My typical day! Is it typical for anyone else ple | Arthritis Information

Hi guys, just wondered are you at all like me or am I alone in this type of lifestyle, I find it so hard to explain to people when they ask me what do I do with my time as a lot of it is spent idling because of this dreaded disease! Its not all RA but mostly RA related or other comorbidities from getting RA. ( I have RA, OA, osteoporosis, unhealed feet fractures going on 4 years, degenerative disc disease throughout my spine causing sciatica, numbness, burning, terrible back pain, heel spurs, peripheral neuropathy, fibromyalgia, sleep apnoea, high blood pressure, obesity, and pre-diabetes.) I am not looking for sympathy, just can't believe I am writing this about me, it doesn't seem possible. Here goes, I'll try to get it right.

On a typical Monday to Friday, mostly I wake before the kids get ready for school, however the night before if I am able, (sometimes fatigue/ pain or bad tummies make me bedridden) I help them make their lunches, get their clothes and bags ready and their water bottles so that all they need to do in the morning is have breakfast, get washed and dressed, to help their Dad out as I don't have good mornings at all.

Usually I then have breakfast (hubby makes me porridge, good for my cholesterol) after downing some pain relief and take my daily dose of meds with some juice and a cup of tea. Generally I am too stiff and sore to do anything so I usually sit and read or catch up with the news of the day while waiting for the meds to work. Also I can be running (not literally) backwards and forwards to the bathroom to dry reach from reflux and gastroenteritis. Sometimes if my OA is playing up, I can't move my neck or spine very easily so shuffle around like an old lady. After about an hour, sometimes two, I find it easier to move, but I never have any energy, so I try to put on a load of washing if hubby hasn't already done it, I put the dishes away after he has washed them. I put away anything the boys have left out, tidy the beds, (hubby and boys help me change them on the weekends).

Then if I have to go anywhere, this is the time I will usually have to cancel the days arrangements due to too much pain or absolute exhaustion, I often go back to bed and have to sleep. By the time the boys come home I will be dressed and awake on a good day and will give them an afternoon snack, on a really good day, I make cookies/ scones or muffins for them, then we do their homework, I help if they need help. Then they exercise for fun with Dad, soccer or cricket etc, if I feel ok I will go for a ride with them or a swim usually (me on my scooter on the ride). Then we have dinner, lately I haven't had the ability to even get something prepared for dinner, I am so exhausted and it stresses me out to have to think about what we can have let alone provide it and cook it, poor hubby always is the back-up for this, if I can't do it he always does it so I am blessed. I very rarely go out, except Thursdays to get my scripts and injection of MTX so I go to the chemist and maybe do a few little jobs. This takes so much out of me that I am scared to overdo it and hurry home.

I have the blood collectors mainly come to the house, and hubby does all the errands taking the boys to and from school. etc.

When we have Drs visits in Bris or down the coast it is a long long day and babysitters have to be organised, I am finding it harder and harder to plan these things and hubby is taking over here too.

I have written this as I feel so hopeless at times and give myself a hard time saying to myself that I am lazy/a bad mother etc etc, but I tell myself off again when I realise what I used to be like and I never chose to be like this. My house was spotless, my children spotless and well looked after in every way, I am a shell of this former me. Sometimes I sit in my PJ's all day too much pain, no energy to move etc, and I feel really guilty when this happens, my poor hubby, what must he think, I was so athletic, pretty, well groomed etc etc and a hard worker and a good wife, now he sees me like this, he never complains, I don't know what I did to deserve him, nothing is too much for him. Today for example I gave him scripts to do, he took them around in the pouring rain, did shopping, treated the kids etc, came home and I had forgotten to give him the most important script, my painkillers, I was worried to tell him as I had to have them, he did not even blink just said oh don't worry, I didn't think to ask you if they were all in the car, I'll just get them later!!! Then he goes out to fill the shelves at Woolies at night as thats when I need the least help and we need the extra money.

I know I am truly blessed, just wondered, has anyone elses lives changed to this extent and how do you cope? I am always cancelling things and my good friends understand but some people just don't get it. Please tell me I am not the only one who has these problems, I can't believe how life has changed. I must add though, that as long as I have my boys and hubby, my wonderful community and friends, I am the happiest woman in the world. Thanks for listening! Janie. Hi Janie,

I think most of our lives have changed in some way or another. I know mine has. And like you, I have a fantastic husband I'm so very thankful for. He does so much for me, but I always make sure not to take advantage of that and try my best to make sure I do special things for him as well. Even if that's just taking a tea and a nice snack to him while he's working downstairs on his home business after a long day at his full time job.

I won't go into what my typical day is like, but I will say that most days I push myself to just do the things that need to be done. I take breaks when needed and then back to it. There are days though, where I just say to heck with it...I'm not going to even get dressed today. And that's ok ...there's nothing wrong with having days like that once in a while.

I don't have any young children living at home (just Bailey when I babysit her) so I'm lucky there. But I remember when I was first diagnosed with RA, it was difficult at first...our routines had to change. There was no way around it. But we survived

Janie...we have a chronic illness. Of course we're going to have times where things just don't go the way we thought they'd go. Don't be feeling guilty about it. You just do what you can and enjoy your family. Don't ever feel bad for having to cancel plans. Just makes sure you enjoy the times when you can do what's planned.

Kelly

My life is a roller coaster of sorts. I have good days and bad. I live smack in the middle of the drug store and the grocier so that makes it easy for me. The drug store delivers if need be. Seems silly to have your meds delivered when you live next door but sometimes I do have them bring them to the door. Actually it is about half a block down the ally. The grociery store is three quarters of a block down the alley.

It seems I get most of my walking done going to the out patient clinc. They are about three blocks away.

I spend alot more time in bed sitting in front of the computer for various reasons. RA fibro getting infections more often because of the Sjorgrens. I am hoping that is on the way out because the pilocarpin does give me sinus moisture and tears as well as saliva so I hope that comorbidities from the Sjorgrens is on the way out.

I wore a ponytail for a long time because it was easy. I got a hair cut but was afraid to because I can not put it in a ponytail. This cut works for me I can throw a bit of water on the bedhead and go. Crazy to have to worry about fixing your hair but gee whiz sometimes my arms do not raise high enough to fix my hair. My hair is curly so I spay curling spray on it and with this cut it holds for a few days if need be. Sigh of relief! I also bought a bunch of head bands.

I have to worry about shoes. I can not always ware shoes. Arch supports forget it I fall over if I ware them. My feet and ankles are toast. So it seems every little part of life I have to put alot of thought into. I survive and get by but that has alot to do with all of the adjustments I have made to my life.

I did fix my hair and go to the store yesterday even while exausted and flaring. I paid for it later in the day my arms will only let me do so much and then they get mad. So I guess if I do my hair then the dishes do not get done.

I take so much medicine it seems crazy. Well at least I am not screaming. If I am in bad pain then well the meds work after I take them pretty well so that is cool. So now I am noticing the weakness more. I can treat the pain but not the weakness.

I have good days and walk across town and get my sun shine. I even sometimes have good weeks or good months not perfect of course but good is great to me!

Hi Janie,
Your day sounds like mine, I feel so much for you as I can relate to everything you mentioned. The pain is hard to handle but the struggle to do daily trivial tasks drive me crazy! To me, it feels like my whole life, everything & everyone is slipping away, first my job, then my friends, then my mobility, I push hard everyday just to keep my home decent and make meals. I woke up one night at age 34 and could not move my left arm the pain was excruciating within a year I was riddled with damage and pain, since then the disease has taken over robbing me of the simplest tasks, brushing my teeth or hair can make me cry. i get stuck in clothes all the time, and yes I do live in my pj's on really bad days, I feel humiliated when I can't manage a simple movement, hard to believe how active I used to be, people used to tell me how strong and agile I was , called me bubbly!!!
Somedays I just feel like hiding under the covers all day my 74 year old mother is in better shape than I am.
The greatest sorrow is that my kids no longer have the mother that was always able to provide for their needs and could take them places , go for lunch, walks and such. Now i can barely get out of a chair walking is a major ordeal, I feel so old and useless. My daughter is to be married in Aug. and I am so afraid I won't be able to manage the physical aspects of wedding activities and my dream of one day holding a grand-baby, will it ever be possible with this body?
I still have HOPE that I will be able to Live My Life someday, someway, somehow and be a part of the world again.
I care,
DebraJ

Janie, Janie, RA robbs you of the kind of life you want. Never feel guilty for what you can't do. But, it is very inportent that you do everything you can. Never, ever give up on anything. If you can't do it now, try again later. I have had my ups and downs over the last 28 years. I never had a typical day, every day is different and I can't plan ahead, because I never know what tomorrow will be like. some days in PJ's all day on cp. A few days here and there, I'm out walking dog or shopping. Here lately, pushing myself to the limits to take care of sick husband and begaining to feel it.

I feel for you, your so young and small children. Children understand, husbands, they have to be a special breed to help. sounds like you have one of the special ones. You take care, try not to over do, but keep moving, Will be thinking about you.

Thank you so much for posting that, Its helpful sometimes to read what others go through as well. Not that you wish it on them, no way but it is helpful to know you are not alone.

What I often struggle with is the comments from family, not my immediate family (husband and kids) because they understand. But my sister, my mom, etc They don't understand and while for the most part their intentions are good and they dont mean it to be off putting its the way it comes out. Some days I am having a full blown attack of RA and just dont have a wit of energy, thats an all day PJ day and not too much gets accomplished. Sometimes comments will be made like "try to stay well" (as if i would deliberately do this) or "you just over did it" (now why would i do that??) or comments to the effect of "aren't you a little young for that" (when I got a power wheelchair to use when I am having a bad day and go out to the store or when we go out for the day). Its not a huge major issues I realize but none the less when you are dealing with a great deal of pain and zero energy, comments like that really rock me. Also, they just couldn't understand why I was so limited as to what I could do on the WII fit. I have perm nerve damage in my leg, it takes very little to aggravate that leg/nerve and then I am limping and in terrible pain. I know my limits, they don't understand. Have any of you had to deal with what may be well meaning but none the less thoughtless remarks from family?

Probably all of us go through that from time to time. Really as if I need to get angry on top of already feelling bad to begin with. To be quite honest compared to many I don't have much to complain about. I am high functioning. However I push myself to get everything done and I am always fatigued, have aches and get stiff. When people ask me about how I feel I tend to not explain myself properly I guess and always have people (healthy) saying they feel the same way and I feel insulted but I don't say anything. I mean at least they are not taking toxic drugs and still feeling like this.I ware big comfortable boots and people can not see my feet in the winter time. So I just have assume they have no idea. Now in the summer time people tend to understand better. I know that no one wants there feet to look as mine do.

My biggest issue is that my ankles can not bare my weight without pain meds. So when people say you look like you are walking fine. Sure I am. Enbrel, Cymbalta, Lyrica, Vicoden, fishoil, then add pilocarpin for saliva ect. It still hurts to walk and even to sit.

Anyway I am not going to take my boots off to show the eye doctor. LOL Would you not think someone that told you that you had seven cyst in one eye would question how much pain you are in. Well I guess that is why he is an eye doctor and not an RD. LOL

Hi guys... I am so confused. I have had Ra for 6 years and I still don't understand it. Just when I think I do, something happens to make me rethink everything I thought that I knew!! This is a serious question that I really struggle with. Hope someone can help me gain some insight. If you are tremendous pain, have to take daily pain meds,and have all day PJ. days (I have all othe above) Does that not mean that your meds are not working or is this the best you can hope for? after 28 years I'm still wondering. One thing I know is, I never know what to expect. I've been pretty lucky with my meds working on the RA. I can feel almost good at times, where I can do things. I have been able to go back to work twice after taking predisone, Cytoxin or predisone and imuran. They are rough drubs to take. Not all drugs work for everyone and you should feel better after taking meds. if not, i can't see them as being right for you. Right now I'm off my RA drugs, because of cancer treatment. (over now, but they are waiting to restart meds.). Also been a lot of extra work around here. Just about anything can cause RA to act up.Not having a good day here. Darn allergies and I am on Enbrel now but was on nothing so it will no doubt take awhile. Arghhh! I will makwe it. We always do. Just my ankles and shoulder and fingers.

Well I took a bath today. I walked right past the GP to the health food store. I concider this to be insane behavior. I went to the health food store to get things for my brother overseas. I was looking around pretty hard for myself. I just want some relief now not later. I only got something for my cholesterol. the woman telling me something was so good people quit taking thier RA meds. I said no I am not trying to replace my RA meds.

She handed me a pamplet I never read it. Just two more weeks till I get my Lryica raised again I sure could use that now. I may call the neurologist tomorrow and ask if he could raise it now. I may as well be comfortable scince my ankle is slowly growing. I think I will see if someone else can go to the post office for me and mail my brothers package?

Well at least I got all of my PJ's washed today.

Truely I expect more from my medicine. I have to give it time to work. I just have to keep the faith. Hope keeps me going. Maybe I should except this but I do not. LOL I try to keep on trucking even if it is a slow ackward crawl. Then when I get stuck in bed I think good I can use a vacation.

Hi wanting to know, my drugs are definitely working but not enough for me, I can tell as when I accidentally miss them (usually due to amnesia from brain fog) I can certainly feel the difference. Seems to me the drug list of my daily doses is getting longer and longer bu the pain juts gets stronger and stronger sometimes. I said to my GP once, its not worth taking these drugs as they don't do any thing and he said, imagine what you would be like then if you didn't take them? Worth thinking about. went shopping yesterday after RD for about 1 hour, paid for it today, lots of pain and inflammation esp feet and slept in t'il 10am, then had 3 hours from 12pm, awful! Never mind. Janie. I get it. I got it too. Sometimes the best I can do is just about nothing. Hurts to push the buttons on the TV remote for heavens sake !yes Marian, I agree, its too much effort to even talk sometimes!

You guys know my days are pretty rotten right now. I manage to get up every day, get my son off to school, and teach. I know that is more than many can do, and for that I am thankful. I also know that sometimes circumstances make you a bit more able to do some activities. At this point, I have to work. But, I also know that I am going to cause myself more problems in the future. RD has made this clear, but you do what you do.

I admire so many of you. We deal with such a wide range of issues, meds, side effects...but we keep on going. Yay for us!

Good points Janiefx1.My story is in bits and pieces in this thread- everyone has said something here that resonated in me. Like trying to get this disease figured out- I guess if someone that's had it for 6 years is still befuddled then I'm wasting my time trying to understand it. I'm with you all on the meds too- I've tried to get used to them and it does happen over time but I'm constantly aware that I'm a bonehead now.

And the pain- recently I've had trouble typing on the computer. I'm asking my gf to do more and more and she's great, but with regularity I'm realizing there's something else I can't do now and I need to start asking for help with and every time that realization is kind of depressing. It's been important for me to accentuate the positive, eliminate the negative and don't mess with Mr. In Between.

And yeah I expect things of people too. It's been a learning experience. Despite it all I'm fairly chipper but I can be moody. I try to take responsibility for my actions at the time though.

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