I took the day off of work today to attend an "event" put on by MS Lifelines. They host quite a few events yearly for people with MS and the wonderful people who help care for them, (in my case, my hubby.) It's a place you can go to get some education, share experiences, and also meet other people in your area who have MS.
This particular event was led by my MS LifeLines Nurse, Brandee, who has come to see me quite a few times at my home already. (I just love her.) I was initially very apprehensive about going. I was nervous to go somewhere where I didn't know anyone and I'm still feeling super emotional so I knew it would be difficult for me to sit through something like this without having a bit of a hard time keeping it together.
This one was at Thanksgiving Point's Harvest Restaurant and we got there a little bit early because, well, I hate to be late. As we sat outside the restaurant and watched some of the other people arrive, I felt more and more sick. A lot of them seemed to know each other already and here I was, sitting in the corner, wanting to be invisible and holding on to Mike's hand like it was my life line.
One of the first things I noticed is that there were lots of walkers and canes and that hit me hard. These are the first people I have ever seen, (that I know of), with MS, and so I was aware that I was specifically looking initially at their physical capabilities to see what I had to look forward to in my future, and I will admit it scared me at first. I honestly just wanted to turn around and go home, and if Mike hadn't been there supporting me I know I would have left, (if I had even made it in at all.)
As they called us to go in, I walked over to sit down next to a beautiful lady with snow white hair, pristine makeup and the sweetest smile. She was using a walker herself and Mike stopped to help her get comfortably in to her seat. To say it was all very overwhelming to me at first would be a bit of an understatement. I was in a room full of strangers, yet at the same time I felt some peculiar emotional connection to every one of them, so I tried really hard just to focus and keep it together.
One of the ladies sitting on the other side of Mike asked us where we were from and which one of us had MS and I pretty much immediately dissolved. She proceeded to ask me when I had been diagnosed and it was all I could do to get the word "June" out of my mouth. In that split second, I could see the knowing look in her eyes... she knew exactly what I was going through and honestly, that was a little comforting to me. Thankfully, Mike stepped in to carry the rest of the conversation.
The next thing I knew the sweet lady next to me was patting my hand and asking if I was OK and if I wanted some bread. All I could get out was that I would be fine, and this was just all still very new to me and I was just trying to adjust. At that point, that darling woman just took the lead and opened up to me. She told me she was diagnosed in the year 2000 and what a huge adjustment it had been for her. She told me about her life and her family and her hobbies. I was so grateful to just sit and listen and know that there were genuine people in this room who knew what I was feeling, knew what I was afraid of, and knew what to say to me in that moment.
The time flew by. The food was downright amazing, but the presentation and the company was the highlight. I did shed some more tears throughout the time we were there, but they became more tears of gratitude and peace than fear. I learned some wonderful things today from Brandee's presentation.
- Be Your Own Advocate: They gave me a list of trusted resources that I can use to learn about MS and connect with others. (See the links at the bottom of this post.) They also talked about preparing for doctor appointments ahead of time and taking a list of questions and concerns so I don't forget what I wanted to talk about.
- Involving Others: They talked about not being afraid to ask for help but also, looking for ways that you can show appreciation for the people who help you.
- Focusing on Cognitive Issues: They talked about things you can do to deal with brain fog such as: Keeping lists, setting reminders, keeping your mind active with mind games, (I personally love lumosity which my mum introduced us to), eliminating distractions and focusing on one thing at a time.
- Standing Up for Yourself: They talked about being ok with saying "no" to things sometimes that might stretch you too far and not feeling guilty about having to sometimes cancel plans with your friends or family.
I was also very humbled and grateful to meet some very kind, compassionate people who are "giving" even though they too are struggling. Such a powerful lesson for me. I am now aware of support groups that I can go to and meetings that I can attend to learn how to deal with all of this better. I feel like I now have a connection to people who know and understand and that makes me feel less alone and a little less afraid.
I am so thankful for Mike, not just for taking me today, but for being my constant rock and my emotional walking stick right now. He literally holds me up when I feel like I can't make it a step further. I worry about him and the strain this is all putting on him, but when we go to things like this all I see is his strength and his beautiful character shining through and I realize how blessed I am to have him in my life. Looking back, it's kind of funny to see how our life has been guided in a direction to prepare us for this. How blessed I am that he changed his career years ago to Physical Therapy! How blessed we are that we moved in to a rambler that has everything accessible on the first floor if we need it, but that has stairs for me to work on as long as I can. How blessed we are that my mum and dad have moved just around the corner from us. How blessed we are with the insurance and benefits we have through my job.
As Mike and I were talking on our way home this afternoon, he mentioned how wonderful it was to see that every one of the people there today with MS were mobile with a cane or walker after many years of having this disease. He then told me how blessed we were to live with this now when there is so much new research, so many new medications that have had really good results at slowing down the progress of the disease, and so much hope of a cure one day. I am grateful for his positive outlook and for his ability to refocus my thoughts. He smiles even when it's raining. :) There are so many reasons to be thankful. I just have to focus better on those things on the hard days. :)
The list of resources they gave us:
