With MS the F word is FATIGUE! Most people get it but not all and in varying degrees. Sometimes it is very bothersome and many things can trigger it so one feels even worse. Being tired is different than being fatigued.
Sleep takes care of tiredness but not fatigue and that is the problem. This was one of first big symptoms I started to have and it was unrelenting and over powering. I started to miss days at work and even if I got there felt like doing nothing. If it was a warm day then I felt like someone had poured Jell-O in me and poured cement on top of me, I could barely move!
NO matter how much sleep I got it didn’t help. I would go to bed exhausted and get up feeling tired and drained. Well in time I got diagnosed with MS and to this day no one really understands why this is such a problem with MS but it is!
I can fall asleep anywhere at any time (I try not to of course). I have sat in the DR’s office doing the usual waiting and looking at floor and thinking, “would anyone mind if I just curled up and went to sleep” that’s how it is sometimes.
SO through the years this is what I have done to fight this.
I may not win the war on this but one day at a time as with all MS things and eventually I get somewhere. I have learned to live with it but more on MY terms :)
It’s a personal choice if you want to do the training for a service dog yourself or wait and have one trained, just look into each carefully. Doing it yourself has many, many rewards though and for us the only way to go. When you get them as a puppy you can start to lay the groundwork for training and developing a close bond for life.
First though get the right breed for the task at hand and research a good breeder who knows what you want the dog for and no health problems. They have to be smart, willing to learn and have an excellent temperament and absolutely NO aggressive tendencies. Not all dogs by any means should or can become Service dogs. Golden Retrievers and Golden Labs are good choices for example.
Second, research your area to find the best dog school to take your dog to and take ALL the classes they offer that will head you in the direction of your dog becoming a Service dog. When your dog can pass the Canine Good Citizen test your dog then is really ready to learn all the personal things you want your dog to learn to help you. Ideally if you can find a Service dog trainer to help you train is MOST helpful.
Some things to keep in mind 1. Where ever you take your dog for schooling or training it should always be done with Love, Praise and Rewards like some small dog treats and never be taken out of your sight. Your dog should be treated with utmost kindness at all times! 2. Whatever your disability is does not make your dog a Service dog until it is trained and you have the certificates to prove it. Plus if you say your dog is a service dog and it’s not you are breaking the law and you can be charged with a Felony. 3. Gather all the American Disability Acts information you can so you know what your rights and obligations are and the general public’s rights regarding Service dogs.
OK now for some of what Candi does for me:
1. She picks up dropped things from the floor and gives them to me.
2. She takes the dried clothes out of the dryer and gives them to me.
3. She opens the refrigerator door and every door in the house, yes the front door too unless locked, opens all cabinets and drawers that she can reach.
4. She can bring me my cell phone to whatever room I am in VERY IMPORTANT.
5. Helps me up off the floor if I fall or just get stuck getting back up from doing something else.
6. Alerts me to sounds to check out (due to MS my hearing is very poor).
7. Knows how to walk next to a wheelchair, scooter and a cane if needed.
8. When not at home walks right next to me (on a short lead) to help with my balance. If I start to waver I just pull up on the leash and that motion steadies me.
9. Helps me in public bathrooms.
10. Opens doors to get inside or outside of buildings if they are the electronic type, even if they are not she goes for it. All the above is done by commands that she is taught so she knows what I want.
Well you get the idea and there is much more she can do plus the normal dog tricks. What you need to do is just train your dog where you need the help and what they can do for you. Is mine perfect of course not but she sure tries and we work on her two weaker things. If a dog is just not getting something you want done it usually means you are at fault with the training somehow and that needs to be figured out. Don’t get mad at them though, just walk away and try another time. Dogs can be trained to do the most incredible things and they are the most amazing creatures. All they want in return is to be loved and taken care of :)
PS I have had or been around dogs all my life and I have dearly loved them all and all the fabulous memories are such wonderful treasures to keep forever!
The MS Meeting, Chapter 4
So the woman I told you about in my last blog came to pick me up and I went to the meeting with her to learn about MS. Once I got there I found myself standing alone and didn’t even see the lady who brought me. A few minutes later the group leader announced that it was time to go into the big conference room, so I just followed the crowd and sat down. As I looked around I noticed how we looked like a group ready to watch a movie…I felt kind of odd to say the least. Then I felt a tap on my shoulder and I turned around to see this nice looking young woman say “It’s ok, really!“ so I just smiled and said thank you.
The leader went to the front and read the minutes from the last meeting, addressed new topics we might be interested in, and thanked any new people who came. He then started to talk about the topic of the evening and asked for any questions or comments. After that we broke into about 5 smaller groups of around 8 people or so to talk about the topic of the night, greet any new members and/or talk about anything else MS related. As it happened we had 2 new members, myself and one very tall distinguished looking man.
Well right off they wanted me talk about myself some and shy me made fast work of that. The young woman that was in this group just patted my knee and said, “You did fine!” Then this man stood up and talked the rest of our time. He was a CEO of a big company, was married with a family and had goals to conquer. But he had lost it all due to MS and he was devastated. He then passed around pictures of his kids; we all felt so sad for him. He was very intelligent and had a way about him that commanded attention. He also had quite a sense of humor and he loved talking in front of people.
After the meeting this young woman came up to me and said “You look like someone I would like to be with friends with.” Then she gave me a piece of paper with her phone number and name and said to call her. I thanked her and she said “Please do…call like tomorrow?” and I assured her I would.
So I called her the next day and we both were surprised that she lived just half a block away from me…what were the odds of that? We talked for some time on the phone and found we had much in common despite our age difference and having MS. She was very mature for her age. She lived at home, and didn’t drive or work due to having MS.
What transpired for the next 10 years was a lovely friendship and we did lots of things together that were not MS related at all…and that included her getting married. Marriage was something she thought MS had taken away but it didn’t. She did move away after that and eventually we lost contact with each other. I know she went thru some heart aches BUT she got a taste of life’s up’s and downs just like anyone without MS gets anyway. We both learned a lot from each other, which was another good thing that came out of having MS.
Next Blog: The impact that tall distinguished man had on my life and MS and the doors that opened! HINT my shyness had to take a vacation because I was asked to journey down another path that I never saw coming…MS can be surprising in good ways.
Yes indeed there are good things from having MS and living with it. Please remember that 23 years ago there were no computers for the masses or anything else like they have now. So there was no quick way to reach out to others or learn much of anything about MS. I went to the library in search of information, but what I found was not helpful.
So now that I started my MS fight I had to open one door at a time and see where that led. First up was going across the road to a neighbor’s home for I knew the couple there both had MS. I had never really spoke to them much only a greeting or so at our mail boxes. I didn’t know what to expect but had to start somewhere.
Nothing like going to someone’s home and saying "Hi! I have MS and would like to talk to you about it", but that is exactly what I did. They were very nice and we talked for some time. Upon leaving the husband’s only advice to me 'be kind to yourself...you will know what I mean after a while." As time went on I did indeed figure out what he meant.
Shortly thereafter I had another MS appointment and I asked my intimating doctor if there was more information somewhere about living with MS. He then wrote down the phone number of the MS Society and said give them a call. When I got home I did and they were so nice and said they would send a big packet of information to me and to I would be added to their mailing list. A few days later the packet arrived and I must admit I was upset seeing my name with it and tears spilled down my cheeks. I really didn’t expect much help, however I was wrong.
There were all kinds of things inside geared to help me with this journey. It took me a few days to absorb it all and then I called them again with questions. I said I wanted to try the nearest MS support group and asked how I could join it. At that time the nearest group was in another town, but they arranged for a couple to pick me up and take me to the next meeting.
The next month arrived and the couple came for me and off we went. I learned the wife had MS so the husband would take her and then leave. We talked a bit then we arrived at this school for special children. This MS group had 300 members so they needed a big meeting place. We walked in and they showed me around and said OK we will see you later, just go around and mingle with others. I was left standing there thinking, here I am the shyest person on earth and I am to mingle?? They must be kidding!
So I just meandered around and saw everything MS can do to someone and I was quite shaken. Then the leader of group came over to welcome me and saw my distress. He said "Look around and you will see that most people are walking. I want to introduce you to those who cannot so you can learn something." I certainly did.
What I learned was that no matter what disability someone had they were a person first with feelings, emotions, and personalities and they were there to help others and themselves. I quickly saw a lot of abilities each person had and the absolute grit so many showed. They came from all walks of life. I was not alone with this anymore and my shyness dissipated. I was now learning good things that one can use anywhere in one’s life.
Next Blog: The Meeting and how it opened more doors to good things I had never imagined.
After The Diagnosis - Chapter 2
On the same day I was diagnosed with MS my mother-in-law was being placed into a nursing home. My in-laws had a lot of other things to go through so I made the decision not to tell them.
In the weeks that followed I had to stop working altogether. This meant a loss of income, and my husband had to work more hours and we had to make many changes in how we did things. However I was able to take our planned summer road trip. It wasn’t easy and we did make changes along the way but I got through it and with good memories. About a month after we got back home my mother-in-law passed away. So we had another sad event to deal with.
Everyone went back to their normal routines except me. I had not yet told my parents or my grown kids about my MS and waited six months to do so. They all lived in different parts of the country and one in Canada. Due to my mom’s religious beliefs (not mine) she was the hardest one to tell. After I told her she told me not to ever again bring up the subject or use the MS word. She refused to deal with it so I never discussed my MS with my mother again. However, my dad was always very kind about it and asked how I was doing if she was not around.
Now everyone knew I had MS but back then nobody wanted to talk about it or gave out any comfort or help. I soon found myself very alone with this horrendous disease and had no support system at all. I was slowly sinking into a huge depression and thinking I didn’t want to live anymore. I started giving my things away. This was about two years into the diagnosis. Then one really bad day as I was about to give up, my beloved dog came in to see what I was doing, sat next to me and looked concerned. When I looked into her sweet face I just burst into tears and said to her “what in world am I doing?” I just sat there holding her and thought to myself…I am going to fight this with all I have even though it is incurable and I will always have it!
This was my first turning point. I didn’t know it back then, but there were so many more good turning points to come. Of note, you will see in my blogs that I think dogs are the coolest things on the face of the earth! After all dog spelled backward spells God and they certainly are a priceless gift to so many!
Next Blog: The Good I Learned from Having MS
I am going to break up my blogs into chapter like form until I get to the present. We all had a beginning and here is mine.
It started out as unusual fatigue, a worsening to summer heat and limping if I walked too much. Then it went to the little toes on my left foot feeling numb and a leg that was getting very uncomfortable feelings in it...kind of a numb prickly feeling running up the back of my leg. Over time I started to have tonic seizures that would make my whole body go numb and I would crumble to the floor.
For six years I kept going to one doctor after another and was told a lot of different things and not getting anywhere. Finally my boss said "I really think you should see someone for your back again," for she thought (like I did) that it was a pinched nerve or something. I did have back problems, so that seemed reasonable. I went to see my doctor and he ran some tests. He said, "Well, your back is worse, but that is not it." He then gave a slip to me to see a neurologist. I told him I thought that neurologists only dealt with mental patients and that I was sure I wasn't crazy. Then he explained to me what a neurologist was and what one could do for me.
So I went to this neurologist and my life changed. From the beginning I did not like this doctor. He was rude, ill mannered, impatient, very controlling, and showed no courtesy or respect. He did an extensive MS exam and then had me answer a ton of questions about my life. I must have been in his office for 2 hours. When he was done he handed me a paper to take up to the front desk, and on it was the name of six diseases that he wanted me tested for. I had heard of only one of them before and oddly that was MS. I told myself that wasn’t what it was at all and I didn’t worry.
About 6 weeks went by getting all the tests done and the results back to him. It was time for my second visit and in I went. When it was my turn, he came out to get me and said right away WHY didn’t you bring your husband with you? I told him no one said to do that! By now sheer terror was going thru me! In his office he started to go through the pile of results and saying a lot of medical things I knew nothing about or what he meant. Finally he told me that I had a demyelinating disease. I still had no clue what he was talking about and I told him so. He was getting irritated with me and I was upset. Finally it was I who had to drag it out of him...what did I have exactly? He then blurted out "You have MS, there is no cure and no real treatment at this time." I was stunned and in a minor state of shock. He then tossed a MS book at me and said go home and read this (but bring the book back) and at our next visit if you have any questions we will go over them. He was completely devoid of any comfort!
I left and got into my car and just sobbed. Next thing I knew I was home and had no recollection of how I got there but all seemed OK, meaning I didn’t hit anything on the way home. I went inside, sat down and looked over the book and just kept saying NO WAY NO WAY this is just not me. Finally my husband came home and I told him and he just said well, now you at least know what is wrong. He had to go to work and left me standing there in tears. Up till that time that was the worst day in my life. The MS journey had begun and what an interesting trip it has been, albeit the rough times too.
For all who read this keep in mind that was 23yrs ago and A LOT has changed for the better since then. I was 48 when I was diagnosed and am 71 now.
Next Blog will be about "After the Diagnosis"
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