For the past few months my health has not been on my side. I’ve had chronic migraines for months straight with just a little relief for a couple of weeks after giving in and going to Urgent Care and getting the Toradol shot. After a couple months of waiting, I finally got in to see some specialists – both Neurology for the chronic migraines and a Rheumatologist for my Fibromyalgia (and to rule out any auto-immune disorders). I’ve had X-rays, a brain MRI, blood work, etc. and have more tests to come.
The frustrating part? I still don’t have any clear answers and went from not taking medication to taking five different medications. All I know at this point is I do, indeed, have Fibromyalgia (FMS), which was never under question because I was diagnosed with FMS many years ago, and I get to add TMJD and IBS to my list of ABC’s.
In another post I mentioned I was tired of writing cliché phrases in regards to working with a chronic condition, but my personal life is no different. Living with a chronic condition can sometimes be extremely lonely and isolating. If people didn’t truly know me or don’t know of my chronic health issues, they would definitely label me as a flake.
Sometimes I have to cancel appointments, can’t make it to an event or get together, or just plain don’t show up. The last one is the one I despise the most. I have always been the person who at least says I can no longer make it. This scenario usually happens, though, when something isn’t quite right whether it be I have a major headache or, lately, it’s been I’m not adjusting to all these medications very well, and I end up taking an unintentional nap. My husband doesn’t like to wake me when this happens (or sometimes he just completely forgets) and so, I end up missing whatever was planned.
Events at my house are no different! Although it’s definitely a lot easier to have people come here rather than us go there, it’s not uncommon for me to not be prepared for guests. I will be scrambling last minute to make sure I’m properly dressed (a.k.a. not in pajamas) and likely shoving toys, clothes, and whatever else into closets because I don’t have enough time to actually put them away. It’s madness! In fact, I had to do all that for the House Party we had tonight for the premier of Disney’s Descendants. I was a mess!
I think what makes things even more challenging is that my husband also has a physical disability and our kids have special needs. It makes it that much harder to “keep it all together” so I am not a complete disaster every time I leave the house or that I totally flake and don’t even leave the house.
All I can do is say “I’m sorry,” and I truly do mean it. I wish I wasn’t in too much pain, or have a major headache, or can’t fight my overwhelming fatigue. I wish whatever it was that caused me to flake didn’t exist. Instead, though, all I can ask is that people who don’t have a chronic condition try to understand it’s not intentional and it’s definitely not personal. Whatever it is I missed, I’m sure it was a whole lot better than than whatever caused me to miss it!
Sometimes I just push through it. Sometimes I can’t. I never know what “type of day” it’s going to be. The important thing is communication. Sometimes friends and family understand, and sometimes they don’t, but it’s important to be open and honest. Maybe you’re like me and don’t want to make a big deal of your medical concerns, but if you keep it all in there is no way people can understand! You don’t have to let your condition define you, but you also can’t ignore it. Sometimes the brave thing to do is talk about it.
Do you have a chronic condition? How do you explain to your friends and family what it is and why you may sometimes seem like a flake?