The Unintentional Flake – {Living with a Chronic Condition}

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.

The Unintentional Flake - Living with a Chronic Condition

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?





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Comments

  1. I understand life with a chronic condition. I do not think that a lot of other family members understand it though. I have had fibromyalgia for about 24 years. I was diagnosed about a year after a traumatizing car accident. I developed chronic fatigue as well. I have TMJD and as a result the headaches and facial pain is really bad. I also have DVT (another alphabet health issue). This though is not a laughing matter.
    There are a few other issues but I can say I understand but each person is also different with their experience. I have family members who have had stage four cancer and a stroke and extremely serious heart health issue. Because of this that is why I have put my issues to the back burner until things scream at me like the TMJ is doing at the moment.
    One of my thoughts though is that no one goes thru life unscathed. I know it is just something that helps me sometimes other people when they are having a hard day as am I.
    I hope that you are feeling better though I know what you go thru is a chronic issue and that probably will not go away but lets hope it dissipates.

    • Thank-you for sharing your story as well. I do find many people just don’t understand, but we just have to do the best we can with what we have. Some days it’s worth just resting. When my husband had cancer, I was determined to help get myself as healthy as I could be, but I slipped back and really need to start eating better again and working out when I can. That helped a lot.
      Emilee recently posted…HoMedics Triple Shiatsu Massage Cushion GiveawayMy Profile

  2. https://www.mychronicmigraine.com/types-migraines/?cid=sem_goo_43700007367766543 is a website that has good information about migraines.

    Some migraine doctors suggest taking 400 mg. of magnesium and 400 mg. of riboflavin(vitamin B2) to help prevent migraines.

  3. Nataile Brown says:

    I so needed to read this. I’ve been diagnosed with Chronic Fatigue Syndrome and Fibromyalgia for about 10 years. It’s so hard to explain to people that I just never really know how I’m going to feel. My close friends understand and that’s why I keep them close. Some of my family are good about it and others not so much. It’s hard for some to understand because I was a type-A person and now I’m just happy to do what I can because I know that it’s not “mind over matter”. It just makes me sad when I hear “you’ve been sick for so long now, when are you going to take this seriously and make more of an effort to be well.” I don’t wish this on anyone and am sorry that you too are trying to manage a cluster of illnesses. Thank-you for sharing this important post. 🙂

  4. Hi Emilee! Thank you for sharing such a personal story. I relate to you so much I actually had to wipe my tears away before I could finish reading your post. I’ve been battling stage 3 cancer for almost three years, I get migraines so painful I vomit, and I have an adult son with autism. When you mentioned how people can isolate themselves you really hit the nail on the head. To be honest, most days I don’t even recognize myself. In a healthy way I used to really love myself before I got sick. Now I wouldn’t even want me as a friend. I generally use humor as a coping mechanism, apologizing for “falling of the face of the earth” when I distance myself from my family and friends. I tiptoe around the question, “How are you?” I thank God everyday for my wonderful husband, but I also feel so guilty that he’s “stuck” with me. I find that connecting with people online is very healing because it makes me feel normal. The best medicine for me is focusing on my hopes and dreams and thinking about the future. I wish you and your beautiful family all the best. Many, many blessings to you. <3

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