I was just wondering if anyone has tips for getting through fatigue?
I am currently waiting for results and intend to talk to my neuro about posssible medication, but at the moment we are trying to keep meds to a minimum so we can nail down whats going on.
My mum suggested caffeine to prevent headache after the LP (which worked a treat by the way) and I felt sooooo good that afternoon and the next day. Though it could have just been that fact that the LP was over!
Since that I have occasionaly (sp?) had 1 caffeine tablet in the am (about the same as 1 cup of coffee) as I don't drink coffee or tea or fizzy which rules out other caffeine.
But I am hesitant to keep taking it, and can't obviously in the pm for sleep reasons.
So does anyone have any tips? I cannot keep rewarding myself with chocolate as I not really able to exercise at the moment and my jeans are in danger of not fitting anymore!
Fatigue. The best method for me to combat fatigue is to avoid it. That is, when I start to feel tired, I stop, rest, and recover. Some of my triggers cause fatigue. Luckily these triggers, for me, are controllable triggers. If you find your fatigue triggers, this can help you. My only caffeine use is for my MS headaches, which for me are those which hit the top center of my head. I use dark chocolate to combat the pain in my lower skull (rear lower).
I do not use caffeine for fatigue.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Caffeine is not recommended for MSers because it adds to the already present continence and urgency problems that most MSers have (or develope). Also, the cycle of using caffeine leads to lower LOWS when the levels drop off.
It IS recommended before and after lumbar puncturs though...your mom was right!
There is an interesting article on MS fatigue in this months Momentum magazine - available online ...
Taking short breaks throughout the day and resting when your body calls for it is the best thing. Pushing through it isnt a good idea, but for many of us, myself included, necessary due to the type of work we do or our schedules. The best thing people like myself can do is try to schedule earlier bed times and get more sleep when we have days when we just cant stop and take breaks.
Exercise is also highly recommended, but the right kind of exercise. Strenthening and low impact cardio- swimming is especially recommended. The idea being that you release endorphins, get stronger, and thus use less energy to do daily activities.
Dont ignore fatigue, because it can cause you to relapse and relapse hard!
Nikki
__________________
RRMS- dx 05
The following user gives a hug of support to MSNik: Peanut49 (04-30-2012)
Unfortunately my fatigue is with me constantly. I wake up having felt like I have just done a half marathon (I know the feeling as I as I did one about 7 years ago and remember it well as it was completely out of character - I am not a sporty person!) and it is with me until I go to bed.
I know that I do feel a little bit better if I don't get off the couch all day, but that really does not get the washing done, and I think that it it is better for my mental health to do something even if it is hanging out the washing in the yard with our 2 cats helping!
In saying that I have learned the hard way that eg stacking the firewood is definitely not an option, even helping with a few bits! I feel really guilty about this as my Husband has to do it all while I am keeping him company (watching). But if I do it I really suffer. Making dinner is also an issue There is many a day when my Husband gets home from work and I let him know he is making dinner!
I suppose I am still figuring out what my triggers are as you say.
I know that showering is one! and only have one every second day, but this is obviously a necessity. Having a colder shower helps a bit but I still know when I've had one!
Gluten is another possibility but that is too hard to cut out at the moment (I do when I can)
I finished my job a while ago partly because of Fatigue and also daily headaches and bad pins and needles. This has helped a little and the stress is less.
I just get so frustrated with it! I want to do so much, clean the bathroom, get my assignment done, wash the windows, vacuum, ironing, organize dinner. (and of course stack the firewood) Obviously not all in one day, but it would be nice if I felt I could catch up gradually. And all I can do is sit on the couch
I feel guilty too as my Husband works and supports me and I feel I should be doing the stuff around the house. I know I finished at my job because I was having difficulties, and that if I was able to do all the home stuff I would be working.
To me I just sound lazy. Like if I could manage to 'pull my brain together' that it would somehow go away! Grrrrr! When I hear of what you guys are doing - Studing AND working AND raising a family I am Amazed (and a bit Jealous). I know that I should not be and that things should improve.
I also find it hard because my Mum had a lot of these symptoms (apart from fatigue) when she was bringing us up. She has an Arnold Chiari Malformation and Syringomyelia and had surgery 15 years ago. She soldiered on and still does even though she has the pins and needles, numbness etc and now migraines, and I feel wussy compared to her because I cannot carry on like she did. She is a great Mum though and took me to my LP when my Husband could not because of work. (This condition has been ruled out for me)
My husband and I were trying to start a family before I started to downhill which also annoys me, but there is no way I could care for a baby at the mo!
It annoys me greatly too that I generally have nothing visibly wrong. (except when I stagger in the supermarket carpark and all the locals in this small town must think I am a drunk!) It would be soooooooooo much easier if this were a broken leg! I live in a small town and am relatively young and even our newish friends wonder why i am not working (I tell them I am studying but it is only one paper)
I tried to explain the spoons theory to my husband and he tries to understand but I am sure some of you guys do.
I think I must me having a bad week as I have just realized my face has been twitching for the last couple of days!
I know that I have to learn to trust myself and look after myself, my self esteem has never been great. But I will get there!
Anyway Thanks for listening to my rant. I know that the tears that I shed are of frustration and that things will get better. That once I am further ahead in my journey I will have more answers. It is just the waiting and not being able to do anything more to help myself is very frustrating.
Thanks again Jayhawk for the reply and for someone to listen who understands. Hugs
OMG! Will stop any cafffeine immediately! Have stopped fruit juice which helped urgency etc issues but I definately don't want them coming back!!!! Oh Wow. Thanks!!!!!!
I have been trying to find somewhere that I can dance for exercise as this is more appealing to me than other exercise, but yeah, Sigh, you are right. I don't like walking by myself, but maybe going to the pool is an option.
That article is really interesting thanks Nikki.
I think that I have also been having too much sugar!
I kind of knew on some level that I should be doing some exercise but now I know I need to make it happen to feel better. One step at a time.
Peanut.
I read your responses to both Jayhawk and myself. Obviously, you know more than you are giving yourself credit for...and yes, extreme fatigue does cycle. You can be fatigued with MS all the time, but it only really hits hard "some" of the time.
Sounds like its hitting you hard right now. I also have a family and a home- but I still work 50 hours a week and go to grad school. What I do is try to really prioritize. I know Im at my best first thing in the am, so I get up one hour earlier and force myself to exercise. I also like dance exercise and do some video tapes- i have so many of them. I also have a treadmill indoors and force myself to walk at least one mile each day...sometimes steppping it up to a jog, but never on an incline, or I lose my balance and fall off.
Then I shower....and yes, Coffee is my one guilty pleasure. i allow myself one cup every morning and I savor every sip of it. So, now its coffee time. For me, I have to be out the door and off to work by 8. Im in sales, so sometimes, if I dont have an appt until later, or its close to home, I might manage to stretch that out till 9...but during that short break I have, I try to straighten up the living area and make the bed. Wipe down the bathroom- not CLEAN it- but at least make it presentable.
After work, dinner time- that I get. Most of the time we use our grill. Its so much easier and less cleanup. Many times Ill grill extra chicken breasts or a larger piece of meat and the following night throw it into a salad. If I can simplify dinner and not have to ask my husband to do it I will. One night a week, usually Friday is take out night. Since I dont do fast food ever- its usually chinese, but we found this great new burger joint that opened which does PortabellaMushroom sandwhiches to die for! I can eat that without guilt! My husband is the pasta pro in my house..and we make about 2 gallons of gravy (sauce) at once on a weekend and freeze it for the month...that way if all else fails, pulling some sauce out of the freezer and boiling some water for pasta is always around. You have to really think about the week's menu. I actually get completely worn out food shopping. Not only the walking, but going from hot to cold aisles triggers something in me. I now do a list online, which they fill, and go pick up my groceries. 99% of the time its right...when it isnt, I dont worry about it. For the things that I need in between or I forget, a quick trip in and out isnt a problem.
My husband has agreed to help me once a week in really cleaning. I cant scrub the bathroom the way it should be done. My hands are too weak and a have neuropathy as well. He does the bathroom, while I vaccuum and dust. We change the beds together and as long as he drags the hamper down to the basement, I dont mind doing laundry....it took a few years for him to accept that I have limits- but he did accept it and the most important thing is to do what you CAN do and ask for help when you cant.
And most importantly, prioritize. If you know you have company coming on Sat, start mid week with light cleaning and save the most important stuf for last and when he can help you. If you know you have 4 loads of laundry to do, try running a load while exercising or while you are relaxing in front of the tv or with a book, at least something is getting done! Dont feel guilty on days when it really hits you ( the fatigue)- take a nap and do what you must to take care of yourself.
When I was in high school, my old boss and I went to his mother-in-law's house. She was in her late 90's and had 16 children, but she lived alone since her husband died. Her children lived nearby, but "Grandma" chose to live alone with 'Max' . Max was her pit-bull/coondog mix. He looked like a long legged crocodile. We delivered her firewood piled it beneath the woodshed roof. We did not stack it. Max did not like stacks! I found out that it was Max's job to carry in the firewood. He performed the job with great zest.
Firewood require stacking can really wear you out in a short time. There was no snow this year, but clearing the drive by shovel is no longer in my options due to my experience last year. I bought a small tractor with a plow.
Housework- this is something that has to be prioritized. Bill paying is something that I do not do, nor do I use the checkbook. I do not want to make any mistakes. I will help around the house when I can. When I was in a power chair much of my time, I found that it makes for a mobile mopping and sweeping machine. If the power chair manufacturers would incorporate a few accessories, I think that users would love them, especially guys (maybe a Binford chair- cue Tool Time )
Priorities need to be discussed and made. Each day may change. I would have your top 5, 10, 15 things to do in the house. For me, if there are stairs it would be the top 2,4,6 things because stairs wear me down. During the day if you are on a top 10 list and "feel" fatigue setting in, stop and rest and be happy with that which you have completed that day.
My two sons have started to help with the chores like vacuuming and mopping, but I can still do these too if needed. The main thing is to know how far you can go each day and to not feel guilty if you cannot get through the whole day.
Depleting your energy reserves is much like a bank account. When the energy is gone and you keep pushing the line, you get overdraft fees- PAYBACK!! If you stop when you realize that you are starting to get tired, you should be able to rebuild your "account". You should look at your calendar for upcoming events which can deplete your account. A party is a stressor, even if it is joyful. Your emotions are riding in a rodeo and your body sees it as stress (good or bad). This can drain you.
For me, I will start resting before an event. Sometimes this means 2-3 days in advance. I will also rest a day after the event. This has proven to work for me. Typically I try to do 1 day before and after an event. If it is a big event, then 2-3 days before. My travel to see my neuro is 2 hours away. I rest a day before and a day after.
Knowing your limits is important. Delegating things which you cannot do is liberating. For me, I could not do 15 things well, but I could do 10 things well. This is, to me, a better proposition.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Thankyou both for your wonderful supportive replies.
I think that prioritizing will really help.
Maybe organizing dinner earlier in the day and exercising first thing will help.
I am a bit of a night owl so I will have to make sure I get back into earlier bedtimes!
I also wonder if part of the fatigue I feel is a bit of a translation in my brain issue!
I quite often feel 'heavy all over' and wonder if this plus my mostly all over pins and needles kind of translates as fatigue? Who knows!
When your muscle groups are weakened, the strong muscles are placed under more stress. This can add to your fatigue. You are going to transition to winter in NZ. For me, winter transition triggers fatigue. This is an uncontrollable trigger that hits every year. I suppose winning the lottery and jetting away would work!
When I was getting out of my power chair to start walking, I used the power chair to do outdoor activities which allowed me to reduce fatigue. My roofing contractors wife has MS and she was always fatigued. Her husband purchased a power chair which she started using. She was unable to participate in many of her children's activities and she was falling asleep constantly. Since she started using the power chair, her life quality increased substantially and she could do many more things. She uses it in her house.
There are some excellent outdoor power chairs built in Australia which you might enjoy.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Other than winning the lottery - yeah winter is coming but as you say it is unavoidable!
I am not ready to let whatever this is 'win' and for me this means staying out of a chair as long as I can and as long as practical. I think that exercise will be the answer at the moment. I have been staying away from it because it makes my pins and needles worse. But I will just have to deal with that!
I think I would have trouble explaining to my family if I were to use a chair for fatigue reasons, and I don't think it would work space wise! We have a small house, and live in a very small town where there is not much accessability. I do like leaning on a trolley at the supermarket though!
In saying all this I can see that a move to a chair would be an option for the future. But I'm not there yet. Although I hear what you are saying
Other than winning the lottery - yeah winter is coming but as you say it is unavoidable!
I am not ready to let whatever this is 'win' and for me this means staying out of a chair as long as I can and as long as practical. I think that exercise will be the answer at the moment. I have been staying away from it because it makes my pins and needles worse. But I will just have to deal with that!
I think I would have trouble explaining to my family if I were to use a chair for fatigue reasons, and I don't think it would work space wise! We have a small house, and live in a very small town where there is not much accessability. I do like leaning on a trolley at the supermarket though!
In saying all this I can see that a move to a chair would be an option for the future. But I'm not there yet. Although I hear what you are saying
Thanks again
Peanut
A power chair can aid in recovery. It is good to avoid it as often as possible, but if you need it, use it as a tool.
Daily stretching will help you maintain muscle memory. As for exercising, low impact is important. Yoga, Tai Chi, and pool therapy are good choices as is walking. Even with low impact exercise, fatigue is a possibility.
Around your home you can incorporate energy savers. When I moved back to Kansas, I was able to build a new home with disabled accessible features. For retrofitting a small home, you might look at removing throw rugs and carpet which can cause falls from foot drop due to MS. You can also place rails near your toilet or even install a higher toilet seat. Doors, if standard size, can be made wider with new hinges which allow for a wider swing. Lever door handles require less energy too. Most retrofit ideas can be DIY.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I like the idea of stretching actually, it is a lot more appealing than the possibility of getting stranded somewhere! and our local pool is a little...grungy
I am getting used to the idea that whatever I do fatigue will be a factor so I suppose it is about making sensible choices and not overdoing it. I have been known to have a cleaning frenzy when I have the occasional few good hours, which I suppose sets me back again!
Our little home had some good and not so good features for mobility.
Thankfully it came with lever door handles, but in the kitchen it has a tile floor which does not enable things to have a chance at bouncing when I drop them! I think in time some lino might be a good investment!
My husband came home the other day to find a pile of cornflakes on the kitchen floor!
I managed to drop the (thankfully) plastic container, both the clasps came open and the sealed lid flew off. I have no idea how I managed that!
I was having a bad day and threw a small tantrum by myself and refused to clean it up! Which he found quite funny as I am normally a nice, quiet, friendly person! Actually I have been a bit grumpy lately, I suppose that it is also part of the package deal.
I have also have fond memories of cleaning up a brand new glass bottle of cough mixture - sticky bright red mixture and glass everywhere! My fingers were stained red for days!
Out bathroom also has a shower/bath that you have to step over into. We do have longer term plans to put in a normal shower, and I may have to fast track them. At the moment if I need a shower and I am having a bad day I wait until my husband is home.
It is our dream to build one day. I had always envisioned stairs, but maybe not now!
I was thinking about what you said about the dog bringing in firewood but have decided that it would not be an option to train my 2 cats to do this! They are quite big cats, but one is not smart enough - she has a lovely personality but , well...
And the other one is too 'independant'
Anyway I think I have book somewhere about stretching, hmm...
You might inquire with your doctor about providing some stretching classes. In 2002 my neuro had a Rehabilitation Nurse spend time in my home seeing what things I needed to change and what stretching I should do.
I have bamboo floors in the kitchen area, bedrooms and dining/living rooms and tile in the hallways and my bedroom and bathrooms. The tile I brought home and wetted it down and tested it. I settled on the ones which were not slippery when wet. Even the bamboo floors in the kitchen do not prevent breakage. When food hits the floor, we have two boxers and my retired English Mastiff at home all the time to clean! No food is wasted. My current service dog, another English Mastiff also enjoys accidental treats!
We have a cat who decided she would live here (a stray). She and my retired English Mastiff are best friends and they will walk with one another. Based on what I have experienced with cats, you could teach them to drag the firewood in! LOL, it would have to be light and there would have to be something in it for them!
I worked on a dairy farm growing up. There were over 40 strays living on the property. They enjoyed the residue milk in the lines (about 2 gallons) twice a day and they kept the mice and rats at bay. Never saw much in the way of firewood If you do get your cats to do it, I would love to see a pic!
It sounds like your small home has some nice features. In the shower you can add bars and a shower seat. My shower is a roll in roll out shower. My mom used it when she was in her wheelchair. The shower seat is like heaven! You can incorporate a roll in shower with a pre-fab shower shell. I know that there are some available in Australia, but I have not looked in NZ. It has a slight threshold which is barely discernible and retrofits easily. They come in several dimensions and have fold down or fixed shower seats.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Remember, no plan is set in stone. Be flexible and be forgiving of yourself too! (that is- the life we lead with MS is like a roller-coaster. When we make mistakes, call it a learning experience and get back on the path.)
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Last edited by MSJayhawk; 05-02-2012 at 04:37 AM.
Reason: typo
Congratulations on your plan! Any plan is a good plan as long as you make efforts! You willl find that certain times of the year are more agreeable to you- I prefer fall and hate summer. Winters dont bother me much; howver if the weather suddenly goes from warm to cold- that can throw me off for a few days.
One day at a time...is how we deal with this disease but most importantly, dont sit around "waiting" for something to happen. Live each day as if everything is fine...alot of this is mind over matter and knowing that you can do anything you set your mind to....on the bad days set your sights alittle lower!
Be good to yourself. You didnt ask for this disease but by the time you have had it a few years, youll realize that its no big deal in the grand scheme of things! Getting to that point takes work....but we have survived and so will you!
Nikki
By the way, Peanut. I was looking over power chairs and there is a 6 X 6 chair built in NZ locally with some easily interchangeable spares available. It looks like there is plenty of power to haul firewood too! It is not an "indoor chair". As are many of the Kiwi made items, it is built for durability. I am sure your cats might enjoy riding. My cat would ride on my lap in the chair because our walks were too long for her.
There is a rather expensive gear driven chair made in Texas which has tandem seating options as well as ag tires. It can also be fitted with a mower on the front which is neat. You can mow the lawn while hubby cleans the house! Then he can sit on the rear seat and you can ride to town!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Welcome!
