I know it's a blow to have to use assisting devices but we do have to learn how to adapt so we can still have the energy we need to get by. And acknowledging that these devices will make our lives easier and less stressful is a good way to learn accept to them.
They have some really cute canes out there on the market. You can find one to use that looks more like an accessory to your clothes than a medical device. Your local drugstore may carry them or else there are websites that sell them - try "fancy canes" or "fashionable canes" or something like that. I have a really cute one with all different pastel butterflies on it. It's not depressing at all to look at and it surely helps me on my bad days and bad moments! I kind of think of it like a friend, now.
I hope this helps some. I know a lot is going on with you all at once and fibro seems to go like that. Just hang tight and go with the flow. Taking care of yourself so that you are safe and sound is an important step towards that goal. If you need something to help you to keep well and stay balanced, then so be it. You can definitely get through this trying time, Laurie!
Oh Sheila! Good lord! That's truly terrible. I've had one. I wouldn't want to repeat it again. You most definitely do need something safe and secure to help to keep you up and away from the ground. I used to deal with people using rollator walkers when I worked as an Activity Director and those devices are really cool. It sounds like a really good idea for you to use it because hitting the ground, and hitting it hard enough to get a concussion, is not good for you at all. Especially with all of the other stuff going on.
Hey barb - I, too, have yet gotten into my shower with my clothes on - however I HAVE stepped into it with my underwear on! LOL Not a pretty sight and even though I live alone, I am always embarrassed when I make this mistake. Hugs! Laurie
Wow, you've made a great point to Laurie about checking her meds to be sure that they aren't contributing to her falls - or the mental state/fatigue that leads up to them. I never even thought of that aspect but it's a great point.
Also, you're right about some people with MS. There is a new drug that does help some people with MS to stay active and working. And yes, fibro is SERIOUSLY underrated in terms of the detrimental aspects it has. When you think of what each one of us has individually suffered with it, and then collectively what we've suffered from it - whew! At some point the medical profession will catch on and acknowledge the suffering that many fibro people experience.
And falling and not being able to pick yourself back up or get up out of a bathtub - yes, yes and yes. I was delivering meals to the elderly during a particularly bad snow storm when I fell into a snowbank and could not, could not get up. At all. Because of the fibro pain in my knees. I was very fortunate that someone was snow blowing his driveway out and helped to pull me up. But it was hard! So yes, yes, yes, we all do need to do whatever we can to take care of ourselves to keep ourselves from falling down. Because it's a serious concern of ours. We do not need to fall.
Hi deb - thanks for responding to my post! My goodness - you are going through a lot! I think all of us here understand that it 'never ends!' It certainly FEELS that way - doesn't it? I am worried, however, about the possible surgeries for your neck and spine. My father was an Orthepedic (bone) surgeon - and he always told me that neck, back and spine - when looking at surgery - should be the LAST thing you should do - if all else fails. Even today - I have talked to people that have had these kinds of surgery - and they are in more pain then before their operations. So, please be very careful in the choices you make!!
I am so sorry you are going through so much, deb. It's very challenging to have all that we do and for me, this website really carries the weight in helping me to feel better and get new info all the time. Please take care of yourself and don't forget.....think very carefully before you decide on those surgeries?? Love and Hugs! Laurie
Oh Sheila. Bless your heart. You are one strong woman. I'm glad you've upgraded your walker. You make sure not to do any light bulb changing. There's always a neighbor or someone willing to help with things like that. I've had to learn that. My husband caught me on a rolling office chair trying to reach a high light bulb. Now, I admit, I was just plain stupid in that case. You take care of YOU.
Hi barb - I too can't take anymore baths. My poor hips can't support the weight of my trying to stand up to get OUT of the darn thing! I usually shower, but would always take a bath when feeling really sore or off-balanced. Not any more!
Since I have been stumbling and falling more often now, I am extremely careful. If I turn around too quickly, there I go - down on the floor! People will walk down the street looking sideways or behind them. If I do this - I fall. So, I must always stop my walking and then look around. I used to be able to get my keys out of my purse while walking, now I have to stop, again. Get the keys, THEN continue on. If I am not careful - I will slow down and be like a turtle crossing the highway! It would take forever to cross that road! Hugs! Laurie
Thank you for that! I go back and forth literally every single day. Yesterday I was saying I really have to to something about these attacks or episodes and today I was reading a paper about porphyria (http://truemedicine.com.au/wp-content/uploads/1801porphyria.pdf) and decided to get checked for that and put off the surgery. If I have porphyria, not only would the surgery not help with my worst symptoms, it would likely make them worse.
I am wearing the neck brace now since I just got done studying. But after two weeks of wearing it almost 24/7, I generally only wear it at night now and when I'm studying since I can't stop myself from looking down when I'm studying. I don't wear it when working on the computer since that is all very ergonomically correct.
But I think I will be too chicken to get it done since my neck pain is so much less now than it was and I'm sure it will likely make it worse and I'll still have the nervous system damage too.
Wow, you have so much going on. No wonder you feel so badly! From what I understand, Ehlers Danlos Syndrome has very similar symptoms to fibro. In fact, several people here have both fibro and EDS. From what I've (unscientifically) observed those with both are in much more pain than those with just fibro.
I really like your attitude and bet it's why you didn't end up in a wheelchair this year. Positive thinking does help with this illness. Doesn't cure it or change it but makes it easier to cope a lot of the time. (But that doesn't mean I don't understand it when people don't feel positive - oh yeah, I do get it! This isn't an illness you can just will away.)
I really hope you don't have porphyria. Actually many of it's symptoms are like many auto-immune illnesses. But because it can be life-threatening in certain cases, you really should get it checked out to see if you have it or not. Again, I hope not.
Yes, you're right. It sometimes takes years to get the answers. I think that should be the official motto of this site. Including the "Be strong and patient." They really fit.
I not only wobble, trip over things, and bruise easily, but my adult son was flabbergasted when I was just standing there and fell over to one side. He knows I have osteoporosis, so he freaked out and grabbed me. Fortunately I have a habit of grabbing whatever is near to soften the fall. But to fall when just standing was well...in a twisted humorous way...rather funny. We celebrate when a baby stands and then walks. It looks like we're back to celebrating when mom can stand and walk! :)
I have a long history of ankle sprains which have left my ankles unstable. Also, because of spinal injury, when I get tired one leg drags when I walk. My stamina is much better when I use a rollator (walker with wheels) and the walker carries the weight of my meds bag and purse. That also relieves pressure on my spine.
I find that my core muscles - waist & midback - mess up my balance because one side or the other just seems to give out. At least with the rollator I can grab hold and avoid falling. I use one in public, and I am now looking for a narrow one that will fit through the doorways in my house.
Hi Scribelle! These are the 'combat sneakers' I wear that help keep my foot from rolling over. They are on the expensive side, but are built tough and help keep me upright! I go to a store that measures my foot for them.
I switched to Kindle and Nook, as I am an avid reader. Regular books were too heavy to hold. Now, with my cervical spine injury, it hurts to look down to read. I now have a sturdy book holder even for my electronic books, and I am considering pulling out my neck brace as well. There is so much that we do that requires looking down. It's so hard to avoid! I thing you are wise to be aware of ergonomics. Kudos!
At one point, after the neck injury, I had to wear the neck brace 24/7. Now it collects dust in the drawer of my end table. Time to take it out again. Ah....well, whatever works!
You make a good point about making our assistive devices beautiful to look at. I was so shy about using a cane on my first Christmas with it. My son wrapped red ribbon all along the length, and ended it with a small sprig of holly just before the handle. That was such a beautiful thing to do, and it taught me that it is important to consider beauty as well as function. When they look beautiful, not only are our spirits lifted, but we are more inclined to use them!
That would be a whole lot more fashionable than squeezing ankle braces in them. Also a lot more comfortable. Thanks! A good pair of shoes is worth the money - cheaper than broken hips, trips to emergency rooms, etc. I would rather buy a good pair of shoes that supports well!