I am thankful for the sincere, “How are you?” questions that come from friends and family; my support system.
I was recently reading a thread on a Facebook page relating to MS and the medicine I take. I was struck by this post: “I used to tell my husband when I had “ms stuff” happening. Now when I’m asked how I feel, I usually just say fine. Feel like I’m always complaining otherwise. Anybody else?”
I replied, nearly instantly, “I tell him if he asks. He’s my partner. He’s my teammate. We’re in this together.”
I am not shy to talk about health related item that bother me though. I am very aware of my body and changes in it, so I talk about it with my husband. I always have. I don’t work out every day and eat healthy all of the time, so I’m not a health nut. But, when I notice changes that don’t make sense or something hurts, I talk about it with my hubby. How else will he know what’s wrong or if something is bothering me if I don’t tell him?
Now that MS is in the mix, I don’t shy away from telling him something is wrong or good. When my feet stopped tingling, I told him. When my shot hurts, I tell him. When I feel like I can tackle the world, I tell him. When I am so tired that I just need to go back to bed, even though I just woke up, I tell him.
I am baffled why folks don’t tell their family or friends the truth when asked, “How are you?” Several of the responses from that FB thread say: “I just say I’m fine.” or “I’m good.” These folks also admitted they don’t tell the truth to people because they feel like they’re complaining or that their partner doesn’t believe them.
This makes me sad. Very very sad. I can’t imagine not being honest with my husband. I can’t imagine him not caring about how I feel. I can’t imagine him not believing how I feel.
I know I am loved by him and by my other family members. I can feel it, they tell me, and they ask — “How are you feeling?” They all mean it — sincerely and honestly — they all want to know how I am feeling and how they can help me feel better.
I hope the same for everyone else out there. Having a support system is so important. Don’t hide how you feel — physically or emotionally — please. New symptoms may mean your meds aren’t working. Changes in emotions — if you’re feeling depressed or anxious — may mean you need some medicinal support. Both are completely normal for those of us with MS.
Thank you, sincerely and forever, to my support system. I am very thankful for you all.
For my fellow Multiple Sclerosis Warriors — We can do it.
If you are on Teva’s Copaxone 40 mg 3 times per week medicine for your MS — here are a few tips I have from my personal experience. I’m only 9 months in, but I have learned so much from a few online communities, my husband, and myself.
My suggestions are:
- Follow the Share Solutions nurse’s direction as best as possible. It is a lot of information to learn the first day. If you can have a health care partner with you, I’d recommend they be there with you and practice with you. My husband and best friend gives me my shots on M-W-F. We pick out each spot in that day’s zone together. I do the heating and the prep work. He applies the alcohol swab, the injection, and then a cotton pad in case I have a little blood. *Don’t worry if you get a little blood, it’s totally normal.*
- Call Shared Solutions or your dedicated nurse any time you feel you need it! That’s what they are there for. Use them. Oh yeah — you can also call them for a travel case, a cooling neck wrap thing, more ice / warm packs, sharps clipper, another Autoject device if you need one, AND if you accidentally mess up an injection, they’ll even sent you a replacement!
- Heat the spot well. I mean well.
I like my skin to be pink from the heat just prior to injection. A good 5 minutes like the nurse recommends, sometimes more if hubby is busy doing something else.
- Use a planner for your shots. Try the online Copaxone tracker, Phone App, or whatever else you like that will help you keep track of where and when you’re due for a shot. Here is a sample of how I keep track of my injections.
- I use the Android phone app to track when I inject; add my notes there as well.
- On my laptop, I use a picture from the website application and update it each injection. This method helps us to make sure we’re not over using one location.
- Pick a time that works best for your schedule. Maybe first thing in the morning is what you like (I do) or the last thing before bed. I was dreading 7 pm on M-W-F. Now, we get the shots done first thing in the morning and I go about my business and don’t think about MS for the rest of the day. Sure, there may be a little “down time” with a bit of discomfort, but hopefully, yours is like mine and doesn’t last long.
- Remember: you are not alone.
I don’t have anyone located near me that I know / am friends with that has MS. I rely on my husband, my family, and my online network.
We’re all here for you. When you’re having a bad day or your nervous — holler out. Someone will be here to listen and help you through it. There are several online resources — check them out! These are the three I use, but I know there are others out there.
- MyMSTeam – http://www.mymsteam.com/activities
- Facebook – Copaxone – https://www.facebook.com/groups/223304355359/
- Facebook – Taking Copaxone – https://www.facebook.com/groups/29290278773/
- Write down your reactions so you can remember what to do again (or not to do) when you’re at the same zone again. Sometimes you’ll go too shallow but you may not remember it by the time you get back to that zone. Sometimes it will hurt more than others. Have a conversation with your Shared Solutions Nurse about your reactions and see what he or she says about limiting them.
- Write down the “order of operations.” I recently started using Lanacane, and before I did, I discussed the order I should complete the injection steps with a pharmacist. The steps got more complicated, but are still easy enough to remember, especially since I have my partner to help me!
- Rub in Lanacane.
- Apply Warm pack.
- Alcohol swab the area.
- Air dry.
- Apply Cotton Round.
- Apply Warm pack.
- Try not to stress.
It’s a little nerve wracking at first. You’ll get into a groove / pattern / method that works best for you in a few months.
- Don’t quit.
You’ll get to a point where you think you can’t handle it anymore. Just the routine of it, or the discomfort, or the reminder you have MS. Don’t quit. It gets better about 5 months in! =) Lots of folks say the same thing I experienced. I hope the same or better for you!
- We got this!!!!
I’m not a healthcare professional. Always check with your doctor or nurse about how you should take your medicine.
Sure has been a while, huh?
I don’t have any reason why I haven’t blogged. I have the time, I have the thoughts, I just haven’t been writing, in any way at all, for a long time.
I’ve recently been inspired by a dear friend of mine. She writes nearly every day and every moment she isn’t spending with her family. She’s writing or revising several books at the same time. I can barely focus on one!
I am going to do my best to get my household things done, job hunting, and write. This is a path we’ve been down before, isn’t it?? ;)
Let’s see what The Involuntary Housewife can do this year!
I read this and thought it was a great list of questions to ask myself. With the diagnosis comes plenty of emotional and mental ups and downs. This serves as a reminder for myself. I hope you get something out of this reblog.
Hello, my friends.
As many of you know I was diagnosed with Relapsing / Remitting MS (RRMS) in July 2015.
We found it quickly, got on a treatment plan quickly, and I am doing well today. The Hubby is (and always has been) my rock, my partner, my medicine giver, and my best friend. We make a great team!
This year I am walking in the Multiple Sclerosis (MS) walk in Albuquerque, NM. The Event is on April 9th.
Please join us in Albuquerque, if you can, for the MS Walk in person or join my Team (http://main.nationalmssociety.org/goto/mmcracing) and be a virtual walker to raise funds for the team. You can donate today on Giving Tuesday or any time before April 9th. Don’t forget that your employer may match your donation, so be sure to let them know via their process that you donated!
Need to know a little more about MS?
Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system which interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.
Do you have questions? Please ask me and I’ll answer all that I can.
I left you last time with a mostly vague post about being sick and taking some time off. I’m hoping to get back on a normal schedule again, soon. It will take a little time to adjust to a new schedule. When I’m not here, I’ll be working and studying. Hang with me! =) K?
The big thing that has happened recently — We sold our house!
Are you homeless when you have no permanent mailing address? If that’s what deems homeless, then that we are! What an amazing adventure we’re going on.
Yep, another vague post. ;)
Just know — I’m happy.
It’s a REALLY LoooooOOooOooooooong story.
I got sick.
That’s not the full length story, is it? Well… I’ll post more about it when I’m ready and it will probably take several posts to get through the story of it all. I am “sick.” I will be “sick” for the rest of my life. I am not letting it pull me down too much or very often. Most people have no idea I am sick. I was just out of work for several weeks while I dealt with some issues and got back on track. So, I’m on track now and feeling really good. This means more of my time is dedicated to a household focus. There will be some down time where I can get back to Thankful Thursdays and other things… like getting my ass back on the treadmill! I hope you will hang with me while I’m out of touch a little while longer.
I am very thankful for those of you that are still hanging around and waiting for me to make a come back! =)