Tricks of the trade

[barefut]

What are some of your "tricks of the lupus trade" for getting by day to day......

ME:

I'll cook enough for two meals and freeze 1/2 for quick easy dinner prep. on my down days.

What do YOU do to make life w/lupus a little easier?

[jude mack]

I get up really early and try to get everthing done by 10 am. Cook and freeze alot of food. Have a rest between things to do and hope for the best. Have a great day! Jude :wave:

[gretchenb5]

I'm having a hard time learning to live with a chronic illness and the unpredictable restrictions it puts on my every move. When I'm feeling ok, I want to take full advantage of it and often over-do things before I know it. And then I pay for it for days. But I'm just so greatful for the moments when I'm not hurting too much -- I want to do things that bring me enjoyment! I'm finding it hard to find that balance. I guess this will be a process.

gretchen

[joannemc]

I also cook meals, and freeze them, I have to take it easy after everything I do! :blink: Im doing geneology about my family, its actually fun. As long as my hands are ok, I will find things to do, as long as Im not on my feet. Hope everyone is feeling ok. Have a good night! :thumbs: Hugs..Joanne

[Widget]

Having been diagnosed just 12 months, I'm in the same situation. I guess I'm not accepting that I have the disease, and push myself too hard, then suffer the consequences. I love a nice glass of wine, (well, more than one glass!), but of course find that I just can't do as I used too - so I make choices. Tips on learning how to handle the disease and make lifestyle changes will be invaluable, and from those who actually have lupus. The fatigue I struggle with, as I belong to a walking group, but after a full days work, I often find that I just don't have the energy to go out again in the evening. Is this common? My rheumy is totally unsympathetic, and is one of those 'oh if it's not in a medical journal we don't get to hear about it', which frustrates me. :angry: I come away from consultations more upset than when I went in.
I'll continue on with this site, as the postings are at least making me feel that it's not all in my head afterall! :hehe:

[HelenS]

hi, cooking ahead and freezing meals is a great idea, i also keep a couple of frozen pizzas on hand just incase i have "one of those days", my slow cooker is a great help because i can put all ingredients in the crock in the morning and by dinner time the meal is ready. housework: one day i dust, next day vacuum (if i can), next day mop the floors etc. i do laundry often so that i dont have to lift large loads as i dry my clothes outside.

i find that keeping afternoons off limits works well for me. my family know now that i rest in the afternoon, even if just reading a book. i love distractions from lupus, such as reading a good mystery, watching a movie, visiting a friend, having lunch out, shopping (i love retail therapy). i took early retirement cos of lupus and find the days are long so having my pets is a great comfort to me.

luv helenxx

[barefut]

I use paper plates for most meals so I don't have to wash so many dishes.

I keep a stocked diaper bag in the car as well as a case of bottled water and a bag of sports equipment for the kids and a stocked beach bag, so when we go on outings to the park or the beach, we just hop in and go.

I'm going to be buying a Quisinart soon to save me from slicing and dicing and grating cheese! I hate grating cheese! (whimpy wristed)

Oh yea, I bought myself a hammock and it's mine, all mine!! (no kids allowed)

[lisade]

Hi all! Great Thread!
I think my "first trick of the trade" was to accept that I had an illness. It took me many years to realize that I do have an illness that requires me to limit and replace some of my most favorite activities. That being said my trick is to pace myself and every afternoon I take a nap. Everyone, friends, family, kids no I TAKE A NAP and to not wake me. I cut off the phone and that's it!!


:jump:

[hurley]

I no longer make my bed every morning.

My kitchen is no longer spotless.

I have resorted to frozen meals during my down periods.

My daughter helps out with A LOT of chores and is learning to cook (we have fun in the kitchen together).

I keep my mind occupied and have lots of crafts for my daughter to work on (latch hook, bead work, paint by number, etc) since it is difficult to do things like take her to the pool.

I buy in bulk so that I don't run out of things (to avoid extra trips to the store).

...anything that makes life more manageable.

[Deborah Rumbles]

:wave: Hi Barefut, and others my tricks of the trade are don't do too much in one day,always have a nap in the afternoon after lunch, then you have a bit more energy later to do the eve meal or whatever,I also use a blackboard in my kitchen and write on it to explain to my family how I feel today,depending on hoew I feel I delegate jobs also on the blackboard to my sons' aged 12 and 14,and also my husband.It works.Deborah :flowers:

[Pixii]

Well.. i think my best trick of the trade here.. is i put everything i use or will use, back in the same spot i had it to begin with.. :P
and i make sure if one of my family members uses something.. they put it right back where they got it too.. for my sake... (just in case of a brain fart and i have to hunt for something all day.. :) )

next.. i try very hard to get everything accomplished during the morning.. even if it's just getting my animals fed and taken care of.. because by noonish.. i'm pooped totally out... :yawn: and i have told all my family members no calls, or coming by from noon until 4PM.. cuz i'm either sleeping or just resting with my dogs..

my hubby handles all the house work.. and he does the cooking too when i can't.. i do little things i can.. and walk away from the rest.. this is my biggest accomplishment....(i'm a perfectionist.. :( ) it drives me crazy sometimes.. but i'm learning.. :)

[karol]

:wave: hi everyone, i just take it day by day.. fatigue is a big battle with me.. thank god with my job i dont really work on a structured schedule so when its slow i go home and nap until pager goes off.. rest is really important.. exercise i have found really can help with the fatigue.. even just a 20-30 minute walk.. my main flare areas are my wrist and ankles so i have to be really careful what i do..my rheumy did give me a medicine called provigil that is suppose to help with fatigue..it does boost your energy but it stunts my appetite ..i already have lost weight so this is a problem for me,.but i do use it every now and then..karol

[flowergarden]

I have learned to schedule my life on my two calendars--one by my phone and one in my purse. EVERYTHING goes on them. I have 2 memo boards in the kitchen.

I have a place by the front door where I put things I want to take the next time I go out. I put coupons in the car so I don't forget to take them with me.

I also keep frozen dinners on hand for quick meals. My door handles were changed to levers to help me grip them. Gardening tools have large grips.

I always do things in the same order when I shower so I don't forget to wash my hair (or rinse it). My neuropsych examiner said that I need to schedule my time tightly to help my memory.

I organize my pills once a week so I don't have to stop and think about what I take when. I keep a list on my computer of all my current meds, allergies, doctors (with their phone #'s, faxes, and addresses), and personal contacts. I update it and take it to every appointment. I keep one in my purse, too.

I haven't figured out how to do some things, which is why I need an occupational therapist. I'm going to have to give up my beading. I've already given up most of my recreational reading. Even movies are hard to follow.

One of the hardest things will be giving up driving, which is coming very soon. I don't know how I'm going to make acommodations for that. The nearest bus stop is 1.25 miles. Paratransit is .5 mile away. I may have to sell my house and garden and get an apartment. :cry: :blink:

Like some of you, I'm still learning to accept my life changes and disease. It's a never-ending process for me.

I like the thread, Barefut. Thanks! :flowers:

[Vida]

:wave: hi

when i wake up whether at 6 in the morning or midday i take a bath and then slowly take the time to dry myself and dress.

then i decide what housework i can cope with that day and take rests between every tasks - i try and do a room a day - although when the weather is as hot as it is at the moment or i feel really bad the housework gets done whenever.

i do go out every day even if it is just a little walk in the garden or to the corner shop.

i also work part time one job is done at home and the other is only for a couple of hours a week both are stressfull but enough for me.

i do a fair bit of reading and i am thinking of joining an art class at the local college in september it's not a serious course but my fathers family were all artistic and sometimes i get the "urge" to be arty so i will give it a try.

oh yes - jars are opened by hubby the grip in my hands and my wrists are so weak - packets are opened using sicsors - ring pulls on tins are lifted with the handle of a spoon mainly because of my hands but also to protect nail varnish if i am wearing any.

i have also bought a steamer which is wonderfull - it really gets rid of dirt easily and uses no chemicals.