[Lindylou702]

Hi, everyone, haven't written anything for some time, but have been coping with my first year of diagnosed lupus, and am trying to adjust my life. I am 62 years old, and my husband is retired because of heart problems. I was wondering if any of you around my age could give an idea of how your day to day living goes, and how to handle the big changes.........you know,being tired and painful joints! I do have some neuropathy in my left hand......this site has been a godsend to me ......no one really wants to hear about this diseasein my family. I am on thyroid,high blood pressure,depression,andjoint pain medication...Thank you for your input........

 

[sadieone]

Hi Lindy,

Sorry to hear you have this terrible disease. It takes some getting used too like any chronic illness.
I am 45 and I haven't worked in 6yrs. Just last year i was diagnosed with lupus and it got so bad i couldnt walk. Now with the help of a couple of good doctors and understanding husband and a boat load of meds i'm walking around and doing what i can, day to day.

To answer your question about day to day living, I do what i can. Wash dishes and that hurts my back so i usually sit after that. I usually sit after doing any chore or activity as it wears me out easily.

I've bugged the docs enough so they have given me the right kind of meds (non narcotics) to keep my pain level down to a 3 and that's only if i'm not flaring.

So, I've gotten to the point where i have to do something productive all the time.

I find inventive ways of doing things, ie. I sit in a chair with wheels while i sweep or mop my floor. I took up crocheting so i'll listen to the Bible on my computer while i crochet when i'm really tired or just take a nap for a few hours.

I have 2 dogs so i'm constantly cleaning, dusting vaccuuming etc. But they are my protectors and my cuddle buddies. I don't leave the house much as it takes a lot out of me just to shower and get dressed to go somewhere most days, never mind getting there and do anything. Thats something i have to prepare myself for regularly.

I just take one day at a time and do what i can. If i can't then so be it. I'll plan to sit and surf the net or crochet and listen to the Bible or sleep til am rested enough to do something.
But I don't worry about it and i don't beat myself up about it.

I walked on the treadmill for 30mins yesterday at the slowest speed. Cuz even with my 2 slipped disks my fibromyalgia, leaning towards diabetes and long time high blood pressure, joint pain and anti depressants,, the docs say i have to exercise. I love my doc,, but times like these i just want to grab him and shake him! So i walk on my treadmill as much as i can.

Yesterday I went around the house and threw everything away that we had not used in 6mos - year. Little things like that can make a big difference.

Our quality of life has changed drastically and we have no control over that. The only control we have is, what we do with, what is left with our lives. I plan on making it interesting and fulfilling somehow,, i'm just getting used to walking now,, so it will take me a minute,,, but i'll get there.

Good Luck

 

[Lindylou702]

Hi, Sadie, thank you so much for answering me.......it helps so much for someone else's thoughts! My days are pretty much like yours one of the hardest things for me to do is vacuuming so I usually sit on a chair and vacuum in a circle....then move the chair,etc. I have a black cocker spaniel that keeps me company,and he really is a sweety. two of my friends have stuck with me, and try to understand when I just don't have the energy to go out. but I do feel guilty...I can't do things fast anymore....it is so frustrating!! This may seem like an odd question, but what do you wear around the house that is comfortable, and isn't binding when you have to do something.....I just hurt so much sometimes that I am tempted to stay in my nightgown. I read quite a bit but need to be productive too. Please reply everyone and give me some of your thoughts.....I am having trouble with depression....Lindy

 

[sadieone]

Hey Lindy,

I usually wear baggy sweat pants and a sleeveless top with a zip up cotton sweat jacket with a hood.

Now this is very important because,, when i wake up in the mornings i'm freezing,, because of the night sweats so i'm usually wet in the a.m. so i change my shirt to a sleevless one so if i get hot flashes during the day i can cool off quickly.

But back to the hooded sweat jacket......... since i'm freezin in the a.m. even with heater on and down comforter and hubby keeping me warm,, i find it very helpful to put the hooded jacket on all zipped up and hood on while making coffee and my hubbies lunch.

As the day goes by i'll put the jacket on and off but eventually i end up with it back on.

In summary, I wear what is comfortable and what works. .

Send me an email,, we can chat on msn messanger during the day.

 

[macfamily53]

Dear lindy and Sadie

I just thought i would put my input a little bit.I am so sorry lindy that you do have lupus but sure glad you got a diagnosis also so that the doctors can figure out what meds you need to make you comfortable as you can be anyway.

I have had for almost a year dealing with exhaustion from the thyroid but did not know what it was until recently.I guess what i am trying to say is this disease does cause a lot of stress from the pain fatigue migraines and on and on.I just do what i can do every day and somedays that is just taking a shower is all i can do and even that was realy amjor for quite sometime and still is somewhat but i also have gotten my thyroid somewhat better and finally got my gp to give me anti imflamatory for the arthritis which has been a blessing for sure.I am still having some pain and fatigue but better then it was anyway.

The one thing i find with my family and friends is that the years go on with the lupus they seem to be less understanding about it.My hubby is wonderful of course but my sisters is the problem and my brother also.I do not say anything unless i am hurting real bad or if i cannot make it to something and that is when it seems i get the atitude or so it seems anyway.
I do put on my what i call my pajama pants during the day with two long sleeve shirts that are very comfortable.I do have to push myself to take a shower every day but afterwards i might be worn out but i do feel better for sure.
Well sorry i guess i just felt like venting some :lol: .

Lindy this is a wonderful sight to get lots of wonderful support from and meet people that will be there for you for whatever it is you are going through and even make some friends for sure. take care and hope to chat with you someday soon.

Tammy

 

[nemo_importante]

Hi

What I do each day depends on my energy levels. I always try to have a shower no matter how bad I feel because I always feel better afterwards. If my energy levels are good I will do a bit of house work, if they are not I don't. If I'm having a bad day I tend to sit on the sofa with my feet up so I am resting and read or cross stitch. If I am really tired I sleep for a while. One way I have found of conserving my energy is to do things at a slower pace as I seem to use less energy then. I also tend to wear a sleeveless/shortsleeved top underneath a sweatshirt as I can then have the sweatshirt on or off depending on how hot/cold I am.

 

[karen.w.]

hi lindy

I just wondered if you have any gadgets at home to help?
I have a few things that help make my life a bit easier.

I have a kettle tipper which helps when my hands are sore.
before we replaced our taps with the lever variety I had plastic lever handles which make it much easier for turning taps on & off.
an extra stair rail,to hold onto going upstairs.
foam tubes on brush & mop handles to make gripping easier.
a rise & recline chair for when I'm really bad.
oh yes & children to clean up he he

lindy these a just a few things that can make a big difference.an occupational therapist can advise you more.

everyone has given you good advice,I couldn't agree more!
I always try to pace myself & do what I can.within reason as I have children always listen to your body.

take good care,hope to chat soon
:hug: karen x

 

[Jirel]

I'm 53 and so far able to still work (because I have a sit down job) but when I can work around the house one thing I find indespensible is one of the grab things that can reach over head (or in my case down to the floor). The one with suction cups on it is the best. Also, plan your day in sections. Work for 5 or 10 mins then rest. Then work for 5 or 10 mins again. Try to look for a mild exercise program (I keep trying to use "Sit and Be Fit" on Public TV) that you can do every day to keep your joints moving and your muscles going. The biggest thing I've noticed in the past 4 years (since my diagnosis) is how bad and fast my muscle tone is going downhill. I recently joined Shapes because they have a pool to exercise in and they keep it heated to 81 - 82 degrees because that's what the National Arthritis Foundation recommends and that helps too because its moving around without pressure on the knees.

 

[lazylegs]

Hi Lindylou,

It takes awhile to get my day going. A shower is a must. The warm water helps the joints start moving. On a day where I am going out that evening and showering later I wash the dishes by hand to get my hands going. A heating pad can help the knees, ankles, shoulders and elbows. Usually by the time I have showered, eaten and cleaned up I am tired again so I rest.

Unless I can't get out of bed I get dressed every day. I favor the Hollywood style pant that zips on the side and doesn't have a big waistband. They feel like you are wearing pj bottoms that tie at the waist but still look nice.

Each day I have one thing I plan to accomplish. Today it happens to be the bathrooms. I may only get one done, but hopefully both. If my energy level is good I can do the entire bathroom at once. On a day where I am dragging I do sections at a time with rest in between.

Some tasks are now out of the question. Vaccuming is one of those. It inflames the lower spine and I can't walk for days. Generally I don't do the marketing either unless it is just to pick up a few things. Fortunately I have a very understanding husband who is willing to do those things.

Also every day I do some type of exercise. It sounds crazy when you are exhausted but it really helps perk me up. On the days I can't get out of bed I exercise with a stretchy band in bed. If the weather is good I go for a walk. Then twice a week I go to an easy yoga class.

It took me awhile not to feel bad about doing so little. It really helped when my husband explained that he would rather have me up and not in pain than have a clean house and in agony. Taking care of my body is now my full time job.

Take care,
Lazylegs

 

[keebler]

Hi Lindy,

It is nice to meet you.

I just take it one day at a time. I try to get the basics done in a day. If I have any energy left I might tackle one task.
I wear comfortable clothing, sweat pants and cotton shirts.

I am sorry to hear that your husband has heart problems. :hug:

Hasn't this winter been a tough one? I live in Iowa and it has been hard here.

Take care,
Lyn

 

[acard]

Hi Lindy,
This is a very informative thread. I am trying to adjust to my new life and it isn't really new-it is just that I was in denial.:hehe:
I worked and I loved going to work until awhile back. I still do not have a routine down because my health is just all over the place.

I am getting a lot of great ideas to help me get a routine.
I have to agree with buying those extenders/grabbers. I am only 5'3" and shrinking as I type. I really suffer from SEVERE low back pain and of course a lot of chores require me to bend over I hate it!!!

I am truly spoiled by my hubby and dd. I am so very blessed. My hubby though has taken on more hours which is keeping him in away from home now Mon-Fri and it has been very difficult because he really does everything. I am having to suck it up and try to do what I can. Thank God for my dd she is a huge help. I also am blessed that it is just the 2 of us to care for. She takes care of all the animals. I am not currently driving due to seizures and vision issues and in California that is a must.
My dd is only 15 not yet able to drive, so this has been hard too. I just can't drive for fast food or to the drs. I have to schedule appts. around my hubby's days off or when a friend might be available. We should be getting our handicapp plaqard here soon, so that will help some.
I just want to drive again.

I wanted to say that I wear sleeveless tank dresses with a sweater or cute jacket. My body is hot/cold/hot. I like the dresses because there is no pressure on my tummy. I have a sensitive tummy. When we did have a cold spell, then I did wear sweats outfit/ in layers.

My goal is to be able cook dinner 4 times a week. I am also working toward keeping up on my organizing of my house. I want to be able to exercise daily in some shape or form. I used to belong to a gym when I worked I did water aroebics and yoga and loved it. We have a community pool-laps would be great. I need to spend time with hubby when he is home and it has to be quality time since we don't get to see each other now during the week. Now during the week I get to spend all the time
I want with my dd. I have to get out of bed to do this. She is aware of when I am in pain though and this is sad to say, but my dd will tell me to go back to bed because she can see that I am not doing well. I obviously don't fake being well very good. I am having feelings of guilt over this and was just talking to my dd this am about it. Maybe some of you can share your wisdom about this issue.

I didn't mean to ramble. I hope you adjust a lot better than I have. It sounds like you are on the right track.
I am also sorry about your hubby. I am sure that is really hard. I know I worry about my hubby and his health. Our hubby's are so wonderful!!! They are our everything:wink2:


Hugs,
Becca

 

[Lindylou702]

Thanks!

Hi, everyone...Thankyou so much to all of you for answering my thread, it helped a lot. I think some days that I am still in denial ,but am trying to adjust to a completely different life. The main problem now is that I don't feel productive, and feel so slow and worthless. I try not to, but I used to work circles around my girls, and now I feel a burden around them:sad: I love doing things for my family, but can't seem to manage much. I have 3 daughters and a son......they are all grown and have families of their own except for our last daughter, who is in college. My husband and I spend our days together, and enjoy it, but are living on a shoestring:worried: ...anyhow wanted to let all of you know how much I apprciate your words and encouragement...I am so new at this and don't know what I am doing.:blush: Write more and tell me about your days....I love to hear from you. I also have a sweet little cocker that is named Tucker and is 4 years old......Love to all, Lindy