Aa
Denial and the future
I seem to be at odds with myself.
I just moved across the country for a new job. I'm very much enjoying the new town and the new job. I'm meeting new people and making plans for pursuing personal and professional goals. I keep going forward as if I'm actually likely to achieve all these things.
My body, on the other hand, just keeps going south. In the past five months I have seen my walking range decrease such that even short walks fill me with dread and anxiety. As soon as I stand up, I wish I could sit down again, even though sitting's not much of a relief. The stiffness is worse, the paresthesias more intense, the numbness number, and my body heavier. I think I am weaker and I sometimes wonder if it is the spasticity holding me up. My arms feel weaker, too, and my typing, especially with my left hand, is deteriorating. My body feels lousy all the time. When I don't catch myself in time and start contemplating living the rest of my life like this, I despair. I feel like such a whiner writing all this when I know many people on the forum and around the world suffer so much more than I do, but I seem to be in a rut of feeling sorry for myself recently.
During the transition period of wrapping up things at the old job, moving, and getting oriented at the new job, I was all I could do to keep on going and I was completely consumed by doing the next thing in front of me. So I have largely been ignoring all this worsening.
Now that I have a little breathing room to think, I feel like I should be preparing or planning in some way. My progression has always been slow. Even as I freak out and adapt to new limitations, the time when I might become nonfunctional at getting through the minimum of things I need to do during the day seemed safely in the future. Now I am starting to wonder if I better not rethink that before I might wait too long.
What sort of preparations are people making for less functional futures? How do you find that elusive balance between following dreams and realism?
sho
I just moved across the country for a new job. I'm very much enjoying the new town and the new job. I'm meeting new people and making plans for pursuing personal and professional goals. I keep going forward as if I'm actually likely to achieve all these things.
My body, on the other hand, just keeps going south. In the past five months I have seen my walking range decrease such that even short walks fill me with dread and anxiety. As soon as I stand up, I wish I could sit down again, even though sitting's not much of a relief. The stiffness is worse, the paresthesias more intense, the numbness number, and my body heavier. I think I am weaker and I sometimes wonder if it is the spasticity holding me up. My arms feel weaker, too, and my typing, especially with my left hand, is deteriorating. My body feels lousy all the time. When I don't catch myself in time and start contemplating living the rest of my life like this, I despair. I feel like such a whiner writing all this when I know many people on the forum and around the world suffer so much more than I do, but I seem to be in a rut of feeling sorry for myself recently.
During the transition period of wrapping up things at the old job, moving, and getting oriented at the new job, I was all I could do to keep on going and I was completely consumed by doing the next thing in front of me. So I have largely been ignoring all this worsening.
Now that I have a little breathing room to think, I feel like I should be preparing or planning in some way. My progression has always been slow. Even as I freak out and adapt to new limitations, the time when I might become nonfunctional at getting through the minimum of things I need to do during the day seemed safely in the future. Now I am starting to wonder if I better not rethink that before I might wait too long.
What sort of preparations are people making for less functional futures? How do you find that elusive balance between following dreams and realism?
sho
Sho,
Regarding the journals....uuummm busted. I haven't used them at all but with all the "stuff" being thrown in my direction from possible permanent double vision, on top of the optic neuritis and SS disability and LTD.....it's getting a little crazy around here so journaling would be the perfect release, especially since tomorrow ismy brother's birthday and he sent them as a gift to me,I will certainly pull them out and begin!
Thank you for the reminder. BTW, can I borrow or lease your memory on a short term basis?
Ren
Regarding the journals....uuummm busted. I haven't used them at all but with all the "stuff" being thrown in my direction from possible permanent double vision, on top of the optic neuritis and SS disability and LTD.....it's getting a little crazy around here so journaling would be the perfect release, especially since tomorrow ismy brother's birthday and he sent them as a gift to me,I will certainly pull them out and begin!
Thank you for the reminder. BTW, can I borrow or lease your memory on a short term basis?
Ren
Well, I am following through on one of my New Year's resolutions and have a PT appointment for tomorrow, though I'm not sure now if the neuro referred me to a neuro-literate one or not. We'll see.
@Ren Are you writing in those journals?
@Sarah I suppose the tree trunk pic doesn't reveal much except that I tend to be a private person. Thanks for the perceptive comments. I guess we all have to get on with accepting our me of the current moment, unpleasant as it can be. I wish somehow there would be this great breakthrough and we could all shed the heavy cloak of MS.
sho
@Ren Are you writing in those journals?
@Sarah I suppose the tree trunk pic doesn't reveal much except that I tend to be a private person. Thanks for the perceptive comments. I guess we all have to get on with accepting our me of the current moment, unpleasant as it can be. I wish somehow there would be this great breakthrough and we could all shed the heavy cloak of MS.
sho
Hi Sho
I often check out someone's photos before I write to give me an image of the person I am writing to and the tree trunk and graphs gave me a bit of a blank!!! We have exchanged a few posts in the past and the best I could come up with is a sense of someone who is very strong inside (like the tree trunk) but I am wondering if she feels like her roots are giving way a little as her body is beginning to not respond in the way she wants it to.
Progression of MS is something that we all fear and this has been on my mind a little recently. I think this is a great thread and really helpful as by sharing what you are going through you help others to evaluate their own positions. I feel that I just want to throw off this heavy cloak of MS that sometimes makes my legs feel like lead and my body ache so that all I need is to lie down and rest. Often the fatigue just will not go away and I do not want to be like this for the rest of my life.
But I know that this is how it is, and I cannot change it so I have to accept the new me and get on with it. I celebrate your achievement of starting a new job and getting on with all the changes that you have encountered. What I hear is that you have coped well with this and do not think that stress is responsible for the progression of your MS, but that this would have been the case wherever you are. However I echo everyone else's suggestions that you need to take care of yourself, be kind and love yourself...you are definitely worth it and a valued member of this forum.
With love and hugs
Sarah x
I often check out someone's photos before I write to give me an image of the person I am writing to and the tree trunk and graphs gave me a bit of a blank!!! We have exchanged a few posts in the past and the best I could come up with is a sense of someone who is very strong inside (like the tree trunk) but I am wondering if she feels like her roots are giving way a little as her body is beginning to not respond in the way she wants it to.
Progression of MS is something that we all fear and this has been on my mind a little recently. I think this is a great thread and really helpful as by sharing what you are going through you help others to evaluate their own positions. I feel that I just want to throw off this heavy cloak of MS that sometimes makes my legs feel like lead and my body ache so that all I need is to lie down and rest. Often the fatigue just will not go away and I do not want to be like this for the rest of my life.
But I know that this is how it is, and I cannot change it so I have to accept the new me and get on with it. I celebrate your achievement of starting a new job and getting on with all the changes that you have encountered. What I hear is that you have coped well with this and do not think that stress is responsible for the progression of your MS, but that this would have been the case wherever you are. However I echo everyone else's suggestions that you need to take care of yourself, be kind and love yourself...you are definitely worth it and a valued member of this forum.
With love and hugs
Sarah x
Sho,
I second Julie's suggestion (insistence) in getting some PT with a neuro literate therapist! My therapist prefers neuro patients but does dancers as well (she was professional ballet dancer). Her knowledge of subtle movements and how the body moves and works is outstanding!!!.
My therapist is always noticing symptoms before I mention them and asks if I have this or that and then the answer is no until about a month later. She notices the subtleties in everything. I feel blessed to have her. Do insist on a neuro literate therapist.
My brother just sent me 2 journals unexpectedly so I guess I have no more excuses not to start my journaling.
Oh, BTW my MS neuro is also a neuromuscular consultant, so perhaps you can find a two-for-one.
Keep us updated as things evolve and you get that neuro literate physical therpaist,
Ren
I second Julie's suggestion (insistence) in getting some PT with a neuro literate therapist! My therapist prefers neuro patients but does dancers as well (she was professional ballet dancer). Her knowledge of subtle movements and how the body moves and works is outstanding!!!.
My therapist is always noticing symptoms before I mention them and asks if I have this or that and then the answer is no until about a month later. She notices the subtleties in everything. I feel blessed to have her. Do insist on a neuro literate therapist.
My brother just sent me 2 journals unexpectedly so I guess I have no more excuses not to start my journaling.
Oh, BTW my MS neuro is also a neuromuscular consultant, so perhaps you can find a two-for-one.
Keep us updated as things evolve and you get that neuro literate physical therpaist,
Ren
Thanks again, everybody.
@Ren It is so helpful to write this stuff down. I always kick myself when I can't remember stuff like how it was before (who remembers what it was like to feel normal?) or when something changed. I increased my baclofen a lot in the last six months and neglected to write down when and how, which I now regret. Up until recently, I was really good about recording my meds on PatientsLikeMe. I'm glad the Ketamine is helping. I can't even deal well with my puny little pain so I can't begin to imagine how hard that would be.
@Julie I am definitely going to follow up with PT and hope that I can find a better one. My gait and walking are significantly worse than when you saw me, which is not a good thing. I had not considered a neuromuscular doc, but will look into that. No one has every brought up gray matter damage, although I do have several good-sized c-spine lesions so that does seem to make the neuros think those are causing a lot of my problems.
sho
@Ren It is so helpful to write this stuff down. I always kick myself when I can't remember stuff like how it was before (who remembers what it was like to feel normal?) or when something changed. I increased my baclofen a lot in the last six months and neglected to write down when and how, which I now regret. Up until recently, I was really good about recording my meds on PatientsLikeMe. I'm glad the Ketamine is helping. I can't even deal well with my puny little pain so I can't begin to imagine how hard that would be.
@Julie I am definitely going to follow up with PT and hope that I can find a better one. My gait and walking are significantly worse than when you saw me, which is not a good thing. I had not considered a neuromuscular doc, but will look into that. No one has every brought up gray matter damage, although I do have several good-sized c-spine lesions so that does seem to make the neuros think those are causing a lot of my problems.
sho
Thank you for taking the time to relay your experiences of late. It is unbelievably helpful for you and all that read it. I certainly benefited from reading it.
I have seen you walk. I can see a problem right off and a neuro not catching the subtle but distictly spastic gait are missing a great deal. You mentioned that you were interested if there is a parallel or alternative diagnosis besides MS. Have you considered going to a neuromuscular doctor? He/she might do many of the same tests, but there are other things they look for that an MS or general neuro might not consider. Just a thought.
Your new neuro sounds like he is on the ball. Has he or any of your previous neuros ever suggested that you may have more gray matter lesions/damage that is not showing up on the MRIs? Your symptoms and low amount of lesions in the brain may point in that direction.
One more thing and I'll stop there...I am happy to hear that you will look into PT. I highly suggest that you ask for and even insist on a PT who has neurological experience and getting someone with experience with MS would be icing on the cake. It made all the difference in my case. I was frustrated with the PTs I'd had who were primarily ortho trained.
Sounds like the new place is good for you. I wish you good-luck.
julie
I have seen you walk. I can see a problem right off and a neuro not catching the subtle but distictly spastic gait are missing a great deal. You mentioned that you were interested if there is a parallel or alternative diagnosis besides MS. Have you considered going to a neuromuscular doctor? He/she might do many of the same tests, but there are other things they look for that an MS or general neuro might not consider. Just a thought.
Your new neuro sounds like he is on the ball. Has he or any of your previous neuros ever suggested that you may have more gray matter lesions/damage that is not showing up on the MRIs? Your symptoms and low amount of lesions in the brain may point in that direction.
One more thing and I'll stop there...I am happy to hear that you will look into PT. I highly suggest that you ask for and even insist on a PT who has neurological experience and getting someone with experience with MS would be icing on the cake. It made all the difference in my case. I was frustrated with the PTs I'd had who were primarily ortho trained.
Sounds like the new place is good for you. I wish you good-luck.
julie
Sho,
Like Lu said, no apologies needed. I liked your post as it was a good example of how I should be writing my own journal of how things occur. Right now , all I have are small remarks on the family calendar, i.e. leg pain started, dropped dishes, again,etc.
As for doubting the diagnosis, I too, play that game. But, actually out of all the specialists I've seen only 2 out of 10 who would confirm the MS diagnosis. But if it's not MS the what the heck is it? My current neuro told me either way, dx or not, I would receive the same treatment so it really didn't matter in the long run.
I hope that once you have really settled down into a new groove, that your body will relax and your symptoms improve. My current relapse is going on 6 months and the MS is bordering calling it my new norm. I will say that the Ketamine infusions I've received DO help. I've been negligent in writing about these infusions but the bottom line is I have seen some improvement in various areas. Too bad one of them isn't fatigue.
Sending wishes for a better behaving body and a good MS neuro to sort it all out.
Ren
Like Lu said, no apologies needed. I liked your post as it was a good example of how I should be writing my own journal of how things occur. Right now , all I have are small remarks on the family calendar, i.e. leg pain started, dropped dishes, again,etc.
As for doubting the diagnosis, I too, play that game. But, actually out of all the specialists I've seen only 2 out of 10 who would confirm the MS diagnosis. But if it's not MS the what the heck is it? My current neuro told me either way, dx or not, I would receive the same treatment so it really didn't matter in the long run.
I hope that once you have really settled down into a new groove, that your body will relax and your symptoms improve. My current relapse is going on 6 months and the MS is bordering calling it my new norm. I will say that the Ketamine infusions I've received DO help. I've been negligent in writing about these infusions but the bottom line is I have seen some improvement in various areas. Too bad one of them isn't fatigue.
Sending wishes for a better behaving body and a good MS neuro to sort it all out.
Ren
Sorry you are going through so much. Hang in there. Even though I have MS Symptoms everyday I still think the Doctors got it wrong. Sometimes I do not believe I have asthma either.
Alex
Alex
no apology needed, sho. I read every word and always appreciate your thoughtful updates. I have to laugh because I am beginning to think every last one of us has doubts about our diagnosis, or is that wishful thinking?
Here's hoping the new neuro is worth his copay and become an invested participant in hugs to you, Lu
Here's hoping the new neuro is worth his copay and become an invested participant in hugs to you, Lu
I wanted to belatedly say thank you to everyone for you good wishes and optimism. Unfortunately, although I'm sure all the stress was not helpful, things have not gotten better as I've gotten more settled. In fact, this general pattern of slow but steady decline starting in spring or early summer and continuing for months is pretty typical for me.
Pastor Dan: I have moved to a much cloudier climate. Perhaps I do need to invest in one of those indoor sunshine machines.
Mary: No one seems to think I'm RRMS now and I'm not sure how much I ever was. I did have what, in retrospect, was a short (maybe 10 days), discrete incident of mild sensory symptoms that is hard to explain as anything other than the MS. Since then I have had one, maybe more?, of what one neuro called "subtle relapses with a lot of residual deficits." Basically, although I have ups and downs, once I've lost something, I don't seem to get substantial improvements. Another neuro told me that technically, if you've ever had even one relapse and you're progressive now, you're SPMS. So that's me, technically SPMS.
I did see a neuro just before I moved who was willing to try steroids since I'd never been on them. IV just wasn't logistically possible, but I did try one round of oral steroids. He said it might possibly buy me six months. On the first day, I thought I was somewhat better, but I think it must have been wishful thinking because it wore off pretty quickly.
It's really obvious that I can't walk as far as I used to. Even doing stuff around the house, like trying to prepare a lunch for work, is harder on me than it used to me. Some days, when I'm already tired, it doesn't take that long for me to get to the point where I'm struggling to stay upright. I find myself locking my knees and, for some reason, bending forward at the waist like a little old lady,
With the increasing stiffness in my legs and numbness in my feet, I have lost confidence in my balance and am much more inclined to use the cane outdoors. I'm probably losing muscle strength since I'm walking even less than before.
The burning paresthesias have been pretty bad some days. A couple days I even had to take something to go to sleep. Usually, I am okay with falling asleep because I can relax into the sensations and I am okay when I am absorbed in something like work or reading. The paresthesias bother me most when I want to concentrate on something, but I also want to be present, like when I'm having a conversation.
I did see a new neuro. He seemed pleasant and knowledgeable, but I don't think I've ever met a doctor who talks so fast.
I was having a relatively good day and the appointment was in the morning, of course. The neuro even said something like "you look pretty good." I know ignorant but well-meaning people say that, but I was a bit disappointed to hear that from a neuro. He also said "I can tell something's wrong." That's the second time a neuro has told me that. There always seems to be a big gap between the neuro's perception of how I am in the exam room and how I feel when actually trying to deal with the challenges of daily life. I'm not sure why that is. I don't even know how I'd get by without my husband's help and yet there never seems to be that much wrong with me when I'm in a doctor's office.
I complained about what seems to be increasing spasticity and also told him that I had gone up to 80mg/day without it seeming to have much impact. Interestingly, he wants me to try taking less baclofen. I think this is because I said taking more didn't seem to make the spasticity better. That still doesn't completely make sense to me since I want more help rather than less for the spasticity, but I guess his point is that it's not a good idea to take any more than absolutely necessary.
He did however give me a prescription for gabapentin to help with the paresthesias and maybe also with the spasticity. He only wants me to change one thing at a time since otherwise it's impossible to untangle what's causing what.
I can't seem to make out how much of the discomfort in my legs is coming from the spasticity and how much from the paresthesias. Clearly it's at least partially both. I have asked numerous neuros about this and have yet to get a useful answer from any of them. The most promising lead I got was to see a PT. I'm not sure if that meant the neuro couldn't tell or he didn't have time to deal with it. The new neuro did say that I have a 2+ spastic gait, whatever that means. Does anyone know what scale is used to measure spasticity and gait?
He's one of those neuros who doesn't believe in follow-up MRIs unless it will impact some treatment decision. My brain never seems to be very interesting (most of the reports involve the words minimal and no change), but I am curious as to what the lesions in my spine are doing. I suppose he's right, though, that it doesn't matter what the MRI shows and unnecessary tests are one of the things driving up the cost of healthcare in this country. The neuro did say something interesting about MRIs in progressive MS. Even if the lesions on MRI don't look different and aren't increasing, he said they know that the existing lesions are not static. They're undergoing detrimental chemical cascades (unfortunately, that's all I can make out from my notes and like I said, he was talking very quickly).
I tried to interest him in revisiting my MS dx since I sometimes have doubts, especially since my symptoms seem to come on quite symmetrically and largely started distally and moved inward, but he wouldn't bite. Neither would the last neuro. I probably have had a more thorough rule-out of the MS mimics than most people, but I am still plagued by doubts.
Sorry for writing another book. Even if no one read it, it does help me organize my thoughts.
sho
Pastor Dan: I have moved to a much cloudier climate. Perhaps I do need to invest in one of those indoor sunshine machines.
Mary: No one seems to think I'm RRMS now and I'm not sure how much I ever was. I did have what, in retrospect, was a short (maybe 10 days), discrete incident of mild sensory symptoms that is hard to explain as anything other than the MS. Since then I have had one, maybe more?, of what one neuro called "subtle relapses with a lot of residual deficits." Basically, although I have ups and downs, once I've lost something, I don't seem to get substantial improvements. Another neuro told me that technically, if you've ever had even one relapse and you're progressive now, you're SPMS. So that's me, technically SPMS.
I did see a neuro just before I moved who was willing to try steroids since I'd never been on them. IV just wasn't logistically possible, but I did try one round of oral steroids. He said it might possibly buy me six months. On the first day, I thought I was somewhat better, but I think it must have been wishful thinking because it wore off pretty quickly.
It's really obvious that I can't walk as far as I used to. Even doing stuff around the house, like trying to prepare a lunch for work, is harder on me than it used to me. Some days, when I'm already tired, it doesn't take that long for me to get to the point where I'm struggling to stay upright. I find myself locking my knees and, for some reason, bending forward at the waist like a little old lady,
With the increasing stiffness in my legs and numbness in my feet, I have lost confidence in my balance and am much more inclined to use the cane outdoors. I'm probably losing muscle strength since I'm walking even less than before.
The burning paresthesias have been pretty bad some days. A couple days I even had to take something to go to sleep. Usually, I am okay with falling asleep because I can relax into the sensations and I am okay when I am absorbed in something like work or reading. The paresthesias bother me most when I want to concentrate on something, but I also want to be present, like when I'm having a conversation.
I did see a new neuro. He seemed pleasant and knowledgeable, but I don't think I've ever met a doctor who talks so fast.
I was having a relatively good day and the appointment was in the morning, of course. The neuro even said something like "you look pretty good." I know ignorant but well-meaning people say that, but I was a bit disappointed to hear that from a neuro. He also said "I can tell something's wrong." That's the second time a neuro has told me that. There always seems to be a big gap between the neuro's perception of how I am in the exam room and how I feel when actually trying to deal with the challenges of daily life. I'm not sure why that is. I don't even know how I'd get by without my husband's help and yet there never seems to be that much wrong with me when I'm in a doctor's office.
I complained about what seems to be increasing spasticity and also told him that I had gone up to 80mg/day without it seeming to have much impact. Interestingly, he wants me to try taking less baclofen. I think this is because I said taking more didn't seem to make the spasticity better. That still doesn't completely make sense to me since I want more help rather than less for the spasticity, but I guess his point is that it's not a good idea to take any more than absolutely necessary.
He did however give me a prescription for gabapentin to help with the paresthesias and maybe also with the spasticity. He only wants me to change one thing at a time since otherwise it's impossible to untangle what's causing what.
I can't seem to make out how much of the discomfort in my legs is coming from the spasticity and how much from the paresthesias. Clearly it's at least partially both. I have asked numerous neuros about this and have yet to get a useful answer from any of them. The most promising lead I got was to see a PT. I'm not sure if that meant the neuro couldn't tell or he didn't have time to deal with it. The new neuro did say that I have a 2+ spastic gait, whatever that means. Does anyone know what scale is used to measure spasticity and gait?
He's one of those neuros who doesn't believe in follow-up MRIs unless it will impact some treatment decision. My brain never seems to be very interesting (most of the reports involve the words minimal and no change), but I am curious as to what the lesions in my spine are doing. I suppose he's right, though, that it doesn't matter what the MRI shows and unnecessary tests are one of the things driving up the cost of healthcare in this country. The neuro did say something interesting about MRIs in progressive MS. Even if the lesions on MRI don't look different and aren't increasing, he said they know that the existing lesions are not static. They're undergoing detrimental chemical cascades (unfortunately, that's all I can make out from my notes and like I said, he was talking very quickly).
I tried to interest him in revisiting my MS dx since I sometimes have doubts, especially since my symptoms seem to come on quite symmetrically and largely started distally and moved inward, but he wouldn't bite. Neither would the last neuro. I probably have had a more thorough rule-out of the MS mimics than most people, but I am still plagued by doubts.
Sorry for writing another book. Even if no one read it, it does help me organize my thoughts.
sho
Don't forget that it's November. Forgive me, but I've forgotten from where and to where you moved. Are you getting more or less sunlight than before? 'Tis the season for SAD flares.
JJ, I love the shaking box idea.
JJ, I love the shaking box idea.
Do you have a new MS doc where you are now? If not, I'd be looking for a good one ASAP. A course of IV steroids may be in order and very helpful.
It's a sure thing that stress isn't a cause of MS. There doesn't seem to be certainty amoung the experts about the role it plays in exacerbations. But there's sure been a lot of examples here of members having flairs follow major life stressors. YES, you quality -- in spades.
If this was a simple stress reaction I think you would have been feeling better by now. If all this change has triggered a true relapse, it will take a while to regain your ground and a course of steroids could help (if you are willing to go that route).
Has your course been Relapsing Remitting in the past? If so, I would think it reasonable to look forward to regaining some (even much) of the function you have recently lost. Even so, there's nothing like a bad spell to remind us that our future plans will always need stand-by alternatives --- or to remind us to go ahead and live each moment to the fullest as long as we are able to do so.
Congratulations on following your dreams forward and best wishes for a rapid return of strength.
Mary
It's a sure thing that stress isn't a cause of MS. There doesn't seem to be certainty amoung the experts about the role it plays in exacerbations. But there's sure been a lot of examples here of members having flairs follow major life stressors. YES, you quality -- in spades.
If this was a simple stress reaction I think you would have been feeling better by now. If all this change has triggered a true relapse, it will take a while to regain your ground and a course of steroids could help (if you are willing to go that route).
Has your course been Relapsing Remitting in the past? If so, I would think it reasonable to look forward to regaining some (even much) of the function you have recently lost. Even so, there's nothing like a bad spell to remind us that our future plans will always need stand-by alternatives --- or to remind us to go ahead and live each moment to the fullest as long as we are able to do so.
Congratulations on following your dreams forward and best wishes for a rapid return of strength.
Mary
Hey, Sho,
I've got to agree with JJ on this - you've been through a lot! Give yourself a week or two to settle down (at least).
As for looking to the future, I'm trying to" prepare for the worst while hoping for the best". That said, I'm also in blissful denial on the days I feel good. I'm kind of taking it one day at a time. This disease has forced me to look at life that way, and in the end, for me, that's really the best thing.
Good luck in your new position!
(((Hugs)))
Lisa
I've got to agree with JJ on this - you've been through a lot! Give yourself a week or two to settle down (at least).
As for looking to the future, I'm trying to" prepare for the worst while hoping for the best". That said, I'm also in blissful denial on the days I feel good. I'm kind of taking it one day at a time. This disease has forced me to look at life that way, and in the end, for me, that's really the best thing.
Good luck in your new position!
(((Hugs)))
Lisa
COMMUNITY LEADER
Sho, is it posible that the reason you are functioning less is because you've just finished working at a place your familiar with, packed up and moved across the country, started a new position and are still finding your way. Everything you've done of late is stressful even for a 'normal' person, you've been through a lot, both mentally and physically!
Try and give your self some time to adjust, it wouldn't hurt to put some fun back in your life, be indulgent and do something just for YOU!
To both your questions i'm sorry but i havent any answer, I just adjust and set little-er goals. I have my eye on a really cool mobility scooter, i'm not there yet but if one day i am i've already thought on the subject. Beyond that, my dd has said she'll turn off the machine (dh is planning on a huge sign saying 'dont touch' if that ever crops up lol) and dh also knows i want to be cremated, put in a little carved box that without warning shakes, just to let everyone know i'm still watching. Hmmmm still slightly morbid but i would of had those conversations regardless.
I think taking one step at a time is do-able, i believe in planning ahead but sometimes no one wants to go there!
HUGS........JJ
Try and give your self some time to adjust, it wouldn't hurt to put some fun back in your life, be indulgent and do something just for YOU!
To both your questions i'm sorry but i havent any answer, I just adjust and set little-er goals. I have my eye on a really cool mobility scooter, i'm not there yet but if one day i am i've already thought on the subject. Beyond that, my dd has said she'll turn off the machine (dh is planning on a huge sign saying 'dont touch' if that ever crops up lol) and dh also knows i want to be cremated, put in a little carved box that without warning shakes, just to let everyone know i'm still watching. Hmmmm still slightly morbid but i would of had those conversations regardless.
I think taking one step at a time is do-able, i believe in planning ahead but sometimes no one wants to go there!
HUGS........JJ
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Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
