Christmas. The most joyful and exciting time of year......... for some. Those of us with RA it can so disappointing and more stressful that can be imagined. Family and friends are usually the cause of the stress and disappointment outside of what pain has taken away from us. For me, I used to love Christmas. I used to love decorating for the holidays, shopping long hours, baking and cooking, spending hours wrapping gifts. Not anymore. Family. Lets begin there. They do not understand and will not understand this journey at all. No matter their intentions. I have heard, lose weight, it will cure your arthritis. NOPE! The one misconception with this disease is the word arthritis. This is NOT your grandmother's arthritis! Family will say the most hurtful things and then do the one thing we hate the most, ignore us and our need for assistance at the worst of times. This disease was named wrong. It is not arthritis in any way. I don't need advice nor some lame so called cure you heard about. I hear it all as do others.
Christmas usually ends in great pain and great disappointment. This year......... great pain was the worst for me. Disappointment in not being able to be normal and behave normal. What do I mean?
1. Stairs. Not being able to bound up and down stairs without so much as a thought or blink of an eye.
2. Having energy of a 4 year old to stay and linger all hours and party, drink and be merry.
3. To have a Mary Poppins attitude and float through pain as if it doesn't exist.
Stairs are the worst. My ankles, my knees, and leg joints are weak from RA and I have been instructed by a surgeon and physician to not do stairs for risk of fall and injury. I have explained this to family and friends and it falls on deaf ears. They don't understand. I hate going to family gettogethers because each home in the family has stairs you have to navigate to be apart of the festivities. So, picture one taking each stair one at a time and almost teetering on falling several times and taking several minutes to walk them. All the time doing this being watched by all without offer of assistance. Awful. The looks I get are terrible. They do not understand. energy is non existent.
Family thinks they are helping with their lame advice on a subject they know nothing about. Sad. But something we have to live with .
I will have more on family in future blogs and friends as well.
I now dread the holidays. I don't want to decorate because it takes too much of my energy and when I do I pay for that time I spent with great pain.I have been bedridden with this disease several times. I dread Christmas because I cannot enjoy it as I used to. I used to love shopping for hours on end for gifts, baking supplies, decorations, etc. Now I am good for maybe an hour in the store on my feet and that's it. Sometimes I don't even have that much time.
If you are reading this and do not have RA and are healthy....... please! Anyone you know in your life with this awful disease please be there for them and do not judge. Become educated. Learn about the disease and what it's doing to them and how you can help them when they need it. Help is something I have asked for and not received. I am not suppose to do stairs. , my laundry is in the basement and I have repeated so many times that I am not suppose to the stairs to do the laundry and not one friend, family member, neighbor ever comes over even once a week to help get it done to keep me safer. I cringe every time I have to do laundry because of the risk. If I fall which I have 4 times, I could be severely hurt or injured. But, no one thinks about that fact. I do what I can. Little things that we take for granted in our everyday lives, I have to plan for and think about and fret over.
Christmas was ok this year. It could have been much better. My children had a great Christmas which makes it good for me. That was my goal, for them to have a good holiday. They deserve it.