Getting Sick While Chronically Ill

This article is not giving medical advice. I am not a doctor. This is just observations from someone who has walked a path of illness and the problems encountered. Please consult your doctor before trying any new medication or making changes to them. 

Having been chronically ill for well over 5 years now has been a journey. I have talked about the five stages of grief that you have to survive, the horrors of trying to find doctors that believe you, and even the opioid crisis that has swept the nation and gotten the attention of Congress. One aspect I have not touched on is getting a common illness while being diagnosed chronically ill.

The common cold or flu is debilitating for most people. The coughing and fever run havoc on your body and the aches and pains are terrible to deal with. People take these times to call in sick and take time to recover with grandma’s chicken soup. Others try to prevent it with the flu shot or a Z-pak. The most common option is to stock up on cold medicine and cough drops and power through it while not missing a day at work.

How I wish it was that easy to do.

When you are already taking 5-7 medications (or more), it is very difficult to just grab a box or bottle of cold medicine. You have to check the ingredients in each medicine as you need to compare it to what you are taking to avoid an overdose. I end up having to mix and match different basic medications in order to find the right amount to help. I always cringe when thinking about the liver or kidney damage that is done by the abuse of these medications and since I have been taking mine for many years now, I worry about the stress and damage I have done to my own body in taking what I need to get through each day.

On a good day, I still deal with aches and pains on a level most people would find extremely uncomfortable. While sick with a cold or flu, this pushes my pain tolerance to the limit. Having the wheezy chest and the sinus pressure that makes you fall back into the pillows is hard enough, but add in my fibromyalgia muscle and nerve pain and it hits a whole new level. Factor in that I might not be able to take my normal medication and it just gets worse. Symptom on symptoms will break you.

Common beliefs say that you can just use a sick day and take time for your body to recover. Unfortunately here in the US, that tends to be difficult for many people as sick days for people in jobs in retail, fast food, or the service industries don’t have many days we are allowed to take off with pay. Balancing the options of taking an unpaid day off and the possibility to getting better by not working is difficult. Chronic illness survivors will run into other issues on this as well. We tend to use sick days on particularly hard flare days when your medicine doesn’t help, when your medication has run out and you can’t get more yet, or when your medications have made it too difficult to function and you are in a haze. We tend to be extra cautious in using sick days because we never know “How will I feel tomorrow?”

Having a chronic illness and being medicated as such also invites reinfection. With weaker immune systems due to medications, inability to fight off infections like normal, and body fatigue all factor in to a rolling cold that can last many times longer than a normal person. We take joy in feeling “better” because the cold is gone but in the back our minds we worry about getting it again once it comes back around the office or store.

It can be especially difficult during cold and flu season. I want to say to each and every chronic illness “spoonie” out there that you are a gladiator and deserve the recognition as such. You fight your own body on a daily basis and having an outside invader makes it even tougher. You are a survivor. I see you an I salute you for your bravery and courage for making it each and every day. May you stay healthy this cold and flu season. Those of you who are sick, grab some hot tea and chicken soup, huddle up with your plushie and blanket, and may you get better soon.

#hugaplushie my friends

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Pilling around.

I had another doctor’s visit this past week. My regular 3 month follow-up. It was supposed to be a regular check up but this was my first one since my asking about my condition and fibromyalgia. It was a bit hard to accept a negative response when I first asked about it. I was told it was all in my head and I was dismissed. It was not what I thought my doctor who has helped me so much would do to me.

I went in to the exam room and had all my vitals checked (lost 2 pounds at 210, 126/80, 97.1 temp). Chatted with the nurse, who knows me on sight now, about my emotional support dog and how much he is helping. Small talk. She left and I waited in silence.

After 5 minutes my doctor came in.

She asked how I was doing and I told her not very well. My pain had been flaring up quite a bit, life was still very stressful with moving into a new apartment (and dealing with new management and other issues), my wife being in another car accident (she was OK but is doing physical therapy because of injuries sustained), and surviving several other private things that I cannot share here.

She listened as she checked my lungs and commented a word or two of concern when needed. She then said she had been looking over my case and she agreed that she might have been too hasty in her decision to dismiss my claims, especially in light of me having increased pain. She was going to add another prescription to my usual medication to help with the pain.

I was surprised but happy to have her, in my opinion, back on my side looking out for me.

 

I went home and filled all my meds and in the next few days dealt with the addition of more side effects (all three of my meds cause drowsiness and dizziness) and my body trying to respond to them. It has been a rough weekend for me.

I have had to rely on my family and friends quite a bit as I have had more than several moments of having to clutch the wall in a dizzy spell, falling asleep in the middle of the afternoon, not mixing them up or overdosing, and making sure I am not driving. I am not sure people know the responsibility of taking medications. There is a lot more work than people know.

Making sure to keep track of them (there is a fantastic app called Medisafe that tracks when to take something, how many pills you have, and when to refill) is a part-time job. You become a pharmacist, almost, with knowing what to take, how to take it, when to take it.  You have to check in with those around you to see how badly its affecting you because your reality is skewed. You fight to maintain your concentration in the simplest tasks. You get criticized because you are on medication and you are weak and just need to feel better.

I am here to tell you that it is OK to need medication to help you.

I am here to encourage you that it is OK to get help.

I am here to tell you to talk to your doctor to get help.

I am here to tell you to stop listening to those who criticize.

Only you know what you are going through. I understand the struggle and the need for help. I have lived with the pain daily. It is beyond OK to look for help in your life. Lets end all the shaming in being prescribed medication BECAUSE YOUR BRAIN IS SICK. If you had a kidney infection or diabetes, you would take antibiotics or insulin to help your body. This is considered normal. The brain should be treated the same way.

Sometimes it can be therapy (stuffed or otherwise).

Sometimes it takes medication.

There is no shame in asking for help.

I’m not.

#hugapony