Veteran MSers, and Differential Dxers -
I'd like to caputure what we've learned about getting through the 1st attack, and then daily living with limitations, what it takes to adapt, and cope so we can inspire those who are struggling. We're in this together!
During 1st attacks it's all you can do to get through each minute.
-Work through minutes, then hours, then days. You can push to make the problem go away - but it probably won't, and the frustration will eat you alive.
-Find a pace that is reasonable to carry on with what you usually do
-Everything is different, things aren't working and it feels like you can't do it. But, we are living proof that you can :)
Living with the chronics of MS -
-Take what you've learned from the 1st attack - you can't force some things into submission.(I tried it, lol)
-Inflammation needs time to simmer, your body needs time to heal
-Don't give up and try to be optimistic - what you are experiencing now, you may not experience later. It's very common to need aides to walk at some points in this disease, but it may not be forever.
-Keep trying new things to get by
No posting this say everything is rosey, because it's not. And, I mean no disrespect to those who are suffering and have progressed beyond the phase I'm trying to appeal to.
Just want to help you, help yourself. And, when you can't help yourself, and support and education is not enough - please appeal to your doctor. Not everything can be done on your own sometimes :(
Veteran chronics - please lend your experiences!
I am not a veteran, as I've been dx just over two yrs goin on three. I've been learning to listen to my body on a daily basis and know when its time to stop. I have come to understand and accept that I had to slow down on some activities and also that the evening times I have to take it really slow as my energy level is lowest then. I have learned to not fuss and fight over every ache or difference that I may feel, unless it is really bad, probably 10 on the scale of 1-10.
I try to keep a positive attitude but at times yes it gets to be too much and sometimes I may give in, in that I maybe feeling really depressed and I seclude myself. I am still learning but keeping an open mind and try to keep my head up and pray that everyday is a good day that I survive through
I am not a veteran but I would like to share how I've adapted to certain life events as I think there is a certain aspect of this that people neglect. I am no stranger to adapting to life events.
I've had a chronic disease while growing up and significant life altering even (the death of my first husband) and acclimate by taking care of myself and trying not to push my limits. In widowland they call this "riding the wave" ---it refers to riding the wave of grief (which applies here) while allowing yourself the right to your feelings.
I think of the issues I have right now the same way. There will be another wave coming but you can do things to prepare for (even when you aren't sure when it will hit) and "ride the wave."
If you push against the wave, what happens? You may/may not succeed in fighting it but no matter what it creates resistance and that depletes valuable energy. I try to focus more on today and less on "what if's" then look for improvement and a smile tomorrow (sorry, that's partly from being a widow.)
I am a n00b, so my adaptations are simple and few, but they have made a big difference for me. Slowing down is the big one. I used to rush everywhere I went. Now I don't.
I am in the process of learning to pack less into each day so that I can rest in the evenings. My typical schedule has me out of the house working for over 13 hours three days of each week. I usually go out with friends in the evening at least twice a week. I'm noticing that on long days, I come home tired, achy and irritable. I need to work on having less long days each week.
The adaptations I am most proud of are the simplest. 1. Always hold a hand railing when going down stairs (this means learning not to leave my apartment with both hands full, and that's hard). 2. Wear heels less often. 3. Wear tennis shoes more often.
Slowing down seems to be a theme! I too have slowed down and try not to pack so much into every day - and I plan my days so that if I am shopping in one store take a break before the next - get a drink, something to eat or just read a bit. My kindle goes everywhere with me!
Since I work 7 days a week I try and spread out housework, laundry and gardening - I do a little each evening so that I do not have to try and squeeze it all in after work on a Saturday or Sunday.
Little things each day add up to being able to cope and get thru the day!
If you are mad...allow yourself to be mad. If you want to cry then cry. Dont let someone else tell you how you are supposed to cope or how you should react to your diagnosis. You grieve your way. Let it out!
Realize that it takes time to deal with your diagnosis and it takes time to get used to the medication to treat it. I was diagnosed may 2011 and FINALLY this past couple of weeks I feel like I am getting a handle on things.
In order to get to this point, I went through alot of feelings. I have cried, i have isolated, I have gotten extremely angry and stopped taking my medication...I learned to hate the phrase " well I know this person with MS who runs 10 miles a day" or " oh wow...You have MS...my brothers girlsfriends sister has it and she is in a wheelchair and cant feed herself"
You have to learn to take what info is useful and let go of whats not. Do your homework and tell them "everyone with MS is different and responds differently to treatment"
In the beginning you may not feel you will ever adjust to this diagnosis but you will grow and learn how to cope and you will learn how to rely on others when you cant. Dont go through it alone...let others help when you need help!!
Aahh, yes - "ride the wave"...that's my MO. I've always been one to wonder "where will this path lead", and not one who panics and stresses over it. If i wake up with a numb leg, it's more like "wow, that's interesting", and then go call my neuro. Que sera, sera.
I certainly can't fight what this stupid disease may do, so I do what I can by getting my Tysabri every month (insert your own DMD here), managing symptoms, and staying as active as my body will let me.
All my attacks have been prior to my dx so I guess my next attack will tell me how I react. I can say the last attack in 2010 was horrid, absolutely horrid.
The hardest part was the waiting and hoping the painful sx would subside. It took months, and b/c I didn't know I had MS I took a long planned trip to central america that exacerbated my sx.
The thing I remember most about my last attack was the feeling that my body had betrayed me and I was stuck with it.
Day to day stuff isn't so difficult anymore. It's not common for me to have sx but I take great care to not put myself in situations where I am compromising my health.
I use to go on our church youth mission trips every summer. It's hard and hot work. There is no way I can do that anymore. The subject comes up several times a year and people from my church, friends in my church who know I have MS ask when I am going to start going again. I tell them those trips are over for me.
The reactions are always the same. They joke that I am using this disease to get out of it (they say this joking) and "what's a little heat"? They don't understand and while I often laugh with them, it does hurt sometimes. They have no idea the subtle changes I have made which include saying no to things that I have always loved to do.
Saying no doesn't just include physical stuff, it's making sure I don't fill my calendar up too much with PTA, school, church, obligations that will strain me too much. I use to do way too much and not think anything of it. I can't do that anymore.
All very good advice! I'd like to add, don't be afraid to ask for help. This was/is always very hard for me. I am a very independent person and can't seem to ask for help ever! Even when someone offers, I have a really hard time accepting it.
It doesn't mean that you will need help from others forever, but accepting help means you have more to give when it matters, if that makes sense. I never asked for help at first, and I think that made that first attack last a lot longer because I was burning myself out beyond what was going on with my first attack.
I still have trouble asking for help, but I am getting better about it. As far as living with the day to day chronic stuff...I'm still trying to figure that out. Some days I get it, some days I don't.
I have a simple ideal life style now, enjoy your days no matter what, never give up on something unless you are really ok with giving it up. Now dont get me wrong, i do realise that doesn't translate to the things you have no choice about hmmm thats falls into life just su_cks sometimes and also the swiss cheese factor, which is what my brain must look like lol.
I had one of those light bulb moments the other day, yes even silly sausages like me can have light bulb moments, they may be fleeting but if the breeze is right and i have my eyes crossed and my tongue sticking out at just the right moment, that thought will stick to the side of the sive and i'll actually remember it. So my light bulb was that "i fear nothing", well not that i ever was one to be fearful but i'm talking about all those things you can talk your self out of because of age, bladder leakages, numb bits, wonky legs, falling over etc etc.
I think its because over the last few years, since 09 i've really been loosing bits of me, ROFL that sounds like i'm at the shop and woops my arm falls off again lol I suppose what i'm really doing is rediscovering who I am, what i'm all about and how i want to live my life. I dont look back at what i'm loosing or lost, I just look at what i am now, what i can do now and I stay in this moment, i'm still doing the best with what i've got!
I'll never forget when my son was dx with Asperger's the specialist said "It could be worse", then when he was dx as H/P gifted a few years later another specialist said "It could be worse" and today I dont need to pay another specialist to tell me that it could be worse, i've actually learnt that life lesson with bells on, so i live in the now and thank my lucky stars that its not worse today!!!!!
These comments have all been great! I love the riding the wave analogy. That is pretty much how I handle this difficult ride. Most people tell me that I am a real trooper because I keep plugging on with my excersizing and trying to do as much as possible, but to be perfectly honest I am getting very tired and frustrated. Despite all of my attempts to stay fit, take all my meds and get plenty of rest, I am feeling more disabled every week. I am hoping this wave will splash over soon! I am certainly not giving up, just hopeful for better days.
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