make things easier but if I just need one onion chopped or peppers sliced it is a ton of work to get out and clean. I have been letting my 9 year old who likes to cook use a steak knife to help me out. He enjoys feeling like a big boy using a sharp knife. (supervised of course)
Holding pots and pans is another kitchen issue! Draining things! UGH. A pain to ask for help lifting a stupid pot to drain the grease out!!
These are just a few things that have changed. There are many more as I am sure most of you know I just am bothered by these things right now! Sort of like the shampoo!! :0 I have been exhausted this summer and very busy. Hoping things calm down soon! Day by Day!
I know what you mean about it being longer. For me, it will be four years next month. I was diagnosed shortly after my son was born. Like you, I keep pushing and I keep fighting. My kids rely on me to be their mother and I cannot imagine what their lives would be like if I could not keep pushing and fighting. You have to be positive because they rely on you to set an example and from experience, it can be hard at times. I also struggle with handwriting but I don’t have the same problem with typing so I try to type as often as I can. I have struggle with the other issues as well. It is learning process living with pain and learning how to manage despite it. I hope things calm down for you soon too. I just finished school shopping and I feel like I have hit the finish line.
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