What is MS?
If you haven't known someone who is affected by this disease, you probably don't know much about it. I thought I would provide a simplified version for you guys so that you understand the disease a little better. Again, this is just a simplified version. You can look up much more detailed information online, if you so choose :).
MS is an progressive autoimmune disease. Autoimmune basically means that the body mistakes its own cells for pathogens and attacks them. In MS, the immune system attacks the Myelin around the nerve endings in the brain, spinal cord and optic nerves. Myelin is like a fatty substance that protects the nerves. Because it attacks this, eventually the nerve signal is lost completely and you are left with a loss of function of some sort. (Alot of people start with loss of function in the legs or with decrease of vision or problems with vision.) Progressive means that in most it worsens over time. It usually starts with episodes that come and go... followed by a progression of the disease and loss of function.
It is lifelong. There is absolutely NO cure. There is constant research going, but as of yet, most people try to just cope with symptoms and use steroids to slow the progression. It is very PERSONAL. One person's experience is different from another's. Just because one person is doing fantastic does not mean that another will also. It also means that while some end up completely disabled, not all do. I read a study recently that about 25% of patients do end up requiring a wheelchair at least part of the time for mobility.
What are the symptoms?
- Loss of balance
- Loss of coordination
- Muscle spasms
- Vision problems--double vison, loss of vision, blurry vision
- Weakness
- Problems moving extremities
- Numbness, tingling, pain in the extremities
- Memory loss
- Dizziness, Vertigo
- Bladder and bowel problems
- Severe Fatigue
- Difficulty Swallowing
No. When you think of autoimmune, you might think of something like AIDS, that eventually leads to death. Patients with MS usually have almost normal life expectancies and do not die of MS itself. That being said, there can be associated diseases and problems that can lead to death. But honestly.. if I didn't have MS I would still have a risk of dying from another disease. So don't ask how long I have until I die, lol!
My personal thoughts on MY MS
While my thoughts are not the same as everyone else's, because the disease is different for everyone, at least you might understand my position!
MS IS A LONELY DISEASE. I say this because it truly is so difficult to describe in all honesty, the extent of symptoms. I have said I am tired, to which I have been replied, "Well I am tired too.. Valerie." MS fatigue honestly makes me so tired that somedays I don't have the energy to brush my hair. There have been many occasions that I have held back the urge to urinate because I am not sure I can even muster the strength to walk to the bathroom. I read a quote that is fitting. It said "If you don't know MS, THEN YOU DON'T KNOW MS". Basically, you cannot understand the extent of my complaints unless you have the disease yourself. This can make it lonely because, honestly, you suffer alone and people just really cannot truly relate very easily. Fatigue basically feels like you are walking in a pool, all the time. The weight on your legs can be unbearable at time. I need naps nearly daily. And there are just some things I don't know if I can do anymore-- like trips to lagoon, walking around the zoo, exercising, etc. I have actually had to use the wheelchairs at the grocery store. That was embarrassing. And I loved getting the looks from people like, "ugh, those aren't toys! They are for people who need them!"
MS CAUSES PAIN. Doctors widely disagree and many state that because the nerve ending is damaged, pain signals are not sent. Ask any MS patient. There is pain. A lot. I try not to let it show, but I am in pain abou 95% of the time, to some extent. It can be completely crippling and at other times I manage to maintain a basically normal life.
MS CAUSES MENTAL DISTRESS. I suffer from severe anxiety and depression. This is really hard for me to admit, because I don't like showing true weakness. When you feel that you cannot control your own mind, that is the very definition of personal weakness to me. But it is true. I am on anti-depressants. I have been on everything.. Prozac, Paxil, Wellbutrin, etc. I have finally landed on Lexapro and have found it to be effective for me. How can you not be depressed when you fight the feeling that your body is failing you? I also have extreme anxiety. Crippling, disabling, anxiety. I have the entire range of it-- OCD, Panic, Phobia, Social Anxiety and Generalized. My heartrate doesn't go below 90. Ever. It is exhausting. It is so severe there isn't medication to handle it. I have literally been on VALIUM and it did NOTHING. So I have looked to alternative medicine and continue to fight. For friends that I have cancelled plans on time and time again, I hope this gives you perspective into why. I can become so overwhelmed so quickly that I retreat and become anti-social. I have lost nearly every friend I had because of it. I know it was my fault, but it has been very hurtful and very lonely. I just have a few friends at best and they aren't very close. But sometimes I think that is better for them.. having to deal with me isn't always fun.
MS IS A FAMILY DISEASE. I don't mean this in a sense that it runs in families. I mean that it affects the whole family. If you are a family member of an MSer, than you know just how difficult it is to be around it day in and day out. There is nothing you can do to take away the pain and you are forced to watch someone suffer. We rely on our families so much for help with tasks that it can be very daunting for those close to us. It is hard to have people ask us how we are doing, because honestly most times it isn't great, and that is a heavy burden to feel by those who love us. I know that my disease had greatly impacted my family and caused me to lose all of my friends. It impacts you on so many levels.
***** And Now For The Silver Lining Part*****
Woo... you thought you were never going to make it through all that to get to this, didn't you? :) It is okay, I understand.. lots of information!! So here are things I have picked up along the way that I think are so important for those suffering from ANY affliction!!
It is normal, okay and NECESSARY to grieve!
I have learned that you absolutely cannot hold back the grief that comes from a major illness or affliction. It is hard. It is depressing. You feel that you are alone. It is like a death. A death of the healthy body that you knew before and it should be treated with the same respect as that! Here are some tips I think are helpful:
- Get a Journal: Writing is therapeutic and can help you look back on your progress. I recommend writing in it daily. I make it a personal habit to write about my daily but also including a detailed account of my mental state--anxiety, happiness or depression, crying bouts or times I laughed. I think it is important to remember where you were mentally just as much as your list of what you did that day.
- When you having a particularly bad day, write it out instead of telling those around you. I may get criticism for this but honestly, after being sick for a year, my family knows that I am in pain, that I am tired, that I am depressed. They have become calloused to this and when I tell them that its a bad day, it can come across that they don't care. THIS IS NOT TRUE. It is just that they have reached the point that they do not know what to do to help anymore. That being said, if you experience any NEW symptoms, please tell somebody. But if it is the 6th week of continuous fatigue-- write it in your journal for your own personal reading. This can help lift the burden on those who love you but just don't know how to help. Sometimes you just have to vent and you feel better when you do. Your loved ones love to hear that you feel a little better, and sometimes a good venting session can help you feel a little better.
- Don't listen when people tell you stories that so and so had this disease and they are doing fantastic, you will too. I know that people think that this is helpful, but honestly, it isn't. Disease is highly personal and subjective. If you aren't feeling like your disease is making you a better person, that is okay! lol. (I always get a little irritated when I read about people saying that their MS was such a blessing and made them so strong!! The real blessing, in my opinion, would be to have a healthy and normal functioning body lol). So I understand where you are coming from!
- I don't mean no longer listen to your doctors! I just mean that this is your life, your body, your disease. Take ownership. There are things that you can do to compliment your medicinal treatments!
- Don't let ANYONE tell you that a certain symptom "doesn't fit". Again, disease is highly personal. If you are in pain, you are in pain. If you don't have a doctor that believes you, find a new one! If you have OCD, like I do, then you do. A psychiatrist tried to tell me it was a schizophrenic tendency. Um, no. It is OCD. You know your body.
- COUNSELING COUNSELING COUNSELING As someone who has been weekly for months, I recommend this for ANYONE WHO IS SICK. I don't mean a psychiatrist. I mean like a social worker. Someone who simply LISTENS. This goes back to above. You need to vent. Your family cannot always say the right thing or take on the burden. Counselors are paid to just simply listen and honestly, even healthy people need that sometimes!
- Never underestimate the power of vitamins and supplements. Do your research, find out for yourself what can be beneficial. There are studies EVERYWHERE. Almost all disease stems from a basic lack of a vitamin or mineral. You may be able to help or prevent future problems by just investing in some great vitamins. **Note: Do NOT start taking any vitamins that are outside the daily recommended amounts unless you tell your doctor! This is especially true for fat soluble vitamins like A D E and K and Iron! Water soluble vitamins like B and C are replenished daily so you can have higher amounts of these! If you aren't sure, please ask!**
- NEVER UNDERESTIMATE THE POWER OF NUTRITION:
- The United States places more emphasis on pharmacy drugs than any other developed nation and also had much higher rates of disease! Many countries who have low disease rates place a much higher emphasis on what you eat, not what you TAKE.
- Read up on what you are eating!! I cannot stress this enough! Some things in food and drinks are just absolutely gross, but because of lobbying are legal. For example: Aspartame. This is used is basically EVERY diet drink and especially Diet Coke. It is horrible for you! It is deemed carcinogenic by the World Health Organization (meaning it is cancer causing) and can lead to nuerological problems, mental problems and many many cancers. The FDA has tried to have it banned, but has been stopped. It is banned in many european countries. Just because it is in food does not mean it is safe. Please Please do your research. Your body will thank you.
- And Finally... Just some General Tips!!:
- Keep Anxiety to a minimum: An awesome quote, "95% of what we worry about never happens and the 5% that does, we rarely can control anyway!". I know this is easier said then done. But I try to remind myself of it on hard days.
- Less is not MORE. I try to remember this with my depression and fatigue. Even those of us who suffer from fatigue need to remember that more sleep does not mean we have more energy. We should follow normal 8 hour patterns and take naps as needed. Vitamins and minerals also! Remember that taking the RIGHT vitamin is much more important and helpful that just overloading your system with tons of them. Do your research into what is key for your illness.
- The Grass is not Always Greener.... : One of my favorite quotes of all time is, "The grass is greener on the other side because it is fed with a bunch of shit!" No one's life is necessarily better than anyone else's.. those that say their life is so amazing and perfect are doing just that... feeding shit! Lies! They just have a different perspective!
- The Power of Positive Thinking. Do not ever underestimate the power of positive thinking and especially words! Read quotes, song lyrics, anything that you can relate to with a positive message! It can't make you have a completely positive thought process, but reminding yourself there is good in life is incredibly important when dealing with lifelong afflictions.
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