Every day frustration

Today I was at radiology having my mammogram, and the sides of my head hurt so bad.. It was my head band. I was so annoyed, I hate having my hair in my face because it drives me crazy when it touches my skin, I hate a pony tail because it pulls, barrettes frustrate me because I cannot lean my head against anything without without it hurting and I cant wear a headband because it pinches the side of my head. It got me thinking about the little things, we focus so much on symptom that we do not think about how much we adjust our lives in ways that other people could not even fathom. So I am going to try to make a list of everyday things that affect me everyday. I will probably add things later because I am sure I will think of more later. I am going to start with typing because already my wrist hurt.

1.) Typing, any office job requires typing and holding your arms in the same position, and your wrist get sore very quickly, neck gets cramped from trying to hold it in one position, back gets sore from being stuck in the same position.

2.) Talking on the phone. I cant wear a head set because it hurts my ears, I do not like loud noises and it is too close for comfort for me, not to mention then we are back to the head and the discomfort of having the headset around my head. Holding the handset arm gets cramped, neck gets cramped and ear gets sore from having noise directly in ear. So I avoid talking on the phone, pretty hard when I work in a call center.

3.) Loud noises, or lots of different noises hurts my ears or causes confusion. Again really hard on me because I work in a call center and I cannot focus on my call because of all the noise around me from the other people on the phone. Bars, have loud music, riding in a car with someone who plays the music loud. I have actually laid in bed and cried because the neighbors music to loud for me to handle and I felt trapped.

3.) Standing. I cannot stand for more then ten minutes before my legs start to cramp up. Walking is just as bad, my hips start hurt my knees hurt. Just walking my dog down the street and back is a chore. Going to the mall with a friend is a blessing and I am going to pay for it for days.

4.) Memory. in the last week I have gone to the doctor on the wrong day and also went to a different appointment at the wrong clinic. I have to write everything down. If I remember to write it down, then remember where I wrote it down. I work downtown and take the bus, except if I have a doctors appointment. Depending on the time of day depends on if I pay to park or I park at a park and ride. I cant remember where I park my car. Which parking ramp, if I took the bus, if I need to park at work because I have to go to the doctor.

5.) Grocery Shopping. ha there is no such thing as just running to the store on a whim there is planning involved. A list a plan on what side of the store to start at, an assessment of if I am having a good day or a bad day and can I get everything I need. Can I go by myself or do I need someone to come with me just in case I cant do it. Is the noise in the store going to be too much for me today.

6.) Making plans. I do not make pans because I do not want to break them. I am always scared I am going to be sick or having a bad day. Most of the time I know that the plans my friends want to do are not something I will be able to handle, There is no cocktail hour after work or a night of dancing. I cannot drink because of my meds and even if I could I would feel 100 times worse than I usually do the next day. the noise in a bar between the music and all of the different conversations causes me confusion and puts me in a panic because it is too much stimulation, similar to being at work in the call center but 50 times worse. I would love to go to the zoo for the day but only if it is warm, but not too warm, and if I can take lots of breaks and with someone who doesnt walk to fast, and I am having a really good day. I might have to sleep most of the day the next day but it would be worth it.

7.) Body temperature, Cold weather I get so cold that I cannot get warm I am chilled to the bone. I have to take a hot bath just to warm up sometimes more than once a day. Living somewhere without a bathtub is not an option for me. Night sweats, I go to bed freezing but wake up completely soaked in the middle of the night.

8.) Exercise. I want to exercise, I want to lose weight, I want to be beautiful again. I cant do it I have tried everything and it hurts too much it puts me in so much pain I am out for days. Especially anything that has to do with my arms or that might effect my neck or shoulders.

9.) Working, Trying to make it thru the day is a nightmare. hopefully I took enough sleeping pills to sleep thru the night so that I can function in the morning, then around 10 am I crash I am so tired and my neck hurts, my head hurts, my back is cramping up. By the time I get home I am so exhausted I have to take a nap before I can tackle making dinner.

10.) Clothing. Bras.. The most horrible thing in the world, these things hit all of my sore spots in my back, they pull on my shoulders cramping up my neck causing way more stress on my neck and shoulders than I need. Not acceptable to go to work without a bra, especially when you are as large breasted as me. Jeans hurt my skin and give me a rash around my waste. Most materials that are not soft make me itchy and drive me crazy, along with tags!

11.) Medications. They are supposed to fix everything right. I take a handful every night. Most with scary side effect, They either do not work or they make things worse, yet doctors get upset if you do not take them because I am not following the treatment plan.

12.) Doctors appointments. I cant keep up, trying to schedule them around work or lately work around doctors appointments causes me more stress then I can handle. The more stress I have the more pain. I feel like a human pin cushion. There is no such thing as being afraid of small spaces, I have had more MRI’s than I can count. Needs ha I can probably give my self an IV better than most of these Amateurs I have had it done so much I have to tell them how to do it. Not that I ever plan on sticking anything in my veins.

13.) Pride and Shame. I have neither left, I have stripped down in so many doctors it doesnt even faze me anymore. I have cried so much in front of my co-workers in pain and frustration it is just a normal part of my life. I am a shell of a person just trying to survive and make it thru the day.

14.) Goals and ambition. I had goals of finishing school and having children and white picket fences. Lately my goal is to make it thru the day and get the laundry done without falling down the stairs. Goals become small daily ones instead of lifetime plans.

15. ) Vacations. I am not sure what a vacation is anymore I have to save all of my time for being sick and doctors appointments. Always scared I will run out and lose my job and my insurance to pay for all of those doctors appointments.

16.) Sleep. I am not sure if I ever sleep even though I feel like all I ever do is sleep. No matter what I am always exhausted and feel like I have been going for days without a break. It is impossible for me to fall asleep at night, and to stay awake during the day.

17.) Obsession… Everyday I scour the internet for information, hoping to find something, anything that will make me feel better. I have given up so many things because that is what people say cause my pain. It is all crap! So on to the next someday one of these things will work and give me life back.

18.) Self worth. I have talked about this before. I am my biggest critic. I want to be so much more. I want to do more, I want to go go go and I cant. I am sad, I am angry, and I blame myself because I do not know who else to blame. I feel like I let down my co-workers when I am not there, or I am having a bad day and do not do my share. I am going to the doctor all the time. I do not deserve my job because I cannot do my job most of the time. I do not deserve friends because I cannot do things with them. I do not deserve my family because I do not go to functions and if I do I am ready to leave before I get there, or I spend most of the time sleeping in a guest room because I am exhausted from the trip to get there.

19.) Trust. Is something that does not come easy because I have trusted people with my pain thinking it would help them understand me, Tried to explain it to them tried to help them see why I cry, how strong I really am. How much effort I put into life and my relationships and doing my job the best I can. How I over compensate at every turn that I can, only to be judged or for that person to start avoiding me because they do not understand. It is hard to pour your heart out to someone and have them reject you.

20.) Weather. The weather has a serious effect on my life if it is raining hard I am done. Stiff, sore, cramping, and a migraine. Winter is miserable and I can barely leave the house except to get to work and that is because I have to. I am so scared of falling because I do not have good balance, my legs are weak, and I get dizzy a lot. If I fall I am going to mess up my hips or my knees or my neck. All of these things are going to lay me up for who knows how long. There is no quick bounce back like most people.

21.) Car rides. Getting in and out of a low car is a nightmare, being in the car for a long time is horrible, If I am a passenger I always have to have a blanket and a pillow with me to make sure I can stay warm enough and so that my neck doesnt cramp up too much.

22.) Sleeping away from home. This is really hard, there is no going to a friends or family members and just deciding to stay the night because you are too tired to go home. Planning has to be involved, I have to have my own pillows so that my neck does not get completely messed up for days, I need to make sure I have my medications.. Especially sleeping pills. Ear plugs in case there are noises that will keep me awake, a fan to keep noises away, and my soft blanket because I cant sleep with anything rough touching my skin.

23.) Eating. Eating is sometimes a nightmare because lots of foods give me negative side effects just like medications.

Oh Squeakers, so sorry that so many things make you feel so bad! I can relate to so very many of these! Even though I just had about 5 inches cut off my hair, I can still get it in a pony tail, and it still gives me a headache!

I would add

Sitting in waiting room chairs, bending, walking long distances!

Gotta run, thanks for posting this! We can certainly relate!

Love and hugs,

SK

Thanks SK! I wasnt having a pitty party believe it or not. I just know how many times we go to the doctor and we focus on head ache, sinus pressure, neck pain. This does not give a picture of our symptoms. When people ask us about it there are no words to describe it! I wanted those words. Those expectations to be there for people. <3 Maybe this is a stepping stone for me to realize ok these are the things I do differently and how can I do them better?

Squeakers, I just read your post and could relate to a lot of what you wrote. I use a chiropractor to adjust my head/neck when it gets to hurting bad and that helps. I have had to wear my hair short because of headaches with ponytails and such. Hear lately noise has become a problem. I am blessed at work because I'm the only one in the office. I set the tone for my day at work, radio or not. The bus is another story. I don't do real well on long trips now and have a van because its so difficult to get in and out of cars. My husband does the grocery shopping. That helps so much. I only do housework when I can manage it. Ususally one room a day is about all I can handle. Have your been checked to see if you have sleep apena. I use a sleep machine and it has helped me a lot. My biggest thing is putting my faith and trust in God. That is truly how I am able to work and do the few things that I can. I pray things will get better for you. Gentle Hugs Sue