Skip to main content

An open letter about life with Multiple Sclerosis

An open letter about life with Multiple Sclerosis

An open letter about life with multiple sclerosis. To everyone who are concerned…

The world is full of people who do not understand multiple sclerosis. I know how difficult it is to compare when you do not live with this disease, but I hope that what I must say helps open your eyes and hearts to see what my life is .... I hope you will see and understand the life of someone who has MS. First of all, I want to say that multiple sclerosis is real, it hurts, it is full of challenges and struggles. And if you have not yet understood it, it is invisible to most populations, because the damage occurs within our body. Her effects are felt in other ways, while I walk, speak, and try to pass through the day by concealing symptoms, but if you could see my body from within, you would not judge me so quickly. My body inside is a wreck filled with chaos.

Of course, I have my famous smile on my face for most of the time, but that does not mean that the disease is not there. It just means I hide it very well. You see the mask I carry, but let me take it off for a moment. I am angry, frightened, paying and scared. In my subconscious is the fact that my future will be drastically different from what I am today. You know, MS is a progressive disease. That means that, although today I am quite right, tomorrow may not be at all. It can take a year or 20 years, but my life changes every day. Know that it hurts me when you make it easy to know what is best for me. MS affects every part of my life, but that does not mean that I am not able to make decisions. Do not exclude me from some things because you assume that I do not want to participate or because you think it is too difficult for me. Let me make that decision. It hurts me more if you omit me than if I will have to say "No, thank you" to your call. Give me a choice. Also, please do not stop calling me though I told you many times NO.

Another thing that really hurts me is when you tell me how you know how I feel.

Do you really think that you understand a fatigue that never stops, stiffness, pain, incontinence, various vision problems? I have severe damage to the brain and spine in the form of lesions that cause chaos in my body, and you are trying to compare it with your symptoms of colds? Please do not do it! Unless you yourself are suffering from multiple sclerosis, please do not even try to tell me how you know how I feel and how I feel.

Support me, help me, console me if necessary, but do not assume that you can solve it.

The problem is when you constantly want to fix me, as if I was broken. I'm not broken, I just live with a chronic and incurable disease. So my condition can not go away, at least until they find the medicine, but they have not found it for now. And all of the medicines that you have read on the Internet - these are not medicines! These are techniques for alleviating symptoms, a beautiful desire, or simply scheming someone for money. We have not found anything that will completely remove multiple sclerosis from our lives. Nothing but miracles! So I do not care about the recipe from a beautiful friend from aunt's aunt who is cured with a combination of bumblebees, foil and baking soda! I do not care about the recipe. Accept me as I am. I am grateful for your concern, but your "remedies" cause me more concern than they help me.
I still want to tell you something ... for some reason you have a need to ask yourself whether I feel better whenever you see me. As I have written here, MS is a progressive disease and I really do not have an exact answer to this question. Do I feel better about the bathtub or what? On yesterday? Ten minutes ago? Last year? Instead of asking me if I feel better, treat me like everyone else. There are many other things in life besides having multiple sclerosis. And I do not want it to be the main topic of discussion whenever we meet.


I'm a lot more than my diagnosis, from MS. I am still, and I would rather talk about gardening, traveling, architecture or a movie that is coming out soon. Do not ignore my fight with the disease, but do not even focus on it alone. Take note that I have my bad days and sometimes terrible, terrible, really terrible days. Getting out will not make them better. Actually, going out in those days will make them worse. If I do more, my symptoms will not be less.

Yes, exercise is very important, but it needs to be done carefully. She says "in a healthy body of a healthy spirit" is not applicable to me. If I am forgiving and testing my endurance, my body will be rebuked for days, if not for weeks. I have to work everything carefully and with lots of planning. Sometimes my bad days in a minute are exchanged with good moments. So much rebellious my body can be!


And that's why I beg you not to tell me that I have to go out, I need to lose a pound ... Because they are not the causes of my struggle and they are not responsible for my pain. And so the next time you decide to judge and comment on my bad days, bad mood or just my responses to your insensitivity, please remember this: I am the same person as before, before I was diagnosed with multiple sclerosis. I am intelligent, caring, fun, full of love, ready to laugh at all times, I am a great friend. But, know how I have the potential and be angry, weird and frustrated. It's all I am. More than anything, I would like to find a cure for MS, but today it will not happen. Please do not look at my disability as if it were all I did. Because I am still ... MS and myself. The only difference is that I need more love, support, care and understanding. I want to have someone who is fighting me in this disease, not against me.

Signed: MS BORAC

Source: Penelope Conway, Positive Living with MS

This letter went through the world and many people recognized it. And I am one of them ... For one goal: raising awareness of multiple sclerosis. And that's precisely why I write this blog, gather and connect.
Be happy and good to the next reading.

Comments

Popular posts from this blog

ALL ABOUT MS Treatment (Part 11)

Treatment of relapse and some symptoms
Routine therapy for acute relapses is an intravenous high dose of corticosteroids, usually methylprednisolone at a dose of 500 to 1000 mg daily for three to five days. The aim of this therapy is to stop the attack as soon as possible in order to keep as little a consequence of this attack. Although generally effective in short-term symptom relief, corticosteroids do not have a significant impact on long-term recovery. In addition, longer therapy with corticosteroids can lead to osteoporosis, high blood pressure, psychotic reactions, convulsions, and cataracts.
Spasticity, which can be manifested as a permanent contraction caused by an increased muscle tone or transient spasm, is usually treated with muscle relaxants and mitralants such as baclofen, tizanidine, diazepam, clonazepam, and dantrolene. Physical therapy and exercises help preserve existing functions, while various aids, such as a walkway, a stick and a prosthesis, serve to keep the patie…

Corticosteroids and MS (Part 1)

Corticosteroids and MS (Part 1) Each of us has been treated with Cortisteroids, and Corticosterioids have been used in the treatment of MS since 1950, and today they are the treatment therapy in the treatment of relapse of the disease. The main goal of treatment emergent functional recovery of neurological deficits and prevent the accumulation of neurological deficits that are acquired during an acute exacerbation. With this introduction, they surely started moving your questions around the head. So let's go.
What are corticosteroids?
Corticosteroids are drugs we call steroid hormones. They are synthetically produced hormones and used to treat various pathological conditions in humans. They share glucocorticoids and Mineralocorticoids, and a primitive glucocorticoid is a cortisol that glows the adrenal gland. They can be applied locally as an aerosol-inhalable, skin cream, eye drops or nose, given as tablets, locally into the common space, intravenously and intramuscularly. Drugs from …

Color of MS! Everyday!

Color of MS! Everyday!
Multiple sclerosis or MS, as we call it short, means a lot. But first of all, you must be strong and have to invest a lot of energy to make your life look the same as before the illness. How many of the bizarre things I will emphasize today are actually very important in everyday life and really help how crazy it sounds. A few tips for a safer everyday life with multiple sclerosis:
1. Always leave important things like keys, phone, purses, glasses in the same place. If you have not had a place for these things, now find it. Always return the things to where they stand because you know how to hurry somewhere. You can never find keys, cell phone or glasses. If they are always in the same place this will never be a problem. A lot of stressful situations will be avoided if you adopt this new routine. 2. Close the kitchen cabinets - yes, always close them. You know how awkward we can be and you know that you will quickly forget that you have opened them. I learned this a…