I have to get my list ready for my disability hearing in front of the Administrative Law Judge for Monday on how my lifestyle has changed since I became disabled. I have been putting this off because I try not to focus on what I can’t do, but the things that I can do. It is not emotionally or physically healthy to focus on these things but this is part of the process so I have to do it. It is a different mindset when applying for disability.
I wanted to share my list on this blog because for those who are healthy reading this, you will see how the little things that “normal”, healthy people take for granted everyday are a struggle for those of us who are health challenged. Although I have been suffering with CFS for 15 years, up until the birth of my son 4 1/2 years ago, I was still able to take care of my own house and do other errands on a regular basis.
I am sure that when some people read my list I will be viewed as lazy but nothing could be further from the truth. Those who suffer along with me will be able to relate and for those who can’t relate, all I can say to you is never judge unless you are in that situation yourself.
I used to be extremely anal and everything had to be just perfect. I still like a nice house and even though I can only clean about once a month, my husband and son are very well trained and our house is always picked up after. Any messes that are made are not left go until cleaning week. To look at our house, you would never know that it only gets a good cleaning once a month.
I have to decide every morning when I get up:
1. Do I have the energy to make the bed, get a shower, etc. this morning?
2. If I do all of these things, am I going to have any energy left over to spend time with my son?
3. If I go away today or participate in an activity today, how many days will this set me back and put me on bed rest, or how many days before I plan to go away or attend an activity will I have to be on total rest so that I can go?
These are just a few of the many things that I have to determine each and every day. Every little thing I do I have to really think about and decide what I can fit into my limits.
- Went from cleaning my house once a week (cleaning the entire house in one day) to now cleaning once a month – only able to clean one room per day – OR my mother will have to do it for me. It takes me an entire week now to clean my house.
- Spring cleaning – I used to spring clean my own house, wash down the walls, windows, etc. Now I have to hire someone to come in and do it.
- The beds get made about every other day because some days it will take every bit of energy I have to make the bed and I am unable to do anything else the rest of the day.
- I can no longer cook every day, but have to cook one night a week and make enough for all week. If I am unable to even do that, then I use my crockpot.
- I had to buy a timer (we live in an old house, which still has the original stove and the timers no longer work) because I would burn so much food because I would put something on the stove or oven and forget that I was even cooking.
- I used to do all laundry in one day – washing, folding and putting away. Now, I start laundry on Monday and get done on Saturday. I can only do one load a day.
- I used to sit down every Friday night and pay all the bills for the next week or so. Now, I have to pay them by due date and can only pay one or two per sitting. Why? Because of the CFS my concentration level is very minimal and when I became very ill, I began making very large errors in our checkbook, which resulted in several overdraft fees. I NEVER in my life had overdraft fees until I became very ill. Even using a calculator, I would mess up terribly.
- I had to start doing almost all banking transactions from home and seldom make trips to the actual bank.
- I started having anxiety attacks and if the Wal-mart parking lot is too full when we pull in, I have had to tell my husband I can’t go in and start having anxiety attacks.
- I rarely attend social events anymore and I miss a lot of family functions, especially on holidays. The holidays takes a lot out of me and my husband and son attend many holiday functions without me.
- I gave up almost all of my hobbies and can no longer enjoy any of them for any length of time. I love to scrapbook, but am unable to sit and concentrate on that for very long periods of time, so I accomplish very little.
- I used to sing at weddings, sing at Karaoke nights, took dancing lessons, was in the community chorus – now the only place I get to sing is in the shower! Dancing? I tried dancing one time since my health deteriorated and I ended up in bed for two days.