I am so sorry. That sounds horrible. It is so scary, sad, frustrating, and more to lose the things we love to do. Please hang in there. Things will get better........then they will get worse again. The amazing part is you will adapt to this. It is really hard though and we can all relate to your pain and frustration.
I get in a place where I just want to be mad and sad or whatever. It does not help to try and put on a happy face. Just feel whatever it is you are going to feel. Be aware of what you are feeling and just let it run its course. You will find joy in this life again. We are all here for you. Vent as much as you want.
I am praying for you even if you are having trouble with that
Shoot, I’m so sorry you’re having such a crummy time. I just wanted to post and let you know I’m thinking about you and you have my support. I have been so mad I’ve screamed a time or two myself. As Gretchen said, vent away, you are among friends here who understand. (((Katie)))
Hi Gretchen and Sunny, thanks for listening to me and the compassion. I don't know, I just feel like I am never going to be able to enjoy the horses or art like I used to and it is ripping me apart. I was so shook up after the fall and not hurt except for pride so I have to be thankful for that.
I didn't tell anyone I went out to ride early this morning, I usually never do, I have always just gone. You know, peacefulness in the woods, trees turning. Anyway, I especially didnt want my family to know I fell because I feared then they would tell me no more riding. Even though it was my friends horse I was riding ( this mare is a swertheart, very broke, very gentle) I just thought after I fell, 'geese, the horses I used to ride were way more spirited and I can't even keep balance one this one'. I was anticipating the mare to bolt becasue I saw the deer before she did and got forward in the saddle, she sidestepped and crow hopped at the same time and I just lost it...more so emotionally. Now I am half afraid of riding again, I was lucky I didnt break my neck. We were on a decline into a ravine, a slide so to speak. Like I said...pride got hurt more.
I dont want to just stop riding, painting ect...I felt fine when I went out this am, so how now do I tell if this or when this will happen again.? I know it was balance. My balance was terrible at pt today.
I want to not feel this bad, I know there are folks in alot worse shape than me. I about peed my pants walking her back to our barn from nerves shaking horribly. Right now I dont even want to go back up to the barn...for anything. But I know that will change cause I cant stay away from the horses, they have been a huge part of my life.
Gretchen, betting you can understand the horse thing. How do you manage on your bad days? Has MS flair ever hit you when you were in the saddle? I know...I need to let this go. I am going up to bed now and will pray. It's time.
You gals are terrific. Are there things you guys have had to 'give up' from MS that you used to enjoy and if so...how did you move past it? ((((((((Sunny-Gretchen))))Thank you.
First of all, I want to say I hope you have a good sleep, as sometimes that in and of itself can help tremendously by simply giving you a break. Also, the emotions you are experiencing are very normal. A lot of people liken the response to a diagnosis like MS to dealing with a death, with all those stages of grief one goes through when faced with a death. Just know that it is okay to be angry and sad, but you will get through this.
I am not sure what my official dx is at this point, CIS or MS, so please take the rest of this post for what it’s worth. I met a woman who has had MS for almost as long as I’ve been alive. At the time I “had” MS and was struggling to continue working, had just started Copaxone, and was basically a big mess. I was having a lot of trouble with that unpredictability with symptoms that you mention above. I have a lesion in my cerebellum which causes balance and vertigo issues among other things. Even after the initial flare calmed down, the residuals would get worse in ways that made it quite hard to work, drive etc.
The one time I met this woman in person was at a dinner. I was already feeling pretty lousy, but went went anyhow, and didn't tell anyone when I started to feel even worse. I sat there and got dizzier and dizzier, but I just took a deep breath and thought, oh, it will get better. By the time it got so bad I knew I had to do something, things were spinning so badly I couldn’t tell up from down. At that point I was stuck in a restaurant with a tableful of horrified dinner guests, and we all sat there long after dinner because I couldn’t move.
I talked to the woman later, and she told me to give myself some time, and I would learn to cope with this better. She said that in the beginning, the body is freaking out and doesn’t know how to deal with all the new issues. However, over time, I would learn to adapt. She also said I would learn to read the cues my body was giving me, and stop before I overdid or got into too much trouble. I was kind of doubtful, but she was right.
I am now often able to pick up cues which warn me when these symptoms are going to get worse. Now I try to act right away by taking anti-nausea meds, saying I need to leave if I am out, lying down or getting my head against a solid wall so I can tell I am really not spinning, etc. I’ve also found ways to make things easier on a day to day basis, such as touching walls, looking down etc. I also know that certain things will aggravate the residual issues I have, such as heat, long periods of insomnia, fatigue, stress etc, and that while I am not a morning person, I am most able to function in the morning before the fatigue kicks in.
The point of this long middle of the night ramble is to say that you, too, will begin to pick up on your body’s cues, notice warning signs, and learn methods of adapting. You may or may not be able to enjoy horses and art in the exact same ways as before. However, that certainly doesn’t mean that you should give up on your passions! You can find ways to do both of these activities in fulfilling manners, even if they are in somewhat different ways than what you did before. I was a painter as well, and my dominant arm and hand have been affected. I now express my artistic side through my garden and photography, although I would like to try painting again sometime as well, even though I know my paintings will be quite different.
Also, keep in mind that while the damage has been done and you might always have residual symptoms, it can take many many months, sometimes even years for the issues to decrease down to your new baseline. You are very newly diagnosed and new to these issues, and while other things will most likely crop up at some point, the issues you have now may very well still get better over time, with your PT, and as you learn ways to adapt.
In the meantime, go easy on yourself, hang out with your critters, and keep on posting. We're here for you, and I’m sure others will be along with additional perspective and suggestions for you as well.
Hi Sunny. I did get s good nights sleep and feel a little more rested this morning. Still have alot of the 'flair' issues but after reading your last reply I started to go back and think about how I felt yesterday before I left to ride. I was not to tired but my legs and arm were like pins and needles and I suspect I should have taken that as an early warning that perhaps riding was not a good choice of activity that day.
I need to do what you sugest, start trying to be more aware of how I am feeling before I act. I guess I just get stubborn and think I can do everything I used to do whenever I want to do it, and I usually pay the piper for it in the end. So I am gonna take your advice and try to 'key in' to my physical self more.
It si nice to be able to come in here and find support and not feel like I am going crazy. Thank you for sharing with me how you cope with this. As I said, you gals are amazing....and yes I am very new to this. One of my lesions is also in my cerebellum, not to sure where the other ones are in my brain. I know they are more in the front if that makes any sense.
I it common to have these flairs so often? The pins and needles, will it go away? The fatigue is always there, some days worse than others. My balance seems to always be off a little and agin, some days more so than others. Thanks again for you support. (((Sunny)))~Katie
I’m so glad you’re feeling a bit more rested today. I was, and am still to a certain extent, the type of person who believes that if I just work a little bit harder, hold on a little longer, and push myself a little bit more, I can get through anything. This is how I approached my work situation. It was (and still is) a very hard lesson for me to learn…I can no longer control my body to the point where I can just tough things out and continue on and on, as I have in the past. At work, I was able to push through for a while on adrenaline and force of will, but eventually it caught up with me, and I couldn’t go on. I think working harder like this in some cases is just not better….we need to work smarter instead. This might mean touching walls for balance or using assistive deceives, or simply that if you wake up and notice your balance is off, you might not go on a full trail ride. Instead, maybe you could walk the horse on a level surface. I don’t know all that much about horses, and Gretchen can probably give you more specific suggestions on how to deal with riding on those not so good days.
Basically though, do not stop want you want to do, unless you know right away that you are too sick to manage…just listen to those cues your body is giving you, and adjust accordingly as much as possible. This does not mean to pay attention to and react to every twitch and pain you body may have, as that is not healthy either. You will get to know what to look out for. It just takes time, and a lot of trial and error.
Also, sometimes we cannot adjust or cut things short, as certain things just have to be done. Like you, I am still often stubborn and push on and overdo anyhow, even though I know I will pay for it later. That is just part of all of this, I think. If I know I have something big coming up, I try and rest up in advance as well, and basically do everything possible within my power to ensure that I will be ready for whatever lies ahead. Does this always work? No…but I think it helps to some extent, and also gives me the feeling that I have a tiny bit of control still.
The fatigue is a really tricky situation, and is one of my most prevalent issues as well. I take meds for it, am trying to exercise to keep up my stamina, but it often just kicks my behind anyhow. I can notice signs that it is coming on, especially since it is such a physical symptom for me. If I can stop and rest for a bit, it will often help a little, but not always. At this point, I often also know around what time of day it is going to really hit me, and plan my days accordingly. You will find methods to help you manage as well.
I am certainly not an expert on this, but it doesn’t sound like you are necessarily having new flares all the time (exacerbations, or new areas of demyelination), but rather your residual symptoms are getting better and worse. Many of us will experience a lot of variation in how strongly we experience these residuals, and have good days and bad days. You will be able to recognize what is what a bit more over time, and also the factors that can trigger your residuals to act up a bit. That being said, if you are still having those new arm symptoms, that could indeed be a flare, and I’d contact your neuro again and check things out with him.
Keep hanging in there, and come on back and let us know how you are, okay? (((Katie)))