Holidays and Chronic Illness

We are past the largest holidays of the season, thank goodness! There is one more around the corner, New Years, though not as big or as stressful as the others for those who celebrate it can be difficult.

Negotiating the holiday stress has always been a challenge for me personally, but now with MS, fatigue and my Meniere’s disease it’s kind of a nightmare. The fatigue make daily tasks a challenge, but the extra cleaning, preparing, decorating, etc can lay you out for days.

Things I have learned, and try to remember, during the season.

Plan ahead, have a game plan; I do most of the shopping well before Thanksgiving, hide them properly and then wrap closer to Christmas so I don’t forget what I got people. Note, if you need to you can always just keep a list and hide that, I have put several presents in “safe places” and then forgot about them which caused me to order something else only to find the original item.

Keep it simple, don’t feel guilty if you are hosting and have to down size the meal plan. I used to feel the need to have starters, salad, sides, main entree and two or more deserts. No more, if I have two sides and a main entree that is sufficient to feed everyone. Ask people to bring sides if you feel like more options are needed.

Disposable dishes, they make very nice, heavy duty paper plates these days. I am all about not making extra dishes, give me plastic-ware, paper plates and plastic cups because I do not need clean up from cooking and then again from eating.

If you are a parent, your kids will appreciate the time with you more than the fancy food anyway. When the shininess wears off of the new presents it’s you they are going to want attention from. You cannot do that if you are laid up for days because of the intention of an elaborate celebration.

 

The Road to Deciding to Get a Service Dog for My Multiple Sclerosis

Let me start by saying, as of the writing of this blog, I am not receiving any sort of compensation for my opinions so when you hear me talk about Freedom Service Dogs, it is because they are near and dear to my heart and I believe in what they do.

If this is the first post of mine you are reading, then hi and welcome. I have Multiple Sclerosis, it sucks, it sucks pretty hard some days to the extent that I would love it if it was a person I could kick in the teeth. My story of how I came to the decision to apply for a service dog was a very difficult one and I do not enjoy sharing it so hang in there.

Winter of 2015, one year after my official diagnosis, and a few months after I was violently rear-ended in a car accident that resulted in torn hip cartilage that required the use of a walker my husband and I took our kids to the local indoor mall to see Santa. As you can imagine, the mall was filled wall to wall with an insane amount of people and we were trying to leave through the crowd, I encouraged my husband to take the boys ahead of me because I was slow and he hates crowds as much as I do.

As I slowly made my way through the crowd I was shoved aside by two teenage girls trying to get through, mumble to myself something about hating crowds and teenagers are assholes. Fine, moving on, me with my bright blue walker with wheels, just trying to leave the mall. Grown ass man shoves me to the left trying to get through, first of all WTF, second of all, if I was an old lady would they be shoving me? I have never in my life felt so vulnerable than at this very moment, broken, small and in a crowd of people who didn’t give a shit about where I was in their space. At this point I am holding back the tears that are trying to well up in my eyes because I am not weak and I will not let these people break me, there’s a reason I don’t work in retail anymore. Barely holding my shit together but getting closer to being out of this disaster of an outing another set of teenage girls pushed me aside to get by.

Once I left the mall doors and was on my way to the car I started to cry (I could barely walk, I was using something meant for old ladies, I was only a year into a diagnosis that would eventually take everything from me and I just experienced the worst of humanity during the holiday season). This just would not work for me. I started to research after that, what it would take to get a service dog for my MS by the time I needed one. I also set my walker up with flashing bike lights, a warning horn and a cup holder because you had better believe I am not getting shoved around again.

In my research I found that most options for service dogs are buying a Lab type puppy specifically bred for the job and then paying $40,000 for training. Well, I don’t know about you, but I don’t have that kind of cash laying around to pay for a service dog, especially when meds for treatment for MS is already very expensive. Then I happened upon Freedom Service Dogs, I vaguely remembered them speaking at one of my DAR meetings when I first joined but at that time I was not yet diagnosed.

Freedom Service Dogs is a non-profit organization that provides fully, custom trained service dogs to people who need them. This includes mobility, veterans, PTSD, they have also partnered with Disco Dogs to provide service dogs to people with Autism at no charge to the client. They provide you with training with your dog and constant support should you want it. They will also help train your dog for things like if you have MS and go from needing Brace and Balance assistance to being in a wheelchair and needing your dog to support you with that.

Want to know more about my journey to getting my service dog? I will post another blog about the next steps next week.

Cognitive Decline in Multiple Sclerosis

I miss my words, I miss being able to talk like a grown up who went to college. I get frustrated with endless people telling me they have problems with words sometimes too. Everybody has problems finding the right word occasionally, some of us have that problem daily. Not just with the big fancy words; I vividly remember I could not remember the word “straw” when I was trying to use the metaphor “the straw that broke the camel’s back”. I am sure I looked like insane person freaking out about “The thing that broke the camel’s back! You know! Bah, what is that thing that broke the camel’s back?!” Yelling and frustrated because I knew the word, I just couldn’t remember what it was, I could picture it in my head but it just wouldn’t come to me.

People who only occasionally have these issues can usually just use another word and move on, my brain get stuck in a loop, or rather that is what it feels like. Like a computer that just froze and now has that wheel of death and won’t do anything but sit on a single screen. That is what my words finding problems are like. Then, maybe a week or month later the word will come to me and in my excitement I shout it out and look like a crazy person yet again because absolutely no one but me remembers that was an issue and I am so excited that I remembered.

Another thing that frustrates me with my cognitive decline is my loss of short term memory, I am not not just talking about walking into a room and forgetting why I am there, everyone has that sometimes. I am talking about watching an entire season of a television show or a movie with my husband and then recommending we should try watching it because it looks good, only to be told we just watched that last weekend or already saw that whole season. “Was it good?” is always my response, pretending that it must have been pretty bad if I can’t remember it. When people ask me if I have seen a particular movie I always have to say, “maybe? I honestly don’t remember”.

When I was in high school I entered poetry competitions, short story workshops for creative writing and wrote on my school newspaper and one year helped to edit it. I was so proud of my vocabulary. Now I cannot remember basic words, or even more frustrating, words will get mixed up in my head while they are coming out of my mouth and turn into some weird babble of nonsense word and people laugh. What I want to do is cry, or scream… that’s not what I meant… this is the word I wanted to use and I usually do when it’s just my husband or my kids because this happens around them so frequently that they know better than to tease me now. When it happens in public though, or at work I just have to laugh it off because I don’t ever want to look like the weak person I feel I have become.

None of the doctors prepared me for how emotionally traumatic MS would be. No one ever said, yes it can cause depression and anxiety but also humiliation, resentment and shame. I have been to my lowest of lows since my diagnosis, and most of those lows were because of how much my brain has been impacted by these changes. It’s hard to feel like a good parent when you are supposed to be reading to your children but your sight fails you and words look weird.

When I started going through these changes, there was no one online like me that I could relate to. Hopefully, if you are like me you can find some sort of peace knowing you are not alone. Shout out in the comments if you get it, need support or have problems with symptoms. We can commiserate together!