Hello chat room friends and family. I created post a couple years back with help from the wonderful members of this chat room. They helped fill in the gaps that I missed in what turned into a fantastic post that has a timely effect for all the newly diagnosed that deal with this monster we call MS. It should help to keep you from some of the pitfalls that many of us fell in when we were not told things by our doctors that soon put fear in our hearts and made this monster seem unconquerable. I hope this helps and feel free to reply and add additional things as this is by no means a list that is totally complete. Always remember that together we are stronger and hopefully this list will help to drive that idea home as this list was created by many in this chat to help the newly diagnosed. Take care and I hope the post truly does prevents you from some obstacles that we fell into and the bad experiences that we had when we were newly diagnosed.
As many of us know who have MS for length of time it seems like each and every year our things to avoid list grows longer. Offhand for those newbies joining our chat room I thought together we could compile a list so they might know what to expect before it happens. Or if they're currently experiencing any of these negative impacts they can take steps to lessen their importance in your lives before or even, in some cases rid them from your life before they have negative effect on you and your MS.
1. Stress, made the number one spot in this post. Prolonged stress or excessive stress can lead to exacerbations with MS. Try to avoid it at all costs. It drove me from my career because I could see my MS getting worse and worse due to the continual bombardment of stress that I was under. I decided I was not going to let work kill me so I left and I've never regretted it at all.
2. Over exertion make the number two spot. Doing too much physically without the rest required in between can also cause your MS symptoms to flare. If your balance is an issue when you get tired it becomes harder and harder to pick up your feet and you fall quicker. My bowel and bladder control it's a lot sketchier when I'm extremely tired. It also causes muscle groups to just give up The Ghost and quit working. My calf leg and leg muscles and ankles sometimes just turn to rubber if I do too much. As an example here was when I was fairly newly diagnosed we went horseback riding and after coming back to the camp about two-and-a-half hours later it wwas like i had no leg muscles to hold me up . If it wasn't for the horse being good I would have been on the ground. I kept grabbing hold of the saddle and the stirrup and pulling myself back up. It took several tries to even get my legs partially under me and then my ankle rolledl completely over. When my family first saw me they thought the horse had stepped on me and broke my ankle. I had explain to them it wasn't the horse that caused my ankle to roll over but it was that the horse that was keeping me standing up right at that moment as I clung to his main and neck as I was trying to move forward to find assistance. It was an extremely scary experience and one I wanted to share with everyone before you overexert yourself and find yourself with no muscles and perhaps no legs or arms to use.
3. Walking over rough ground in strange areas with no assistance equipment or person to give you an arm. You don't have balance problems but even without them you need to be careful when walking in strange places without assistance equipment. You just never know what you might find as far as big holes or in the winter spots of ice so to make sure we don't fall and break bones is vitally important as well.
4. Trying to do as much in a day as we used to do pre-MS. Make another list of the items you wish to accomplish that day and then cut the list in half or even less depending on how you feel or your stage of MS you are currently operating under. Don't try to do as much now with that you have MS as you did before you were diagnosed with MS.
5. Do not self-medicate or take herbal supplements without checking with your neurologist first. Many of the therapies we find ourself on with MS are complicated compounds and some can interact negatively and cause problems, even over-the-counter meds and supplements. Better off 6being safe than sorry so always check with your primary doctor or neurologist first before adding or changing any meds in your MS wmedicine profile.
6. Lack of sleep. Lack of sleep can affect so many areas of our body and even allow are immune system to decline. If you find yourself not sleeping well since you're MS has been diagnosed, you are not alone. And don't purchase sleep aid over the counter but check with your primary doctor or neurologist and let them handle it professionally. What they prescribe for you will have more strength and potency and will work better for you without interacting negatively with your MS.
7. If you are not content with your current neurologist find one can talk to and who will listen and explain things to you in language and ways you understand. If your pain levels are high and if you're having trouble doing day to day tasks becase your pain is so high it is possible that your MS care provider is unacceptable and you need to find one who will take care of your needs. You need to be constantly brought up to date on any new therapies being approved. If you currently are satisfied with your therapy and it is keeping your MS in check in your satisfied with your current MS prognosis then you can not worry about checking on other, newer therapies. if your current therapy isn't improving your MS state and you need to have a neurologist who will take the time to explain them to you and go over them with you. There are a lot of good neurologist out there. Ask your primary care physician to recommend a good neurologist in your area if you're not content with yours. And if that doesn't help check with the National MS Society and they will find the National MS Oe5ffice in your area who can then recommend neurologist within your region that you might be interested in talking to. The phone number for the national MS Society is: 1 800 fight MS.
8. Do not put up with limited, none, or very negative support from your core group. If your spouse, significant other, or other family members are not there for you, find support somewhere else. If you don't have any at home, if your partner has left you or isn't there for you when you need them, find support elsewhere like this chat room.
9. Remember that MS does not make you less worthy as an individual. You need to find place to go where you are reminded of that constantly. Come join our extended family here. You will find a safe place to voice concerns, ask questions, and to be surrounded by those who truly understand what it's like and what you go through when you have MS
10. Temperature extremes can cause both exacerbations and extreme pain for many MS patients. Many patients with MS has very low tolerance to high temperatures. This can come in the form of fevers from infections or simply being out on extremely hot and humid days for too long. Any type of swelling with the body extreme temperatures really makes MS patients ill. No matter the cost website internal swelling is to hydrate hydrate hydrate and if you are out in extreme temperatures get out of this and understand as quickly as possible. Now as far as extreme heat also you have to remember this soaking in extremely warm tubs, taking long hot showers, and don't forget that hot tubs are no longer our friends as patients with MS.
Now to come to the cold temperatures in how they affect MS patients. As an MS patient you need to be extremely careful in the extreme cold. Keep your hands and your feet as protected as you possibly can. I suggest every MS patient look up an article and read it on Rinaldi's Syndrome. I suffer from it and I hit it hit my hands once. And I can tell you I for three children in natural childbirth labor and nothing compared to the pain that Rinaldi's syndrome attacked my hands with. Your hands will turn very pale or blue and tingling it to extreme discomfort and then all of the sudden it will feel as if 1,000 spikes are being hammered into each hand simultaneously. I wound up on the floor in the fetal position with my hands between my legs crying or wailing like a child and it lasted at least 10 minutes or more. Don't tempt fate do not go outside with your hands and feet unprotected and read an article on Rinaldi's Syndrome. My hands are even uncomfortable for when I have to put them in extremely cold water for any length of time or have to dig around in the freezer looking for a hidden item.
11. If you have any type of infections MS can sometime hide their symptoms, as in you might not feel the pain associated with it. And your MS can allow your infection be it the flu or a severe respiratory infection or other virus to act as if the infection is on steroids and literally hit you like a ton of bricks. When I have an infection I can suddenly have trouble simply walking across the room. i litrerally bounce to my left in my right and fall off of things. I get so weak sometimes I cannot move or get up at all. Including so weak I can't lift my head to take a drink of water. Don't panic but get help and get doctor ASAP and hopefully have support at home that can help you through the roughest few hours or days as it depends upon your individual bodies response. But don't think you stroked out or anything because it happens too many of us just get a doctor's involvement a s a p to make sure you are okay and to understand your body's response to an infection.
12. Associated with the depression but not directly linked to it is mood swings. Because of the nature of MS with your good days and bad days your moods can swing dramatically. This can prove to be especially difficult for caregivers and loved ones around the patient to deal with.
13. Although the following information are not all the things to avoid they are excellent points to take into consideration when dealing with your MS.
MS affects each and every person who has it differently. No two people who have MS walk the same path with MS. Although many of our paths are extremely similar we walk them at different paces and we face many of the same detours but they are at different places along our paths. So what helps you might not help the next person with MS and vice versa. The best thing to do is to watch and learn what others do. Try to see what works for you and incorporate that into your daily life and what doesn't work simply discard.
Accept help graciously. Don't think that by accepting help you are giving up your Independence. Your safety is worth much more than your Independence. So don't turn down help especially when need it just to make a point that you can still do it on your own.
A positive attitude is very essential when dealing with MS. To think that you can beat this monster is to be able to find a way to beat this monster. Never give up.
Read read read. Find any and all information you can find on this as it relates to you and read it. Information is your friend when dealing with MS. But realized there is a lot of misinformation out there. So when you read remember to sort out the advice that seems to be totally out of place. Do not discard it but research is farther to make sure it's not worthy of spending more time on.
Do not live your life halfway or live it in fear. Follow and live your dreams. Do everything just modify how you do it in order to keep yourself safe. if MS manages to make fear change your dreams and stop you from doing what your heart desires, MS wins. Don't let that happen.
Remember that MS does not make you less worthy as an individual. You need to find a place to go where you are reminded of that constantly. Come join our extended family here. You will find a safe place to voice concerns, ask questions, and to be surrounded by those who truly understand what it's like and what you go through when you have MS. As I tell everyone in the chat room it is vital to remember that there is strength in numbers. As I mentioned earlier always remember that together we are stronger! Never doubt it and come to us for help whenever you need it because if one person doesn't have a answer to your question 15 others might and are almost 4,000 members that we have in this awesome support group that we call our MSAA chat room! Until we speak again take care! You matter and you are a very special individual. We are here to help anytime you need us. Fancy.
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