Since his diagnosis in 2008, my husband and I have had plenty of struggles, as we navigate life with his disability. The following is a short list of things I’ve put together, that MS has taught me.
- Every single case is different. The same has been said about many chronic and autoimmune disease, and with MS it’s no different; no two cases are the same (which makes sense, considering no two people are the same). If you know someone with MS, then you know one person with MS.
- Take each day as it comes. Every day is a new day, and it’s especially important with MS that you take each day as a new day. Live in the present, do the best you can to help, but remember to step back and let them make their own choices.
- You just might feel resentment. As time goes by, with all the symptoms that my husband experiences, it’s incredibly difficult to deal with sometimes. Loading and unloading the wheelchair every time we go somewhere is not always an easy job. James can’t run, or really play outside with the kids, so I have to do all of that. It’s hard for him to get on the floor to play with them, so he doesn’t usually. It’s hard for us to want to cook every night, and going to a restaurant is way too stressful, not to mention expensive. Our lives are not “normal”, and sometimes, that’s all I want is to be “normal”.
- Places think they are accessible, but they’re not. Recently, we went to a very popular, local, counter serve chain. They had just opened, so the line was extremely long. Once we finally got up to the front, after waiting over an hour, there wasn’t space between the register and the wall separating the line from the tables. Whoever planned the restaurant, put exactly the required space for a wheelchair to pass through, without considering the additional space needed for a person to stand and a wheelchair to pass through. Lots of stores marketing materials in the aisle, or sometimes there’s a big beam in the middle of the aisle at the store. If my husband goes to the store without me, he has to take one of our kids, because then they can climb to the top of the dairy shelf to get what we want. Sure, he could ask an employee for help, but our boys already know what we buy, what help James needs, and what he can do himself. Plus, he doesn’t want to feel like he’s inconveniencing someone, and he would rather do it himself.
- Seek second opinions. And thirds. We’ve dealt with a whole host of side-effects from the DMDs available for MS. And my husband realized that by visiting other doctors, he could find someone that is willing to think outside the box, and look for answers elsewhere. The DMDs may be the right choice for you, but for us, the imposition in our lives, not just the side effects, did not outweigh the benefits; he tried nearly every drug that was available, and none improved his symptoms.
- MS is not a death sentence. Dealing with MS is going to be different for each person, like I said above. It’s also going to be different for each caregiver. It may even be different every day. Some of the treatments may help manage the symptoms, and some may not help. Find what works for you; but I think we could all agree that stress management or even stress elimination should be part of any treatment.
- Self care is critical. This is probably the most important thing I’ve learned, and sometimes it’s the hardest to remember. Both the person with MS and the caregivers around them really have to prioritize taking care of themselves. The neurological damage cannot heal if the body is not optimized for healing, nor can a caregiver take care of another person effectively if their body is not in good condition.
These are only a few things, but I’ll probably have follow-up posts as I realize more things. In fact, this is probably going to become a never ending topic.
What about you? What are some things that living with MS has taught you?