Posts

Don’t ever apologize because you are hurting

Have you ever expressed a concern or talked with someone about a new multiple sclerosis symptom you are experiencing without a “woe is me” attitude and their response was just get over it? I’ve always thought that to be a strange response. Get over what exactly? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over?

How do you get over something that you live with on a daily and minute-by-minute basis? “Oh, today I’m going to ignore the fact that my legs don’t work, get over it and walk across the room.” Really? And that’s supposed to make multiple sclerosis go away…ignoring it and just getting over it? Yeah… No, that doesn’t work.

Don’t ever apologize because you are hurting or needing help. It’s like being sorry for being real. Don’t allow someone’s response to you cause feelings of guilt just because you are having a challenging day. You are the one living with MS and you have the right to feel what you feel. Most people with MS hide their struggles for that very reason. They don’t want to be thought of as a burden because they know their pain is ongoing and invisible to the onlooker.

Unfortunately, there are people who are unequipped, ill-equipped and wrongly equipped to be helpful to a person living with a chronic illness. If I had a broken arm, I would have people pouring out their concern and desire to help me open doors and carry a pile of books, but that’s because a broken arm is temporary and the need is visible. Once the bone mends and the cast is removed, the need for help is no longer there. Life goes on as it always was and no one has to open doors or carry books for you any more.

But unlike a broken arm, a chronic illness is ongoing. It doesn’t simply go away as time passes. That’s why it doesn’t make sense to expect someone who is going through pain, weakness or any other MS struggle to simply “get over it” as if it’s a decision that can be made.

Most of the time people who give that kind of advice, if you want to call it advice, are at a point of frustration within themselves because they are being inconvenienced. They actually say what they say because in reality they want you to be over it so they can be spared having to deal with your challenges. Most people want to help others out, but they want you to feel better thus sparing them the inconvenience of having to adjust their own lives to accommodate the unexpected. They are thinking of themselves.

I promise you that no matter how hard life is right now, you are not “too much” or someone that is weighing other people down. As I’ve said many times before, remember that you are not a burden, you HAVE a burden which by definition is something too heavy to carry alone. Don’t be afraid to ask for help. The ones who are meant to stick around will ask how they can help lift that burden whenever they can. Let the others go.

Above all, remember that you are loved. I know it doesn’t feel like that right now, but it’s true. An MS life can be remarkably hard. We’re not invincible. What one person can handle can be too much for someone else. It’s not about how strong or weak you are, you’re just a person trying to make your way through the craziness of an MS life like many others. Give yourself some credit for pushing on despite how intense things are right now. You got this!

Ready for surgery

My bags are packed for a 6 day hospital stay. Not my choice of a resort stay but at least I will be taken care of while recovering from surgery on Monday morning. I have to be at the hospital at 8:00 AM, Feb 6th. Surgery will take about 2 1/2 hours. I will write to keep you updated while in the hospital. Don’t know what day I will post something but hopefully you will hear from my by the 7th.

I have to empty my bowels on Sunday starting at 2 PM. I have to down 4 litters of Gavilyte-G. Lemon flavored… and stay by the toilet so I won’t make a mess rushing to the bathroom. Ugh!

For those who don’t know my urologist has recommended the removal of my bladder and a stoma made with a part of my small intestines to empty my urine into a pouch on the outside of my stomach area. I won’t have any more stones to deal with. No more UTI’s. No catheters to change. Just a urine bag/pouch to change. It’s supposedly not be painful once healed. My urine will just be an open flow outside of my body. Kidneys will work the same. Just no bladder.

I’m a little nervous about it and hope I will heal quickly and learn quickly how to manage dealing with a urostomy bag. I’ve met with the nursing staff that will be teaching my after surgery how to manage everything. They are really nice and have already given me some products to play around with to get a little familiar with what I will be doing.

Keep me in your prayers. I will be doing the same for you. Hugs…

You deserve more and better things in your life

You deserve more and better things in your life than you realize even though multiple sclerosis seems to have gotten in the way of you being able to achieve it. You have it within you to be the leader of your own life.

Take a moment and think about how your friends make you feel. Do they lift you up, or do they bring you down? If you feel bad about yourself after hanging out with a certain person, it may be time to say goodbye. Believe in yourself enough to put on your crown and hold your head high. You can’t wear your crown with your head down. Wrong friends will do that to you.

Learn to love yourself. There will be times you will have to apologize and forgive yourself for not being kind to YOU. Sad to say, you are your own worst enemy. Give yourself a pep talk by speaking positively to the situation. Words have power. If you keep thinking you’re a failure, that’s exactly what you’ll become. If you keep telling yourself you’re going to make it, you eventually will. That’s because our perception creates our reality.

Be kind to yourself. Never apologize for living your life your way. To expect no difficulties in life, whether through your own actions or sheer circumstances, is unrealistic. Difficult times happen. Allow yourself time to really look at your situations for what they are. Develop a habit of self-reflection. Try to quiet your mind and get rid of your biases first.

Do you speak to yourself by putting yourself down? Think about it…do you call yourself names out loud? Names like stupid, idiot, or worse? My mom used to say if you don’t have anything nice or useful to say, don’t say it. That includes how you speak to yourself. Try this: before you criticize yourself, think of 3 genuine compliments you can give instead. You’ll start feeling great about yourself. Try to talk to yourself like someone you love.

Prepare for a journey.