Last Saturday my husband and I held a fundraising party for United Mitochondrial Disease Foundation (UMDF) called Shopping for a Cure. With the Energy for Life walk coming up I had decided to put together this party about a month ago to try to raise more funds for the walk. I had about 9 or 10 people from various different home/party based sales companies set up in my house to sell their products. They then donated their profits to UMDF. It seemed to have been a success. Quite a few people came and "shopped for a cure".
I knew it was going to be hard work and it would take a lot out of me, just like the walk will in a few weeks. However, I didn't think it would be this bad. Here's that roller coaster I ride again. The party not only created a physical roller coaster, but a mental one as well.
The party itself was great and I had a lot of fun. I think we raised a good amount of money for UMDF and the EFL walk but I won't know exactly how much for another week or so. I felt pretty good the day and night of the party. However, it sent me into a mito crash that I have yet to recover from 5 days later.
I have been sick since Sunday morning and it is now Thursday night. I normally get over a mito crash from too much activity like that within a few days. That's when it's worth it to me. When it's something important to me, like the fundraiser, it's worth it to me to have to be sick for a couple of days. However, 5 days is really pushing it. I can start feeling better any time now!
My main problem is that I haven't been able to eat. Every time I try to eat something with any substance I get very nauseous and/or vomit. That means that my diet for the last 5 days has consisted of orange sherbet, pudding, chicken broth, toast, and crackers. Even the crackers made me nauseous once. The two worst things for a person with mito is infection and fasting. I may not be completely fasting, but it's pretty close considering how few calories I'm taking in each day.
The second downfall of this roller coaster is the emotional side of things. I was so thrilled to have everyone here at my home for the fundraiser. That happiness has completely faded away. Being sick is so lonely. Laying in one spot day after day doing the same thing gets so old. Feeling so sick sucks. The part that makes it suck even more is when friends and family don't call to check up on me to see how I'm doing or to see if they can do anything to help. Luckily my parents are there for me a lot. However, I wish I had friends that would call me to see how I'm doing.
I'm friends with a bunch of people with Mito on facebook. When they post that they're sick or their child is sick they get a ton of responses... "you're in my prayers"..."feel better soon"..."I'm sorry you feel bad." You know, I don't need a ton of responses. Would it be nice to know that a lot of people have me in their thoughts when I'm unable to get out of bed and feeling awful for 5 days? Of course. But what I need instead is less than a handful of responses from my "good" friends.
It is SO hard to be sick. The longer it goes on, the harder it is to handle. But the loneliness and isolation just makes it so much harder to handle. A few months ago I published a post titled "Support through this challenging journey". It explains why support is so important and how critical it is to have support in order to deal with this illness. I found this quote and it says it better than I possibly could. "...it is ultimately the love and support of others that gives people the inspiration and courage to get through this challenging journey." - www.friendsofjaclyn.net So it is, then, the lack of support that pulls me down and makes me wonder how I can continue on in this life while feeling the way I do all the time. If it wasn't for my husband and my parents I would have no one that I can truly count on. I am so jealous of those people who have sisters, real and friends who are like sisters. I just wish I had friends who I knew would always be there for me when I really need them. Isn't that what true friends are? If that is the case, I have one true friend.... he's also my husband. I am so thankful for that. I wouldn't be able to get through this without him.
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