I know all MS’ers suffer trying to balance activity and rest, but I would just like to know your opinions. I am seeing therapists, taking depression medication, but never in my life have I felt so crazy, and I realize that depression is not only an outcome of an ms diagnosis but can be actually cause by ms, but I stay in a dark place because this illness is so strange. On a daily basis, I have moments where I feel normal and get excited thinking I can do more then I… read more
Ughhh... I know exactly how you feel... I used to be a crafty worker aiming to get my Bachelor's in Computer Engineering... but it's been 10 YEARS and my short term memory is butts. My moods are worse. Everything just feels like the world is saying, "give up. You're a FAILURE. Bow down. Permanently..." But, you know, I'm not giving up. I had a dream when I was a little younger and I'm a determined pragmatist. I'll keep fighting my MS, and I will not stop!
I have learned to accept that the fatigue is an issue, but I won’t stop trying to improve it. People don’t understand, they see a healthy intelligent person. But let the fatigue kick in and I can’t save face. I’ve been on the mission to regain purpose in my life for several years now. It’s not easy. From sleeping most of the day to getting back to working, it’s been a challenge. My MS is a job in of itself. I started with juicing, that canabbis, and my eating habits. Exercise, ha! I would go and cycle for 5 minutes, my ability to walk was so bad it was a workout getting in the gym. Then I discovered aqua aerobics and things changed. Of course, I was spent for the rest of the day, but it did wonders for my mind and helped with the stiffness. As far getting back to work, I suggest starting with a hobby, something you enjoy doing, perhaps making a craft of some kind. I did beading, than sewing. I don’t have 9-5, I work for myself, or as it’s been pointed out to me a very expensive hobby. It gets me out of the house a few hours of the day. Keep hope alive, your mind is more powerful than you can imagine. Take baby steps. And rest when you must. I know now that if I lay down for at least 15 minutes, it can do wonders instead of pushing on!!
I am currently asking myself the same question. I have been on partial disability now for exactly 4 years. I’m an MD. I see patients in the mornings only, and sometimes the brain fog sets in before the end of the morning and I turn to caffeine to get me through. I do paperwork when I can. If my brain or body can’t handle it, I go home. If I’m having a good day, I do as much as I can, since I don’t know when I’ll feel that good again.
I’m always behind. I used to see 30 or more patients a day at a point in the last decade. Now I can’t see more than 7-9! New patients are a challenge. I work 4 half days a week. What I do in 1 week now, I used to do in 1 day. It’s mind boggling how much I’ve declined.
I have a cane, walker, scooter. I have chronic pain. I’ve had 2 back surgeries and a hip surgery. I have numbness, tingling, weakness on the left side of my body, a slight left leg lag that causes me to trip and recently, I took a hard fall. My knees swell up and hurt. I have disabling muscle spasms. I have chronic tendinitis in several parts of my body that flare up intermittently. I have brain fog. My executive function is a joke now. Money management, managing the home. We have an 11 yr old who is ADHD and Asperger’s. I can’t manage my life. I recently made the hard decision to get off Facebook. That’s been my social life. But I’m trying to see if that frees up my time. I’m of the opinion that I do it when I’m not well enough to do much else. But we’ll see. So far, getting more sleep but not getting any more done! 😜
I ask myself daily. To work or not to work? I’m 10 years from early retirement. I’d like to work till then. It gives me purpose. My patients live me. They want me to keep working so they can keep seeing me. I’m blessed to still be able to practice and be good at it, though I don’t know how. God preserved that part of my brain somehow, and I’m thankful. But there is no balance in my life. Laundry is never done. There are always dishes. I’m never caught up with anything.
We used to travel a lot. It got difficult however. Packing took weeks. Unpacking took months. I was always leaving vital meds at home. For now, I don’t wanna travel anymore. Taking a break.
Sigh. One day at a time. My life has changed. I’ve had to let go of people who do not understand what is going on with me. Too sick for high maintenance relationships where people try to make me feel guilty for things I can’t control.
Hang in there. Doesn’t sound like you are able to work. Just my 2 cents.
I work now because I can and im afraid what disability will pay me compared to my now income. I'm a union electrician so I know it can't go on forever but my only advice is do what you can when you can. Let your body and/or pain be your guide!
I can relate very well to what you are saying. I would like to encourage you that being a good mum is a great job in itself.
I myself had a business which demanded long hours and lots of stress. I needed to cut back hours that I spend in my business and let the difficult clients go. I also learned to trust subcontractors to help me with my workload.
I needed to learn that our Lord, Jesus made me with a sharp brain, but still allowed MS in my life. MS slows me down with brain fog and fatique. However our worth is not in doing, but in being there for family and friends.
Be honest with your family and friends. Ask for help to clean the house, cook a meal once or twice a week, pick up kids. I learned that the people around me wants to help if I will give them the opportunity.