I have had a lot of random issues mainly over the last 2 years that has made my life very challenging. Ranging from vertigo, tingling, migranes, leg and foot pain, change in my balance and complete exhaustion. Most of the symptoms I've had can't really be seen externally though now I do have more trouble when I over do it, am exposed to extreme heat or am stressed. All of this just gives me emotional turmoil and anger because I hate being 38 and feeling like a 90 year old.
Every time I went to the doctor they found nothing wrong with me, even though I felt inside that something was wrong. But since I was told nothing was medically wrong I just kept pushing myself only to find myself more worn out. I worked out, dieted to try to lose weight in an fruitless effort to get more energy to do what I needed to do.
Most would comment it was because I was raising 3 kids and not getting enough sleep or I needed change this or that - none of those tricks worked. I worked out and try all kinds of tricks, had my blood checked for thyroid problems, diabetes, and vitamin deficiencies and all results came back "normal". I am not going to say that raising 3 kids is not exhausting, but I started every day exhausted, even before I did anything for my littles.
My exhaustion was worse than just a little bit of being overwhelmed and tired, it was more like painful to do what I needed or wanted to do. As any parent knows, kids don't give you a break when you are sick. So I was in "go mode" all the time. I would do all I could do until Brian got home.
Thank God I have a husband that steps in when I need him. He is understanding when I tell him I can't do something or need help. I am so blessed to have a true partner in this marriage.
I still did anything I had planned or wanted to do with the kids because even though my gut told me something was wrong, medically I was told all was normal. So I went to the zoo, the park, the pool vacations, and other activities. I just did not feel great while I was there, but I just told myself "it is not about my enjoyment but about the kids having fun". I used to enjoy all these things with my kids so I got increasingly frustrated when I did not really enjoy myself. I just wanted to go back home. Home was not really easy either though because there is piles of laundry and dishes and work to be done here, while kids at that age still needed to be constantly entertained. Knowing that my bed was so close and I could not just lay in it when I felt bad was almost more frustrating than being out.
When I finally received the MS diagnosis, I was a bit relieved that I was not going crazy and that there really was something wrong with me, but not too thrilled that it was a lifelong progressive disease. Even though I was diagnosed, I still felt the need to push myself even though everything I read told me how I need to slow my life down and relax more and not push myself. I was thinking "I'm not 90!" I am not going to slow down because of this disease, but I found myself tired all the time still so I decided to take some of the suggestions and started making my life simpler.
The first one I did was assign Brian to dishes - FOREVER. I had already been leaving them for him for a while but now decided to make it official. The kids used to have to clean up every now and then, but not as much as I did but now they are are my little helpers. I do not want this disease to become a burden on any of them (my husband or my kids), but it is going to help us bond more as a family because we now do everything as "Team Pierce". I have also decided that even though I had a five year plan of home improvements and five years later we are still stuck in phase 1, I had to just let it go. I will get to that stuff when I get to it. I have had to let a lot of things go, you know, not sweat the small stuff! It is not easy and though I say I am doing it, I am only doing it a little. It takes a while to slow a high strung person down. This disesase has done a lot of it for me and on the days that I don't feel well I really do not care about all the stuff I have not accomplished, but on the days that I do feel well, I do get angry at what I have not done or what I have to do just to catch up.
I realized this is not a disease to take to a back seat to, I need to stay proactive in my exercise and eating and keep my mental health in order. I am now on a new oral medication (which is exciting because most MS medications are injections) that will hopefully slow down the disease's progression. I am not a pro at this either. I have only been aware of this disease for 6 months. I have a lot more to educate myself on and a lot more stuff I want to do before it get worse and I have a lot more to learn about chilling out and taking a break.
It is pretty easy to stay positive when I feel good. The tricky thing about this disease is it can throw you off balance (literally) at any time. It is embarrassing to fall in front of others and it brings in all kinds of bad thoughts into your head while you try to stand back up. It is easier if you have been drinking all day when you fall, at least then you can blame something external. However, a feeling of your own body giving out on you is a hard pill to swallow. Reading some of the material about the disease is tricky too. Sometimes it is nice to be educated about what you are going through adn to have validation for something you are feeling, but there is a lot out there with this disease that I have not experienced yet and don't want to! So when trying to educate yself sometimes I find out about symptoms or issues that scare me and then I have to work on bringing myself to trying not to worry about it if has not happened to me yet!
You never know when an attack is going to happen and you never know what it will be. Sometimes an eye loses vision, sometimes it's vertigo, sometimes my legs feel like jello and sometimes they lock up and simply won't respond. It is hard to stay positive and keep exercising and eating healthy and keeping a strong mental state when you have no idea how this came about, how long it will be here and if it is permanent. Luckily, my husband is good at reinforcing the positive into my life and though my kids are exhausting, they really love to help me when they know I am having trouble. That in itself makes my heart melt!
There are many other struggles ahead with getting on the right medicine and getting it approved by insurance, being able to afford the co-pays, getting child care covered when I have doctor appointments and probably lots of other things I have not even encountered yet. The drug I am getting right now has not been approved by my insurance company so the manufacturer of the drug is providing me the medicine for the first year. Depending on whether or not my insurance company is going to comply, I may have to switch medicines, even if this one is working. That is really frustrating.
I worry that I may somehow pass it on to my kids. They say MS is not hereditary but they also don't know what exactly causes it. Even so, there are many people that are related that do get it. A lot of people with autoimmune diseases are lacking in vitamin D so I am keeping up with my kids' intake of that to at least eliminate that possibility! I will get them checked every few years to make sure they have appropriate levels.
Since finding out about having this disease and making some small adjustments to vitamins and finding small improvements on conserving my energy has made a huge difference in how I feel day-to-day. I have had more good days than bad in the last 3 months. The drug I am taking does not help me in the here and now, it mostly is to help slow or stop the progression over the next 20 or so years. The goal of my doctor is keep me at the stage I am in now for 20 years, or until a cure is found. My goal is to feel like I am 20 again! I think if I can keep up with my regular exercise and stretching routines and this medicine does what it is supposed to, I will at least feel my age for the next 10-15 years.
We appreciate any support and prayers you have for our family. This picture was taken at our first family MS walk to show support for my new disease and help support finding a cure! It makes my heart so full of love to know that every one of my family members is behind me and wants to make sure that I am ok. Even Sophia often asks if I am feeling ok! This our new journey. By 2014 I hope to have a new tag line and logo and tshirts for my supporters!
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