This past week has been really hard for me. Mentally and physically. I’m stressed out and overwhelmed. I’ve been upset this week. I’ve been sad too. Sometimes dealing with any type of chronic illness gets to be too much.
I wish so many times I could just have a normal day. One normal day. No doctor appointments, no meds, no pain. Anything associated with the illnesses to be gone. We don’t have that option. Last year I tried to block it out and not take meds and as I’m sure you can guess I felt worse without those medications.
It’s 365 days 24/7. It can wake you up in your sleep. It’s just always there. You learn to live with it and adjust, other days it’s hard and incredibly unfair. I feel so defeated on those days. I question why me? Why do I have this? I’ve already had many battles thrown my way and now this?
I’ve gotten mad at God which is hard to admit but it’s the truth and I know for a fact I’m not the only one to experience that. I question why I can’t get healed. Why can’t I just have a mild case of these things? I don’t believe that “God gives us what we can handle” or that “God chose this path for you and one day you will understand”. I’ve touched on it here before but I truly don’t believe that God would purposely cause harm to us. He literally said in Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” He literally said He will not harm us.
I believe that God is there to walk with us and be there for us. I once read somewhere that while we may not receive physical healing God can give us healing in a variety of ways. My counselor has also helped me view it as “we know bad things happen, but look at what good may come out of it.” So she helps me view it in this way. I remember the first time I said this it was so weird but it’s been helping me so much. So we used my Dad’s death for this. You can replace it with anything to fit your needs. So my Dad died. That’s a fact and there is no changing that. However something good came out of that. The good that came out is I’m now able to help other people who are grieving. I also became very intuitive to other people’s feelings after Dad died. I can usually catch someone before they reach a point of becoming mad or sad. I also realize the importance of creating memories and holding on to that. Never leaving a conversation upset or angry. So it’s hard to think that way but it’s helped me heal. That no matter what -Dad died. I can see the good that came out of that or sit in the negativity.
Did God want Dad to die and create all this grief and pain? No! Dad was going to die. I’m walking this journey now. God has helped use that experience and season to help me share my story and be there for other people.
Somedays it’s easier to see that and somedays it’s harder. I’m still trying to work on it for my chronic illness. This week was tough. I couldn’t see anything good and I honestly didn’t even want to try.
There were two situations this week that wouldn’t have happened if I wasn’t sick. They happened on the same day. I was overwhelmed.
Wednesday started out as a good day. I went to work and then came home and relaxed. We socially distanced and visited with our neighbors and enjoyed the beautiful weather.
I then had to call my PCP (Primary Care Physician) because I made a mistake on my medicine. Our insurance has us do a 90 day mail order supply. It has it’s pros but it’s really hard for someone who is on 11 medications and they are to be refilled at different times. So I had just ordered a bunch of medication and I thought I had ordered this medication also. Well apparently I didn’t. We’ve had a lot going on the last few weeks. My medicine is also downstairs because when I was very depressed last year I just wanted to overdose on pills. I can’t go down steps so that’s why they are downstairs. We realized I only had a few days left on this medication. I thought we had another bottle but we didn’t. I called my doctor to send a 10 day refill to the pharmacy and then send it to the mail order.
I was talked to by the receptionist about how this isn’t good and I need to be more responsible. Then I was transferred to my nurse. Who then proceeded to talk sternly with me. Mind you I’ve only made this mistake once last year. The mail order had messed up my meds a few times last year leaving us to get small day supplies at the pharmacy. Anyways I said yes I know I made a mistake. I’ve had a lot going on this week and I don’t feel good. This nurse then tells me like I’ve told you before Abby you can’t do this. I’ve told you to put your pills in another bottle and put half in another bottle so when you’re done with that bottle you know to refill. (I’m thinking in my mind I don’t have time to manage 21 pill bottles.) Also our insurance company doesn’t let us refill it that far in advance. The nurse told me how much insurance companies frown on sending an emergency supply to the pharmacy. Then the nurse said you know you will have to pay for this out of pocket? I replied yup we know that but I need this medication. The nurse proceeded to tell me that I wasn’t responsible and I can’t miss medicine anymore. I stood up for myself on that phone call as best as I could. I quickly wrapped up the conversation because I needed to hang up to cry.
I’ve only made this mistake once. It’s hard to manage 11 meds that need to be refilled at all different times. 90 day supplies are also hard when you have a chronic illness. This nurse has been with me the last 3 years and it was going well until this year. Each appointment I was feeling angry and sad at how I was being talked to. Half the stuff the nurse talked to me about that were major concerns the doctor either said I was fine or didn’t touch on it.
The last 2 appointments have been hard. After this phone call I looked at my Mom and I said I can’t do this anymore. It’s effecting my mental health and I have to draw the line there. I have an appointment in December so I will be calling the office for a switch.
I’ve been weight shamed because I’m not losing my steroid weight gain fast enough. (News alert it’s a bit hard to do that when you physically can’t exercise & have doctor orders saying you can’t) . My doctor is aware of the weight gain and said we will just keep an eye on it. I gained 20 pounds on the steroids. He said it will eventually come off once you’ve been off of them for awhile.
I’ve been accused of not managing my depression well enough & that I burdened my family by choosing (WITH THE COUNSELOR) that the best thing was for me to stay at home during that time. The doctor was happy with the reports he was getting from the counselor and could see the improvements in me. This doctor has been with me since I was very little like toddler age.
I’ve been told I need to eat better. (I do & might I add it’s hard when you’re allergic to so many things). I was told if I eat salad to not put dressing on the salad anymore. To put the lettuce on my fork and dip it in the dressing. I can’t drench it just a really quick dip because that’s less calories.
This past year I’ve learned from my counselor there is nothing wrong with standing up for yourself and your mental health. I’m not apologizing for putting that first. I don’t need someone pointing out my flaws and telling me how bad they are. When I’m just now starting to do better and trying to focus on 1-2 things I can do so I don’t get overwhelmed.
Earlier I said I cried when I got off the phone and I did. I cried because my mind went right back to where it was last year “see Abby you aren’t good enough, you’ve made all these people mad, you can’t get your life together, you are so stupid.” My Mom and sister helped me get out of that state. Then I cried because I was tired of having a chronic illness. I didn’t sign up for this baggage. It’s a lot and is overwhelming.
I was doing better when I realized I can stand up for myself and call the office about not seeing this nurse anymore.
Before I move on to Wednesday night I want to take the time to thank healthcare workers. I’m grateful for the doctors, nurses, and phlebotomists. I’m very thankful for nurses because they are often the ones I have the most communication with. I talk to them on the phone the most and I always appreciate the care I receive.
In this situation, I am only talking about my experience with one nurse. I’m talking about it because it’s not something that’s talked about often. I think people experience this a lot more than we think and we keep quiet about it. I want you to know it’s OK to draw the line and request a different nurse. Never apologize for taking care of yourself and your mental health. No one should be treated like that.
So last week was rough with my POTS (Postural Orthostatic Tachycardia Syndrome). My heart rate was so high and rarely came under 100 during the day. Fall is just hard and when the temperatures start changing it makes it hard on our bodies. I stood up to go to the bathroom. I remember feeling really dizzy and like I was about to maybe fall. Then I passed out and next thing I knew I woke up on the floor. Thankfully I didn’t hit my head or anything on furniture. I didn’t bleed either. My knee was very sore and stiff. My body doesn’t move like that anymore so I’ve been very sore.
Due to the Fibromyalgia everything hurts double because everything is so sensitive. I’m doing better today. I physically can’t get myself up off the floor. Thankfully, my sister heard the fall because my bedroom is right above her room. I yelled for Mom who is just across the hall and they came very quickly. I also had my apple watch on so if I couldn’t get them I could call them. They helped me get up.
That just did a lot to me mentally. I haven’t fallen to the floor in a year I believe. I’ve almost fallen and caught myself on the wall or have fallen down onto the couch. It’s embarrassing and leaves you feeling defeated. It reminds you that you can’t escape having POTS. There isn’t a cure. It’s chronic.
So needless to say Wednesday was a rough day. I’ve been struggling a bit mentally because of that. I’m dusting myself off and leaning into God and my family and friends. I’m much better mentally.
I just focus on one minute at a time.
Just please remember to stand up for yourself however that looks. It’s ok to say no to someone or something to protect your mental health. Don’t apologize for taking care of your health.
“Let all that you do be done in love.” – 1 Corinthians 16:14