Stand By Me ~ The Importance of a Support System with Chronic Illness

It’s here, y’all! Friday … in all her beautiful glory! My days all run together anymore, but I do get excited for everyone else who gets to have a break from work for a little while. Time to spend doing nothing, or catching up on everything they don’t have time to do during the week. My last out of the house job I had was as a teacher, about eight years ago. It’s recent enough that I still remember, vividly, in fact, the mad dash to get housework and laundry done, plus errands … in a day and a half. I say a day and a half, because there’s really only a half day available on Sunday if you think about it. After the chaos of trying to accomplish everything before heading back in on Monday, ya gotta decompress!

I was lucky enough during that time to be healthy. That was a few years before I got my RA diagnosis. To read the backstory on that, click here. I was also lucky enough to have a spouse and a kid who pitched in when I got overwhelmed. As a housewife/SAHM for most of my marriage, housework was not my strong suit. I still stink at it haha I just think there are far better ways to spend my precious time, but that’s another post for another time. I’m not saying there wasn’t a lot of grumbling going on from both of them because there definitely was. But, my husband at least, recognized my weaknesses and did what he could.

That ability came in handy shortly before my diagnoses. My strength and stamina were quickly going downhill and my pain was increasing daily. For a while, my hubby just thought I was being lazy, and of course, there were plenty of arguments to be had over that. After the diagnoses came, there was a lot of guilt on my husband’s part, and I hate that for him. Unfortunately,  “being lazy” is something a lot of women with chronic illnesses hear. It was also a mindset that he quickly adjusted. While I felt a bit victorious in having a bonafide reason for my then-current inability to perform my stay-at-home duties, seeing how crushed my hubby was devastating. He was crushed for having thought about me in such an ugly way. He was crushed because I was in true pain and he wasn’t necessarily my knight in shining armor when I needed him to be. He was crushed because he knew what I was in for. My mom had RA, so he was fully aware of the road ahead.

If you don’t have a partner who understands your dis-ability (hyphenated purposely), I strongly suggest taking them to every doctor’s appointment possible. It is vital that they understand, as much as they can, exactly what you are going through, and will be going through. It’s one thing for you to tell your partner, but it’s a whole different ball of wax, sometimes, if it comes from a doctor, especially if you find yourself with a less than supportive partner. This isn’t just for partners. This applies to anyone important in your life, be it parents, siblings, or friends.

There will be times in your journey when even the simplest of tasks is impossible. I underwent some brain testing a few years ago. There was a possibility of a seizure disorder, on top of everything else, (thank goodness it wasn’t seizures). I underwent EEG testing, which required my brain to be mapped out on my scalp. The technician used a type of soft grease pencil. She had to press a bit hard and, of course, it triggered a fibromyalgia flare-up. By the time I got home, I was in a full-blown flare, crying near hysterically from the pain. I barely got myself out of the car and into the house. When I am in such a state, the only thing I want is a hot bath. I couldn’t even undress, or lower myself into the tub. My hubby had to undress me, help me into the tub, help me out, dry me off and re-dress me, then put me to bed. I was basically a 200-pound infant.

The physical toll is bad enough, but the emotional toll can be much, much worse. I remember the day I started methotrexate, my hubby happened to have the day off. He took me to breakfast. I was supposed to take my medicine with food, so I pulled out my little baggie of five deceptively tiny pills. I sat there at our table, staring down at this baggie of life-changing medication and I started to cry. I was terrified of these tiny, tiny pills. Would my hair fall out? Would they make me ill? What other damage might these cause? Why did I have to get RA? What had I done to deserve such a horrid fate? What had I done to deserve such a punishment? How could such tiny pills have such a HUGE impact?? My hubby reached across the table and just held my hand. There were tears in his eyes too, as he told me everything was going to be okay. He held me and told me everything would be okay, as I stood in the bathroom, holding handfuls of hair that had just fallen out from another mediation. He held me and told me everything would be alright as we faced a possible liver cancer diagnosis, even though I could see the absolute terror in his eyes. I cannot even imagine having to go through any of this alone.

There are plenty of days that find me unable to do much more than move from the couch to the bathroom and back. That means no laundry, no cooking, no nothing. My family understands and we have those “fend for yourself” nights. Or, if my hubby is feeling particularly brave, he will attempt to cook dinner. He’s gotten pretty good at laundry, and cleaning too!

Since mid-January, I’ve broken a rib randomly, had a colonoscopy and endoscopy, several X-rays, an MRI, and a CT scan. This is my life. Recently, I had to have new images of my liver taken. I’m being sent to a medical university because all of my doctors are baffled by whatever it is my liver is doing. My family doc, rheumatologist, gastroenterologist, and oncologist have NO idea what is going on. I can’t tell you how scary it is for FOUR doctors to be stumped about what your body is doing. My RA treatment has been on hold for TWO years because of this. My hubby will be going with me on Monday to get the results, and I cannot tell you how much I need his strength on those visits.

I don’t know what condition I would be in emotionally if I had to go through this alone, or if I had a family that dismissed my health complications. I cannot tell you how many women DO NOT have a supportive family. I have read hundreds, if not thousands, of their stories in RA support groups. Their stories are so heartbreaking that I actually felt guilty because my family has been so amazing.

If you suffer from any chronic disease/disability and your family doesn’t support you, my heart goes out to you. Keep trying to find ways to get them to understand. Take them to appointments, email them links to articles, print out studies for them to read, find a local support group and go together. Support from family and friends is critical, not only to our physical health but our mental health, as well. If you need support, I am here for you, to the best of my ability. You can contact me here and I will contact you back. These diseases are too hard to go through alone ♥

Carrie♥

@ 2018 Look Good, Feel Good

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