Ever have a long day and plop on the couch and pass out for a 30 minute or 2 hr nap and when you wake up and think…”Ahhhhhhhhhh….that was amazing, now let me get on with my day/night/or however you end your statement? Yeah, I haven’t had those in years, probably 25 years to be on the approximate side. I feel the same need and longing for laying on the couch and wishing that closing my eyes for a bit will make a difference. I wake up and if fatigue is my issue, you can guarantee no nap will make it better! I feel exactly the way I did when I laid down and sometimes it can be worse.
Years before my official diagnosis I’m almost 100% sure this was my first on-set symptoms and the military doctors would give me the same glucose test with each time I complained. Even when I told them all the previous tests came back normal. Their diagnosis for years and years…it has to be stress! I guess I was blind or maybe just thought maybe they were right. The military was stressful, raising children in a dual-military and failing marriage was stressful, trying to make weight with my body-type in the military was stressful, I mean I guess they were right, right? NOT! These lesions on my brain tell a very different story and they didn’t even think to look and I had no clue then so I didn’t even think to have them do any other testing. All I wanted was to feel rested at some point.
So for those of you who are not MSers and don’t suffer from any other auto-immune disease where one of the side effects is chronic fatigue, it’s really hard to explain what we feel. It’s a type of tired that doesn’t have a true word that others would understand. Sometimes you’re not even sleepy, but our bodies and mind just don’t want to go any further and it’s frustrating as all get out! So it sucks on so many levels but not just because we feel the way we do, but because of how others look at you or blow you off when you have the audacity to mention it. Like it’s fake or something a quick nap will resolve. It’s won’t and we can’t wish it away and sometimes we can’t eat healthy so it disappears (even though it does help to look at a diet and remove certain things that can exacerbate the symptom) You have to know It’s real and sometimes there’s nothing anyone can do about it, except to just rest and not do much. This may not help the immediate circumstance but not much will happen when it hits. Trust me when I say we wish there was a fix.
So I’m here to help those on the outside! When we say we are tired.
Do NOT do these things:
- Say “You’re tired too.” – trust me it’s different and we don’t need to take on your issues too
- Say “Go take a nap” “Eat Better” “You should exercise more”
- Ignore us and hope it goes away
- Tell us it’s in our heads and we need to stop complaining
- Be more upset or sad about our disease than we are – we feel bad enough for how our lives have changed us and EVERYONE around, trust we are riddled with guilt that we cannot change
- Get frustrated or sigh like we have inconvenienced you. See statement above.
Try to DO these things:
- Say something like, “What can I do for you?” or “Do you think it’s your MS, do you need anything?”
- Show support: We probably know all the things we should be doing to be healthier but we may not know how to go about it. There’s a reason we aren’t moving in that direction and need support to get there. Just throwing ideas we’ve probably heard before just makes us feel inadequate for not being able to more forward – Change your eating habits, workout with us etc.
- Take something off our plate – (feed the kids, make dinner, vacuum, do something he/she has trouble cleaning; clean it, this makes us feel like you understand there are days we can’t be perfect
- Research our disease and get an understanding of what it really means to have it. You can start by going here ⇒ CLICK to go to THE NATIONAL MS SOCIETY
- Fight for us when we can’t
- Give us a hug and let us know you are there without judgement
Hope this helps a bit.