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What do the days look like?

Today, I woke up and I absolutely dreaded getting out of bed, I was so scared to stand up. I did it though, I got up and what did I do? You got it, I immediately fell. My legs don’t work today, but I don’t get it because they were working fine yesterday. What is going on?

The life of living with several chronic illnesses is a very hard one to live, especially when your married and must lean on your spouse for support. You suddenly feel like a daily burden, you feel like you are just annoying the crap out of that person and there is nothing you can do to make it stop! You are living your worst nightmare.  Although sometimes, I may have a couple of those “okay” days.  What do I mean by an okay day? Those are the days when you can maybe go out to dinner, or go for a drive to get away from the same four walls that you stare at in your bedroom daily. Now, these are my favorite days, these are the days where I can basically fake it until I make it home, to wake up to the next day. These are the days when no one even knows I am sick unless they know me personally. These are the days I live and pray for, hope for, and can try and get some chores done.

But then I have other days, the days where like today, my legs don’t work. I cannot get out of bed, I have a headache, I am dizzy, nauseous and having so many symptoms on overdrive, I feel like my body is just going to explode into a million pieces. The FLARE just keeps getting worse and I have no control over it at all no matter what I do.  So how do I live through this?  I wanted to give you a few good basic steps that I have used for myself and that has worked for me so far. With some products I use that have been lifesavers for me in preparing for everyday challenges of my illness.

My tips on having enough battery to get through your day:

1. Always remember that God’s got this! Keep your faith because he has a plan no matter what they may be. For me, I have come to know that I have been able to help others keep their faith in the lord and help others with the support they need.
2. Don’t ever push your body more than you have too. No one is going to blame you for this, and if they do shame on them! You know your body and you know how your feeling. Listen! Listen very carefully to your body!
3. On those days where you are feeling okay, write a list of things that you want to do, but only complete a couple. You only have so much battery life and you do not want to completely drain yourself of it.
4. Joining support groups and making at least one friend that has some of the same diagnosis as you. This will help you so much, you don’t have to have a ton of friends because you will notice in my next step that this doesn’t happen for us to often.
5. Come to terms with knowing that you are going to lose people in your life. There are going to be many of your friends and maybe even some family members that will not be able to handle this life your living. You will lose a lot of people! But just remember those that do stick around are the ones that matter the most.
6. Don’t let other people’s looks or glares get you down. If I let everyone who gave me a nasty look or rude remark upset me. I would be crying for hours on end. Now don’t get me wrong the first time I walked out in public with oxygen on my face, I felt like the whole world was kicking me in the face and staring at me like I was a part of the circus. Like they had never ever seen someone like me before. Now you will get people who do look at you like you are supposed to perform some circus act for them, but the only way I stop that is to simply ignore them.
7. Having high expectations for your appointments won’t get you anywhere. When you get a new doctor and see them for the first time, setting your expectations low has helped me the most.
8. When you’re sick, trying to get a good team of doctors may take a while. Every time you have a bad appointment and just want to sit in your vehicle and bawl your eyes out. Know that tomorrow is another day and you don’t have to stay with that doctor there are very many others that will be a good fit for you.
9. Get your nightstand ready, this is specifically for those that are home by themselves. Make sure you have all your medical supplies, medicine, water (it is so important to stay hydrated), food and any hobbies you have that you can do in bed. For me this consist of my laptop, and several books, crochet supplies, and my phone.

Nightstand Hacks

• Some of the things that I have on my nightstand that you could get for yourself include;
  • Daily Food Journal : This journal helps me so much! If you have any food allergies or just want to track your food this is a good journal for you!
  • Pulse Oximeter: You will not regret having this on your nightstand either. Especially for those random times where your heart is racing and the palpitations are so bad. I think it is so important to check and keep track of each of the levels. Keeping track of them you can use the blood pressure logbook below.
  • Omron 7 Series Wrist Blood Pressure Monitor (100 Reading Memory): This is truly one of the best blood pressure cuffs I have had. One of my therapists recommended it to me, I bought it right away and love it!
  • Blood Pressure Log: This is a huge lifesaver for me! This book I bring to all my doctor’s appointments and they are able to help me with all my stats to see what is going on with each of my symptoms.
  • Sagely Smart Weekly Pill Organizer: Now this pill organizer is A-Mazing! I have gone through so many pill organizers, and none have done what this one can do. I had a lot of other that did not fit all my pills, that I couldn’t carry well on the go with me. Then there were times when I completely forgot to take my medications. Well.. guess what? You don’t have to worry about remembering this case at all! You can add all your medications to your smartphone (a very easy set up too), then you set alarms and it will take you which medications to take and an alarm goes off. It cannot get any better than that. I used to get so forgetful and mess up my schedule with my medications. That doesn’t happen anymore with this nifty pill case!

Finally, the biggest thing you can do to help yourself is not get consumed by how someone else lives. This is so incredibly hard, especially when you see all your friends going to concerts, shooting guns, going to movies, dinners, etc.… Because believe me when you do, it just upsets you more and as much as your mind wants you to be able to do these things you just can’t. I want to go bowling, play laser tag, go to an amusement park, travel, there are so many things I would like to do but after several years of this. I had to come to the realization that my body just isn’t ready or able to do any of these things.

Following some of these basic steps may help you as well. If you have any other questions, feel free to message me. I know how hard it is when you think you are going through this alone. I want to let you know you are not alone! There are always others out there and so much support you can get.

 

Also, for help on this do not forget to