Hi all, there were so many interesting and painful posts about how this stinkin' disease affects us, that I thought it would be of value to hear how you all cope with it? How do you manage to get up in the morning? What motivates you?
I've had a really bad time lately with such fatigue that I can't stay awake. Keep going back to bed all the time. I'm struggling to keep moving? HOW do you manage this and other nasty things this disease does to you??
Thanks LyndaWhen it first hit, I pretty much laid low and did the absolute bare minimum around the house. I was between jobs, so I had all the time in the world to lay in bed and rest. I eventually went back to work, and what a shock that was! I was in agony for the first few months. I continued to feel sorry for myself; I didn't do anything besides going to work and tending to the house/kids. I felt that life was passing me by. I decided to get more involved in community and school issues, and also went to the gym regularly (mainly swimming). I found that the more active I was (especially mentally), the better I felt. But there are definitely times that I overdo it - I have a hard time turning down requests for assistance. I've become better at it in the last few months. But when the extreme fatigue hits, I have to cancel my activities and just rest as much as I can. It's hard, and it's frustrating.
I agree with you totally Jasmine in that keeping mentally busy takes my mind off whats going on. The fatigue, if I let it would have me permanently in bed. At the weekend I become a slug
That said, I work 5 hours a day (in an office), then I swap jobs and do the housey stuff. I have found by Thursday I do have a brain fog issue, you know the cottonwooly type fog. My colleagues are fantastic and if I need to I just leave early. The other thing for me is that I'm setting an example for my son, and he knows that I have to be really feeling crap to not go to work. Hubby is the same. I dont know about the US but there are too many young people who call in sick at the first sniffle. I dont want my son to have that mentality. Each person has their own 'things' that get them out of bed and to work or just out of bed and doing a bit around the house. But its a fine line we walk and you have to learn to listen to yourself and take the appropriate action. I knew from the start of this disease that I needed to keep my family and my friends close to me. I needed them to help me along this journey. Because I reached out to them and did what I could to participate and communicate they've always supported me, helped out, and given me love. When I couldn't particpate in outside activities with my friends, I'd invite them to the house for a tea party, a themed movie party, or a gossip party. Didn't take much energy on my part but it was fun to put together and prepare. Working with food always takes my mind off the disease and how I feel. The other thing I did to cope was to hire a housekeeper. She came to the house once a week and spent 4 hours. Stan was really good about doing laundry and picking up, so all she had to do was vac., dust, mop, and do the bathrooms. When she had time she would cook a couple of meals for the week. She charged for 4 hours and it was the best I've ever spent. She became one of my best friends and was a godsend when I became housebound for 3 months. Find the money for a housekeeper, it will help you physically, but more importantly emotionally. We all sit around and fret about how unkept our homes are because we just can't do it any longer, or we're in the middle of a flare. I was honest with everyone regarding RA/PA/OA, including my employer. I was able to modify my job, work less hours, and hire another assistant because I was honest and talked to the board about my limitations and RA. I lasted a year more than I would have if I had kept going on as I was. I took that year and prepared myself for early retirement. I also decided to continue my volunteering. Even if I had to use my cane or a scooter I volunteered. It kept me going when nothing else did. I still volunteer wherever we happen to settle for a month or more. Traveling makes volunteering more difficult but I've found that most communities has a Meals On Wheels program or a Senior Center that runs on volunteers. I'm always motivated by my friends, family, and people that I volunteer with. I'm also motivated by the people on the AI and 4RA Talk. Some of you are my heros. Lindy I guess I am a "hippie" J/RA'er
What motivates me to get outta the bed is my son. It is top priority that he is well and alive when hubby gets home from work.
I have my days were I just lay in the bed while son watches TV in the livingroom, but that was when I had the EXTEREM fatigue from having re-activated mono. Other than that I make myself get up. I have no activities. I am stuck at home until hubby gets home. I cannot drive, well I can... but I need hubby with me... I only have learners permit
But I really do just go with the flow, and sometimes the flow rages too much and I capsize.
I still get up early because I have to, or at least I like to, be up with my daughter and see her off to school. I go to work like always, get home around 10:30, but skip the gym. If I'm in the gym routine, wild dogs can't keep me from it, but now I'm out of it and having a hard time getting myself back in to it. I know once I do, the old obsession will kick in. But as far as coping with RA, I do what I have to do because the responsibility falls to me, feeling well or not. I don't have the boundless energy that I used to have, I can't lift the same kind of weight I used to and I can't run like I used to. Still, I can use an elliptical trainer and I can lift some weight and likely rebuild some of what I've lost. I just have to do it. It's been on my mind alot lately though, kind of eating at me, so I don't think I'll be putting it off much longer. I knew from the start of this disease that I needed to keep my family and my friends close to me. [/QUOTE] Lindy, I think that is so important. I have just recently been sharing with my husband and my mom about how I feel. My mother and I never talked about my RA. Even when I was 10 years old I denied the pain to everyone. Most of my closest friends never knew. My husband didn't even know until about 5 years after we had been dating. I hid it that well. Just get a very hot shower in the morning take A LOT of motrin and go on with my day. I felt like everyone would think I was just a complainer and I didn't want to make my mom feel bad that I was hurting. I knew she would. I have just recently talking with my mom about it. I didn't tell my mom I was seeing a rheumy again until 2 days ago. She told me she felt like it was her fault that I got the disease.
Anyway, the point is that since I have been opening up about it, i feel a little better. My husnabd doesn't get as irritated with me when I am cranky and tired. It's not good to hold it in. This board has helped a lot with that. Sharing is what has gotten me through these really rough last couple of weeks. LinB - I'm looking for a housekeeper now....but I can't find anyone for less than an hour. I know that having someone will help me out because the stress of a dirty house is killing me. I use my energy to go to work (I love my job, and going there gives me the opportunity to not be feeling bad about my situation) and I also try to keep as active as possible doing things with friends. There are days I want to stay in bed and cry, but I just push myself to get up and get going. The day after MTX or a day on the weekend I really lay around and regroup. Knowing that I'm going to have a day of rest, pulls me through when I have low energy. Now then...can I hire your for 4 hour housekeeper? Jeez, what a baaaahhhgin. I have to say that my kids and their well being motivates me. I do want to be an example, b/c it is very possible that they will be wearing my shoes one day. I want them to know when I am hurting, but I still want them to know that when I am ok, I am there for them completely. I usually try to catch up on sleep, and some of the house stuff when they are gone. I just wish I had energy for it all. I hate how my house looks most of the time, and would love to have consistant help, but we have NO extra money, since I am working very part time. What I hate the most is I did feel good when I got up yesterday, and so I did ride my bike on our greenway...and then I have been up in pain most of the night because of it. This is what I hate about the fatigue and pain...you think you are getting better, so you reclaim a piece of your life, and then bam!!!! Back to square one. Hi Debra, believe me she's so expensive now that I couldn't afford her!! This was 10 years ago. I believe her rates are a flat rate per house based on what she has to do and how big the house. The smallest house starts at .00. Even at that expense, if there is anyway you can find the money...do it. Having a clean, fresh smelling house makes all the difference in how you feel. I'm not a germaphobic and I can live in clutter. I never realized how nice ihaving a clean, non cluttered house was until I had her help me out weekly. I never had time for the house and even when I was single I had a housekeeper at least once a month. I made it as part of my monthly expenses. I never looked at it as a luxury, for me it was a necessity. If I'm in the gym routine, wild dogs can't keep me from [/QUOTE] Linncn--This is where I am right now. I go to the gym at 6am 4 days a week. I can't do some of the things that I could before, but I'll be darned if I am going to let this RA thing take it all from me. I do what I can and am happy to be able to keep going. I cope with it by just doing what needs to be done. Sometimes I am slower than I used to be, but I still keep going. On those 'bad' days, my kids--especially my 15yo son--and my hubby are very sensitive and pick up the slack. They are my reasons for refusing to give in. I have so much that I want to do, see, experience before I have to sit down for good. I am learning (slowly
Anyway, thanks everyone for all the encouragement that you have given me by just being there to answer questions that I didn't know I even had. Andrea How do I cope I prioritize..most important things get done first I plan..have a schedule..do something everyday..even if it is just to get up, shower, and get dressed. Never spend the day in bed..its bad for the joints and bad for the attitude I pace myself..I don't overschdule and down time is planned for before and after big events problem solve-if you can't do something figure out a way to work around the issue. People with disabilities are pros at this most of the time. I'm proactive-I do what I can to minimize the effects of my disease. I'm lsoing weight, I exercise as much as I can (its always in the plan). I research and work with my doctor. and finally I persist. Giving up simply is not in my make up. I brought this forward so erica can read some of our old posts about how we deal with this disease. So many good thoughts in this thread. Lynda
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